Just looking for some answers for 21 month old

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amycobine

New member
We went to the doctor today, and my son (Hadley) is so small he isnt even on the weight % chart. He weighs 20.5lbs and his two yr old birthday is around the corner. And he has only gained 1lb since his 12month check up. (He is in the 25th % for height)

The doctor is ordering the CF tests next week. What else could this be? Are there other systems we can look for.

Our son eats really well, he eats good food and its often. And he was born near his due date without any problems. And except for his weight seems heathy.

I would just like a few more options than CF, the doctor didnt seem to offer any other explanition for my sons size.

Thanks
 
J

julie

New member
The only thing we do know well here is CF, so my question to you would be.. is the weight gain the only issue or have you noticed (and think hard) any extensive coughs, colds that don't seem to go away, does he always seem goncested, does he have loose foul smelling stools? some people with CF will have just lung problems, some will have just digestive, some will have just infertility problems, some will have just two of the problems listed, some will have three. There really is no difinitive answer without a sweat test or blood test.

Unfortunately I can't offer any other ideas of "what it could be", although I wish I could. Let us know if you have any additional questions.
 
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anonymous

New member
My son does have a cough. The cough isnt loud or related to much else. I thought it might even be asthma related because my other son and I have asthma. He also has a runny nose, but he doesnr have all his teeth in yet and I thought that might be from teething.

He poops often (3-5 times a day). And not to be rude, but it smells like cat crap (really stinky). And it kind of looks like kitten crap (not solid).
 
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Emily65Roses

New member
Could be CF. Only way to know is to have him tested. Take my advice when I say it's VERY IMPORTANT to have him tested at an accredited CF center. Doctors can be as smart as they like, but since CF is so specialized, only CF doctors really know what's going on. I saw my "regular" physician yesterday for a college physical, and she even said to me that as a CFer, I should know more about it than her (yes more than her, and she's a doctor!). If he's positive for CF, I have one more suggestion. Your other son who has "asthma" should be tested too, in that case, because it could very possible that he has CF as well.

CF centers can be found here:
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
Any other questions, come back and ask.
 
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wuffles

New member
It sounds like your little boy has malapsorption issues (eating a lot but not gaining weight, and the poop you're describing). I think the number one cause of this is cystic fibrosis BUT more simple food intolerances can also cause similar symptoms (lactose, glucose, etc).
 
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anonymous

New member
Celiac Disease is also similiar to CF as far as digestion is concerned. Celiac is "a dietary defeciency disease occuring in children" according to my medical dictionary.
If your child does happen to have CF or even if he doesn't, enzymes should help in digestion and weight gain. I would encourage you to ask your doctor about using enzymes, they would make a world of difference for your child.
Please keep up informed on how the test comes out & we pray for a negative result but if it happens to be positive we will be glad to help however we can.
 
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anonymous

New member
Hi, I am a mother of 3 and 2 have cf. They were both diganosed in 2002. My son first which is now the middle child and my oldest the next day after him. He was not gaining weight. He weighed 14lbs at 1 year old. And boy did he eat. He was having around 8 poopy diapers a day. My daughter was around 30 lbs and was getting ready to turn 5. She ate alot and didn't gain weight. They both had fowl smelling stools and they told me at first she had asthma. I now have another child and she will be 2 next month does not have cf and she weighs 20lbs and 4 oz with her clothes this past Saturday at the Drs. I would get a sweat test done at a cf center. My little girl now Will be 9 in Feb and you ready she weighs 70lbs. Enzymes do wonders. My son has a g-tube to help with his weight. He gets hooked up at night to help keep his weight up he will be 5 Jan 15 and weighs 35. He does not eat as well as my little girl. Keep me informed.
The sweat test is not painful so my little said. Good luck
Both of my children go to childrens hospital in St.Louis, Missouri
Jeanine
 
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julie

New member
Amy, if you need help finding a good CF center in your area, feel free to share where you live as there are many parents on here who can assist you with that. I would agree with everyone else to do the testing, both a sweat test and if that is borderline a blood test as well. It's better to find out it's negative, than to keep having problems and in a few years find out it is CF. That's a lot of treatments and prophylactic stuff down the drain.

CF is a really tricky disease because it has so many different possible problems associated with it. And it's not like people with certain mutations (there are over 1000 known CF mutations) have certain problems and don't have others. Twins with CF have different levels of severity and complications. I know twins where one has digestive problems only and the other has lung and digestive problems and is on a feeding tube, in the hospital a lot, on chronic medications. The first twin only takes enzymes and has NEVER been in the hospital. And they have (obviously) the exact same mutations. It's a very hard disease to "tackle" and know for sure.

Let us know if you have more questions, this can be a difficult and trying time while you are trying to figure out what is wrong with your baby.

Take care,
 
H

HD

New member
I agree with everyone. Although it could be celiac, lactulose intolerance, or something else, ruling CF in or our early is a must. It is a very easy and painless test. The symptoms before diagnosis are so variable don't wait for something "clasic". It took 3 months for my son to be diagnosed and I'm a Family Nurse Practitioner. Because his symptoms were not clasic it just did not occur to me or my doc for quite a while. Actually it was a cover all bases test from the peds GI doc and even he was surprised when it came back positve. Find a good CF center and get the sweat test. It is so good to know one way or the other. Even though I was devastated by the diagnosis, it was a relief to fianlly know what was going on.
 
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