Help W/ 5.5 Year Old Daughter

[Hadleygirl02]

MY daughter, Hadley, is almost 5 1/2. She has struggled with constipation issues for pretty much her entire life.

She did not pass her first stool as an infant within 36 hours and we had to give her an enema...glycin or gleecin or something? I don't remember.

She was an extremely late potty-trainer. She was wearing underwear finally at age 3 and could use the toilet to pee, etc. BUT she continued to poop in her underwear for another year and a half. Even after turning 4, she would still have occasional accidents--major poops in her underwear. Encopresis is what her ped. called it, and finally at about 4.5 years old we started her on Miralax.

GODSEND! Miralax keeps her pooping regularly, and her poops are soft. (although if we miss even 1 dose, she gets constipated again) Before, she used to sit on the potty and cry, and I would have to count to 3 with her, help her take deep breaths, etc--I felt like a labor coach! biggrin.gif

BUT in the last year...she has still continued to have *issues.*

Symptoms:

--FOUL smelling poops

--her poops are floaty-and difficult to flush

--sometimes they have a filmy, slimy look to them

--gas

--distended belly at times

--rash on her butt that she has had off and on for about a year and a half--sometimes itchy, sometimes not. Her ped. has put her on antibiotics which didn't work...then we tried two different antibiotic creams...then a yeast-cream...all to no avail. It comes and goes--it's always somewhat present, but sometimes looks way worse than others.

--explosive temper tantrums every few weeks

--this summer she has complained off and on of hip/leg pain, though not for awhile

--recurrent abdominal pain, she now complains at least once a day. She particularly complains of pain AFTER pooping.

--descreased appetitite the last couple weeks

After the last 6 weeks of persistent, but subtle, abdominal pain, her ped. finally said it was time to see a pediatric gastro.

The gastro was excellent, very thorough. I feel like an IDIOT! I had no idea the rash on her butt could be connected to celiac disease. But when the dr. saw it, she called in a 2nd dr to take a look. They took a swab, and said it *looks* like DH...but they were surprised that it doesn't itch something awful. It really doesn't...mostly, at night, Hadley will itch, but hardly ever during the day, it never seems to bother her much at all. She wears pull-ups still at night, and I always just assumed it was some sort of irritation from a wet pull-up.

Anyway, they did bloodwork and did the special test for celiac. I got her preliminary blood test results back (thyroid, CBC,C-diff test) and that was all normal.

The celiac test had to be sent out and can take up to a week to get back...so I am expecting results Mon or Tues.

Do any of you have any thoughts? Is it normal for celiac disease symptoms to worsen over time....the last 6-8 weeks, hers certainly have.

Part of me is hoping it is celiac disease...just because I would like to have an ANSWER as to what is going on with her...but the other part of me does not want her to have to struggle with okay foods to eat for the rest of her life.

[MLynn]

Sounds like Celiac to me....you might want to get her tested for Lupus as well.

[Ridgewalker]

I have to say, it sounds like Celiac to me, too. The constipation and poopy accidents sound A LOT like my son. He's 6 1/2 now, and was still having poopy accidents on a regular basis until I put him on a gluten-free diet 3 months ago. Now he ONLY has accidents when he's glutened.

We finally figured out that the poop was just coming on too fast, he had no chance of getting to a bathroom. Kids need a while to think about taking themselves to a bathroom before they actually do it, I've figured out. Which makes sense-- a child is fine... fine... fine... suddenly they have to go pee RIGHT NOW!

Before he went on a gluten-free diet, his poor tummy only had two states of being-- constipation for days, or poopy accidents 1-5 times a day.

He also had the hip/knee/leg pain.

From my reading and experience, it is absolutely normal for Celiac to worsen over time, as far as symptoms go at least. My son's symptoms were definitely worsening (he had numerous others.) Also my mother has Celiac. She simply had chronic diarhea (that she just "got used to") for about 15 years before it suddenly became extremely acute. (This was before diagnosis.) I have read that many scientists believe there are environmental triggers involved, such as: trauma/injury, stress, change in situation like a new house or job, illness, or a host of other things.

Your daughter is at a milestone age, which often is accompanied by a growth spurt-- that could certainly be something that might trigger an increase in symptoms.

As for hoping it's Celiac, but worried too.... Try not to stress too much. Switching to a gluten-free diet is pretty hard at first, but it gets easier every day. Kids are more adaptable to a new food lifestyle than adults are, that's for sure. If she needs a gluten-free diet, you'll start her on it now, and it won't even BE a daily struggle later. It will be second nature. Keep coming to this message board, it's the best place to talk to people who are in your situation!

-Sarah

[crittermom]

Katharine just turned 5 in August and she adapted really well to the diet. Many of the pastas you can't even tell the difference. The biggest challenge for Katharine was the bread. We tried a bunch of different ones including homemade before she settled on the Kinnickinnick (I can never remember how to spell that!) brand that she eats now. (She seems to like all of their products better then other brand names. If they don't sell it around you, you can buy it online.) She pretty much gave up bread for the first 2 months on her own.

Occasionally we will go through sadness in the market about the Loft House iced Sugar cookies, she used to LOVE those, but she gets over it basically as soon as we pass that shelf. Of course the stupid market has them on rolling carts all over the store and they move them to different places so you can never tell where they are to avoid them. Anyway I digress.... we just avoid the bakery area and now she really looks forward to the gluten free aisle.

Katharine, like your daughter had constipation and extremely LARGE bowel movements. Hers also turned a really strange white/gray color. I had to sit on the bathroom floor and hug her while she went. Now she runs in and goes without even telling me, although she knows if the poop is a funny color she has to come get me so I can see.

My main point is that they do adapt much easier as Sarah said. I think the biggest thing with Katharine is that she felt so much better (until I gluttened her again with Mrs Butterworth's..grrrrrr Pinnacle foods...grrrrrr ) that she doesn't want to eat gluten. My mom gave my son some crackers in a bowl and Katharine literally jumped back away from the table, she takes this very seriously.

Try not to get to overwhelmed. If the tests come back positive, feel good that you know what is going on now and you can fix it. Make your shopping list and go get only those things. On my first trip I went to get only gluten free products. It helped me not get confused. Now it is second nature. We have our regulars we buy and are always looking for new things. We have a special health food store we go to for a few of the things and all the employees know Katharine and show her the new products they've gotten in that week. She loves it, she has dubbed it Katharine's store!

It will get easier because you won't be so worried about why your daughter is sick, you will know why and feel more in control because you can take tangible action against it. Hang in there, trust the people here to give you support and help and let us know how the test comes back. Good luck, I will keep you in my thoughts.

[Nic]

The constipation cycle along with the explosive poops sounds like my son Jacob as well. He was diagnosed at 4 and is now going on 7 in November. He has adjusted well to the diet. As difficult as it seems in the beginning, I promise it will feel like second nature in a very short time. And the best part is to see the results. My son used to shake, scream, cry, and sweat just trying to poop. Now he goes with no trouble at all. And in the first year and a half, he gained 15 pounds and grew 6.5 inches. That is definitely progress. Good luck with the results, let us know.

Nicole