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The Cystic Fibrosis Foundation created this informational video about the sweat test to inform parents about the procedure.

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a look into life with CF for an infant

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An inside look at the life of a baby with Cystic Fibrosis.

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a helpful video about Schooling and CF

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some daily treatments those with CF undertake.

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See how different airway clearance techniques work to help you clear the thick, sticky mucus from your lungs. https://www.cff.org/Life-With-CF/Treatments-and-Therapies/Airway-Clearance/

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A persistent cough that produces thick mucus

Wheezing

Breathlessness

Inflamed nasal passages or a stuffy nose

Lung infections

recurring pneumonia

A higher than normal level of salt in their sweat leading to Salty tasting skin

Foul-smelling, greasy stools

Poor weight gain and growth

Intestinal blockage

Pancreatitis

Infertility

Exercise intolerance

Severe constipation that can lead to rectal prolapse

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Cystic Fibrosis also known as CF is a Genetically Recessive disease meaning that both parents MUST be carries of this gene to produce a child with CF. CF affects the lungs and other organs and causes a build up or thick mucus that builds up clogging the effected organs. It severely affects the respiratory and digestive symptoms. The degree of CF varies from person to person ranging from relatively good health to extremely poor health.  CF is a chronic, incurable and fatal disorder.  Treatment for CF includes ACT’s,  medications including mucus thinners, and lung transplants.

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How can teachers help my child and others with CF?

v  Because CF can affect the digestive system and cause abdominal pain and diarrhea, bathroom access should never be restricted but readily available and encouraged.

v  Along those same lines CF can cause very foul smelling gas that cannot be prevented, try not to draw attention to the gas passing.

v  Exercise for a CF should be promoted as much as possible, some days will be harder than others depending on the child’s breathing but when he or she exercises the mucus loosens and helps their lungs to open up and strengthen.

v  CF children should have very very limited caffeine intake but be encouraged to hydrate with water or sports drinks to replenish their extreme salt loss.

v  CF affects the lungs and causes a lot of coughing, allowing the child to have a water bottle, tissues to cough into and hand sanitizer within reach for frequent use is very important.

v  CF children need to keep a distance from those who are sick because they are far more susceptible to germs.

v  Wash hands often!! With soap, this should be a common practice anyways but around CF limiting the spread of germs this is one of the best lines of defense.

v  Patience, a CF child may likely have frequent absences for medical treatments, and hospital stays, or may miss class time for breathing treatments. Be accommodating with makeup work or take home lesson plans. If possible consider allowing recordings of class time so the child can review.

v  In the event that there is more than one CF child, they must be kept at least 6 feet from each other to avoid cross-infection.

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https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

This a great website to learn about CF in general , it explains it, gives you ideas of what CF is like, explains treatment possibilities and gives a look into research conducted in order to help treat and cure CF.

https://www.cfsource.com/uncovering-progression/?gclid=CjwKCAiAt8TUBRAKEiwAOI9pAHVMv-0qmr76rE6Ssq6vRrSCotw8rwDdCmlgetG2i7HgGYFKi_Xs0hoC9iAQAvD_BwE#lung-damage?utm_medium=cpc&utm_source=google&utm_term=cystic%20fibrosis%20resources

Another great educational site that give a ton of insight into CF that really breaks down the disease. Also provides additional links for research, and various CF foundations.

http://thebonnellfoundation.org/about/

A foundation started by a family directly affected by CF that provides assistance and resources to families affected.

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When my son was five weeks old we found ourselves sitting in the pediatricians in search of why he had a cough, and why no matter how much he ate he just didn’t seem to be gaining weight. I was a first time mother and had headed all the warnings like “do not take your newborn out”, “anyone who comes into the house must wash their hands and use sanitizer before coming in contact with baby”, “clean everything before baby arrives” and yet somehow my poor jack had developed this persistent cough. And so at the doctors insistence a sweat test was performed, where they use a drug to induce sweating in the arm soak it up with a filter and then test the  sodium and chloride content. His levels were high, far too high, tests were done and then the news came. “It’s Cystic Fibrosis.” Not knowing anything about it I immediately went home and used WEBMD where the words CHRONIC, FATAL and INCURABLE leaped out through the page. There were a few stages I went through shortly after the diagnosis including mourning; I mourned for Jack for the life I wished he could have had, knowing that it the diagnosis of CF meant a life far different than that which I imagined. Anger; I was furious how could I not have known? How could the doctors not known? Paranoia; knowing now how susceptible to germs he was I refused to let anyone near him, we didn’t go out unless we had to, bleach was my best friend and I used her  on everything often.

And then I realized I was going to help my jack fight, I was going to give him the best life I could and he was going to be as normal a child as possible. We got Jack set up with an excellent CF specialist who put him on breathing treatments, medication and who held my hand at all hours of the day and night when jack had bad moments. We were connected with the Cystic Fibrosis foundation to find a care center that works with Tricare (our medical insurance). I joined a support group and we have been connected trough Http://clairesplacefoundation.org  to other families facing CF. we were connected with a social worker who helps us with Emotional support, counseling, Financial and benefit advice, and charity referrals. Most importantly we are taking life one day at a time.

Today jack is a rough, tough, spunky and energetic 3 year old on good days, on bad ones he’s in pain, weak and breathless. We live for the good days where he runs into his preschool with a smile on his face. His school is accommodating they make sure jack is comfortable and always let us know when there’s any flu or cold going around so we can make sure jack knows to be vigilant about hand washing and keeping distance.  Because my husband is enlisted we have great medical benefits, otherwise the many many hospital stays, and ER visits would be financial draining.  Luckily we can focus on helping jack be jack.  Knowing life may be harder in the future for him we make each day the best we can for him. Currently there’s hope jack will live well into his thirties, but with research and treatment always expanding we have hope for an even longer life.