Failure to Thrive and "Functional Constipation"

[jsilvius1986]

Hello ladies! I was recommended to this forum by a close friend of mine to get opinions regarding my son's health.

Joey, born Oct. 13, 2008 is my second son. He was born weighing 7 lbs and 19 inches long. Now at 20 months, he is 21lbs (<3%) and 32 inches(18%). He was gaining weight normally (around the 25% percentile) up until 9-12 months when he began eating solid food (not pureed baby baby food). Around this point he also began having severe trouble with bowel movements. Pushing against the wall and screaming (dr. says its "withholding" but I think he was struggling). Since about this March, he has been on miralex and benefiber daily and he no longer has those issues. However, if he misses a dose, he begins struggling again. He also had a incident in May involving metabolic acidosis- although we have no idea why- he was admitted to the hospital for 3 days and he got better.

We have been to a GI and metabolic specialist and my poor son has been tested for just about everything- and it all came back negative.

Crohn's disease exists on my husbands side and Celiacs exists on my side of the family. He tested negative to both on blood tests.

I am out of thoughts and the drs seem to be as well. Any ideas?

If he was just small, I wouldn't be too concerned but since he has issues with pooping, I am very concerned.

Any information would be greatly apprecaited and if you guys need any more info just ask! I have no idea if I left anything out that would be helpful to making a potential diagnosis.

Thanks mommies!

[sbgrace]

What metabolic labs were run? Can you figure that out?

Who did you see? Is his muscle tone normal? Energy levels?

[jsilvius1986]

oh gosh...I have no idea...he's had so many labs done in general...I'm gonna see if I can get a copy of the labs on the 14th when he has he GI appt...I know most recently (Thurs) they did some amino acid labs and a lactic acid blood test (i think that is what it was)


So far we've seen his pediatrician, a gastroenterologist and a metabolic specialist. And no one seems to have any answers.

As far as muscle tone and activity, he is completely normal. He has excellent energy too.

[deditus]

My dd had functional constipation and was ftt. She is intolerant of gluten, dairy, soy, and eggs and can't eat much starchy stuff at all so we are basically grain free and tuber-light. To get her to a good point, we had to figure out her food intolerances and remove them using elimination diets (she reacts to trace soy from vit e derived from soy or "natural flavors" with hidden soy even) and replace nutrients she was deficient in. We use digestive enzymes; 100 mg magnesium glycinate, twice a day; high bifidus probiotics; zinc - zinc is very important for sense of taste and smell and stomach acid production, often used to treat ftt; and a good b-complex to help with detox. She's still not all the way there yet (still has stinky poop, sometimes slimy, so still working on dysbiosis), but she is growing, and caught back up to where she was on the growth charts, poops everyday on her own, sleeps well at night, eats well, and will play with other kids! She just turned 4 and this has been quite the long process and journey. I knew something was wrong when she was a baby but had multiple doctors tell me she was fine, put her on Miralax, whatever, I was not going to do that. That stuff is poison. http://health.groups.yahoo.com/group/miralax/
I knew it was food, I did a few elimination diets with eggs and dairy but I didn't know what else it could be. FINALLY I started reading about celiac disease and gluten intolerance and that freaked me out enough to cut gluten and that was when we began to make real progress. Once the gluten was out, she started doing well enough that we could tell what other foods were problems. However, it did take me 1 1/2 years to figure them all out for sure. With celiac and crohn's in the family I would maintain a gluten free lifestyle.
I would guess that the acidosis was caused by all the resorbed toxins from the built up poop and nutrient deficiencies from malabsorption.
My dd also had cradle cap, rashes on her torso, keratosis pilaris, very bad photophobia, allergic shiners, always a scratch on her nose, excess earwax, slow growing/peeling nails, all her top teeth came in with enamel defects, some of which decayed and had to be filled, never slept more than 45 minutes, wanted to comfort nurse constantly, was super shy, clingy, and anxious. She was tested for celiac disease, thyroid, stool tests, blah, blah and all were negative. Our pediatrician that I found when we moved, who was totally supportive of my detective work with intolerances, research into supplements, etc, said that my dd probably has an enzyme defect that hasn't been discovered yet or can only be tested for via genetics so $$$$. Dunno if any of this helps, but it's our story. Lots of help in the Allergy subforum under Health & Healing here if you want to follow the elimination diet route.

[jsilvius1986]

when he isn't on the miralax/benefiber his poop smells awful- foul almost.

He also has begun to develop excema, which my other son also has, and he does have the peely/slow growing nails (I guess due to a vitamin deficiency?), still has some spots of cradle cap...My oldest son had trouble with his front teeth and rotting and all but so far, joey seems ok

I was also told not to change his diet because it could alter test results...

It's just so frustrating to not have answers!

[CassnBeth]

I've got a one year old who is apparently your son's digestive twin. We are starting our diagnosis process with a GI appointment coming up next Friday so I am stalking this thread with interest. Sorry I don't have anything useful to add!

[jsilvius1986]

Originally Posted by CassnBeth

I've got a one year old who is apparently your son's digestive twin. We are starting our diagnosis process with a GI appointment coming up next Friday so I am stalking this thread with interest. Sorry I don't have anything useful to add!

well, if you come up with anything, let me know! and if I figure anything out on my end- I will let you know!

[deditus]

Originally Posted by jsilvius1986

when he isn't on the miralax/benefiber his poop smells awful- foul almost.

He also has begun to develop excema, which my other son also has, and he does have the peely/slow growing nails (I guess due to a vitamin deficiency?), still has some spots of cradle cap...My oldest son had trouble with his front teeth and rotting and all but so far, joey seems ok

I was also told not to change his diet because it could alter test results...

It's just so frustrating to not have answers!

Yes, not eating gluten will alter celiac panel tests. But if the blood has already been drawn then I don't see any reason not to eliminate unless you were planning on having a biopsy done. There are alternative tests for gluten intolerance and celiac disease that can be done without eating gluten -

https://www.enterolab.com/

Unfortunately, we found no help from the medical establishment and had to take our dd's health into our own hands. Since they couldn't find any "wrong" with her we had to find our own path to health.

[jsilvius1986]

I was considering having a biopsy done to double check- would a biopsy be able to see other potential diseases as well or just celiacs?

The enterolab looks awesome, but I don't have that kind of money unfortunately

Depending on what the rest of his recent labs show and what the GI dr says on the 14th, I may just start eliminating things and see what happens.

[paquerette]

Any chance you're near eastern PA? I have a good doc I can recommend if so. Otherwise, perhaps someone in your area in "Finding Your Tribe" will know of someone?

[jsilvius1986]

Originally Posted by paquerette

Any chance you're near eastern PA? I have a good doc I can recommend if so. Otherwise, perhaps someone in your area in "Finding Your Tribe" will know of someone?

actually, I am LOL....I live right outside Philadelphia

[mom of B]

Kefir or yogurt helped my sons eczema, and seems to help my neice's constipation because of the probiotics.

[AndVeeGeeMakes3]

I'm right there with you!

[Ada_S]

I have another kid with FTT/constipation/nutrient deficiency issues. She was tested for a number of things, all negative. I eventually worked out it was an unusual coeliacs presentation and removed gluten from her diet. It wasn't the only thing we needed to do- but her constipation resolved instantly.

Blood tests for coeliacs are notoriously inaccurate for the under-two crowd.

In regards to the biopsy, they can also do an endoscopy at the same time (go and have a look). There may be more than one factor going on. In our daughter's case, we're just suspecting reflux now. She's also an '08 LO. She'll probably be biopsied to confirm at the end of the year, but in her case, I had to remove gluten against the advice of the docs to see any results and get any progress.

HTH.

Edit: FWIW, my daughter also followed a normal growth pattern until about 9 months old, after the introduction of gluten directly into her diet. It took almost 9 months after removing gluten (and the introduction of a supplemental formula and high-fat diet) for her growth to pick up again.