Dear Bubblegum,
My 14 year-old son was diagnosed with CF this year after being hospitalized on emergent basis twice this year with pancreatitis. It took several months to get a difinitive diagnosis. He had some borderline issues. He has had some respiratory issues and a chronic cough with some GI probs since birth. He has teetered between 5% to 15% percentile since birth. After many specialists through the years blamed everything on allergies and asthma we found the right docs. Shortly after that his 11 yr-old sister was diagnosed via genetic testing. Shock of the century. I was shocked and ripped to shreds by my son's diagnosis, but we finally had answers and were able to connect dots. But our daughter is "asymptomatic". 5%-10% since birth but they said "well you and your husband are short". She does get mild chronic belly aches and can not finish a meal, but she is hungry all the time. It was not really serious though. She is doing well and yes has a sufficient pancreas. The only treatment she takes is vest with hypertonic 7% once a day and albuterol(puffer) twice a day, prevacid(recently),and Vitamin D. She did have a cold that was aggressively treated and was able to avoid hospitalization, thank god.
Our son on the other hand has had one hell of a year. He started out pancreatic sufficient but due to mulptiple pancreatic attacks this year is now borderline or insufficient, we aren't sure yet. He has been on enzymes anyway so is already covered. His last pancreatic attack was beginning of October then he was hospilized with lung exasperation from rhino virus. Excellent experience even though it was not fun. We all learned a lot.He is out and getting better. Just dealing with joint pain which we can't figure that out yet. The good news for him is his lung function after all these years of misdiagnosis is good- 98% after hospital. Looking back there were numerous occasions that he had a lung exasperations through the years but was not diagnosed yet, but he pulled through untreated (properly at least).
The hardest part of this has been the emotional componant of getting used to this change. He is 14 as your daughter is 13. How is she dealing with that? Have they put her on any meds or treatments? He is on pulmozyme, vit D, prilosec, adek vitamins, creon enzymes, albuterol,vest, hypertonic 7%, and zantac. If she complains of upper abdomen pain that goes straight across her bottom of rib cage and diaphram that does not go away, pay attention. That does not mean she is going insufficient it just could be pancreatic attack. Fat aggravates it and they need to lay off it for a while and if worse go for iv fluids.
Our son has been sharing his diagnosis with most people he knows. At 1st my husband and I weren't sure about how that would go. We left it up to him. Our daughter on the other hand has chose to be a little more private and only shared with a few. It is their disease and I feel it is their choice since they are teens or tweens. I hope she is okay and I understand your concerns. Keep yourself well and hang in there.
Mom of 11 y/o daughter and 14 y/o with CF L997F and 394delTT
