Undiagnosed 8 yr old girl

[anjalika]

hello,

Ill try not to write a journal here ha.
All the symptoms started back in november my daughter got strep throat after she got over that the tummy aches started, I thought she is a kid they get tummy aches. Then she got D and had a couple accidents at school and couldnt make it to the bathroom, this was a red flag. Tummy aches everyday and then D so bad she couldnt make to bathroom. My mom and mother-in law both have crohns disease so I saw red flags..I took her to her general Dr and I know he thought ah she is a kid and prescribed her anti acid pills but I asked for some labs and fecal test to be sure. The very next morning dr called concerned her Sed Rate and c-reactive were both really high, next day we were in to see ped gastro and next day colonoscopy, he said there were concerns she has thickening and red dots and some mucas, but nothing he could diagnose her with crohns. She did the premethious test neg for crohns but tested positive for the genitic markers. Her fecal calprotectin came back normal range.
So as of now she is taking VSL#3 and Levsin. Dr says he doesnt have enough evidence to diagnose crohns but feels she has it and we just have to wait for her body to declare it. And is willing to do a trial of mesalamine therapy.
Also forgot to mention she has joint pain in her ankles and knees and sometimes her hips, has sever nausau and dizzy spells..
Ahh sorry for the long story, dr has ordered labs and fecal cal testing for when she is in a flair so we can get a diagnosis sounds like he just needs a high fecal test to diagnose her, she has had bloody D over the weekend she flushes it before i can get samples Ahhh Any advice does this sound about right? Do I need a second opinion? Anyone have experience with the med he is gonna try mesalamine? Thanks! Anja

 

[anjalika]

...Forgot to mention her biopsies came back good with colonoscopy.

 

[DanceMom]

This sounds sadly familiar (but we do not have a Crohn's diagnosis either). The diarrhea, accidents, bloody stools, visually abnormal scopes but clear biopsies, being told to wait until things get worse......

My best advice is not to wait. If your current GI isn't persistent then find one who is. Perhaps she doesn't have IBD but she has something. We started medications without a clear diagnosis and that only prolonged things, muddied the waters. In fact we're still seeking another opinion at the recommendation of our GI. The path isn't easy but it's necessary.

 

[my little penguin]

Second the second opinion
At a large university kiddie hospital with an Ibd clinic
We started pentasa ( version of 5-ASA ) after DS first colonscopy since he had a atypical crohns presentation. We also went to a second opinion place cchmc at that time .
They confirmed crohns as well and he was immediately placed on 6-mp/ formuka only diet .
He was given the offical dx of crohn then
It helped us and our GI get and extra set of eyes

Has she had imaging done ( MRe or pill cam) ?
That might help as well

Other things mimic crohns ( bechets is one of those things )

Good luck

 

[anjalika]

Thank you for the replies!

Thats why I came here for advice I knew moms of kids with IBD would be experts!! I know with my mom it took years to diagnose crohns but they didnt have the tests back then that they do now. My daughters Dr is a very good GI, he moves quickly with getting her tests done and we have done everything I think except the pill cam. He says we are dealing with IBD and not any allergies or Celiac etc.
I just dont understand why she cant be diagnosed with what we have, he said we just need to wait for her body to declare it? Meanwhile damage is going on without treatment! He is at Mary Bridge Childrens Hospital, Im thinking of second opinion at The University of Washington.
I am lucky though that her school put in place a 504 plan, there are many days she is late or doesnt make it at all, she wakes up through the night and has rough mornings. Or feels fluish for a week or so at a time. ~~ Anja

 

[DanceMom]

So many things mimic Crohn's and many people are misdiagnosed. My daughter was diagnosed with Crohn's only to have that withdrawn a few months later. Perhaps a Rheumatologist or Immunologist would be a good option for a second opinion.

 

[Catherine]

I know it hard but a mis-dx of Crohn's disease would be worse. The treatment for Crohn's disease are very harsh on the body.

There are also diseases which look like Crohn but treatment with Crohn drugs can result In very bad outcome.

 

[niki27]

Hi there I'm sorry to hear about your daughter. But this sounds very familiar sadly. I was diagnosed around her age and sadly it took a lot more then a few weeks until they figured out what was wrong with me. I am now after 10 years off all medication and doing only a diet. I have been med free for 3 years now and know that there is a solution to this. I would love to talk to you more give advice and just be there for support I know how important that is!


hope to hear from you soon best regards! Niki <3

 

[anjalika]

hello,

thanks for the advice will get second opinion for sure, nothing wrong with another set of eyes for sure. We have been doing a strict paleo or clean eating and it does help some but there are days like today when any food or liquid is a no go. I just feel helpless..~~ anja

 

[crohnsinct]

I think your GI does sound very good and unfortunately scopes and biopsies are the gold standard for a dx of Crohns. A normal fecal calprotectin will also make a positive diagnosis hard. If he isn't seeing it, I can understand why he is hesitant to make a diagnosis because as others have said a mis diagnosis could be worse. However, she could very well have Crohns in areas where the scopes can't reach. I second the further imaging suggestion via MRE or Pill cam and if those come out clean then looking into other options.

...and yes, a second opinion couldn't hurt.

Good Luck!

 

[kimmidwife]

I second asking for an MRE or pillcam. Like the others said the Crohn's may be in a higher up area. I would also ask to see an immunologist
Some immune disorders can have a component which resembles Crohn's disease.

 

[lookame]

Did you get a pathology report of the biopsies taken during her scopes? We're in undiagnosed land as well I found it helpful to have the test results so I know exactly what was found. Her findings could be non specific but have early forms of ibd starting to show.

I hope you get answers soon. This undiagnosed thing is for the birds!