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7 year old possible Crohns

Hi all! I'm a mum from the U.K with a Daughter who has had rectal bleeding/tummy pains/bloating/blood in vomit on and off since 18 months old, she is now 7.

Her problems started off at 18 months old when she filled a Nappy with blood and I had to take her to A & E. They examined her and couldn't find any tears on her bottom and put it down to a one off episode.

Fast forward 3 years and I started to notice she wasn't gaining any weight, I kept going to the Doctors.

Then the Rectal bleeding started up again, and she's been bleeding on and off for the last 2 years.

She's had top and bottom scopes that were clear and her Calprotection has only been high once (although not tested since July last year, handed in a new sample yesterday)

She suffers from inflamation in her Knee Joints and goes to Physio for that.

A month ago she had a video capsule endoscopy at Great Ormond Street Hospital, had the results last week and they've found the third section of her small bowel is damaged.

On the report it says she has angiodysplastic lesions of significance and Erythematous Lesions covering Lymphoid Nodules.

She went for a Barium swallow yesterday which was clear but she also had an abdominal Ultrasound that showed inflamation and thickening of the walls in her Small bowel, also enlarged Lymph nodes.

I'm now being told it could possibly be inflammatory bowel disease so she needs to have an MRI.

Has anyone else had the same symptoms?

I'm pleased she is nearly at Diagnosis of her problem but also nervous.

Just to add she has a genetic link to Crohns , as her Grandfather had it.

I've been looking at Dr google to try and find reasons for the lesions other than IBD but not having much luck, she's had symptoms for so long.. I really don't know what else it could be.

:sign0085:
 

Scipio

Well-known member
Location
San Diego
Welcome. It does indeed sound like that might add up to a diagnosis of Crohn's, although only your doctor can say for sure.

If your daughter gets diagnosed with Crohn's then being formally diagnosed is a good news/bad news deal. It's bad news because she has a disease that is currently incurable and that has the potential to make her (and thus your) life miserable. It's good news because you will then know what you are up against and the path will become clearer of what to do about it. The further good news is that we live in a time in which the treatment options are many, and they are much better than they were just a few years ago, and they are getting better all the time.
 

my little penguin

Moderator
Staff member
Welcome
Ds is 12 and was dx at age 7 after years of circles and doctors
Very good parents group
Here
http://www.crohnsforum.com/forumdisplay.php?f=49

Lots of btdt advice from moms/dads who know how hard it is to chose these meds and watch your kiddo be sick

I can say that crohns is evil but the scary meds can give you your kid back and get normal ( ok close to normal ) again
But it takes times and each kiddo is different
When I say time don't think days but months
Ds has had this for 5 years plus and crohns wise has pristine scopes thanks to humira /Mtx


Tagging
Clash
Maya142
Crohnsinct
Jmrogers
Tesscom
Mehita
Pilgrim
Farmwife
 
I'm sorry they are finding damage. But I hope the diagnosis comes quickly so that you can get the inflammation under control.
Please keep in touch here as there are a lot of parents here who have experience. For us, it has been a tremendous amount of support over the last two years.
I hope she is coping ok with all of the appointments and testing. Poor little one.
 
Thank you all for your replies. I will check out the parents section now.
Our next appointment at Great Ormond is June 14th so will know what the plan is then, they've tried to bring the appointment forward but her consultant only works Mon/tues so it's a busy clinic.
 
Oh and bechets can cause lesions in the Gi tract and mimic crohns
Just a thought
yes I was researching online last night and came across behcets disease.
She doesn't get sore or red eyes/headaches/spots so I didn't think it sounded like she had that, will definatly read more about it now tho.
 

my little penguin

Moderator
Staff member
The symptoms of bechets don't have to happen all at once which is why it's hard to dx
( can take up to 10 years for some)
But something to watch for
 
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