Waiting for diagnosis...

[Robin89]

Good evening all,

I recently wrote on here about my Daughter who is 7 and has been unwell for a couple of years.
She recently had a video capsule endoscopy which showed lesions in her ileum and she had an abdonamol ultrasound that showed some thickening in that area.
I spoke to her consultant today who still isn't certain that she does have IBD.
He then checked her most recent calprotection test results ( the test was arranged via a junior doctor and I then requested the results) and found its 140.
She had a reading of 82 ish last year and that's the only other time it's been raised, that was a year ago and up until 2 weeks ago, it hadn't been re tested.

I really don't understand why she isn't at diagnosis, she has the genetic link, been having rectal bleeding,pain,vomiting with blood for the last 2 years.
she had bottom and top scopes 14 months ago and they were normal but the video capsule last month showed lesions in her ileum. She also has enlarged lymph nodes in that area.

She is on a waiting list now for an m.r.I but needs a general anesthetic because she's quite timid and nervous of tests.

Has anyone else been in a similar situation?

 

[Robin89]

Just to add I don't want her to have IBD and I'd rather she didn't have a life long illness, I just want to get answers and find out what condition she is suffering from. My post sounds like I want that diagnosis, I just want a diagnosis so we know what's wrong.

 

[ronroush7]

I hope you get a definite diagnosis soon.

 

[pdx]

I'm sorry that it's taking so long to get a diagnosis--it's so hard to wait when your child is in pain. Did your daughter's consultant tell you why he or she is unsure about an IBD diagnosis? Do you know when the MRI will happen?

 

[Maya142]

No idea - that certainly sounds like IBD - but I agree, you should ask the doctor what his reasoning is. He may want to wait for the results of MRI or even want to repeat scopes before officially labeling it IBD.

It is definitely very hard to wait and watch your kiddo suffer .

Hang in there :ghug:!

 

[my little penguin]

Hugs
You just want answers
Ds was dx at age 7 after 8 months of wondering what was going on

Now we are back there again for other issues
Although he does have crohns

 

[Mehita]

Is there a reason why they're not doing scopes instead of an MRI? With scopes they would biopsy and then you'd have an answer.

 

[CrohnsKidMom]

So sad to be going through this. Of course you don't want your child to have IBD, but you do want a diagnosis so the problem can be treated! Like Mehita, am of the opinion that it's time for the scopes to be done again. MRE is a good test, but at this point I think I would favour having the scopes redone.

 

[B_Atchison]

Your poor baby! It's hard watching your kids suffer. I couldn't imagine. Of course you don't want her to have it, but you do want answers do you can move toward, get treatment and get better so she can worry about stuff a 7 yo should be worrying about! Have they done a colonoscopy to get biopsies? If not, I'd probably request one. It could help with a definite diagnoses. If they keep giving you the run around and no real answers I'd probably request a second opinion. Prayers!! Keep us updated!

 

[ronroush7]

Your poor baby! It's hard watching your kids suffer. I couldn't imagine. Of course you don't want her to have it, but you do want answers do you can move toward, get treatment and get better so she can worry about stuff a 7 yo should be worrying about! Have they done a colonoscopy to get biopsies? If not, I'd probably request one. It could help with a definite diagnoses. If they keep giving you the run around and no real answers I'd probably request a second opinion. Prayers!! Keep us updated!

I agree.

 

[Catherine]

We also had a ultrasound which showed thickening of the bowel. The ultrasound report recommended that the next step if there was clinical reason to believe IBD was a possibility was to do a MRI.

If the area where they believe thickening is high in the small bowel it maybe higher than a colonscopy can reach.

 

[CarolinAlaska]

I totally understand where you are coming from. I think the MRI (hopefully MRE) could be helpful since the colonoscopy wasn't. How is her growth? Is she losing weight?

 

[Farmwife]

Hi, another mom her to a 7 year old.
My Grace still struggle with proper dx but
for now we live in this world.

And no one here would think you want your kid to have this disease.
it's hard enough to watch them suffer but not to have a name put to it is just cruel.
Hang in there!