Daughter needing diagnosis

[Nickel]

Daughter sweat test intermediate

My child is 12 years old. She has had multiple pneumonias and reoccurring lung problems since she was 5 and started school. Shes been diagnosed severe asthma and has selective IGA deficiency. Her pediatrician suspects CF but im not sure. Her first pneumonia was at 20 mths and since shes had many. One time 3 in 6 weeks time. Shes had URIs, bouts chronic diarrhea, ear infections, strep, febrille syndrone, gastritis to name a few. Her xrays show cp angle blunting and is chronic in her left lung(scarring of the lining of lung), mild acute hyperinflation, pleural thickening, pleural effusions, hyperaeration, bronchoalveolar(BAL), and wall thickening. Shes had 2 bronchs and has mucus plugging. Shes always wheezy and her lung function drops in the 40s and wven 30s we dont even notice because she can't tell. Shes been fatigued more than normal, belly aches, side hurts, etc. etc. What symptoms do your children have??? Does this sound like CF ??

 

[Printer]

It certainly seems like something that needs to be checked out. Her Doctor suspects CF but what is he/her doing to find a proper Dx. Your daughter needs to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST.

 

[Nickel]

I agree. I just spoke with her Dr. and shes sending the referral to a CF specialist in Lexington KY.

 

[Rebjane]

Hope it's not CF but definately needs to be addressed and ruled in or out. When is her appointment with the CF doctor? A sweat test is a test they can do as well as blood work for looking for the genetic mutations for CF. The Cystic Fibrosis Foundation at www.cff.org is a recommended site with reliable information about CF . My daughter's symptoms of CF were apparent before she was even born; she had a meconium ileus a birth; requiring belly surgery to fix the obstruction. She needed pancreatic enzymes(oral pills) to digest her food since she was born. If she did not take these she would not gain weight and be malnourished. My daughter also has lung symptoms; we do breathing treatments and chest PT every day several times a day. She uses a VEST for chest PT. She is now almost 16 years old. Hoping you already have had your appointment. Please feel free to ask questions,

 

[Rebjane]

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

Found this on the CF website lots of good info.

 

[Nickel]

So we went to pulmonary last week. Her dr thought we had already had the blood work up to test for the cf mutations, When I asked about it. So she had those drawn the same day. He said they should be back in 3-4 weeks. We will see. Im nervous but releived in a way just knowing its a for sure answer to the cf question. I just want her to have all the treatment available for whatever is going on. What lung problems or symptoms does your child show the most?

 

[Nickel]

Thanks so much for your help. I greatly appreciate it!!!!

 

[Rebjane]

I think every child and adult with CF is individual. The waiting for results is the hardest part. For CF; they are making such progress with treatment the outlook is very hopeful. Hoping you get the answer soon.