LondonFog214
New member
In our Doctors we trust...At the beginning of this year my 14 y/o son had a series of acute pancreatitis which landed him in the hospital for about 2 months. He missed about the last 3rd of his 8th grade. He has a history of a chronic cough since age 18 mths, relux as an infant until 9 months old(he threw up everything),chronic bronchitis and pneumonia, dx of allergies and asthma. He saw a cf pulmonologist 5 years ago referred by his ped. and he said that our son's chronic cough was a habitual tick and we needed to verbally correct him and tell him to stop coughing. This guy is head of the cf center in our county and supposedly a God in his field!!! He NEVER sweat tested him or brought up CF. No one ever did until his 2nd pancreatic attack this spring. His GI Dr ordered it and came up positive in a non CF center(98) so it was not recognized. Dna was sent out but several mistakes on the way and after 2 months got a definate 2 mutations of CF. Not realizing it was the same pulmonologist from before because my husband took him to the original visit 5 yrs ago we consulted same doc. After meeting him my husband realized he had seen him before,but gave him the benefit of the doubt. He sweat tested him twice at the "CFF" approved lab and he came up borderline-59 and the dr. refused to say he thought he had CF again and would wait for DNA and not treat until. When DNA came back affirmative he said he wold not treat at all because he said he is "asymptomatic" even though he had recurrent pancreatitis and 72% pft. When our son got his ist 2 positive sweat tests at the "non"CF center our 11 y/o daughter was tested, result 79/81. Once again was not recognized because not certified at CF clinic. She came up negative at cf center 36/39. We Then found out her diagnosis of CF through genetics. She is considered asymptomatic except for reflux, low Vit D, and + staff Aureus. Her pancreas is sufficient as our son's is and she has PFTs THAT ARE BEAUTIFUL. Our son is in for a tune-up right now. It is his 1st and we are trying to learn as much as we can. This has been very tough. We all feel that their doctors failed them. They are at CHOP in Philly now and we are very happy so far. They are both on albuterol puffer, previcid, hypertonic saline and vest. Our son is on a Creon and viokase cocktail. He still has had several bouts of pancreatitis since being on the enzymes. I don't know if anyone has gone through this. I just want them to have some faith and confidence in their healthcare professionals and not 2nd guess. I always felt something wasn't right. I guess a mother always knows. Here is the hint that I wish I knew a long time ago. When I used to nurse him he would put his fingers in my mouth and they were very salty. Who knows to mention that to a ped. They never asked me. I think that should be a question on a babies well visit intake or at least if you have a child with reocurring pulmonary problems. I know they all don't have salty skin because our daughter doesn't but it is a huge clue I could have given them a long time ago.
Discouraged but hopeful
Mom of 2 newly dx CF kids 14 and 11.
-------------------------
weknewbest
Discouraged but hopeful
Mom of 2 newly dx CF kids 14 and 11.
-------------------------
weknewbest