Help please... My child's results and not diagnosed yet

[Milliesmum]

Hi
I am new to this site so please excuse me if I'm doing anything wrong.

I'm pulling my hair out with worry. My 6 year old girl has been very ill for the last 4 months. Chronic dioreah stomach pains, mouth ulcers, blood and mucus from bottom and very very tired. Many hospital visits and sent away saying she is fine, as a parent we knew she wasn't and we kept on pushing. Eventually a peadiatric consultant saw her in November and was concerned as she has also lost a lot of weight. Several blood and stool tests performed. We got her faecal calprotectin result of 1227/g which I've been told is high. She was admitted to great ormand street hospital on Tuesday for colonoscopy and endoscopy however we was told that they could not identify IBD. THey have taken biopsies and we are waiting for those results next week hopefully. She has had stool tests for infections and bacterial and they were clear Blood tests also clear.
Her symptoms are settled at the moment. She usually has a good week then a really bad few weeks whereby she will empty her bowels up to 12 times a day.

Is this IBD.? If it's not what else could it be?

Thank you for reading
Clare

 

[Jennifer]

Hi Milliesmum and welcome to the forum!

I moved your thread to the Parents section and here so you could get more replies. I'm sorry to hear about your little girl and am very surprised by the hospital saying that she's fine as none of that is normal. Did she ever have any tests done while she was in the hospital?

As for the stool tests, I'm assuming they already tested for celiac and c.diff but if not then it would be good to test for those as well.

Hopefully the biopsies will shed some light on what's going on but if nothing at all was found in the scopes then chances are her problem is in the small intestine where a scope won't reach. She'll have to have further testing in that case which could be an MRE, MRI, small bowel follow through, CT scan and possibly a pill cam but I'm not sure what the age limit is on that or if there is one, the parents on the forum will probably know.

My symptoms were similar to her's except I had a lot of blood loss. I was hospitalized until they knew what was wrong with me. They did a lot of tests and spoke to a few different GIs in the country until I was finally sent to a Ped GI for a formal diagnosis but I had already been diagnosed over the phone before they did any scopes. I had a small bowel follow through done, CT scan, barium enema, MRI and many stool tests which also tested for celiac and c.diff. I also had a lot of blood work done and was tested for any food allergies.

IBD mimics many different health problems so it's hard to say if she has IBD or not but the symptoms do fit so far. Hopefully they'll find out what's wrong with her soon so she can get treatment and relief. Keep us posted. :hug:

 

[Milliesmum]

Thank you for your reply.
They have done a celiac test which was negative, unsure if they did a c dif test or not.

:shifty:

Thanks
Clare