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View Full Version : 16 Month old might have CF?


Prairiewind
05-21-2005, 08:47 PM
Hi there. I have a 16 month old daughter and she has had gastrointestinal problems for several months now. It started with diarrhea and the diarrhea got to the point that she was going 6-7 times a day. She is still having loose BM's and if they are solid, they are light in color and sometimes have an oily appearance to them. Her weight gain was ok until she stopped gaining weight around a year of age when the diarrhea began. She has had frequent chest colds and coughs in the middle of the night at times even when she is not sick, although she does not cough during the day. They did stool parasite tests on her and they were negative, and our Pediatric GI thought she might have Celiac disease because I have it, but she was also negtive for that. He now is concerned that she might have CF. She is scheduled for a sweat test and a 72 hour stool collection study this week. Neither my husband's or my families have a history of CF, although we don't know if either of us may be carriers of the gene. My daughter also has a very hearty appetite and despite the fact that she eats so well still no real weight gain. I am hoping for some opinions from folks on whether or not this in fact sounds like CF or if my doc is just being cautious. I would welcome anyones responses!!

Ratatosk
05-21-2005, 10:25 PM
We have no family history either; however, ds is 23 months and we found out he had CF at the age of 6 days. I would also ask the doctors to do a genetic blood test. DS's sweat test came back normal. He has oily -- cheesy smelling, stools if he doesn't get enough enzymes to digest his food. At this point he reall doesn't cough; however, does get a stuffy nose and appears to have sinus problems

Prairiewind
05-22-2005, 10:15 AM
Hi there! Does the gene testing tell you for sure if they have CF? I have licked the poor baby several times now and she doesn't seem to taste salty to me. Here's a few more things about her health. Her stool also floats because she pooped in the tub yesterday and it just floated in the water instead of sinking. She also had very tiny arms and legs and a big tummy, but my husband was naturally like that as a child with odd bowel movements and it turned out he had food allergies. Because I have Celiac disease, I know that light colored bowel movements that float are a sign of malabsorbtion of nutrients, and I felt positive that she had Celiacs until her Celiac panel came back negative. Our daughter also has the sinus issues. Its seems like her nose is always full of nasty stuff, and she also gets frequent ear infections. I know her nose bothers her because he cries and rubs it all the time. Her regular pediatrician said it was just allergies, but in conjunction with her bowel issues I am very concerned. I know that I will know the results of the sweat test this week, but the wait is just killing me, especially because my husband is military and he is gone right now and I am on my own through all of this.

Ratatosk
05-22-2005, 12:08 PM
With genetic testing they determine if the individual has a certain defective gene or if they are a carrier. DH and I didn't know we were carriers as they don't do screening in our state. DS has the classic gene mutation -- homozygous delta f508.

DS has a poochy belly and at first had skinny arms and legs. He has to have digestive enzymes 'cuz he malabsorbs his food. But DH has a cousin who had really foul foamy stools as an infant and turns out he didn't have celiacs and he didn't have CF. My sis also had a pooch belly and skinny arms and legs as a small child -- but doesn't have cf.

Could very well be food allergies, too. Have you asked to see a pediatric gastro specialist?

dannysmom
05-22-2005, 04:19 PM
Prairiewind,

My 11 mo old son has CF. He never tastes salty when we kiss him. We are also military and I know what you mean about facing things when your husband is away. The good things is that even though Tricare is a pain in the butt they have paid for all his medical bills. If your daughter does turn out to have CF or even something else, don't take no for an answer from Tricare. You need to be persistent and even bothersome at times. And find a Dr who will order all the tests that you need done. Change your PCM if you have to. Good luck to you!

Prairiewind
05-22-2005, 05:25 PM
Actually it was her Pediatric Gastro specialist who suggested she might have CF and ordered the testing.
Dannysmom, It seems like everytime my husband leaves something bad happens!! *L* He should be back next weekend so we only have another week to go, even though it would be nice to have him home for the testing.

dannysmom
05-22-2005, 08:51 PM
I agree with you! Things that you could never imagine seem to go wrong when they leave. Try to hang in there. Let us know what happens.

trixie_taxi
08-08-2005, 06:43 PM
hi there! our family didn't have any history of cf, but my little sister was diagnosed at 18 months, there are 4 of us kids and we are all fine, but I have been tested and am a carrier. There was no sign, and the doctors just told my mom she was spoiled and my mom was paranoid, then they finally took her to houston where she was finally diagnosed and put on treatment. she is now trying to get on a list for a lung transplant.

 
 
 




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