I have a 14mo. little boy who is 18 pounds (gained less than a pound in the last 5 months). He is anemic and eats like a horse litterally a horse. He can eat almost adult servings at meals and eat cereal again in 30 minutes. We have resorted to heavy cream instead of milk in cooked food and boost calorie and fat intake over and over. He has between 4-8 BM diapers a day, soft and good sized(not small). He is still breast fed. His pre albumin levels are also showing signs of malnurishment. In the last few months he has been consitantly dehydrated with no outward cause. He got rsv at 11mos. and then pnuemonia since then has not gotten rid of heavy breathing sounds. We had a sweat choloride test done today with the results being 44. They said we would need to repeat the test. This was our second try because the first time he didn't sweat enough. Could his cholride level be low due to malnutrion? My doctor is not being overly helpful with extra information, so I could really use some extra opinions...Are we on the right track with CF?
Thanks, we are just trying to get more information so we can be the best advocate for our son. We had not thought of CF on our own it was a test that was posed to us as, "let's just rule this one out". So we are still deer in the headlights. All of the info I read so far fit the GI symptoms, but the anemia and dehydration I didn't find anything yet on. Are those symptoms possibly related to CF or just a fluke? Any help is greatly apprieciated at this very confusing time of our lives.
HI Kirsten...I am right there with you. One of my twins girls is having some issues. She is 18 months. She is 17 pounds...hasn't gained a pound since April. We have been to two neurologists, an endo, and have an appointment for a GI on the 26th. We did blood testing and are waiting for the results. There is talk of Celiac Disease and CF. Needless to say, I am freaking out!
We ruled out celiac disease with a 2 month gluten free diet and acctually lost wieght and had no change in BMs. I wish you the best on your search for answers as we are desperately trying to find our own.
My son was diagnosed shortly after he was born because he had a bowel obstruction caused by meconium illeus. He had a basic genetic blood test -- only tested the most common mutations and it was positive for CF. His sweat test was a normal 32.
I would push for genetic testing. There are over 1500 genetic mutations for CF.
Thank you for all of the advice to seek a genetic test we are going to have one done this week. I have been so grateful to find this extra info. When I started reading all I could find was plumonary symptoms, which we don't have alot of and though reading this board I have found out so much more and feel like I can be a better advocate for my son during this rough time. Thanks so much again.