https://padlet.com/laurennemanim/cysticfibrosis My personal struggle with my daughter and CF en-us 2019-02-24 19:52:26 UTC 2019-02-25 01:03:38 UTC hello@padlet.com laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334624388 My daughter Anna who is 7 years old has Cystic Fibrosis and its been quite a struggle emotionally and financially dealing with this disease. Anna was diagnosed with this inherited disease when she was only a few months old and has been struggling since. I personally went through so much trying to figure out the best treatments and resources to deal with this disease as there is no known cure. She struggles everyday but she is still the strongest person I know.
Being a parent to a child who has this disease is very hard knowing that no matter what you do, there is no cure. This gives me the drive to try to make Anna's life as comfortable as possible to help her live a life where shes not constantly reminded she has this disease.....as much as possible. Since they found out Anna was diagnosed with CF so early on in her life, she has somewhat of a grasp on the disease and knows what activities and daily tasks she can handle and what she can do to have a good day as much as possible. I know there are other children and even adults that weren't informed or at least diagnosed about this disease and found out later in life so they might be having a harder time managing the symptoms and infections they might have had or still are getting frequently. Anna is typically developing and she fits in like a glove (as much as children can given they are all different) with the exception of her having to sometimes take a minute to catch her breath. I am very lucky that Anna's teachers all had experiences with children who has CF so not only did they accommodate what I needed, they already knew the basics of it. I always made sure to thank them and let them know as well as the principal and director how great of a job they did! It really takes a village, and I had a great one.]]> 2019-02-24 20:56:55 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334624388 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334624740  Cystic fibrosis (CF) is an inherited disease that causes thickened mucus to form in the lungs, pancreas and other organs. In the lungs, this mucus blocks the airways, causing lung damage and making it hard to breathe. CF affects a specific protein called cystic fibrosis trans-membrane (CFTR) that controls the normal movement of sodium, chloride, and water in and out of the cells in different parts of the body. People with CF either have abnormal or too little CFTR. There are many symptoms of CF, but the most common are: chronic coughing, recurring chest colds, wheezing, shortness of breath, frequent sinus infections, and allergies that last year round. Symptoms can start as early as infancy especially following upper respiratory viral infections. CF is an inherited or genetic disease caused by the parents each having a copy of the abnormal CF gene therefore it is not contagious and people can't catch it. It is possible to pass it on genetically, even if you yourself do not have it and have no family history of it from either side, if you and your partner both carry the gene and have a child together. While it is genetic, there are factors that affect how severe the CF may be. These factors are genes, environment and lifestyle, and age. There are five different classes of how damaged the CFTR protein function is. The first three classes are more severe. People with CF need to consume a large number of calories to maintain and keep up with their weight and growth which isn't exactly easy. Movement and physical activity are great ways to keep lungs healthy. Smoking is a huge NO when you have CF, including secondhand smoke. Lastly, the older you get, the worse you get and each passing year you experience a small decline in lung function.  ]]> 2019-02-24 20:59:21 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334624740 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334625410 There are four different ways to diagnose CF.

1. Newborn screening. The newborn screen shows infants who have a high level of an enzyme called immunoreactive trypsin in their blood which happens when there is an injury to their pancreas. If this test shows up abnormal, they repeat the test. Next, they refer the infant for further testing as "false-positive" tests could happen. This means taking a blood sample to check whether the infant has two genes that cause CF and/or performing a sweat test.

2. Genetic testing. For couples who plan on having children, genetic testing determines if and/or what mutation their future child may have. More than 10 million Americans are carriers of  a CF gene so genetic testing could be important. For every pregnancy, there is a one-in-four chance that the child will have CF if both parents are carriers.

3. Sweat test. As mentioned with the newborn screening, they may perform a sweat test. Sweat is collected from a small area on the child's forearm where they measure the chloride levels. Children who have CF have high levels of chloride in their sweat due to a lack of CFTR, which prevents the salt on the skin from being reabsorbed back into the sweat glands.

4. Measuring nasal lining. Another way to confirm the diagnosis is to run a small electrical current across the nasal lining (epithelium). Different solutions are applied to the nasal lining and the electrical current is measured. People with CF respond very differently than those without CF to this test, and it may help confirm a diagnosis.]]> 2019-02-24 21:04:08 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334625410 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334644737 There is no know cure but, treating the respiratory tract is very important to prevent or slow down the long-term lung damage from CF.
The options of treatment are:
-Airway Clearance Therapy
-Mucus Thinning Medication
-Enzymes and Nutrients
-Antibiotics and Anti-inflammatories
*More medications are in clinical trials and expected to be approved in the near future.]]> 2019-02-24 23:25:02 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334644737 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334645471 -There is 30,000 cases of CF in the US
-There is 70,000 cases worldwide
-60 years ago children with CF didn't survive childhood
-Life expectancy over the last 50 years has rose to 40 years old.
-While it has been seen in all racial groups, it is most common among Caucasians and rare for people from far east and Native Americans.]]> 2019-02-24 23:31:26 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334645471 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334645937 Whether you are a parent who is looking for a guideline of what to discuss with your child's teacher or you are a teacher who has a student or students with CF in their classroom there are ways to accommodate and make the child feel comfortable and welcome in the classroom. I would first suggest for the parents to make a list of everything that needs to be discussed about their child (their diet, their physical abilities, etc), and make sure you meet with their teacher to go over every detail so there is nothing missed. I prepared some topics that I found necessary to discuss with Anna's teacher which made for a great start of the school year!

-Discuss the child's diet. What they like and don't like,  how much they eat per meal, what kind of snacks they like and need, etc. Some schools have restrictions on what the child can bring whether it to protect children with nut allergies or allergies in general, whether the child is consuming something with too much sugar, etc. Make it clear that the child is given meals and snacks that is beneficial to them keeping up their proper weight while still respecting other children's allergies.
-Make sure the teacher understands that the child may need some extra time to finish their meals and may need to eat snacks more frequently and give them that time without having them miss out on any outside/inside playtime, activities, or classwork.
-Make sure the child has access to a bathroom at all times. I can't stress this enough, children embarrass so easily so discuss a way with the teacher on how your child can go to the bathroom as often as they need without drawing attention to themselves whether the teacher allows them to get up and go as needed, or giving some sort of signal, etc. 
-Let the teacher know that your child passes gas from time to time unintentionally and gets really embarrassed. This is a hard one to find a solution to except maybe having some white noise in the classroom so it is not completely silent which might help the child. 
-Coughing is a big part of CF with all the excess mucus so make a plan with the teacher that your child will be able to have a water bottle, box of tissues, hand sanitizer, and a small trash next to their seat or desk. The child may also get embarrassed if they are constantly getting into fits of cough so going back to the white noise it would help draw attention away from the child.
-Physical activity is very important and helpful for children with CF, although they might not be able to do as much as their peers in some cases, it still is important because it helps loosen the mucus that clogs the lungs and strengthen the muscles used to breathe. 
-Exercise also helps with social interactions with classmates. Make sure the teacher is including your child in anything he or she may be interested in, even if the teacher is worried it may be too much for your child, they know their own limits and can stop when needed. 
-Make sure you pack, or make sure your child has access to enough liquids to stay hydrated. Make a plan with the teacher about how your child could drink 6-12 ounces of fluid every 20-30 minutes.
-Make it extremely clear, maybe even have your doctor write a recommendation that it is crucial your child is not exposed to ANYONE that is sick. See if your teacher would be able to let you know if there is a child brought to school sick, or developed it over the day so you have the option to take your child home or pick them up early. If there are any other children with CF, it is really important that they do not spread germs among each other as they pose a significant danger to each other. 
-Explain to the teacher that while your child may be specifically more at risk when other child spread germs, it is just good practice to make sure all students cough or sneeze into a tissue and if they don't have one at the moment make sure they cover themselves in their elbow and that everyone makes sure they are constantly washing their hands. Add on that it would be for the teachers best interest too!
-Lastly, make sure the teacher is aware your child may miss a lot of school for different reasons including medical treatments. This is an important reason why they have an IEP or 504 plan.

I know this may seem like a lot to ask of teachers but it is your right! Just make sure you help the teacher out as much as you are able to if they are accommodating your needs. Don't forget being a teacher is very rewarding but also a hard job!


]]> 2019-02-24 23:35:17 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334645937 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334652147 Learn About Cystic Fibrosis
https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/cystic-fibrosis/learn-about-cystic-fibrosis.html
About Cystic Fibrosis
https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
Living With Cystic Fibrosis
https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/cystic-fibrosis/living-with-cystic-fibrosis.html
Cystic Fibrosis Care
https://www.cff.org/ccd/
Finding Resources
https://www.cff.org/Assistance-Services/Insurance/Your-Insurance-Plan/Find-Resources-CF-Foundation-Compass/
CF and School
https://www.cff.org/Life-With-CF/Daily-Life/CF-and-School/
For Teachers
https://www.cff.org/Life-With-CF/Daily-Life/CF-and-School/For-Teachers/
Managing CF In College
https://www.cff.org/Life-With-CF/Transitions/Managing-My-CF-in-College/
IEPs and 504 Plans
https://www.cff.org/Life-With-CF/Caring-for-a-Child-With-CF/Working-With-Your-Childs-School/Individualized-Education-504-Plans/
Financial Help
https://www.needymeds.org/copay_diseases.taf?_function=summary&disease_eng=Cystic%20Fibrosis]]> 2019-02-25 00:27:19 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334652147 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334653359 2019-02-25 00:34:24 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334653359 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334653624 2019-02-25 00:36:22 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334653624 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334653694 2019-02-25 00:36:55 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334653694 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334656293 The last thing I have to add is that I really wouldn't have been able to give Anna the support she needed without the Cystic Fibrosis Foundation. They truly helped out in every single way they could! They even had special help in case of a hurricane which I am so lucky I didn't experience. I spent so much time calling doctors, hospitals, nurse hotlines, etc. and googled 24/7 and I found this foundation which was everything in one for me! I was really struggling financially because getting this specific help is not cheap, along with me having to take off so much time from work. I didn't mind at all to help Anna of course but it does take a toll and matters when you have all these bills piling up. I also had found a great website that helped with different types of financial assistant specially for the diagnosis of CF which I included in the list of resources. All of those resources I listed are really what helped me and Anna and I am so happy to share all this information with anyone who could benefit from it!]]> 2019-02-25 00:53:28 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334656293 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334657341 2019-02-25 00:59:15 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334657341 laurennemanim https://padlet.com/laurennemanim/cysticfibrosis/wish/334657478 2019-02-25 01:00:02 UTC https://padlet.com/laurennemanim/cysticfibrosis/wish/334657478