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Rett syndrome

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Rett syndrome (RTT) is a disorder of the nervous system. This condition leads to developmental problems in children. It mostly affects language skills and hand use.

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The Assistance Fund Opens New Program for Rett Syndrome

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The Assistance Fund Opens New Program for Rett Syndrome

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The Assistance Fund Opens New Program for Rett Syndrome - The Assistance Fund

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FOR IMMEDIATE RELEASE Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Rett Syndrome ORLANDO, Fla., May 1, 2023 —The Assistance Fund…

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We know receiving a Rett syndrome diagnosis can feel overwhelming, but you are not alone on this journey. IRSF is here to guide you with resources, connections, and unwavering support every step of the way. It’s natural to feel uncertain about what to do next. These steps provide practical guidance to help you begin this journey with confidence and hope.

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Newly Diagnosed | International Rett Syndrome Foundation

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Just diagnosed with Rett syndrome? Find support, resources, and a community ready to help you navigate the journey.

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2025 Mayo Foundation for Medical Education and Research (MFMER)

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Diagnosis

Diagnosing Rett syndrome involves careful observation of your child's growth and development and answering questions about medical and family history. The diagnosis is usually considered when slowing of head growth is noticed or loss of skills or developmental milestones occur.

For a diagnosis of Rett syndrome, other conditions with similar symptoms must be ruled out.

Evaluating other causes for the symptoms

Because Rett syndrome is rare, your child may have certain tests to identify if other conditions are causing some of the same symptoms as Rett syndrome. Some of these conditions include:

Other genetic disorders

Autism

Cerebral palsy

Hearing or vision problems

Metabolic disorders, such as phenylketonuria (PKU)

Disorders that cause the brain or body to break down (degenerative disorders)

Brain disorders caused by trauma or infection

Brain damage before birth (prenatal)

What tests your child needs depends on specific signs and symptoms. Tests may include:

Blood tests

Urine tests

Imaging tests such as magnetic resonance imaging (MRI) or computerized tomography (CT) scans

Hearing tests

Eye and vision exams

Brain activity tests (electroencephalograms, also called EEGs)

Criteria for diagnosis

A diagnosis of classic Rett syndrome includes these core symptoms:

Partial or complete loss of purposeful hand skills

Partial or complete loss of spoken language

Walking abnormalities, such as problems walking or not being able to walk

Repetitive purposeless hand movements, such as hand-wringing, squeezing, clapping or tapping, putting hands in the mouth, or washing and rubbing movements

Additional typical symptoms can support the diagnosis.

Diagnostic criteria for atypical or variant Rett syndromes may vary slightly, but the symptoms are the same, with varying degrees of severity.

Genetic testing

If your child's doctor suspects Rett syndrome after evaluation, he or she may recommend a genetic test (DNA analysis) to confirm the diagnosis. The test requires drawing a small amount of blood from a vein in the arm. The blood is then sent to a lab, where technicians examine your child's DNA for abnormalities and clues as to the cause and severity of the disorder. Testing for mutation of the MEPC2 gene confirms the diagnosis.

Treatment

Although there is no cure for Rett syndrome, treatments are directed toward symptoms and providing support, which may improve the potential for movement, communication and social participation. The need for treatment and support doesn't end as children become older - it's usually necessary throughout life. Treating Rett syndrome requires a team approach.

Treatments that can help children and adults with Rett syndrome include:

Regular medical care. Management of symptoms and health problems may require a multispecialty team. Regular monitoring of physical changes such as scoliosis and GI and heart problems is needed.

Medications. Though medications can't cure Rett syndrome, they may help control some signs and symptoms associated with the disorder, such as seizures, muscle stiffness, or problems with breathing, sleep, the gastrointestinal tract or the heart.

Physical therapy. Physical therapy and the use of braces or casts can help children who have scoliosis or require hand or joint support. In some cases, physical therapy can also help maintain movement, create a proper sitting position, and improve walking skills, balance and flexibility. Assistive devices may be helpful.

Occupational therapy. Occupational therapy may improve purposeful use of the hands for activities such as dressing and feeding. If repetitive arm and hand movements are a problem, splints that restrict elbow or wrist motion may be helpful.

Speech-language therapy. Speech-language therapy can help improve a child's life by teaching nonverbal ways of communicating and helping with social interaction.

Nutritional support. Proper nutrition is extremely important for normal growth and for improved mental, physical and social abilities. A high-calorie, well-balanced diet may be recommended. Feeding strategies to prevent choking or vomiting are important. Some children and adults may need to be fed through a tube placed directly into the stomach (gastrostomy).

Behavioral intervention. Practicing and developing good sleep habits may be helpful for sleep disturbances.

Support services. Academic, social and job-training services may help with integration into school, work and social activities. Special adaptations may make participation possible.

Alternative medicine

A few examples of complementary therapies that have been tried in children with Rett syndrome include:

Music therapy

Massage therapy

Hydrotherapy, which involves swimming or moving in water

Animal-assisted therapy, such as therapeutic horseback riding

Although there's not much evidence that these approaches are effective, they may offer opportunities for increased movement and social and recreational enrichment.

If you think alternative or complementary therapies might help your child, talk to your doctor or therapist about the possible benefits and risks, and how the approach might fit into the medical treatment plan.

Coping and support

Children and adults with Rett syndrome need help with most daily tasks, such as eating, walking and using the bathroom. This constant care and disturbed sleep can be exhausting and stressful for families, and can impact the health and well-being of family members.

To better cope with the challenge:

Find ways to relieve stress. It's natural to feel overwhelmed at times. Talk about your problems with a trusted friend or family member to help relieve your stress. Take some time for yourself doing something you like to recharge your battery.

Arrange for outside help. If you care for your child at home, seek the help of outside caregivers who can give you a break from time to time. Or you may consider residential care at some point, especially when your child becomes an adult.

Connect with others. Getting to know other families facing problems similar to yours can help you feel less alone. Look for online support and information from organizations such as RettSyndrome.org.

Preparing for your appointment

Your child's doctor will look for developmental problems at regular checkups. If your child shows any symptoms of Rett syndrome, she or he will likely be referred to a pediatric neurologist or developmental pediatrician for testing and diagnosis.

Here's some information to help you get ready for your child's appointment. If possible, bring a family member or friend with you. A trusted companion can help you remember information and provide emotional support.

What you can do

Before your appointment, make a list of:

Any unusual behavior or other signs. The doctor will examine your child carefully and watch for slowed growth and development, but your daily observations are very important.

Any medications that your child takes. Include any vitamins, supplements, herbs and over-the-counter medicines, and their dosages.

Questions to ask your child's doctor. Don't be afraid to ask questions when you don't understand something. If you run out of time, ask to speak with a nurse or leave a message for the doctor.

Questions to ask the doctor might include:

Why do you think my child does (or doesn't) have Rett syndrome?

Is there a way to confirm the diagnosis?

What are other possible causes of my child's symptoms?

If my child does have Rett syndrome, is there a way to tell how severe it is?

What changes can I expect to see in my child over time?

Can I take care of my child at home, or will I need to look for outside care or additional in-home support?

What kind of special therapies do children with Rett syndrome need?

How much and what kinds of regular medical care will my child need?

What kind of support is available to families of children with Rett syndrome?

How can I learn more about this disorder?

What are my chances of having other children with Rett syndrome?

What to expect from your doctor

Your doctor may ask you questions such as:

When did you first notice your child's unusual behavior or other signs that something may be wrong?

What could your child do before that she or he can no longer do?

How severe are your child's signs and symptoms? Are they getting progressively worse?

What, if anything, seems to improve your child's symptoms?

What, if anything, appears to worsen your child's symptoms?

Your doctor will ask additional questions based on your responses and your child's symptoms and needs. Preparing and anticipating questions will help you make the most of your appointment time.

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Diagnosing Rett syndrome involves careful observation of your child's growth and development and answering questions about medical and family history. The diagnosis is usually considered when slowing of head growth is noticed or loss of skills or developmental milestones occur. For a diagnosis of Rett syndrome, other conditions with similar symptoms must be ruled out.

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FDA approves first treatment for Rett Syndrome

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FDA approves first treatment for Rett Syndrome

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FDA has approved Daybue (trofinetide) oral solution as the first treatment for Rett syndrome, a rare, genetic neurological disorder. Daybue is approved for the treatment of Rett syndrome in adults and children 2 years of age and older.

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Action

FDA has approved Daybue (trofinetide) oral solution as the first treatment for Rett syndrome, a rare, genetic neurological disorder. Daybue is approved for the treatment of Rett syndrome in adults and children 2 years of age and older.

Patients take Daybue either orally or via gastrostomy tube. The recommended dose is based on patient weight. Daybue is taken twice daily, morning and evening, with or without food.

Disease or Condition

Rett syndrome is a rare, genetic neurological and developmental disorder that affects the way the brain develops. Patients with Rett syndrome experience a progressive loss of motor skills and language. Most babies with Rett syndrome seem to develop as expected for the first six months of life. These babies then lose skills they previously had attained at approximately six to 18 months of age - such as the ability to crawl, walk, communicate, or use their hands. The hallmark of Rett syndrome is near constant repetitive hand movements, such as rubbing or clapping. Rett syndrome leads to severe impairments affecting nearly every aspect of life, including the ability to speak, walk, eat, and breathe.

The syndrome primarily affects females (1 in 10,000) and even more rarely affects males.

Effectiveness

The efficacy and safety of Daybue was evaluated in a randomized, double-blind, placebo-controlled, 12-week study (Study 1; NCT04181723) of patients with Rett syndrome five to 20 years of age. Patients were randomized to receive Daybue (N=93) or matching placebo (N=94) for 12 weeks. The dose of Daybue was based on patient weight to achieve similar exposure in all patients.

The co-primary efficacy measures were change from baseline in the Rett Syndrome Behavior Questionnaire (RSBQ) total score and the Clinical Global Impression-Improvement (CGI-I) score at week 12. The RSBQ is a 45-item rating scale completed by the caregiver that assesses a range of signs and symptoms of Rett syndrome. Lower scores represented lesser severity in signs and symptoms of Rett syndrome. The CGI-I is a 7-point scale rated by clinicians to assess how much a patient's illness has improved or worsened. A decrease in CGI-I score indicates improvement.

Patients treated with Daybue demonstrated a statistically significant difference compared to placebo on the co-primary efficacy endpoints, as measured by the change from baseline in the RSBQ total score and the CGI-I score at week 12.

Safety Information

Most common adverse reactions, occurring in at least 10% of Daybue-treated patients and twice the rate of placebo, included diarrhea (81%) and vomiting (27%).

See full prescribing information for additional information on risks associated with Daybue.

Designations

Daybue received priority review, orphan drug and fast track drug designations.

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FDA approves first treatment for Rett Syndrome

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FDA has approved Daybue (trofinetide) oral solution as the first treatment for Rett syndrome, a rare, genetic neurological disorder.

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Boletin Informativo de Gulf Central Early Steps. Spanish 01.2025

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Gulf Central Early Steps Newsletter 01.2025

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Thursday, March 4, 2021

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Who Gets WIC?To be eligible for the WIC program, applicants must meet all of the  eligibility requirements

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In general, WIC is administered in each state or territory by state health departments or tribal organizations.

Who Gets WIC?

To be eligible for the WIC program, applicants must meet all of the following eligibility requirements:

Categorical

Residential

Income

Nutrition Risk (View details about WIC's eligibility requirements.)

Contact the WIC State or Local Agency

Contact the WIC state or local agency serving your area to schedule an appointment. Applicants will be advised about what to bring to the WIC appointment to help determine eligibility. Many of the state agencies listed provide a toll-free number for you to call and/or a website about the WIC program operating in that area.

Length of Participation

WIC is a short-term program. Therefore, a participant will "graduate" at the end of one or more certification periods. A certification period is the length of time a WIC participant is eligible to receive benefits. Depending on whether the individual is pregnant, postpartum, breastfeeding, an infant, or a child, an eligible individual usually receives WIC benefits from 6 months to a year, at which time s/he must reapply.

Waiting List/Priority System

Sometimes WIC agencies do not have enough money to serve everyone who needs WIC or calls to apply. When this happens, WIC agencies must keep a list, called a waiting list, of individuals who want to apply and are likely to be served. WIC agencies then use a special system, called a Priority System, to determine who will get WIC benefits first when more people can be served. The purpose of the priority system is to make sure that WIC services and benefits are provided first to participants with the most serious health conditions such as anemia (low blood levels), underweight, history of problems during pregnancy. Learn about the Waiting List/Priority System.

Moving

WIC participants who move from one area or state to another are placed at the top of a waiting list when they move and are also served first when the WIC agency can serve more individuals. WIC participants who move can continue to receive WIC benefits until their certification period expires as long as there is proof that the individual received WIC benefits in another area or state. Before a participant moves, they should tell the WIC office. In most cases, WIC staff will give the participant a special card which proves that the individual participated in the WIC program. When the individual moves, they can call the new WIC office for an appointment and take the special card to the WIC appointment in the new area or state.

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In general, WIC is administered in each state or territory by state health departments or tribal organizations. Who Gets WIC? To be eligible for the WIC program, applicants must meet all of the following eligibility requirements: Categorical Residential Income Nutrition Risk (View details about WIC's eligibility requirements.)

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The WIC program is designed to serve certain categories of women, infants and children.

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WIC Eligibility Requirements | Food and Nutrition Service

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Don't miss out on the latest updates and news in our community. Check out our newsletter now! 

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Don't miss out on the latest updates and news in our community. Check out our newsletter now! 

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Parents often wonder what to expect when it comes to their child’s development

Babies and toddlers grow and develop at their own pace, but there are certain activities – such as smiling for the first time, standing and taking their first steps – that your child should be able to do once they reach specific ages. These skills are called developmental milestones. If you’re worried your child is not developing these skills on time, Early Steps can help.

Children can be referred to Early Steps in various ways. Referrals can be submitted by anyone involved in the care of the child, including parents/caregivers and physicians. To be enrolled in Early Steps, your child must first be found eligible.

In addition to the eligibility criteria below, children with certain documented physical or mental at-risk conditions are also eligible for a limited scope of services.

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Parents often wonder what to expect when it comes to their child's development

Babies and toddlers grow and develop at their own pace, but there are certain activities - such as smiling for the first time, standing and taking their first steps - that your child should be able to do once they reach specific ages. These skills are called developmental milestones. If you're worried your child is not developing these skills on time, Early Steps can help.

Children can be referred to Early Steps in various ways. Referrals can be submitted by anyone involved in the care of the child, including parents/caregivers and physicians. To be enrolled in Early Steps, your child must first be found eligible.

In addition to the eligibility criteria below, children with certain documented physical or mental at-risk conditions are also eligible for a limited scope of services.

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Eligibility & Screening - FDOH Early Steps

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Review the eligibility criteria and screening process required to enroll a child in Florida's Early Steps program.

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Every child grows and develops at their own pace, but research shows that a child’s first three years are the most important time for learning. Florida’s Early Steps Program provides early intervention services to eligible infants and toddlers, from birth to 36-months, with developmental delays, disabilities and at-risk conditions.

We help families build on their child’s individual strengths and provide support to meet each child’s unique needs. Getting help early puts your child on the right path to learn and develop at their full potential.

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Every child grows and develops at their own pace, but research shows that a child's first three years are the most important time for learning. Florida's Early Steps Program provides early intervention services to eligible infants and toddlers, from birth to 36-months, with developmental delays, disabilities and at-risk conditions.

We help families build on their child's individual strengths and provide support to meet each child's unique needs. Getting help early puts your child on the right path to learn and develop at their full potential.

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Learn about Early Steps and early intervention services for children with developmental delays, disabilities and at-risk conditions.

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Have questions? We can help you find the answer.

Here you can find state and national resources and information for families of children with developmental delays, disabilities and special health care needs. Please start by selecting a category of interest below to display related resources.

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Here you can find state and national resources and information for families of children with developmental delays, disabilities and special health care needs. Please start by selecting a category of interest below to display related resources.

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Parents and caregivers, you are your child’s first and most important teachers

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Family participation is essential to Early Steps. Together with families, we address each child’s unique needs and support their development.

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Celebrate your child’s growth  - FDOH Early Steps

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Early Steps provides free early intervention services to infants and toddlers, from birth to 36 months, with developmental delays, disabilities and at-risk conditions.

Celebrate your child's growth

There's no better feeling than watching your child grow and discover the world around them. Mark your baby's first year by downloading the free monthly milestone cards below!

When it comes to your child's growth and development, you're not alone

Florida's Early Steps program is here to help. We work closely with your family to provide early intervention services where your child lives, learns and plays.

Early Steps supports families and gives parents the confidence to advocate for their child. We understand that each child is unique, which is why we build on their individual strengths to form a plan that evolves as your child grows and develops.

Early Steps Program Families Say:

Before Early Steps, our daughter had one therapist who we had to travel to see. We were always missing appointments because of schedule conflicts and issues with traveling. Once we got in with Early Steps, she got more of the therapy she desperately needed. They came to our house, making scheduling a lot easier. Early Steps has made everything so much easier. We have a set schedule every week, which makes appointment setting a breeze, rather than the hassle it used to be.

Early Steps Parent

Our service coordinator has been by far the cornerstone of our daughter's treatments. We could not have made it this far without her. She has, on many occasions, gone above and beyond her duties and made herself available to us for any questions or concerns involving our daughter's development. She, as well as the entire Early Steps staff, has surpassed all our expectations. We are eternally grateful for all their hard work.

Early Steps Parent

Before he was two years old, we noticed our son had difficulty communicating and wasn't saying any words. He was diagnosed with Autism and we began receiving services through Early Steps. Not only has his vocabulary grown exponentially, he is starting to use short, simple sentences. We credit our service coordinator's efforts and Early Steps for our son's encouraging and measurable progress.

Early Steps Parent

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Early Steps provides free early intervention services to infants and toddlers with developmental delays, disabilities and at-risk conditions.

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Developing the IFSP

Some of the topics that are discussed and used to develop an Individualized Family Support Plan are:

How your child is growing and learning.

The immediate needs of your child and family as it relates to your child's development.

Your family's concerns, priorities and resources.

Your family's routines, schedules and normal environments.

Goals and outcomes your family has for your child and the services needed to assist you in reaching them.

Activities that will help your child transition out of the Early Steps program.

Based on what is identified in the IFSP, Early Steps then coordinates early intervention resources and services to meet your family and child's needs.

If you have questions about the Individualized Family Support Plan, please contact your Service Coordinator or Family Resource Specialist.

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Individualized Family Support Plans - FDOH Early Steps

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Early Steps provides each family with an individualized service plan designed to enhance their child's development.

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Playgroup Invitation!

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Moving Knowledge, Not People Through telementoring, ECHO creates access to high-quality specialty care in local communities.

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ECHO Autism " Bringing the Best Autism Care to Local Communities

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ECHO Autism: Through telementoring, ECHO creates access to high-quality specialty care in local communities. Autism resources for parents and professionals.

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Feeding problems are estimated to occur in up to 25% of normally developing children. Feeding problems include the inability or refusal to eat certain foods and may lead to nutrition problems and other developmental and psychological issues. Early diagnosis and management are important.

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Feeding problems are estimated to occur in up to 25% of normally developing children. Feeding problems include the inability or refusal to eat certain foods and may lead to nutrition problems and other developmental and psychological issues. Early diagnosis and management are important.

Healthcare professionals can diagnose and treat various related problems such as:

Food selectivity ('pickiness')

Food refusal

Sucking, swallowing, or chewing difficulties

Vomiting

Colic

Inability to move to textured foods

Delay in self-feeding

Tantrums

Regurgitating and re-chewing (rumination)

Eating nonfoods (pica)

Related News

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Including the inability or refusal to eat certain foods, possibly leading to nutrition problems and other developmental and psychological issues.

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Picky Eating: A Toddler's Approach to Mealtime

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Picky Eating: A Toddler's Approach to Mealtime

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Monday, September 11, 2023

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Research-Based Mealtime Hacks for “Picky” Eaters

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Research-Based Mealtime Hacks for “Picky” Eaters

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Here’s what the research says about teaching our littlest food critics to try new foods.

“Picky” eating behavior — being unwilling to try new or non-favorite foods — usually starts at about two years of age. This is the same time toddlers begin to establish their independence in other areas of their lives (not wanting to take a bath, hold hands in a parking lot, sit in the grocery cart, etc.). It’s also a point when their weight gain — which was rapid over the first two years — is starting to slow, so toddlers experience a decreased appetite. This is why picky eating is more of a typical milestone than a challenging behavior.

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"Picky" eating behavior - being unwilling to try new or non-favorite foods - usually starts at about two years of age. This is the same time toddlers begin to establish their independence in other areas of their lives (not wanting to take a bath, hold hands in a parking lot, sit in the grocery cart, etc.). It's also a point when their weight gain - which was rapid over the first two years - is starting to slow, so toddlers experience a decreased appetite. This is why picky eating is more of a typical milestone than a challenging behavior.

One way of thinking about feeding

Dealing with picky eaters can sometimes feel stressful, frustrating, annoying, and worrisome-all in the same meal. It can help to think about what you and the child are responsible for when it comes to mealtime:

It's a parent's job to provide a variety of healthy foods in age-appropriate servings at mealtimes and snack times.

It's the child's job to decide what, and how much, to eat.

This approach takes a lot of the emotion, stress, and struggle out of feeding. It seems so simple, but does it work? Yes. A research study found that children who weren't pressured about what/how much they ate actually ate more than the children in the study who were pressured to eat.

Mealtime hacks for picky eaters

So, what does the research say about teaching our littlest food critics to try new foods? Here are some tips to try with your family.

1. Pair new foods with familiar ones. If your toddler loves ketchup but isn't sure about brussels sprouts, pull off the leaves of one sprout to make it easier for your toddler to dip and eat. (My daughter will eat almost anything dipped in ketchup.)

2. Serve one food item at each meal that you know your child likes. Children build on the familiar and preferred foods they know best.

3. Start small! Want to introduce spinach to a child? Try not to plop a big spoonful on the child's plate. Start with one tiny leaf and work up from there.

4. Use positive peer pressure. Research shows that children are more likely to eat fruits and vegetables if they see their parents eat them. Another study of preschoolers found that children were more likely to prefer foods they saw other children eat.

5. Nobody likes to be forced to eat. Ditch the "clean your plate" rule and forget the "two more bites to get dessert" bribe. When children learn what "full" feels like and decide when to stop eating on their own, they are more likely to maintain a healthy weight over the long-term.

6. Don't give up. You may have heard that it can take between 10-15 tries with a new food before a child will eat it. So-sigh-hang in there. It'll happen eventually.

7. Schedule mealtimes. Plan for three meals a day and two snacks at pretty consistent times. This helps to ensure that children are hungry when it's time to eat, making it more likely they'll try new foods that are offered.

8. Talk to your health care provider about how much (and what kind of) liquids a child needs each day. Avoid letting children fill up on milk or juice-this can make them less hungry for food at mealtimes.

9. Little kids, little tummies: keep serving sizes right for their age. Offer age-appropriate portions: about a tablespoon of each food for each year of your child's age. So, if you have a two-year-old, you would offer two tablespoons of each food served.

10. Let it end. Mealtimes for toddlers and preschoolers shouldn't be longer than 15-20 minutes. Let children play nearby while you finish up.

11. Give fruits and veggies better names. A study recently tested whether fun names (like "power punch broccoli") made vegetables more appealing to elementary school students. Answer: Yes. Case in point-when my son was three, he loved ham and hated turkey. Calling deli turkey "white ham" was a game changer!

12. Make mealtime a positive experience. Turn off screens. Talk to one another. Tell stories. Ask questions: what's the child favorite color, favorite animal?

13. Food prep is fun-give children a way to help out. The more children touch and help prepare foods (especially fruits and veggies), the more likely they are to choose them later as a snack.

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Research-Based Mealtime Hacks for "Picky" Eaters

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Picky eating behavior usually starts at about two years old. Here are some research-based mealtime hacks for picky eaters.

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Do you know a “picky eater”? “Picky” eating is when a child (or adult) refuses foods often or eats the same foods over and over. Picky eating usually peaks in the toddler and preschool years. Many caregivers worry that their picky eater is not getting enough nutrition to grow. But in most cases, they are. Here’s how to handle picky eating in toddlers.

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Picky Eating in Toddlers

Picky eating often surfaces around one year-a time when many children are beginning to feed themselves. They can now choose what and how much to eat, giving them some degree of control over their lives. So some days they may eat a lot of everything. Other days they may not seem to eat much at all.

In addition, while children usually grow a lot and quickly in their first year, growth slows down in the second year. Toddlers are also learning lots of new skills, like talking, walking, running, climbing, and more. During a time of great change, children often seek "sameness" as much as possible, including sticking to the same small group of foods. This consistency can help them feel safe and secure during a period of rapid change.

Parents also need to be in touch with their own expectations about how much their toddler "should" eat. It is unrealistic to expect a toddler to eat a large amount of food at each meal everyday; after all, a toddler's stomach is approximately the same size as her clenched fist (Martins, 2002).

Ellyn Satter, MS RD LCSW BCD, a researcher and practitioner in the field of pediatric feeding practices, explains that both parents and children have their own "jobs" to do when it comes to eating. Parents are responsible for providing healthy foods at meal and snack-times. Children are responsible for what and how much they eat. This helps children learn what it feels like to be hungry and then full-and how to make healthy choices based on this awareness, i.e., eating when hungry and stopping when full.

The Role of Parents

Research has found that parents' food preferences are linked to their children's food preferences (Borah-Giddens & Falciglia, 1993). This is probably not a big surprise since we are more likely to prepare the foods that we enjoy, so our children are more familiar with that group of foods than others. Familiarity with foods is key, as a child may need to be exposed to new foods more than 10 times before they try it.

What can you do to help a child enjoy a range of foods?

Eat a range of healthy foods yourself. Make sure that your own choices are in line with the foods you want the child to eat and enjoy.

Prepare meals together. Having a hand in making the meal increases the chances that the child will taste her "creation." Have your little one assist with measuring, pouring, or stirring.

Avoid showing disgust or disinterest when trying new foods. A study found that mothers who showed (with their facial expressions, body language, or words) that they didn't want to try a new food had children who also tended to refuse new foods (Carruth & Skinner, 2000). In short, your young child will probably be less willing to try something new if you haven't tasted it. And if you are a "picky eater" yourself, then a young child is likely to imitate you in this behavior, just as she imitates the way you talk on the phone or the way you wave good-bye to her each morning at child care.

What to Do About Picky Eating in Toddlers

There are many reasons why a child may be choosier than usual at mealtime. Listed below are some of the most common causes of picky eating and ideas for how to respond. (Adapted from Lerner & Parlakian, 2007).

Some children are sensitive to the taste, smell, or texture of food. You can:

Offer several healthy food choices-among the foods the child does like-at each meal.

Gently but frequently offer new kinds of foods. Children need to be offered a new food as many as 10-15 times before they will eat it.

Track a child's food sensitivities and keep them in mind when preparing meals. Does the child have trouble with "mushy" foods? Then offer apple slices instead of applesauce, or a baked potato instead of mashed. If you'd like the child to try a "mushy" food, combine it with a crunchy food that she does like. Give her an animal cracker to dip in the applesauce.

Talk to the child's health care provider about any nutritional concerns you may have.

Some children are simply less likely to try new things based on their temperament-their individual way of approaching the world. You can:

Put new foods next to foods the child already likes. Encourage him to touch, smell, lick, or taste the new food.

Avoid becoming a short-order cook and preparing special meals for a child. But do make sure that at each meal, there is something he knows and likes on the plate. Also give him what the rest of the family is eating in toddler-sized portions. Over time, these choices will become as liked and familiar as her favorite mac-n-cheese.

Gently but frequently offer new kinds of foods. Children need to be offered a new food as many as 10-15 times before they will eat it.

Use healthy dips such as yogurt, hummus, ketchup, or low-fat salad dressings to encourage children to eat fruits, vegetables, and meats.

Involve a child in preparing the meal (like dropping cut-up fruit into a bowl for fruit salad). Handling, smelling, and touching the food helps a child get comfortable with the idea of eating it.

Some children can seem "picky" because they want to feed themselves. You can:

Offer safe "finger foods" that a child can feed herself.

Offer a child a spoon to hold while you're feeding her. This lets her feel in control.

Let the child decide where foods go on her plate-the peas there, the turkey there. If you'd like, you can also let a child serve herself (put your hand over hers to help her handle the bigger serving spoons).

Some children are very active. They may seem picky because they don't like sitting for long. You can:

Set a child's meal out before he sits down.

Keep mealtimes short-10 minutes or so. Let the child get up when he indicates he is finished eating.

Put healthy foods, such as a bowl of strawberries or bananas, where the child can reach them so when he gets hungry he can easily get to good foods.

Some children have medical issues that make it difficult to swallow or digest certain foods. You can:

Seek an evaluation by a health care provider. Sometimes children need special help with feeding.

What NOT to Do About Picky Eating

There are two big pitfalls to avoid in order to encourage healthy eating behavior. They include:

Forcing a child to eat. The fact is that forcing children to eat usually leads to the child eating less. Forcing also teaches children to rely on others to tell them how much to eat and what they are feeling. This does not lead to healthy eating habits or good self-esteem. In fact, some research has shown that forcing children to eat actually can make picky eating behavior worse (Sanders, Patel, Le Grice, & Shepherd, 1993).

When it comes to eating, it can be helpful to see it as you and your child each having your own jobs. Your job is to provide your child with healthy food choices and pleasant meal and snack times. It is the child's job to decide which of these healthy foods to eat and how much to eat. When you approach feeding this way, a child learns to listen to his body and make healthy food choices. It also leads to fewer power struggles between parent and child around food (Satter, 1990).

Nagging or making deals with a child. "Just two more bites, just two more bites!" "If you eat your vegetables, you will get dessert." Strategies like these don't work in the long run. Children who learn to make deals about eating quickly learn to make deals and ask for rewards for doing other things-like brushing teeth or getting their shoes on. And soon they won't do anything unless there is a reward for it!

What About Dessert?

Ah, dessert. Many parents struggle with what to do about sweets. Daniel, father of a toddler and kindergartner, shared his family's dilemma:
I'm fine with letting them choose how much they want to eat. But after they've basically eaten nothing, then they want dessert. I feel like I'm getting taken advantage of if I give it to them. If I try to get them to eat more, it's worse because we end up negotiating the entire meal: "Okay, if you have 3 more bites of meat, you can have a cookie." It's gotten to the point that my 6-year-old will ask at the beginning of the meal, "How much do I need to eat in order to have a treat?"
How do you handle the "cookie cravings" in your little ones who insist they are done with dinner (after 3 noodles) but still have room for something sweet? The following are some ideas for handling this common dilemma.

Serve a small treat with a child's dinner (for example, one cookie or a small muffin). Yes, he may eat it first or he may eat only that. That's okay. Over time, your child will come to see that sweets are part of a meal, but not the only part. He will get hungry for other foods. Soon, you might even find that he leaves the sweet on the side opting to eat the healthier foods first.

Serve a small treat at the end of the meal regardless of how much a child has eaten. Again, this teaches the child that sweets, when eaten in moderate servings, have their place. It also takes away the power of the dessert being a big, special reward that they are constantly pining away for. When you avoid negotiating "if you eat this, you get that", you also eliminate a big power struggle. You may find that the child eats more on his plate as a result.

Eliminate sweets altogether. Some families believe that cookies, cakes, etc. are not appropriate for their family's diet. Instead, try offering fresh fruit or cheese to end the meal.

References

Borah-Giddens, J., & Falciglia, G. A. (1993). A meta-analysis of the relationship in food preferences between parents and children. Journal of Nutrition Education, 25, 102-107.

Carruth, B. R., & Skinner, J. D. (2000). Revisiting the picky eater phenomenon: Neophobic behaviors of young children. Journal of the American College of Nutrition, 19, 771-780.

Gibbs, J. (2006, Jan-Mar). Working with picky eaters: The toddler years. Family and Consumer Sciences Quarterly Media Packet, Michigan State University Extension, East Lansing, MI.

Lerner, C., & Parlakian, R. (2007). Healthy from the start: How feeding nurtures your young child's body, heart, and mind. ZERO TO THREE: Washington, DC. Available online.

Martins, Y. (2002). Try it, you'll like it! Early dietary experiences and food acceptance patterns. The Journal of Pediatric Nutrition and Development, 98, 12-20.

Sanders, M. R., Patel, R. K., Le Grice, B., & Shepherd, R. W. (1993). Children with persistent feeding difficulties: An observational analysis of the feeding interactions of problem and non-problem eaters. Health Psychology, 12, 64-73.

Satter, E. (1990). The feeding relationship: Problems and interventions. Journal of Pediatrics, 117 (Suppl.), 181-190.

The article below was also useful background in creating this resource: Cathey, M., & Gaylord, N. (2004). Picky eating: A toddler's approach to mealtime. Pediatric Nursing, 30(2), 101-109. Available online at: http://www.medscape.com/viewarticle/475189_1
If you are worried or have questions about your child's growth or nutrition, it is a good idea to talk to your child's health care provider. Keep in mind, however, that as long as your child is not losing weight and has the energy to play and interact, it is likely that he is eating enough to support his growth.

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Is your child a picky eater? Picky eating usually peaks in the toddler and preschool years. Here's how to handle picky eaters.

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Several resources for dealing with and addressing picky eating

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Several resources for dealing with and addressing picky eating

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Picky Eaters

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Picky eating is a common behavior among toddlers. This page contains several resources for dealing with and addressing picky eating.

Healthy Tips for Picky Eaters Source: U.S. Department of Agriculture, FNS
This handout provides tips for coping with picky eating, getting a child to try new foods, and helping a child develop healthy eating habits.

Phrases that HELP and HINDER Source: U.S. Department of Agriculture, CNPP
This handout provides positive phrases to use that can help develop healthy eating habits.

Kitchen Helper Activities Source: U.S. Department of Agriculture, CNPP
This handout provides age-appropriate tasks for each year between two and five year olds so they can help out in the kitchen. Children are less likely to reject foods they help make.

Picky Eaters Source: American Academy of Pediatrics
Reviews typical toddler eating behavior, tips for handling/addressing this issue, and foods to avoid due to the risk of choking. This site is also available in Spanish.

How to Handle Picky Eaters Source: Zero to Three
Discusses this behavior in toddlers, reviews the parents' role, and provides suggestions for how to, and how not to, respond to picky eating.

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Picky eating is a common behavior among toddlers. This page contains several resources for dealing with and addressing picky eating.Healthy Tips for Picky Eaters Source: U.S. Department of Agriculture, FNS This handout provides tips for coping with picky eating, getting a child to try new foods, and helping a child develop healthy eating habits.Phrases that HELP and HINDER Source: U.S.

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Feeding a Picky Eater: The Do's and Don'ts

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Feeding a Picky Eater: The Do's and Don'ts

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Is your 5-year-old still eating the same three foods she's liked since age 2 - and little else? Do you worry she'll be off to college some day and still never know the joys of fruits or vegetables?

You're not alone. "I've worked with children and parents for 12 years, and parents of picky eaters are among the most miserable, and the older their picky eater gets, the more worried they become about their child's future," says Katherine Dahlsgaard, PhD, ABPP, clinical director of the Anxiety Behaviors Clinic and the Picky Eaters Clinic in CHOP's Department of Child and Adolescent Psychiatry and Behavioral Sciences.

"It is heartbreaking for parents when their kids don't enjoy family meals, eat like all the other kids at birthday parties, or participate in big celebrations like Thanksgiving," she says.

With the right treatment, however, even extremely picky eaters can successfully broaden the range of foods they eat comfortably. The key, says Dr. Dahlsgaard, is treatment that involves and empowers the parents. In fact, Dr. Dahlsgaard just published the results of her treatment program for picky eaters in a recent issue of Cognitive and Behavioral Practice.

Through this brief treatment - based on the principles of exposure-based cognitive-behavioral therapy (CBT) - parents themselves are trained to coach their children to try new foods on a daily basis.

We asked Dr. Dahlsgaard for her "do's" and "don'ts" when it comes to feeding picky eaters - and how to tell when it's time to seek professional help.

Do remember that picky eating is often "developmentally normal." Children across the globe go through a picky eating phase from about age 2 to about age 4. "We think it starts out partly as a built-in protective impulse in a child. When a toddler can wander off out of a caregiver's sight and potentially pick things off the ground to put into his mouth, Nature has instilled in him a wary sense that says, 'This is a new 'food,' and I won't like it,'" she says.

Don't blame yourself. "Most picky eating cannot be explained by poor parenting. The proof for that is that many picky eaters have siblings who eat just fine," says Dr. Dahlsgaard. "So I let parents know their child probably came into the world with a brain that is just more rigid about trying new foods. I ask parents of picky eaters to allow some compassion for themselves about how frustrating that is," she adds.

Don't give up on a new food! Try over and over again. The reason: Research says it takes eight to 15 times to introduce a new food before your child will accept it. Yet parents typically offer a food three to five times before deciding their child is never going to like it.

Do make sure your child comes to the table hungry. "Often, parents aren't even aware of how frequently their child eats and drinks," says Dr. Dahlsgaard. "Have your child wait two hours between a snack and mealtime, and one hour between a drink and mealtime," she says.

Don't fear your child's hunger. "Lots of parents worry about their child feeling hunger pangs. They offer a quick snack, or give in to a demand, to relieve any such discomfort. But it's OK for your child to feel hungry; he's not starving. Being hungry means he's looking forward to the next meal," says Dr. Dahlsgaard.

Do set limits around food and talk in a matter-of-fact tone. "Many parents are very shy about setting limits around food in a way they're not shy about setting bedtime limits, for instance," says Dr. Dahlsgaard. "In a neutral tone, you might say something like: 'You need to eat a bit of this in order to have dessert.' You don't need to yell or show emotion other than a little optimism. And if your child doesn't eat it, don't react, but be sure to follow through on withholding dessert. It's just the consequence of not tasting a food. You should also avoid talking about it later and instead move on with your evening," she says.

Do establish mealtime routines. Try to eat your dinner around the same time every night; keep distractions like phones and TV out of mealtime; talk about pleasant topics so kids associate positive feelings with mealtime. "Remember that kids get the vast majority of their calories in the first 20 minutes, so set a happy tone to start the meal and keep time at the table short to avoid boredom," says Dr. Dahlsgaard.

Don't be afraid to ask for help. Severe picky eaters may need extra help from a professional to move beyond their limited eating choices. Prior to age 15, children often aren't motivated to change. "They're not unhappy about their picky eating, only their parents are," says Dr. Dahlsgaard. How can you tell if your child's habits are severe? Look for signs such as:

Being extremely unwilling to taste any new food, even after having it on her plate multiple times.

Extreme distress about food your child doesn't prefer; for instance, she may avoid all bagels because she once found a seed on her bagel that she wasn't expecting.

Developing aversions to foods she used to eat.

If you think your child is a severe picky eater, be sure to seek out a professional who has extensive experience treating the problem. At CHOP, psychologists like Dr. Dahlsgaard can help parents faced with this issue learn to use a method that rewards children for trying different foods and adding new options to their diet.

"Children should learn how to overcome extreme picky eating not just for the sake of their physical health, but for a greater sense of well-being. Eating a range of foods and enjoying a meal are critical to a well-lived life," adds Dr. Dahlsgaard.

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Feeding a Picky Eater: The Do's and Don'ts

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A CHOP psychologist offers her "do's" and "don'ts" for helping picky eaters expand their palates - and how to know when it's time to seek professional help.

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Although toddlers are beginning to develop food preferences, they also can be unpredictable about what they may want for a particular meal on a specific day. Here are some ways to deal with picky eaters.

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Centers for Disease Control and Prevention

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Your child might not like every food you give him or her on the first try. Give your child a chance to try foods again and again, even if he or she does not like them at first. Children may need to try some foods many times before they like them. Here are some tips that might make trying foods again and again easier.

Try freezing small bites of different foods. You can use these later and it avoids throwing a lot of food away.

Wait a week before you try the new food again.

Try mixing the new food with a food your baby likes, such as breast milk.

As your child gets older, he or she may start refusing foods he or she used to like or he or she may start showing signs of picky eating. Favoring just a couple of foods or not wanting foods to touch each other on the plate are normal behaviors. These behaviors often go away by the time your child is about 5 years old.

To learn more about picky eaters and what to do, watch Tips for Feeding Picky Eaters from the American Academy of Pediatrics.

Tips to Help

Try again: Wait a couple of days before offering the food again. It can take more than 10 times before you toddler might like it.

Mix it up: Mix new foods with foods you know your child likes.

Be silly: Make funny faces with the foods on your child's plate. It might help your child get excited to eat it.

Me too: Try eating the food first to show your child you like it. Then, let your child try it.

Choices: Give your child a choice of different foods to try. Let your child decide which one to try today.

Connect with Nutrition, Physical Activity, and Obesity

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Your child might not like every food you give him or her on the first try. Learn tips to introduce your child to new foods.

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 University of California - Benioff Children's Hospitals

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 University of California - Benioff Children's Hospitals

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Children can become picky eaters for a number of reasons. Some children are naturally more sensitive to taste, smell and texture. Other children develop picky eating habits by modeling their parents' fussy eating habits. Picky eating habits are more likely to develop when parents punish, bribe or reward their children's eating behaviors. The goal for feeding a picky eater should be to try new foods and to keep food from starting a battle.

Share Responsibility

As a parent, you have responsibilities for feeding your child. Your child also has responsibilities.

You control what, where and when food is provided.

Your child decides whether or not to eat the food, and how much to eat.

Offer a Variety of Age-Appropriate Foods

Your child should select from a variety of foods at mealtime like a vegetable, fruit, protein and starch. The family menu should not be limited to the child's favorite foods. Children can be offered a food up to 15 times before they will try it. If all else fails, children will usually eat bread or pasta.

Limit High Calorie Drinks

Your child may not eat the foods you provide if he or she is drinking too many calories from juice, soda or milk. If your child drinks too much, he or she can become full and eat poorly at mealtimes. Limit your child to 4 ounces of juice and 24 ounces of milk a day. Soda is not recommended for children because it has no nutritional benefit.

Set a Meal Schedule

Both snacks and meals are important for growing children to meet their nutrition needs. Having a set schedule of breakfast, mid-morning snack, lunch, afternoon snack, dinner and bedtime snack helps children know that there is a meal coming every two to three hours and that they will not go hungry. Avoid giving your child food between the scheduled times.

If your child chooses to skip a meal or a snack, he or she can wait until the next scheduled time in a couple of hours. If your child refuses to eat, have him or her sit at the table until the majority of the family is finished eating, within reason.

Make Meals Pleasant

The mealtime environment should always be considered when feeding a child. Conversation should be pleasant, the eating space should be clean and bright and distractions should be limited. Mealtime is not a time for watching television or arguing.

Respect Eating Quirks

Everyone has his or her own quirks about eating. Children may eat a sandwich cut into triangles without crusts, but would not eat the same sandwich cut into squares with the crusts. A child may eat small pieces of broccoli, but avoid the stems. Foods that your child eats today may not be eaten tomorrow. It is important to realize that your child may react differently to the same foods on different days. It is not necessary to offer a substitute food.

Avoid Being a Short Order Cook

If your child doesn't like or doesn't seem to be eating the foods that you have prepared for a meal or snack, it's okay. Avoid the temptation to return to the stove and cook foods that you know your child will eat. If your child refuses a meal or snack, there will be another one in a few hours and he or she should be able to wait until then. When children are hungry because they chose not to eat, they'll be more likely to eat what is offered next time.

Don't Always Offer Dessert

Dessert does not need to be offered with every meal or even every day. When dessert is available, consider the following ideas:

If a child is forced to eat an entire meal before dessert, he or she may be full, but will likely eat the dessert anyway.

If your child refuses to eat, withholding dessert is not the answer. The child will learn to value dessert above more nutritious foods, which can alter eating patterns for life.

If your child rushes through the meal to get to dessert, try offering dessert with the meal.

When children are picky eaters, sometimes it is a response to controlling or pushy parents, or to bribery. The battle over food can then lead to resistance and defiance from the child. Ultimately, it is the child's decision as to what to eat and whether or not to eat the foods you have provided. Sometimes, the child may eat very little or nothing at all, but he or she will make up the nutrition later that day or later in the week.

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Children are more sensitive to certain food experiences. There are steps parents can take to prevent mealtime battles over picky eating habits. Read on.

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Tube Feeding Nursing Calculations Problems Dilution Enteral (PEG and Nasogastric NG)

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Around the age of 6 months, an infant's need for energy and nutrients starts to exceed what is provided by breast milk, and complementary foods are necessary to meet those needs. An infant of this age is also developmentally ready for other foods. This transition is referred to as complementary feeding.

If complementary foods are not introduced around the age of 6 months, or if they are given inappropriately, an infant's growth may falter.

Ensuring that infants nutritional needs are met requires that complementary foods be:

timely - meaning that they are introduced when the need for energy and nutrients exceeds what can be provided through exclusive breastfeeding;

adequate - meaning that they provide sufficient energy, protein and micronutrients to meet a growing child's nutritional needs;

safe - meaning that they are hygienically stored and prepared, and fed with clean hands using clean utensils and not bottles and teats;

properly fed - meaning that they are given consistent with a child's signals of appetite and satiety, and that meal frequency and feeding are suitable for age.

Caregivers should take active care in the feeding of infants by being responsive to the child's clues for hunger and also encouraging the child to eat.

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Nuevas tendencias en la introducción de la alimentación complementaria en lactantes

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Nuevas tendencias en la introducción de la alimentación complementaria en lactantes

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Has your child's pediatrician said it's nearly time to start your sweetie on solids? You may imagine mounds of mushy rice cereal and puréed peas, plus lots of coaxing baby to open that tiny mouth.

But while many parents do choose to introduce solids in the form of purées, there is an alternate approach you can also consider for your baby's foray into solid foods: baby-led weaning.

These days, a growing number of parents are bypassing purées and jarred baby food altogether in favor of this practice, which involves offering age-appropriate finger foods to give babies more control over what (and how much) they put in their mouths.

What is baby-led weaning?

Popular in the U.K. and gaining traction in the U.S., baby-led weaning is a practice where babies 6 months old or older jump straight to finger foods as soon as solids are introduced, bypassing purées and mashed-up foods.

This approach is called baby-led weaning because that's what the premise is - letting your little one feed herself the healthy foods she wants to eat right from the start (which is why this works only for a baby who's at least 6 months old and capable of self-feeding).

Baby-led weaning allows babies to learn how to chew (or more accurately, gum) first, then swallow. It also prevents parents from pushing food, since babies are in control of how much they put into their mouths.

But those aren't the only benefits. According to advocates and some research, the potential perks of baby-led weaning include:

Encourages babies to become familiar with a greater variety of textures and flavors. That may make them more likely to develop more varied and healthy food preferences in the long run. A number of studies have shown that babies who eat a variety of foods (including peanut products and fish) may actually be less likely to have food allergies later in life. Just keep in mind that nuts (in the form of nut butters) and seafood are some of the most common childhood allergens, so you should always consult your child's pediatrician about how to best introduce these foods to your baby.

Could reduce the risk for child obesity. With spoon-feeding, the parent is in control (which may make babies eat faster and more than they really need, potentially leading to a habit of ignoring feelings of fullness) - but similar to breastfeeding, baby-led weaning allows baby to self-regulate how much she eats based on her hunger levels. That could result in a lower chance for becoming overweight compared to children who are spoon-fed.

Promotes fine motor skill development. Sticking primarily with finger foods encourages the development of manual dexterity and hand-eye coordination skills.

But no feeding method is perfect, of course. Though there are plenty of reasons to consider baby-led weaning, there are a few downsides, including:

It's messy. Eating finger foods is messy for babies of any age, especially those who are learning how to hang onto foods and get it into their mouths.

You need to pay attention to iron. Breastfed babies get enough iron from your breast milk until baby is 4 months old - but levels can diminish at this point, which is why your pediatrician will likely add a liquid iron supplement to the mix (1 mg/kg per day) until baby starts eating iron-rich solids. However, it can be hard for some babies to chew on many iron-rich foods (like beef). Puréed meat, green veggies and fortified cereals can help fill the gap. Your doctor may also recommend that your little one stay on an iron supplement through the first year as an added precaution.

When to start baby-led weaning

Experts, including the American Academy of Pediatrics (AAP), now say the best time to start solid foods is around 6 months. By that age, most babies are able to sit up by themselves and grab and hold onto objects. They've also dropped the tongue-thrust reflex (which causes them to push foreign substances out of their mouths), plus their intestines have developed the necessary digestive enzymes to absorb solid food.

While baby-led weaning is growing in popularity and has benefits, it does differ from traditional methods of introducing solids by spoon-feeding your baby purées (the AAP recommends parent-initiated spoon-feeding). If you're not sure whether baby-led weaning is right for your child, run the idea by your little one's pediatrician.

While most babies will get the green light, some (those who have special needs and are unable to pick up and chew foods on their own) might not be able to try baby-led weaning. Then look to your baby - some like taking the lead, while others don't.

How to start baby-led weaning

You may be skeptical that your 6-month-old will be able to handle solids right off the bat, but your baby's ability to chow down will likely amaze you. If you've decided to start your baby on solids the baby-led-weaning way, follow these basic principles:

Continue to nurse or bottle-feed. Keep up the same nursing frequency or bottle-feeding frequency, since babies get the majority of their nutrition from breast milk or formula throughout most of the first year.

Keep it soft. No matter what's on the menu, in the beginning, the food's texture should be soft enough for you to smush with your fingers or easily dissolvable - signs that your baby will easily be able to gum or chew it. Steer clear of foods that are hard or crunchy, like raw carrot or apple slices.

Prepare food according to your child's age. For 6-month-olds just starting solids, offer foods that can be sliced into thick strips or sticks so your baby can hold them in her fist and chew from the top down. Once your child has developed her pincer grasp, usually around 9 months or so, you can start cutting food up into tiny bite-sized pieces that she can easily pick up.

Dine together. If your dinner is steamed cauliflower and salmon, there's no reason that baby can't eat the same foods right along with you. Eating is a social activity, so let your little one see what you do with food and give her a chance to mimic you. Baby wants your toast or reaches for the banana you're snacking on? Offer her a portion (as long as it's baby-appropriate).

Offer a variety of foods. Over time, expose your baby to a wide range of choices to help her develop an adventurous palate and make her less likely to be a picky eater later in life. Serve up foods of different colors (roasted tomatoes, steamed green beans and sweet potatoes) and different textures (smooth avocados, juicy watermelon and even tender cooked pasta). You should aim to offer at least one high-iron food per meal.

Safety tips to keep in mind when trying baby-led weaning

It's natural to have choking concerns when introducing solids to your baby. But as long as you offer safe foods, your little one's gums are quite capable of chewing soft solids.

Still, it's important to know the signs of choking in babies, as well as understand how choking differs from gagging. Gagging is common, especially in the first few weeks of baby-led weaning as baby tries to maneuver unfamiliar lumps in her mouth. But bear in mind that gagging is actually a safety response to food traveling too far back into the mouth - and it's not the same thing as choking.

When babies gag, they're handling the problem themselves, and it's best to just stay calm (or at least look calm) and wait until it passes. Gagging should ease up as baby learns to cope with solid foods. That said, you'll do well to learn the difference between gagging and choking, and how to act if it's the latter:

A child who is gagging appears to be coughing mildly and may make a little noise.

A child who is choking will look terrified, be unable to breathe and make no noise, or might gasp or wheeze. They may also have a panicked look and bluish color to skin, and may grab their throat (in toddlers).

The bottom line? Baby-led weaning is safe for little ones, as long as you present food safely and stick with a few common sense feeding guidelines. Remember to:

Avoid serving any foods that are choking hazards. These include foods such as nuts; whole grapes, cherries or cherry tomatoes; raw vegetables; uncooked apple slices; uncooked dried fruit; thick gobs of nut butter; hot dogs; large chunks of meat or cheese; fish with bones; popcorn; and crunchy snacks like chips, pretzels or granola bars.

Always supervise your baby while she eats. Never let your baby eat unattended.

Keep baby sitting upright in her high chair while eating. Don't let her eat while she's crawling, playing or reclining, and don't serve food in the stroller or the car.

Watch for allergic reactions. The thinking is no longer to hold back on certain foods to avoid allergies: Most experts believe that the more options you offer, the more likely your newbie foodie will accept different foods, which translates into fewer mealtime battles in the future. However, it's still important to know the signs of a food allergy - which can include hives, skin swelling, tongue swelling, sneezing, wheezing, throat tightness, vomiting, difficulty swallowing, and stomach pain and diarrhea - and consult your child's pediatrician about how and when to introduce common allergens such as eggs, peanuts and seafood.

Explain baby-led weaning to everyone who takes care of your child. It's important to ensure all caregivers follow the same safety precautions you do.

Take an infant CPR class. And regularly refresh your memory on how to help a young child who is choking.

Best baby-led weaning foods

As long as it's soft, cut into manageable pieces (baby fist-size at first) and not on the list of foods that pose a choking risk, it's on the baby-led weaning menu.

In the first few months, do your best to serve up a well-rounded diet, and ask your child's pediatrician if you have concerns about how much or little your baby is eating. Do focus on offering a variety of foods from different food groups each day to ensure baby's getting the nutrients she needs. Some tasty options to try:

Fruits for baby-led weaning

Soft, smooshy ones can be served raw, while harder ones like apples should always be cooked.

Vegetables for baby-led weaning

Proteins for baby-led weaning

Shredded poached chicken

Hard-boiled eggs, quartered

Shredded boiled beef

Baked or grilled flaked fish, bones removed

Smooshed beans

Hummus

Raw or lightly baked tofu strips

Whole grains for baby-led weaning

Whole grain toast strips

Whole grain pita strips

Whole grain English muffin strips

Baked oatmeal strips

Whole wheat pasta, cooked until very tender

Whole grain pancake strips

Dairy for baby-led weaning

Plain, full-fat yogurt (regular or Greek-style)

Ricotta cheese

Cottage cheese

Mozzarella cheese

Swiss and cheddar cheese

There's no need to add salt, sugar or artificial sweeteners to your baby's foods, since they don't add any nutritional value. What's more, they mask the innate flavors of baby's foods - and some research has even found that babies don't actually have any preference at all for these tastes.

Plus, consistent use of salt or sugar sets kids up to prefer salty or sugary foods in the long run. (It's fine, however, to season food with herbs and spices - your baby might love the kick in flavor.)

Also skip chips, cookies and other prepackaged, prepared foods, too, since they tend to be devoid of nutrients and full of additives and unhealthy trans-fats.

Best baby-led weaning foods by age

Your baby's first finger foods should be soft enough for her to gum easily but firm enough to be cut into long, thick strips that she can easily grab. Foods that can't be cut, like yogurt or oatmeal, can be served in clumps that your baby can rake (or try offering them on a preloaded spoon for your baby to put in her mouth).

As your cutie's confidence with solids grows and her fine motor skills improve, you can start offering smaller pieces and slightly firmer textures.

Best baby-led weaning foods for 6- and 7-month-olds

Baked or steamed sweet potato strips

Steamed carrot strips

Thick avocado slices

Thick banana slices

Thick mango or melon slices (peeled)

Steamed broccoli or cauliflower florets

Toast strips

Plain Greek yogurt

Quartered hard-boiled eggs or omelet strips

Ricotta cheese

Mozzarella cheese

Steamed tofu strips

Plain puréed beef, turkey or chicken shaped into logs

Best baby-led weaning foods for 8- and 9-month olds

Thinly sliced strawberries

Halved raspberries or blueberries

Ripe peach or nectarine slices

Ripe pear slices (steamed or roasted if firm)

Steamed or roasted apple wedges (skin removed)

Steamed green beans

Steamed peas

Steamed or sauteed chopped spinach

Grated or cubed Swiss or cheddar cheese

Whole grain O-s

Whole wheat pasta

Minced chicken, turkey or beef

Halved mini meatballs

Cooked beans

Hummus

Baked or broiled fish fish such as cod, sole or salmon (check to ensure any bones are removed)

Scrambled eggs

Best baby-led weaning foods for 10- to 12-month-olds

As your little one nears her first birthday, her menu will start to look a lot more like yours. Almost all foods are fair game at this point, and chances are, she'll be able to enjoy most of whatever the rest of the family is eating (so long as the foods are served in a way that doesn't pose a choking risk). That might look like:

Whole wheat spaghetti and meatballs, both cut into small pieces, topped with Parmesan cheese.

Baked fish or chicken, flaked or cut into bite-sized pieces, with roasted sweet potato wedges and steamed broccoli or peas.

Tacos served deconstructed, with a mound of beans, grated cheese, chopped tomato and soft whole grain tortilla wedges.

Half of a grilled cheese sandwich, cut into wedges, with a side of tomato soup for dunking.

Hummus plate with steamed carrot strips or half-moons, thinly sliced and peeled cucumber strips, whole grain pita and sliced cheese.

Sample baby-led weaning feeding schedules

Wondering how to fit those first meals (and later, snacks) in between naps and nursing sessions or bottles?

While there's no need to follow a set schedule, especially for babies first starting solids, here's what a typical day of eating might look like for your little one early on, and as she starts eating more solids. (Just keep in mind that every child is different, and there's no one-size-fits-all sleep or feeding schedule. Always ask your child's pediatrician if you have any questions about her daily routine.)

Sample schedule for 6- and 7-month-olds

This sample schedule assumes that your 6- or 7-month-old is taking three naps a day, although many babies do start to drop their third nap around this age. For more information about baby sleep, see our 6-month-old sleep schedule and 7-month-old sleep schedule.

7:00 AM: Wake and nurse or bottle

8:00 AM: Breakfast (banana strips)

8:45 AM - 10:45 AM: Nap

10:45 AM: Wake and nurse or bottle

12:15 PM: Nurse or bottle

12:30 PM - 2:00 PM: Nap

3:00 PM: Nurse or bottle

4:00 PM to 4:30 PM: Cat nap

5:00 PM: Nurse or bottle

5:45 PM: Dinner (puréed cooked beef shaped into logs and steamed sweet potato)

6:45 PM: Nurse or bottle

7:00 PM: Bed

Sample schedule for 8- and 9-month- olds

This sample schedule assumes that your 8- or 9-month-old is taking two naps a day. For more information about baby sleep, see our 8-month-old sleep schedule and 9-month-old sleep schedule.

7:00 AM: Wake and nurse or bottle

8:00 AM: Breakfast (veggie omelet strips and whole grain toast strips)

9:30 AM - 11:30 AM: Nap

11:30 AM: Nurse or bottle

12:30 PM: Lunch (whole grain pita wedges with hummus, sliced avocado wedges and smushed blueberries)

2:00 - 3:30 PM: Nap

3:30 PM: Nurse or bottle

5:45 PM: Dinner (soft-baked salmon, cooked whole grain pasta pasta, steamed or roasted broccoli florets)

7:00 PM: Nurse or bottle

7:30 PM: Bed

Sample schedule for 10- to 12-month-olds

This sample schedule assumes that your 10-, 11- or 12-month-old is taking two naps a day. For more information about baby sleep, see our 10- to 12-month-old sleep schedule.

7:00 AM: Wake and nurse or bottle

8:00 AM: Breakfast (peanut butter oatmeal with oats with peanut butter stirred in, topped with sliced strawberries)

9:30 AM - 11:00 AM: Nap

11:00 AM: Nurse or bottle

12:00 PM: Lunch (black bean and cheese quesadilla on soft whole grain tortilla sliced into wedges, steamed carrot half-moons, thinly sliced ripe pear)

2:30PM - 4:00 PM: Nap

4:00 PM: Nurse or bottle with an optional afternoon snack (whole milk Greek yogurt with diced banana pieces)

5:45 PM: Dinner (shredded roast chicken, baked potato wedges, steamed green beans with butter)

7:00 PM: Nurse or bottle

7:30 PM: Bed

Tips for successful baby-led weaning

You and your new nosher will get the hang of baby-led weaning quickly (even if it seems a little overwhelming at first). For a smooth, low stress start, keep these tricks of the trade in mind:

Invest in a big bib. Consider dressing your little one in just a diaper and covering her with an oversize bib or smock, and put a drop cloth or newspaper on the floor beneath the high chair.

Start slowly. At the beginning, you only need to place one or two pieces of food in front of your little one at mealtimes. More and you may overwhelm baby with too many choices.

Don't worry about plates or bowls for now. She'll toss 'em on the floor anyway. Just place the food right on the table or high-chair tray, and let the party start.

Make slippery foods easy to grasp. Are those yummy soft finger foods (avocado, tofu) slipping and sliding in your baby's pudgy fingers? Grind Cheerios or other whole grain cereal, wheat germ or whole grain crackers into a fine powder, and then coat the foods with the "dust." It'll make it easier for your little one to grab hold of and munch on (plus, it'll boost the health factor of the foods).

Encourage fun. Think of solid food meals as playtime, when baby explores different textures and experiments with tasting and chewing. Baby-led weaning is all about getting comfortable with various foods.

Don't force the issue. Since your baby is getting the nutrition she needs from formula or breast milk during her first year, don't be surprised if she eats very little in the first few months. Let her set the pace. As she gets more proficient and starts to eat more, she'll gradually consume less breast milk or formula in favor of the solid foods she's learning to love.

Be flexible. Remember that baby-led weaning, like so many other parenting approaches, isn't an all-or-nothing proposition. You can choose baby-led weaning some of the time, alternating with spoon-feeding or adding to it (baby eats a chunk of banana, you spoon in some yogurt).

Baby-led weaning can give your little one more independence at mealtime, and maybe even help her become a more adventurous eater. Just be sure to have your camera ready: The snapshots of those messy first meals will be priceless.

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Should You Introduce Solids With Baby-Led Weaning?

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Baby-led weaning can help your baby start solid foods. Learn more about what it is, when to start and first foods.

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To start baby-led feeding, first look for signs your baby is ready for solids. Typically, this will be around six months. They need to be able to sit up with some support, and have enough head and neck control to keep them both still. For more guidance on what to think about when introducing solid foods to your baby, see here.

Once they are ready for solids, you can choose to start spoon feeding puree or offer them some stick-shaped finger foods that they can pick up and feed themselves.

At each mealtime, make sure you offer your baby an iron-rich food. This may be easier to do with purees-for example, a red-meat-based puree such as blended spaghetti with meat sauce, or an iron-fortified infant whole grain cereal. Feed your baby smooth purees using a spoon to start with, but you can quickly move onto chunkier textures as they get used to these.

You can also use iron fortified infant cereal as thickener in fruit/veggie purees - or an ingredient in other recipes like muffins or breads.

You can also offer small amounts of protein foods, such as eggs and dairy products, for example unsweetened yogurt. Plus one high-energy food per meal, such as banana. The main focus of combining baby-led weaning and purees is on developing your baby's self-feeding skills at their own pace and in a safe way. It's important to let your baby lead when spoon-feeding and not overfeed your baby if they are showing you signs that they are full or not interested. If you're wondering how to spoon-feed your baby, see here.

Check out Baby-led feeding in 5 steps to see how to combine baby-led weaning and purees in practice, and get helpful food examples to offer your baby.

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Interested in the steps to start baby-led feeding? To start baby-led feeding, first look for signs your baby is ready for solids

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Guidelines for Feeding and Swallowing Programs in Schools

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Guidelines for Feeding and Swallowing Programs in Schools

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Improving health outcomes in Rett syndrome 

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Improving health outcomes in Rett syndrome 

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An information booklet for families and carers Nutritional and Digestive Health

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Family Empowerment Representatives

Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.

National Family Empowerment Representative

Samantha Brant - Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157

Family Empowerment Representative

Nikki Johnson, volunteer Family Empowerment Representative, Milton
[email protected] 1-850-686-5208

Karli Hughes, volunteer Family Empowerment Representative, Lakeland
[email protected] 1-863-899-0784

Treatment and Research Centers

Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

State Agencies & Resources

Local Service Agencies

Act4Me

Visit Act4Me Website
1-786-457-2993
Act4Me provides funding to children with neurological disabilities and disorders (including Rett Syndrome) for speech, occupational, and physical therapy. Their target population are families that are uninsured or families with private insurance but insufficient coverage. They also provide grants for undocumented families who do not receive Medicaid or other government support. They also accept grant applications for Home Therapy Supplies such as, (but not limited to) wheelchairs, walkers, hearing, and speaking equipment.

State Medicaid

iBudget Florida

Visit iBudget Florida Website
1-866-APD-CARES
iBudget is the Medicaid Waiver program for persons with developmental disabilities. It is how the Agency for Persons with Disabilities manages the Medicaid waiver system. It gives APD customers more control and flexibility to choose services that are important to them, while helping the agency to stay within its Medicaid waiver appropriation. Online application available. Email[email protected]

Consumer Directed Care Plus (CDC+)

Visit Consumer Directed Care Plus (CDC+) Website
1-866-761-7043
CDC+is an alternative to iBudget which gives the consumer the opportunity to hire workers and vendors directly. Paid workers may even be family members or friends.

Florida Medicaid Waivers

Visit Florida Medicaid Waivers Website
Florida currently has four HCBS 1915(c) waiversthat are open to children. Three of these waive parental income; we do not know the status of the fourth. KidsWaivers.org has an overview of the programs.

Early Intervention

Early Steps

Visit Early Steps Website
1-850-245-4200
Early Steps is Florida's early intervention system that offers services to eligible infants and toddlers (birth to 36months) with significant delays or a condition likely to result in a developmental delay. Email or call Kelly Rogers for more information

Education

Conservatorship

Transition to Adult Services

Parent Recommended Resources

If you have favorite resources to share with others, please email that information and your experience to [email protected] .

Medical Professionals

Dr. Donald George

1-904- 697-3600
Dr. George is Division Chief ofthe Pediatric Gastroenterology Clinic at Nemours Childrens Specialty Care in Jacksonville.

Dr. Frank Sierra

1-813-889-0780
Dr Sierra is a Pediatric Dentist in Tampa.

Dr. Richard Reynolds

1-859-505-4720 Dr. Reynolds is an Orthopedic specialist at Nemours in Pensacola.

Dr. Ronald G Davis

1-407-293-1122 Dr. Davis leads the Pediatric Epilepsy Center of Central Florida in Orlando.

Therapy

Jennifer Ferreira & Daniel Dardiz

1-321-438-7226
Both are certified CCC-SLP at All Children's Hospital

Legal Resources & Information

Recreation

Additional Resources

Center for Autism & Related Disabilities (CARD)

Visit Center for Autism & Related Disabilities (CARD) Website
CARD located at USF is a community-based project that provides information and consultation to individuals diagnosed with autism spectrum disorders and related disabilities. CARD-USF offers instruction and coaching to families and professionals. 1-813-974-2532

Purple Ribbon Mobility

Visit Purple Ribbon Mobility Website
1-678-572-4410
Purple Ribbon Mobility offers brand new wheelchair conversions on gently used Dodge Grand Caravan or Toyota Sienna mini-vans. They can convert your Dodge Grand Caravan or Toyota Sienna to be Wheelchair Accessible at a cost that is thousands less and with fewer restrictions on age and mileage of the van than traditional conversions. Located in Georgia, providing services throughout the southeast.

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Florida - International Rett Syndrome Foundation

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Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.

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Girlpower2cure.org - Support-Rett Syndrome 

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Girlpower2cure.org - Support-Rett Syndrome 

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Great Stuff for Rett Families

We don't want you to feel alone in this fight. The GP2C community is an inspiring and encouraging place filled with loving families pulling together to support each other.

From resources for telling your story and fundraising, to a place for finding & sharing helpful product tips or connecting with a family near you, our community is where everyone is welcome and everyone is needed.

Remember, we are here for you: Call us at 904.277.2628 or contact us at support@gp2c.org

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Rett Syndrome Family Support Groups - You're Not Alone

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You're not alone! Join our Rett Syndrome family support groups to get help , share ideas & information with other families like you.

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Helping Families Thrive: At International Rett Syndrome Foundation we believe that helping and supporting families of children with Rett syndrome is one of the most important parts of what we do. We provide tools, resources and information to not only walk this journey, but to thrive.

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Living with Rett - International Rett Syndrome Foundation

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International Rett Syndrome Foundation is comprised of parents and friends of those diagnosed with Rett syndrome who have walked this journey. We are dedicated to providing families with the latest medical information, aggressively funding the most promising research for a cure, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome.

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International Rett Syndrome Foundation is comprised of parents and friends of those diagnosed with Rett syndrome who have walked this journey. We are dedicated to providing families with the latest medical information, aggressively funding the most promising research for a cure, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome.

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For Families - International Rett Syndrome Foundation

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International Rett Syndrome Foundation is comprised of parents and friends of those diagnosed with Rett syndrome who have walked this journey. We are dedicated to providing families with the latest medical information, aggressively funding the most promising research for a cure, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome.

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Data from the natural history study - Harvard

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Anxiety-like behavior in Rett syndrome: 

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Anxiety-like behavior in Rett syndrome: 

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characteristics and assessment by anxiety scales - Harvard EDU

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Consensus guidelines on managing Rett syndrome across the lifespan.

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Consensus guidelines on managing Rett syndrome across the lifespan.

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Global prevalence of Rett syndrome: systematic review and meta-analysis

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Global prevalence of Rett syndrome: systematic review and meta-analysis

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A Pediatric Perspective Publications Gillette Children’s Specialty Healthcare 200 University Ave. E. • St. Paul, MN 55101 651-229-1744 bspatterson@gillettechildrens.com

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RETT SYNDROME: Primary Care Guidelines
International Rett Syndrome Foundation

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Kennedy Krieger Institute: The Neurology and Neurogenetics Clinic

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U.S. DEPARTMENT OF HEALTHAND HUMAN SERVICES National Institutes of Health

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Cystic Fibrosis Luncheon in Lakewood Ranch kicks off local fundraising efforts

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Cystic Fibrosis Luncheon in Lakewood Ranch kicks off local fundraising efforts

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With nearly 200 people mingling at the Lakewood Ranch Golf and Country Club March 24, East County's Sara Kasten didn't hesitate to put aside her event organizer role on hold for a quick hug and photo with her granddaughter, Carli Kasten, of Panther Ridge.

The luncheon she'd organized with a team of friends, called "Team Kasten," was pretty much just for her anyway.

"It's gotten quite big," said Sara Kasten of the Cystic Fibrosis Luncheon as she looked around the room. "I really believe in the Cystic Fibrosis Foundation. They are so supportive of cystic fibrosis families.

Carli Kasten, now 15, suffers from the condition.

This year's luncheon was the biggest one yet, of all five years Sara Kasten has done it in Florida. She did a similar fundraiser when she lived in Illinois, as well.

The luncheon served as a kick-off event for the local Cystic Fibrosis Foundation's Great Strides Walk May 7, at Siesta Key Beach.

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Cystic Fibrosis Luncheon in Lakewood Ranch kicks off local fundraising efforts | Your Observer

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Team Kasten raises funds, awareness for Cystic Fibrosis Foundation.

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The Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital 

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The Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital 

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The Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital diagnoses and treats newborns to young adults with cystic fibrosis.

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The CF Foundation-accredited Cystic Fibrosis Center at Johns Hopkins All Children's Hospital diagnoses and treats newborns to young adults.

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Sarasota - Great Strides - Cystic Fibrosis Foundation

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Sarasota - Great Strides - Cystic Fibrosis Foundation

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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.

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Sarasota - Great Strides - Cystic Fibrosis Foundation

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Nearly every CF drug was made possible by the Cystic Fibrosis Foundation and because of funds raised from Great Strides. Join me at Great Strides!

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Cystic Fibrosis CenterThe Cystic Fibrosis (CF) Center at theCystic Fibrosis Center " Pediatric Pulmonary Division " College of Medicine " University of Florida

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Cystic Fibrosis  at the University of Florida is accredited by the Cystic Fibrosis Foundation

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Cystic Fibrosis  at the University of Florida is accredited by the Cystic Fibrosis Foundation

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The Cystic Fibrosis (CF) Center at the University of Florida is accredited by the Cystic Fibrosis Foundation. The Foundation accredits and provides partial funding for interdisciplinary pediatric and adult cystic fibrosis care centers nationwide. Staffed by dedicated professionals, these centers provide specialized CF care. Each center undergoes a thorough review by the CF Foundation's Care Center Committee before it receives accreditation and funding. This review for accreditation occurs every year.

Care centers also participate in CF clinical research and work to educate healthcare professionals and families about CF and the care people living with the disease require. Data from people with CF is collected in the national CF Foundation Patient Registry, which serves as a rich resource for CF health care providers and CF researchers to track the health of people living with CF in the United States.

What is Cystic Fibrosis (CF)?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States and 70,000 people worldwide. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene-one from each parent-to have the disease. It is most often found in Caucasians, but it can be found in people of all races. Because of a defective gene and the protein it produces, the body manufactures unusually thick, sticky mucus. This mucus clogs the lungs and can lead to life-threatening lung infections. It also can obstruct the pancreas and block the release of sufficient pancreatic enzymes to help the body break down and absorb food. Other systems can be affected as well.

The treatment of CF depends upon the severity of symptoms and the organs involved. Most people with CF must take pancreatic enzyme supplements with every meal to absorb enough calories and nutrients to grow and stay healthy. They also must eat a high-calorie, high-fat diet. People with CF also perform daily airway clearance therapy to help clear mucus from the lungs. Other types of treatments include antibiotics to fight lung infections and drugs to thin the mucus and improve lung function.

CF Resources

Clinics

Scheduling

CF clinics are held on Tuesdays in the Shands Medical Plaza located at 2000 Archer Road, on the second floor in the pediatric specialties clinics. These special CF clinics are staffed by the interdisciplinary team of physicians, nurses, nutritionists, respiratory care, social work, and clinical psychology.

Patients are scheduled carefully based on their respiratory cultures to prevent transmission of resistant organisms. This scheduling is called "cohorting" and each patient will be assigned to an appropriate clinic by a color designation: white, orange, blue, red, or green. When calling to schedule an appointment, knowledge of your cohort will assure correct scheduling for you/your child. Return appointments are made at each clinic visit. If you need to change your appointment, you should call (352) 265-8250 and tell the scheduler which CF clinic you need.

Infection Control

Every effort is made in the CF clinic to prevent the transmission of organisms between patients. Clinic appointments are made according to the cohort plan as described in the scheduling section above. This prevents individuals with very resistant respiratory organisms from being in the clinic at the same time as patients who have organisms less difficult to treat. In addition, all patients should request a mask at the check-in desk when they arrive and everyone should use the hand disinfectant located outside the rooms upon entering and leaving. The pulmonary function testing room and all patient rooms are disinfected between patients.

Guidelines for Hospital Admissions

People with CF are usually admitted to the hospital when treatment with oral and inhaled antibiotics has failed to get lung function back to their baseline (best PFT's they can get) or get their cough and/or weight under control. Experience has taught us that rest, intensive airway clearance, high quality and high-calorie diet along with IV antibiotics are necessary to get the best gains in health. To accomplish the best results, the healthcare team and the patient/family work in partnership. The patient's part of this includes being in their room at times when treatments are scheduled, getting a good night's sleep so they can be rested and be able to participate in their care during the day, doing their part to maintain good infection control, eating lots, and sharing the details of their progress with the physician team. The healthcare team will design and implement a plan of care, communicate the plan with the family, and be open to input if there are aspects of the plan that the family is uncomfortable with.

Infection control in the hospital is extremely important to protect everyone. We know that people with CF can transmit organisms to each other through coughing or by contact with organisms on a surface. These organisms are then carried by the hand to the mouth and into their lungs. There are also patients in the hospital units who have "suppressed immune systems" making their natural defenses too weak to resist pathogens that could make them dangerously ill.

Thus, infection control in the hospital is taken very seriously. If you are asked to remain in your room it means that you are a risk to other people. When you are allowed to leave your room, you must always disinfect your hands before leaving and again on your return and wear a mask until you are off the hospital unit. You may even be asked to change into a clean set of clothing before leaving the room. This is to protect you as well as others.

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Cystic Fibrosis Center " Pediatric Pulmonary Division " College of Medicine " University of Florida

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The Cystic Fibrosis (CF) Center at the University of Florida is accredited by the Cystic Fibrosis Foundation. The Foundation accredits and provides partial funding for interdisciplinary pediatric and adult cystic fibrosis care centers nationwide. Staffed by dedicated professionals, these centers provide specialized CF care. Each center undergoes a thorough review by the CF Foundation's Care...

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Welcome Welcome to the North Central Florida Chapter

The North Central Florida Chapter of the Cystic Fibrosis Foundation welcomes you! Our chapter covers the Orlando and Jacksonville areas. Volunteers are the key to our success and the lifeblood of our organization. We have many opportunities for you to get involved. Your participation in any way will help us achieve our mission - finding a cure for all people with CF. Take a moment to check out our upcoming events and learn more!

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The North Central Florida Chapter of the Cystic Fibrosis Foundation welcomes you! Our chapter covers the Orlando and Jacksonville areas. Volunteers are the key to our success and the lifeblood of our organization. We have many opportunities for you to get involved.

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Meet Our Local Team Southeast Florida Chapter - Palm Beach Office Board and Staff

Ron Saunders, Board Chairman
Suzanne Malamala, Honorary Chairman
Fred Menowitz, Vice Chairman
Chris Branden, Individual Giving Chairman
Kimberly Sundook, Volunteer Engagement Chairman
Cathleen O'Toole Stetson, Outreach Chairman
Drew Hanley, Advocacy Chairman
Stephanie Dagher
Chris Gardner

Danielle Genova
Gayle Greenberg
Robert Hammerton
Jacqueline Lopez-Devine
Karen J. Matthew
Cindy Metzler
Jon Rapaport
Beth Garcia-Svopa

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Southeast Florida Chapter - Palm Beach Office

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The Southeast Florida Chapter - Palm Beach Office (serving Greater Palm Beach, and The Treasure Coast) of the Cystic Fibrosis Foundation welcomes you! Volunteers are the key to our success and the lifeblood of our organization. We have many opportunities for you to get involved.

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Cystic Fibrosis Resources - Florida Health 

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Cystic Fibrosis Resources - Florida Health 

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The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with cystic fibrosis the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the cystic fibrosis community, and advancing high-quality, specialized care.

The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy.
Support Groups: Cystic Fibrosis Foundation North Central Florida Chapter Cystic Fibrosis Foundation Southeast Florida Chapter- Palm Beach Office

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On this page you will find Cystic Fibrosis resources.

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Researchers - Tools

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We collect information on the health status of people with CF who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvem…

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Cystic fibrosis (CF) is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body.

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Overview

What is cystic fibrosis? A Mayo Clinic expert explains

Learn more from pulmonologist Sarah Chalmers, M.D.

Hello. I'm Dr. Sarah Chalmers, a pulmonologist at Mayo Clinic. In this video, we'll cover the basics of cystic fibrosis. What is it? Who gets it? The symptoms, diagnosis and treatment. Whether you're looking for answers for yourself or someone you love, we're here to give you the best information available. Cystic fibrosis is a disorder that damages your lungs, digestive tract and other organs. It's an inherited disease caused by a defective gene that can be passed from generation to generation. Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with CF, they're thick and sticky. Instead of acting as lubricants, these secretions plug up the tubes, ducts and airways in your body. Although there is no cure for cystic fibrosis, people with this condition are generally able to live normal lives. There are many tools and techniques doctors use to help manage this complicated condition and with improvement in screening and treatments, life expectancy for those with cystic fibrosis is better than ever before.

Simply put, cystic fibrosis is a gene defect. A defect to this gene changes how a salt moves in and out of cells, resulting in thick, sticky mucus in the respiratory, digestive and reproductive systems. It's an inherited condition. A child needs to inherit one copy of the mutated gene from each parent to develop cystic fibrosis. If they only inherit one copy from one parent, they won't develop it. However, they will be a carrier of that mutated gene, so they could pass it along to their own children in the future. Because CF is an inherited disorder, family history determines your risk. Although it can occur in all races, cystic fibrosis is most common in white people of North European ancestry.

There are two kinds of symptoms associated with cystic fibrosis. The first are respiratory symptoms. Thick, sticky mucus can clog the tubes that carry air in and out of your lungs. This can trigger a persistent cough that produces thick mucus, wheezing, exercise intolerance, repeated lung infections, and inflamed nasal passages or a stuffy nose or recurrent sinusitis. The second type of symptoms are digestive. That same thick mucus that can clog your airways can also bog tubes that carry enzymes from your pancreas to your small intestine. This can result in foul-smelling or greasy stools, poor weight gain and growth, intestinal blockage, or chronic and severe constipation, which may include frequent straining while trying to pass stool. If you or your child show symptoms of cystic fibrosis or if someone in your family has CF, talk with your doctor about testing for the disease.

Since this disease is an inherited condition, reviewing your family history is important. Genetic testing may be done to see if you carry the mutated gene that triggers cystic fibrosis. A sweat test may also be conducted. CF causes higher than normal levels of salt in your sweat. Doctors will examine the levels of salt in your sweat to confirm a diagnosis.

Because this condition is passed from parent to children, newborn screening is routinely done in every state in the U.S. Early diagnosis of CF means that treatments can begin immediately. Unfortunately, there is no cure for cystic fibrosis, but proper treatment can ease your symptoms, reduce complications, and improve your quality of life. Doctors may decide that certain medications are necessary. These could include antibiotics to treat and prevent lung infections, anti-inflammatories to lessen the swelling in your airways, or mucus-thinning drugs to help expel mucus and improve lung function. Medications can also help improve digestive function. From stool softeners to enzymes, to acid-reducing drugs. Some medications can even target the gene defect that causes cystic fibrosis, aiding the faulty proteins to improve lung function and reduce salt in your sweat. Outside of medications, airway clearance techniques, also called chest physical therapy, can relieve mucus obstruction and help to reduce infection and inflammation in the airways. These techniques loosen the thick mucus in the lungs, making it easier to cough up. In some cases, doctors turn to surgery to help alleviate conditions that can arise from cystic fibrosis. For instance, nasal and sinus surgery to help you breathe, or bowel surgery to help improve digestive function. In life-threatening instances, lung transplant and liver transplant had been performed. Managing cystic fibrosis can be very complex. So consider getting treatment at a center with medical professionals trained in the disorder to evaluate and treat your condition. You can even ask your physician about clinical trials. New treatments, interventions and tests are constantly under development to help prevent, detect, and treat this disease.

Learning you or someone you know has cystic fibrosis can be incredibly challenging. It's okay to feel depressed, anxious, angry, or afraid. In time, you'll find ways to cope, find support and talk to others who are going through it too. Look to your friends and family to help manage stress and reduce anxiety. Seek professional help. Remember, physical conditions come with an emotional and mental burden. And take the time to learn about cystic fibrosis. It's a complicated, severe disorder. So don't hesitate to talk to your medical team about your questions or concerns. With the knowledge and treatment available to doctors today, life with cystic fibrosis is better than ever before. If you'd like to learn even more about cystic fibrosis, watch our other related videos or visit mayoclinic.org. We wish you well.

Cystic fibrosis (CF) is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body.

Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with CF, a defective gene causes the secretions to become sticky and thick. Instead of acting as lubricants, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.

Although cystic fibrosis is progressive and requires daily care, people with CF are usually able to attend school and work. They often have a better quality of life than people with CF had in previous decades. Improvements in screening and treatments mean that people with CF now may live into their mid- to late 30s or 40s, and some are living into their 50s.

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Symptoms

In the U.S., because of newborn screening, cystic fibrosis can be diagnosed within the first month of life, before symptoms develop. But people born before newborn screening became available may not be diagnosed until the signs and symptoms of CF show up.

Cystic fibrosis signs and symptoms vary, depending on the severity of the disease. Even in the same person, symptoms may worsen or improve as time passes. Some people may not experience symptoms until their teenage years or adulthood. People who are not diagnosed until adulthood usually have milder disease and are more likely to have atypical symptoms, such as recurring bouts of an inflamed pancreas (pancreatitis), infertility and recurring pneumonia.

People with cystic fibrosis have a higher than normal level of salt in their sweat. Parents often can taste the salt when they kiss their children. Most of the other signs and symptoms of CF affect the respiratory system and digestive system.

Respiratory signs and symptoms

The thick and sticky mucus associated with cystic fibrosis clogs the tubes that carry air in and out of your lungs. This can cause signs and symptoms such as:

A persistent cough that produces thick mucus (sputum)

Wheezing

Exercise intolerance

Repeated lung infections

Inflamed nasal passages or a stuffy nose

Recurrent sinusitis

Digestive signs and symptoms

The thick mucus can also block tubes that carry digestive enzymes from your pancreas to your small intestine. Without these digestive enzymes, your intestines aren't able to completely absorb the nutrients in the food you eat. The result is often:

Foul-smelling, greasy stools

Poor weight gain and growth

Intestinal blockage, particularly in newborns (meconium ileus)

Chronic or severe constipation, which may include frequent straining while trying to pass stool, eventually causing part of the rectum to protrude outside the anus (rectal prolapse)

When to see a doctor

If you or your child has symptoms of cystic fibrosis - or if someone in your family has CF - talk with your doctor about testing for the disease. Consult a physician who is knowledgeable about CF.

Cystic fibrosis requires consistent, regular follow-up with your doctor, at least every three months. Contact you doctor if you experience new or worsening symptoms, such as more mucus than usual or a change in the mucus color, lack of energy, weight loss, or severe constipation.

Seek immediate medical care if you're coughing up blood, have chest pain or difficulty breathing, or have severe stomach pain and distention.

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Causes

In cystic fibrosis, a defect (mutation) in a gene - the cystic fibrosis transmembrane conductance regulator (CFTR) gene - changes a protein that regulates the movement of salt in and out of cells. The result is thick, sticky mucus in the respiratory, digestive and reproductive systems, as well as increased salt in sweat.

Many different defects can occur in the gene. The type of gene mutation is associated with the severity of the condition.

Children need to inherit one copy of the gene from each parent in order to have the disease. If children inherit only one copy, they won't develop cystic fibrosis. However, they will be carriers and could pass the gene to their own children.

Risk factors

Because cystic fibrosis is an inherited disorder, it runs in families, so family history is a risk factor. Although CF occurs in all races, it's most common in white people of Northern European ancestry.

Complications

Complications of cystic fibrosis can affect the respiratory, digestive and reproductive systems, as well as other organs.

Respiratory system complications

Damaged airways (bronchiectasis). Cystic fibrosis is one of the leading causes of bronchiectasis, a chronic lung condition with abnormal widening and scarring of the airways (bronchial tubes). This makes it harder to move air in and out of the lungs and clear mucus from the bronchial tubes.

Chronic infections. Thick mucus in the lungs and sinuses provides an ideal breeding ground for bacteria and fungi. People with cystic fibrosis may often have sinus infections, bronchitis or pneumonia. Infection with bacteria that is resistant to antibiotics and difficult to treat is common.

Growths in the nose (nasal polyps). Because the lining inside the nose is inflamed and swollen, it can develop soft, fleshy growths (polyps).

Coughing up blood (hemoptysis). Bronchiectasis can occur next to blood vessels in the lungs. The combination of airway damage and infection can result in coughing up blood. Often this is only a small amount of blood, but it can also be life-threatening.

Pneumothorax. In this condition, air leaks into the space that separates the lungs from the chest wall, and part or all of a lung collapses. This is more common in adults with cystic fibrosis. Pneumothorax can cause sudden chest pain and breathlessness. People often feel a bubbling sensation in the chest.

Respiratory failure. Over time, cystic fibrosis can damage lung tissue so badly that it no longer works. Lung function usually worsens gradually, and it eventually can become life-threatening. Respiratory failure is the most common cause of death.

Acute exacerbations. People with cystic fibrosis may experience worsening of their respiratory symptoms, such as coughing with more mucus and shortness of breath. This is called an acute exacerbation and requires treatment with antibiotics. Sometimes treatment can be provided at home, but hospitalization may be needed. Decreased energy and weight loss also are common during exacerbations.

Digestive system complications

Nutritional deficiencies. Thick mucus can block the tubes that carry digestive enzymes from your pancreas to your intestines. Without these enzymes, your body can't absorb protein, fats or fat-soluble vitamins, so you can't get enough nutrients. This can result in delayed growth, weight loss or inflammation of the pancreas.

Diabetes. The pancreas produces insulin, which your body needs to use sugar. Cystic fibrosis increases the risk of diabetes. About 20% of teenagers and 40% to 50% of adults with CF develop diabetes.

Liver disease. The tube that carries bile from your liver and gallbladder to your small intestine may become blocked and inflamed. This can lead to liver problems, such as jaundice, fatty liver disease and cirrhosis - and sometimes gallstones.

Intestinal obstruction. Intestinal blockage can happen to people with cystic fibrosis at all ages. Intussusception, a condition in which a segment of the intestine slides inside an adjacent section of the intestine like a collapsible telescope, also can occur.

Distal intestinal obstruction syndrome (DIOS). DIOS is partial or complete obstruction where the small intestine meets the large intestine. DIOS requires urgent treatment.

Reproductive system complications

Infertility in men. Almost all men with cystic fibrosis are infertile because the tube that connects the testes and prostate gland (vas deferens) is either blocked with mucus or missing entirely. Certain fertility treatments and surgical procedures sometimes make it possible for men with CF to become biological fathers.

Reduced fertility in women. Although women with cystic fibrosis may be less fertile than other women, it's possible for them to conceive and to have successful pregnancies. Still, pregnancy can worsen the signs and symptoms of CF, so be sure to discuss the possible risks with your doctor.

Other complications

Thinning of the bones (osteoporosis). People with cystic fibrosis are at higher risk of developing a dangerous thinning of bones. They may also experience joint pain, arthritis and muscle pain.

Electrolyte imbalances and dehydration. Because people with cystic fibrosis have saltier sweat, the balance of minerals in their blood may be upset. This makes them prone to dehydration, especially with exercise or in hot weather. Signs and symptoms include increased heart rate, fatigue, weakness and low blood pressure.

Mental health problems. Dealing with a chronic illness that has no cure may cause fear, depression and anxiety.

Prevention

If you or your partner has close relatives with cystic fibrosis, you both may choose to have genetic testing before having children. The test, which is performed in a lab on a sample of blood, can help determine your risk of having a child with CF.

If you're already pregnant and the genetic test shows that your baby may be at risk of cystic fibrosis, your doctor can conduct additional tests on your developing child.

Genetic testing isn't for everyone. Before you decide to be tested, you should talk to a genetic counselor about the psychological impact the test results might carry.

Cystic fibrosis care at Mayo Clinic

Show references

1. Symdeko (prescribing information). Vertex Pharmaceuticals Inc.; 2019. https://www.symdeko.com/how-symdeko-works. Accessed July 1, 2019.

2. Kalydeco (prescribing information). Vertex Pharmaceuticals Inc.; 2019. https://www.kalydeco.com/. Accessed July 1, 2019.

3. Orkambi (prescribing information). Vertex Pharmaceuticals Inc.; 2018. https://www.orkambi.com/. Accessed July 1, 2019.

4. Chest physiotherapy compared to no chest physiotherapy for cystic fibrosis. Cochrane Database of Systematic Reviews. 2015; doi:10.1002/14651858.CD001401.pub3.

5. Cystic fibrosis. National Heart, Lung, and Blood Institute. https://www.nhlbi.nih.gov/health-topics/cystic-fibrosis. Accessed July 1, 2019.

6. Cystic fibrosis. Genetics Home Reference. https://ghr.nlm.nih.gov/condition/cystic-fibrosis. Accessed July 1, 2019.

7. AskMayoExpert. Cystic fibrosis. Mayo Clinic; 2017.

8. Bronchiectasis. National Heart, Lung, and Blood Institute. https://www.nhlbi.nih.gov/health-topics/bronchiectasis. Accessed July 1, 2019.

9. Rafeeq MM, et al. Cystic fibrosis: Current therapeutic targets and future approaches. Journal of Translational Medicine. 2017; doi:10.1186/s12967-017-1193-9.

10. Cystic fibrosis. Merck Manual Professional Version. https://www.merckmanuals.com/professional/pediatrics/cystic-fibrosis-cf/cystic-fibrosis. Accessed July 1, 2019.

11. Frequently asked questions: Pregnancy FAQ171: Cystic fibrosis: Prenatal screening and diagnosis. American College of Obstetricians and Gynecologists. https://www.acog.org/Patients/FAQs/Cystic-Fibrosis-Prenatal-Screening-and-Diagnosis?IsMobileSet=false. Accessed July 1, 2019.

12. Simon RH. Cystic fibrosis: Treatment with CFTR modulators. https://www.uptodate.com/contents/search. Accessed July 1, 2019.

13. Simon RH. Cystic fibrosis: Overview of treatment of lung disease. https://www.uptodate.com/contents/search. Accessed July 1, 2019.

14. Solomon M, et al. Nutritional issues in cystic fibrosis. Clinics in Chest Medicine. 2016; doi:10.1016/j.ccm.2015.11.009.

15. Savant AP, et al. Cystic fibrosis year in review 2018, part 1. Pediatric Pulmonology. 2019; doi:10.1002/ppul.24361.

16. Savant AP, et al. Cystic fibrosis year in review 2018, part 2. Pediatric Pulmonology. 2019; doi:10.1002/ppul.24365.

17. Brown A. Allscripts EPSi. Mayo Clinic. June 14, 2019.

18. Drug trials snapshots: Trikafta. U.S. Food and Drug Administration. https://www.fda.gov/drugs/drug-approvals-and-databases/drug-trials-snapshots-trikafta. Accessed Dec. 21, 2019.

19. Trikafta (prescribing information). Vertex Pharmaceuticals Inc.; 2019. https://www.trikaftahcp.com/. Accessed Nov. 5, 2019.

20. Boesch RP (expert opinion). Mayo Clinic. Dec. 11, 2019.

21. Kayani K, et al. Cystic fibrosis-related diabetes. Frontiers in Endocrinology. 2018; doi:10.3389/fendo.2018.00020.

22. van de Peppel IP, et al. Diagnosis, follow-up and treatment of cystic fibrosis-related liver disease. Current Opinion in Pulmonary Medicine. 2017; doi:10.1097/MCP.0000000000000428.

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24. Moran F, et al. Non-invasive ventilation for cystic fibrosis. Cochrane Database of Systematic Reviews. 2017; doi:10.1002/14651858.CD002769.pub5.

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This inherited condition causes severe damage to the lungs, digestive system and other organs. Learn about improvements in screening and treatments.

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Musical Motion is a FREE learn & play class that encourages bonding while developing early learning and literacy skills in children. Sessions focus on creative activities that enhance brain development and build preschoolers’ social skills, language skills, motor skills, and more.

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Musical Motion Fall 2023 (EN & SP double sided)

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Early Steps Procedural Safeguards Summary

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The FAVI Deaf-Blind Collaborative serves the entire state of Florida 

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The Florida and Virgin Islands (FAVI) Deaf-Blind Collaborative

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The Florida and Virgin Islands (FAVI) Deaf-Blind Collaborative

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The Florida and Virgin Islands (FAVI) Deaf-Blind Collaborative

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Links to websites of groups that study or provide information about cerebral palsy. - Eunice Kennedy Shiver National Institute of Child Health and Human Development

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Links to websites of groups that study or provide information about cerebral palsy. - Eunice Kennedy Shiver National Institute of Child Health and Human Development

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Resources within the Division of Extramural Research (DER) include:

National Center for Medical Rehabilitation Research (NCMRR)
Through basic, translational, and clinical research, NCMRR fosters development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of people with physical disabilities, including cerebral palsy. NCMRR also coordinates rehabilitation research and activities across NIH, including leading the 2021 revision of theNIH Research Plan on Rehabilitation (PDF 1.51 MB).

Resources within the Division of Intramural Research include:

Program in Perinatal Research and Obstetrics (PPRO)
The PPRO conducts clinical and laboratory research on maternal and fetal diseases responsible for excessive infant mortality in the United States. The PPRO focuses on the mechanisms of disease responsible for premature labor and delivery, with particular emphasis on the role of subclinical intrauterine infection and inflammation. The prenatal diagnosis of congenital anomalies is also a major area of interest.

Section on Tissue Biophysics and Biomimetics (STBB)
The STBB carries out research that aims to understand fundamental physical mechanisms governing tissue-level physiological processes that are essential for life, or necessary to achieve a high quality of life. Another aim is to transfer new methodologies to the biomedical research and health care communities. An example includes the invention and successful dissemination of diffusion tensor magnetic resonance imaging from the bench to the bedside.

Other NICHD-supported resources include:

NICHD Brain and Tissue Bank for Developmental Disorders
This resource, located at the University of Maryland Medical School, is a tissue bank designed to advance the research of developmental disorders. The objective of this human tissue repository is to systematically collect, store, and distribute brain and other tissues for research dedicated to the improved understanding, care, and treatment of individuals with developmental disorders.

Neuroscience Research Support at NICHD
NICHDis committed to supporting research in the neurosciences, particularly as they affect developing systems and rehabilitation. NICHD supports the full spectrum of basic, clinical, and translational research in the biomedical and behavioral neuroscience arenas. In addition to NICHD-sponsored initiatives and investigator-initiated projects, NICHD also supports neuroscience research through theNIH Blueprint for Neuroscience Research.

American Academy of Pediatrics (AAP)
The AAP is a professional organization of pediatricians and issues policy statements, clinical reports, technical reports, and practice guidelines on a broad range of topics.

American Academy of Neurology (AAN)
The AAN is the world's largest professional association of neurologists.

Cerebral Palsy International Research Foundation
The foundation funds research and educational activities relating to understanding and curing cerebral palsy and caring for people who have it.

Gene Expression Database Project
This NICHD-supported project integrates gene expression information from the mouse and provides a searchable index of published experiments on endogenous gene expression during development.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
NIAMS supports research on the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.

National Institute of Neurological Disorders and Stroke (NINDS)
NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. NINDS is the leading Institute at NIH for research on cerebral palsy.

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.

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Resources within the Division of Extramural Research (DER) include: National Center for Medical Rehabilitation Research (NCMRR) Through basic, translational, and clinical research, NCMRR fosters development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of people with physical disabilities, including cerebral palsy.

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Links to Other Resources on Cerebral Palsy - CDC

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Links to Other Resources on Cerebral Palsy - CDC

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Centers for Disease Control and Prevention

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National Information Center on Children and Youth with Disabilities (NICHCY)external icon
NICHCY provides information on disabilities and disability-related issues for families, teachers, and other professionals. NICHCY has a fact sheet about cerebral palsy that includes information on topics such as signs of cerebral palsy and treatment, as well as tips for parents and teachers. NICHCY staff will also give information and referrals over the phone (800-695-0285) or by email(nichcy@aed.org).

Resources for Adults with Cerebral Palsy

Easter Sealsexternal icon
Easter Seals' Adult and Senior Services program provides a variety of home and community-based services affording adults and senior opportunities to live, learn, work, and play as a vital part of their own community or neighborhood. To find an Easter Seals program near you, please visit http://www.easterseals.com/site/PageServer?pagename=Advanced_Affiliate_Searchexternal icon

National Institute of Neurological Disorders and Stroke (NINDS)external icon NINDS has a brochure on cerebral palsy that includes information on the special health challenges that adults with cerebral palsy face. The brochure is available in both English and Spanish.

Scopeexternal icon Scope works with individuals with disabilities of all ages and their families across England and Wales. Their website offers information on aging and cerebral palsy.

State Vocational Rehabilitation Agencyexternal icon State Vocational Rehabilitation Agencies coordinate and provide counseling, evaluation, and job placement services for people with disabilities. This website provides contact information for the Vocational Rehabilitation Agency in each state.

The Arcexternal icon The Arc is a community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. The Arc's resources that may be relevant for adults with cerebral palsy are below.

1. The Arc's state and local chaptersexternal icon provide supported employment, job training, transition planning, respite care, supported living, and transportation, among other services and supports, to individuals with developmental disabilities.

2. The National Council of Self Advocates of The Arcexternal icon is the formation of a group of leaders representing the full spectrum of ages and abilities across the national chapter network. By joining, individuals have the opportunity to network with other self-advocates.

United Cerebral Palsy (UCP)external icon United Cerebral Palsy's affiliates provide services such as housing, physical therapy, assistive technology training, individual and family support, social and recreational program, community living, employment, and employment assistance. This website can help you find an affiliate in your area.

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data and statistics about cerebral palsy

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Links to Other Resources on Cerebral Palsy | CDC

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National Information Center on Children and Youth with Disabilities (NICHCY)external icon NICHCY provides information on disabilities and disability-related issues for families, teachers, and other professionals. NICHCY has a fact sheet about cerebral palsy that includes information on topics such as signs of cerebral palsy and treatment, as well as tips for parents and teachers.

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Allyson Bates, OTD, OTR/L, SWC, PAM

March is Cerebral Palsy Awareness month, which gives us the opportunity to both celebrate and educate others about cerebral palsy (CP). We want to answer your questions about cerebral palsy because the more you know, the more you are able to inform others and increase awareness! Here are the answers to the top 5 questions I am asked about cerebral palsy:

1. What is Cerebral Palsy?

Cerebral Palsy is a neurological condition that affects body movement. "Cerebral" refers to the brain and "palsy" refers to the impairment of motor function.

2. What causes Cerebral Palsy?

A lot of people want to know if cerebral palsy is genetic or hereditary. Cerebral palsy is not a hereditary condition and genetics do not directly cause cerebral palsy, but both can be factors that increase the likelihood of cerebral palsy occurring.

Cerebral palsy is a result of abnormal brain development or damage to the developing brain before, during or after birth.  To learn more about genetic and hereditary influences and common causes of cerebral palsy, check out cerebralpalsy.org and the .

3. What are some challenges someone with cerebral palsy will face?

The brain helps control our motor functions and an injury to the brain can cause weakness, lack of coordination and abnormal muscle tone. Someone with cerebral palsy might have difficulty with their balance and coordination, affecting their ability to navigate their environment and function independently in daily tasks. Children with cerebral palsy frequently have developmental delays and are slow in reaching milestones such as rolling, sitting, crawling and walking.

4. What are the treatment options for cerebral palsy?

Cerebral palsy differs in and , which means it can present differently from one person to another.  It is important to develop an individualized plan to work on the specific challenges that are limiting function and quality of life for each person.

Occupational therapy may focus on improving upper body function, posture and coordination to participate in day-to-day activities such as dressing and eating. Physical therapy might focus on increasing balance and walking with adaptive devices and orthotics. Speech and language pathology can address different ways of communicating and swallowing impairments.

There are also a variety of new treatment modalities, surgeries and medications available to better meet each child's needs. At the Neurological and Physical Abilitation Center (NAPA), we use intensive therapy and new treatment approaches such as NAPA parent group robotic gait training, NeuroSuit, body weight support systems and Cuevas Medek Exercise to enhance our children's progress in meeting their goals. If you are currently considering different treatment options for your child, consider joining this to connect with other parents of children with disabilities and hear more about their experiences.

5. What can I do to spread awareness during CP awareness month?

Share what you have learned with others, including these additional cerebral palsy awareness facts and statistics:

Cerebral palsy is one of the most common childhood disorders and the most common motor disability in childhood

Globally over 17 million people have cerebral palsy

Cerebral palsy is a lifelong disability; it is not progressive but may look different over time

Children with cerebral palsy are likely to have other impairments in addition to motor disability

The lifetime care costs of a child with cerebral palsy exceeds $1 million

To learn more about living with cerebral palsy, read Cody's story . To access new research check out the cerebral palsy research network .

References:

About the Author

Allyson Bates is an occupational therapist that works with children with cerebral palsy and other diagnoses to promote independence and enjoyment in meaningful daily activities. She has worked at the Neurological and Physical Abilitation Center (NAPA) for over three years and is passionate about sharing knowledge and research to increase awareness about the kids and families she works with.

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Cerebral Palsy Awareness Month: Top 5 Questions We Get About CP

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March is Cerebral Palsy Awareness month, which gives us the opportunity to both celebrate and educate others about cerebral palsy (CP). We want to answer your questions about cerebral palsy because the more you know, the more you are able to inform others and increase awareness!

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On World Cerebral Palsy Day, we recognize the strength of the children and their caregivers in WPP partner countries who face the challenges of cerebral palsy daily.

WPP is privileged to have provided more than 1,000 services to date for children with cerebral palsy through our orthopedic programs. We thank our many partners and medical volunteers for helping WPP programs deliver specialty care to these kids in orthopedic surgery, various therapies, and orthotic provision so that we help, as CP360 states, “children with cerebral palsy have the same rights, access and opportunities as anyone else in our society.”

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The UCP Annual Conference provides an opportunity for affiliate leadership to network and share expertise. Information presented will incorporate major trends in services, treatments, and research in the disability community with their affiliate.

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The UCP Annual Conference provides an opportunity for affiliate leadership to network and share expertise. Information presented will incorporate major trends in services, treatments, and research in the disability community with their affiliate.

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There will be several track opportunities on development and fundraising, board development, leadership, and others to support and enhance knowledge in various affiliate staff roles.

Topic experts will highlight the latest advancements in medical research related to cerebral palsy and other intellectual and developmental disabilities.

Learn about new and ongoing innovations in the disability service industry.

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April 30, 2023 @ 1:00 PM - 8 Fremont Street Experience, Las Vegas, NV 89101, USA

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Find your State AT Program and your State Assistive Technology and Telework Financial Loan Programs.

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Find your State AT Program and your State Assistive Technology and Telework Financial Loan Programs.

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Florida Alliance for Assistive Services and Technology, Inc (FAAST)

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State Contacts - Statewide Programs - RESNA Catalyst Program

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AT Resources | Find a State Program | Browse by Topic | Meetings Archive | Teleconferences Archive | Upcoming Events

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The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

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Join us for the second annual UCP 2023 Conference on Latinos with Disabilities

A national online conference spotlighting the role, impact and influence of Latinos in the disability community. Open to the public.

The three-day online event is Oct. 17-19, 11 a.m to 3:30 p.m. Eastern each day.

The goal of the conference is to provide a platform for discussions and presentations on issues impacting Latinos in the disability community. While many of the topics addressed will be of interest to the general disability community, the conference highlights the distinct ways (culturally, socially, economically and historically) that Latinos with disabilities, their families and service providers shape our society and communities at large.

Among the key outcomes of the conference will be the "2023 State of Latinos with Disabilities" report.

Registration and conference details at ucp.org/2023cld. Need more information or want to become a sponsor, contact James Garcia at jgarcia@ucp.org.

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The Necessity of Newborn Hearing Screenings & Early Intervention

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Early Intervention - Blog - Hearing Health Foundation

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What Are the Symptoms and Causes of Infantile Spasms?

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What Are the Symptoms and Causes of Infantile Spasms?

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The main symptoms of infantile spasms, also called West syndrome, are seizures and spasms. They don't last very long -- only a few seconds. They happen in clusters. That means one follows right after another.

Seizures can be mild or forceful. Your baby may have more than one type. In a mild seizure, they might look like they're nodding their head. A more violent seizure might make them stiffen up, fling their arms out, and bring their knees up toward their body. Or their arms and legs might go straight out as they throw their head back. Some seizures only affect one side of their body. They might cry right before or right after they have a seizure.

Your baby may also seem to twitch or jerk a muscle. You might hear the doctor call this myoclonus. There are two types:

Positive myoclonus: They twitch because their muscles suddenly tense up.

Negative myoclonus: Their muscles suddenly relax.

Myoclonus is involuntary. That means it isn't something your baby does on purpose. They can't control when it happens. It's like the sudden twitch or jerk you sometimes feel as you fall asleep.

Symptoms in the Brain

Even though they're tiny, there's a lot of electrical activity going in your baby's brain. If it's abnormal, they might have seizures. Your baby's doctor may use electroencephalography -- EEG for short -- to measure their brain activity while they're awake and asleep. They'll put sticky tabs called electrodes on their head, and a machine will record the data they pick up. Babies with infantile spasms often have an abnormal pattern of electrical activity in their brains. It's called hypsarrhythmia.

The doctor might also want to do scans of their brain. Computed tomography (CT) and magnetic resonance imaging ( MRI) scans create pictures that will let them see if there are any parts of it that haven't formed the right way. These pictures can also show lesions, or places where injury or infection may have damaged their brain.

Other Signs You Can't See

A condition called tuberous sclerosis is a common cause of West syndrome. It can cause noncancerous tumors that often look like colorless bumps on your baby's skin. The doctor may use a special lamp to check for them.

Blood and urine tests can help the doctor figure out if your baby has an infection that's causing West syndrome. The doctor might also want to do a lumbar puncture (you'll often hear this called a spinal tap) and take some of the fluid out of their spine to check for meningitis. They can also use that fluid to see if a genetic problem is to blame for their West syndrome.

What Causes West Syndrome?

Anything that damages the brain can cause infantile spasms. Some of the causes happen before a baby is born, and some happen after birth.

The most common cause is an inherited condition called tuberous sclerosis complex. It makes noncancerous tumors grow in different body parts, like your baby's brain, skin, kidneys, or other organs. If your baby has them, you might notice colorless bumps on their skin.

Genetic conditions like Down syndrome can cause these spasms, too. Or it could come from a noninherited problem with your baby's genes.

Other causes of West syndrome include:

Brain injury

Problems with the way the brain formed

Changes in brain structure

Lack of oxygen to the brain

Brain infections

Lesions on the brain

Bleeding inside the skull

Inflammation in the brain (also called encephalitis)

Metabolism disorders

Vitamin B deficiency

Sometimes, doctors can't find a cause for West syndrome. But there's no evidence that it could be related to vaccinations or your baby's sex.

Symptoms You Can See

West syndrome can affect your baby's autonomic nervous system, the nerves in their body that control things that happen automatically, like their heartbeat and how wide their pupils are. During a seizure, your baby may:

Turn pale or turn red

Sweat

Have big pupils

Have watery eyes

Breathe faster or slower

Have a faster or slower heartbeat

Changes in Development

As your baby grows, they reach milestones. They roll over, recognizes your voice, or puts things into their mouth. If your baby has West syndrome, it may take them longer to reach these points. Doctors call this delayed development.

They might also forget how to do things they already learned how to do. For example, it may seem like your baby forgot how to sit up. If they were chugging along and meeting milestones, they may seem to stop or slow down. Your doctor may call this developmental regression.

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What Are the Symptoms and Causes of Infantile Spasms?

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The main symptoms of infantile spasms, also called West syndrome, are seizures and spasms. They don't last very long -- only a few seconds. They happen in clusters. That means one follows right after another. Seizures can be mild or forceful. Your baby may have more than one type.

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Know the Signs to Stop Infantile Spasms!

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Know the Signs to Stop Infantile Spasms!

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Know the Signs to STOP Infantile Spasms!

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What are infantile spasms and what do they look like? Infantile spasms (also called IS) are also known as West syndrome because it was first described by Dr. William James West in the 1840s. These seizures may be subtle and be confused with other normal baby behaviors or colic. IS can appear in diff…

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Infantile spasms are a very specific type of seizure with a characteristic age of onset 

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Infantile spasms are a very specific type of seizure with a characteristic age of onset (a typical age when seizures start).

They are nearly always accompanied by a very characteristic pattern on the electroencephalogram (EEG). This pattern is called 'hypsarrhythmia'.

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West syndrome (infantile spasms) - Epilepsy Action

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Infantile spasms are a very specific type of seizure with a characteristic age of onset (a typical age when seizures start). They are nearly always accompanied by a very characteristic pattern on the electroencephalogram (EEG). This pattern is called 'hypsarrhythmia'.

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Learn more about Florida Medicaid and SSI/SSDI

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Learn more about Florida Medicaid and SSI/SSDI

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Free Workshop on Government Benefits - Covering Medicaid and SSDI.

Please join us to learn about the application process, eligibility for special cases, other medical service providers, navigating the denial process, and resources in Florida.

When: January 25, 2023, 10:00 am

Where: This is a VIRTUAL event.

Please register online @ https://us06web.zoom.us/.../tZcuf...

To see the flyer for this event, please visit: https://www.smore.com/3mdaj

We hope to see you there!

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FND-Gulf Central Early Steps workshop Learn more about Florida Medicaid and SSI SSDI invitation.pdf