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

 

[Farmwife]

Hi and welcome.
My girl is 5 almost 6 and has this disease.
I'm sorry to hear all the suffering she has gone through. Poor girl.
My girls first scope only showed the disease at the microscopic level.
Grace did have times of no symptoms until the disease hit full force.
She also has arthritis , so that doesn't help things.

Please ask as many questions as you want. We've all been where you are and felt the worry.

Hugs

 

[my little penguin]

You really need to wait for the biopsies
Ds had a normal looking scope
But biopsied told a different story.
Also ask about a pill cam and mre to image the small bowel which can have crohns but cabt be seen by a scope .


Good luck hope you get answers soon

 

[my little penguin]

Other things to ask about egids ( EGE and EC)
Bechets
Both can mimic crohns

 

[Milliesmum]

We have an appointment Wednesday back at great ormand street so hopefully get some answers then and I will update this post. Thank you for advice x

 

[kimmidwife]

Welcome MilliesMum,
Glad you found us but sorry you had too. We will be waiting for your update. Keep us posted.

 

[Maya142]

Will be thinking of you, hope the appointment is helpful!

 

[Extremebat2]

I would highly recommend waiting for the biopsy and then taking your daughter to a well known gi doctor. I went through 3 ct scans 1 colonoscopy 1 mri and multiple blood and stool tests. I took all these results to dr ravry here in atlanta. He checked the results from the tests and finally said i had crohns. I was diagnosed two weeks ago. But i went through the stomach pains for two years not taking any medicine and not knowing what i had. Be patient and do your homework when picking the gi doctors for your child.

 

[Milliesmum]

Hi all. Sorry for the delay. Had results on Wednesday. They said she has microscopic colitis in her large bowel and inflammation in her oesophagus and stomach. The colitis is not usual for children and diagnosed usually in females over 55. They will be doing the camera that u swallow to get pics of her insides that they couldn't see in the scopes. Now I've looked this condition up and it clearly states no blood or ulcers are symptoms but she has these symptoms. She has blood and mucus loss; mouth and throat ulcers tiredness stomach pains chronic dioreah up to 11 12 times a day when she is bad headaches sickness and fever. She has also had a slight rash on occasions. Now I don't agree with their diagnosis due to her symptoms she has been prescribed pentasa 500mg daily and lansoprazole. If this doesn't work they are putting her or steroid and some other medication that I can't recall thrm telling me. They couldn't answer my questions as they have not seen a child with this microscopic colitis often and that it is so rare for a child of 6 to get it. What are your thoughts? Mine are that once they do the scopes and camera tests they will diagnose with crohns as these symptoms sound more like it fits with it??

Thanks
Clare

 

[crohnsinct]

Hmm. With blood and mucus I am surprised the colitis is microscopic. I would imagine if there is bleeding they would see more in the colon. Perhaps disease is further up and the pill cam will tell the whole story.

Unfortunately you are learning the hard way that patience is a virtue with GI issues.

I know you said they did a bunch of stool tests but was c diff one of them? Although with t he mouth ulcers I am thinking more likely IBD but just on the off chance the mouth ulcers are independent of the other stuff....

 

[Milliesmum]

Hi thank you for reply. Yes they did the test along with other infections and parasites x

 

[Farmwife]

This is our world. Microscopic colitis for us means early ibd, according to the GI. We had blood also, thinking it was from higher up in the track. Also had involvement in the stomach.

We've worked very hard to keep it microscopic but sadly things progressed.
We'll find out next month when she has her 3rd scope what it looks like.

Any questions just asked. Mlp, her son had the same thing......I think.

 

[my little penguin]

Ds was dx with crohns
Although his damage was on biopsies only
With mild inflammation visualually
He had multiple non-caseating granulomas -found only in crohns
Plus acute and chronic inflammation signs
And other signs consistent with crohns
Additionally he had thickening of his Terminal ileum found on a CT.

Good luck

 

[Maya142]

My daughter's inflammation was also mostly microscopic, but like MLP's son granulomas were found on the biopsies so Crohn's was diagnosed. She had inflammation in her terminal ileum and in her colon and some in her stomach. She had tiny ulcers in her colon but that's really it - everything else was found on the biopsies.

I hope the pillcam provides more answers:ghug:

 

[Milliesmum]

They said the biopsy only showed microscopic colitis nothing else in the large bowel. The pill cam only shoes.pics will it detect something if it's there but not inflamed at the time?

 

[crohnsinct]

Good questions. I am new to all this small bowel imaging but I think because it is just looking it might not pick up microscopic inflammation. Further, I think the issue with pill cam is it only picks up what it sees. In other words the cam has to be pointed at the area at the time it passes. Because it turns it could be pointed away from a particular area. However, I have read that the images picked up by pill cam are superior so it is a very good test.

If the pill cam turns up nothing then maybe an MRE will be a good idea? I think both might be overkill if one turns something up but if everything comes up empty and your child is still suffering it wouldn't be crazy to request further testing.

 

[DustyKat]

Given your daughter’s age will she be able to swallow the pillcam?

A pillcam will not pick up microscopic inflammation because as the name suggests it will only be visible by a microscope. What it can visualise is structural changes in the bowel wall such as growths, tumours and the telltale changes of coeliac disease. It can pick also pick up ulcers, inflammation and bleeding.

Dusty. xxx

 

[CDJ]

The pill cam will be able to pick up crohns in the small bowel [ if it is there ]. Normal scopes can't reach this far. I would also ask for an MRI scan as this can also show if there is evidence of crohns that the scopes can't see.

In reply to Dustykat about swallowing the pill cam, when my son had to do this 2 years ago [ aged 12 ] he had his inserted whilst under anesthetic. I don't think even he could have swallowed it. I would hope that they do the same for your daughter.

 

[DanceMom]

My daughter is 10 and has had 3 pill cams. She swallowed them all without issue. We practiced by swallowing candy corns. Would have used jelly beans but couldn't find any.

 

[Milliesmum]

They are putting her under to use the pill cam x

 

[Pilgrim]

I'm sorry you have to be here, but welcome.

Our daughter had multiple granulomas on biopsy but her visible damage at scope was obvious. So, diagnosis of Crohn's at age 3.

I'm glad she is getting a full investigation with the pill cam. I hope it goes smoothly and that you have answers right away. Answers = options.

Hope she is ok and not nearly as worried and scared as mom must be.

 

[CrohnsKidMom]

Welcome to the forum, but so sorry to hear your gal isn't well. I hope you get some solid answers soon, and get her back on the road to feeling well.