Looking for some input

[Shirel]

My daughter is 3 and she will be having her endoscopy and colonoscopy in March. Dr thinks she might have crohn's since some of her symptoms lead to that along with labs. She tested negative for Celiac. She presents with stomach pain, hair loss (low in iron), no appetite (i mean she just won't eat) and is losing weight. Her labs point to a seveer inflammation so dr wants to test for crohn's. Has anyone here had their child dx so young and hasn't had more of the severe symptoms you get with crohn's Im scared and don't know what to expect. Some input will be appreciated. Thanks

 

[my little penguin]

Tagging @Pilgrim
My kiddo is 16 but was d lx at age 7
He had no appetite ,rectal prolapse /constipation /belly pain and repeat vomiting at the time of his scope
Scope looked normal per Gi
But biopsy told a story of acute and chronic inflammation woth granulomas so crohns dx

kids dx with crohns before the age of 8 are considered to have very early onset ibd
Veo ibd
There are a few specialty clinics for these kids in the US
Children’s of Philadelphia is one of them
https://www.chop.edu/centers-progra...MIzfD3m8zm5wIVSz0MCh2DvAhnEAAYASAAEgKuw_D_BwE

 

[Maya142]

My kiddo was diagnosed much older, as a teenager, but I agree that going to a children's hospital with a lot of experience with IBD is a good idea. Even just getting a second opinion from a hospital that has experience with Very Early Onset IBD or VEO IBD. Some, like the Children's Hospital of Philadelphia, have a whole VEO program. Others may not have a whole program but they have pediatric gastroenterologists who specialize in or do research about VEO IBD. I know that at Boston Children's, there are definitely pediatric gastroenterologists who research VEO IBD. Cincinnati Children's also has a great pediatric IBD program and likely has GIs that specialize in VEO IBD.

 

[Pilgrim]

My daughter was diagnosed at age 3 with Crohn's. She tested negative for celiac as well. Also had anemia and other deficiencies. Honestly those are severe symptoms for a young child. My daughter didn't have the kind of diarrhea you read about either, but she was very weak. Eventually blood was present.
It sounds like it would be smart to go ahead with Crohn's testing. At least you could know if you are dealing with it. My heart goes out to you.

 

[Shirel]

My daughter was diagnosed at age 3 with Crohn's. She tested negative for celiac as well. Also had anemia and other deficiencies. Honestly those are severe symptoms for a young child. My daughter didn't have the kind of diarrhea you read about either, but she was very weak. Eventually blood was present.
It sounds like it would be smart to go ahead with Crohn's testing. At least you could know if you are dealing with it. My heart goes out to you.

yes she will have that tested in March. thank you so much

 

[Shirel]

My kiddo was diagnosed much older, as a teenager, but I agree that going to a children's hospital with a lot of experience with IBD is a good idea. Even just getting a second opinion from a hospital that has experience with Very Early Onset IBD or VEO IBD. Some, like the Children's Hospital of Philadelphia, have a whole VEO program. Others may not have a whole program but they have pediatric gastroenterologists who specialize in or do research about VEO IBD. I know that at Boston Children's, there are definitely pediatric gastroenterologists who research VEO IBD. Cincinnati Children's also has a great pediatric IBD program and likely has GIs that specialize in VEO IBD.

Do you know of any hospitals that offer this kind of program in Indianapolis? Maybe the one in Cincinnati might be close to us. not sure

 

[Shirel]

Tagging @Pilgrim
My kiddo is 16 but was d lx at age 7
He had no appetite ,rectal prolapse /constipation /belly pain and repeat vomiting at the time of his scope
Scope looked normal per Gi
But biopsy told a story of acute and chronic inflammation woth granulomas so crohns dx

kids dx with crohns before the age of 8 are considered to have very early onset ibd
Veo ibd
There are a few specialty clinics for these kids in the US
Children’s of Philadelphia is one of them
https://www.chop.edu/centers-progra...MIzfD3m8zm5wIVSz0MCh2DvAhnEAAYASAAEgKuw_D_BwE

thank you so much for responding

 

[polly13]

Hi Shiral
My daughter Lucy was diagnosed with crohns at two so big hugs to you it is a very worrying time. Its good that she's going to be tested. Lucy is 11 now and apart from one flare last year she has done really well and is doing well again.

 

[Delta_hippo]

As an interim measure might be worth going gluten free to see if that helps, my little one went from constant diarrhea, not eating, losing weight, not growing to normal within about 2 days. And it is honestly not tricky once you find the gluten free brands (it's in everything, sausages, ice cream, chocolate, you have to check the labels at first). Anyway the reason I suggest it is the consultant told us some people have intolerance that is under the threshold for the celiac test to flag but still react. If it is that you should see very quick improvement and if not no harm done - well the bread is only really okay for toasting but the pasta and other stuff you can't tell the difference. Maybe worth trying? Having your children suffer makes any other pain seem like a joke.

 

[my little penguin]

Do not make any diet changes including going gluten free until after the upper endoscopy /colonoscopy .
Unless your child’s Gi tells you to
Celiac blood test is not the gold standard
A endoscopy is the gold standard for diagnosing celiac
Second diet changes may muddy the waters on what is truly going on .
Better to know once and for all

good luck with the scopes