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Special Needs
CF anyone?
Hello all! I'm new here, well new to this board not new to the bump. I was just curious if anyone else has a child with cystic fibrosis. Our daughter was diagnosed at 6 days old with the F508 mutation. It was overwhelming at first because DH and I didn't know we were carriers. So far though she is doing great. Currently she is taking Creon to replace her pancreatic enzymes and gets chest PT done twice a day with a percussion cup. She is also taking AuquaDeks vitamins daily. They are probably my least favorite because they are bright orange and stain everything! After her next pulmonology appointment in November we will start her on daily breathing treatments to help keep her lungs clear. It's been hard dealing with the reality of her diagnosis and also being first time parents but we're getting through. I wanted to post her because everyone seems very understanding and I thought it would help to talk with others going through the same struggles. Thanks for reading!
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Re: CF anyone?
Sorry that you're here, but so glad to have another CF mom!
We're also homozygous F508. We've had a rough go of it so far, but 2 surgeries & a g-tube later, we're hanging in there.
AquaADEKS is awful. We switched to SourceCF and it isn't much better. I've found that between what the enzyme does to stool & the vitamin...everything seems to get stained.
Sorry to sound so excited to have another CF mom here...it's just that our challenges are a little different than some of the more common special needs moms!
Our little guy has responded well to treatment too, but he seems to like to be in special groups...1 in 4 for CF, 1 in 5 for the meconium ileus...and now eosinophilic esophagitus which turned up a pork allergy...and the enzymes are made of pig. So, as BostonKisses2 said, it does get overwhelming at times.
I find a ton of useful information at cysticfibrosis.com. That site was incredibly helpful when we were dealing with ostomy bag issues. There are lots of families there on the forum.
I'll PM you with my personal email address...as I check that more often than this.
I don't know if I should even post here but I did want to tell you ladies you will be in my thoughts and prayers. We had a lot of ups and downs with DS and they thought he may have CF. Just the thought that he may have it was difficult enough that I have to say you ladies are so strong to go through what you go through on a daily basis.
Thank you!
Our DS is over two and doing great this all his meds and therapies. We transitioned to the vest at age two because of the squirmy factor and we are expecting again. He's been sick with normal childhood illnesses and his lungs are clear. We found out at day 10 he had CF and was very shocked and overwhemled.
Our DS is handling everything well. He holds the neb himself during the vest treatments while Dora is on.
Good Luck and feel free to contact privately if you have any questions.
My amazingly beautiful cousin is 42 years old and living well with CF and type 1 DM. She incorporates western and eastern medicine into her medical regime and is a national speaker on CF at medical conventions.
Your LO has a tough road to run, but with todays technology thier future is Bright!!!
https://www.naplesnews.com/news/2006/jul/08/healing_her_hands/