Just took my 8 yr old DD to the DR.

[Nataliekim]

Poor girl, constipated again. constant stomach pain. When she was in the hospital in January, for constipation and stomach pain, had I been thinking and remembered about my first CT scan, almost 16 yrs ago (my recent CT was three weeks ago) ... I could have had them check Becci for Crohn's or celiac or whatever else. They had her all cleaned out, with the NG tub and golitly. However, I didn't think about it. And we didn't do it.
Her stomach issues have persisted, just like mine. Although, she hasn't had any blood. I took her back into her Dr. today, for pain and constipation. I told her Dr. everything I am going through, I told him I concerned about the genetic component. I asked if there was anyway we could test her...
sure enough, there is a blood test for Crohns?! Ok, she was less than thrilled, she is 8 yrs old. However, I am WAY happy!! Results maybe by next week for Crohns and Celiac.
She said to me yesterday while I was holding her, when she was cramping and miserable, "Mommy, why can't my life just be normal?" No kid should ever have to feel that way.
I feel so bad for her.
Does anyone have advice or thoughts on questions I should ask, test to request?
Thanks all,
Nat

 

[DustyKat]

Hey Nat,

So sorry to hear about your daughter, poor little love.

I sure hope it turns out to be nothing hun. As you would know, tests don't always tell us what we want to know so remain vigilant if they return a negative result. I would suggest starting a diary so you can capture exactly what is going on.

My children never had diarrhoea or bleeding and their crohns is located in the terminal ileum, is that where yours is?

Blood tests may be helpful in picking up anomalies and from that further tests may be ordered. The most appropriate test, if the crohns were to be located in an accessible area, would be a colonoscopy/gastroscopy but of course that is very invasive for an 8 year old and generally they would start with a scan of some description. My son was effectively diagnosed with an ultrasound. The GP could feel a small mass in his RLQ and due to my daughter also having crohns located in that area they specifically targeted it and sure enough they were able visualise the narrowing and thickening located there. The colonoscopy followed to confirm it.

I hope things settle for your baby Nat. Good luck hun and keep us posted.

Much love, :hug:
Dusty. xxxxxxxx

 

[Dexky]

I hope it's nothing Natalie, but I also hope she doesn't get jacked around with what-ifs and maybes! Obviously something is wrong! Let's just hope they help her! Whether it be short term or long. Good luck!

 

[Nataliekim]

I'm still waiting to get my colonoscopy done. The two CT's I've had done...well the dr's didn't tell me were it was. So for now I just await.... As for Becci, The Dr. called and said her blood test for crohns was negative. Of course I am happy. But, again tonight she complained about her tummy. I thought, gosh, I wonder if that was REALLY the best test. I'm also thinking about taking her to an allergy dr.
I really like the idea of a diary, Dusty. Are you just tracking food/symptoms?
I feel that this is going to be something that is going to take awhile to figure out. I'm certain it has to be more than just constipation. Don't get me wrong, I would love for it to be JUST constipation. However, I really feel like there is something there causing it.
Nat

 

[DustyKat]

Hey Nat,

I hope you get your own answers soon hun...:hug:

If you click on the underlined word diary in my post it will take you to the wiki and the suggestions that have been listed to include in a diary. I would track everything that has been suggested.

Unfortunately so many here have negative tests so I do think it is just as important if not more important to look at what is in front of you and not depend solely on test results. I have two very different children when it comes to tests. Sarah's tests never reflected what was going with her, she always presented as very unwell but the tests never picked up on just how ill she was, Matt on the hand is the opposite. He always presents quite well but the tests tell a much grimmer picture, go figure! :lol:

Good luck and keep us posted!

Much love, :Karl:
Dusty. xxxxxxxx

 

[Nataliekim]

Ok, wow, that's a lot more than just food and poop, LOL!! But much more helpful than what I had in mind ;o) I feel really overwhelmed trying to figure all this out with newly for myself and now adding her on top of it.
What do I do if all these tests come back negative? Keep up with the diary, then show the Dr, and ask for more tests?
Me living with the pain for years and years w/o treatment is one thing, but I can't expect her to do the same. I've read about a lab called Prometheus? Should I ask for her blood work to be sent there? Does any one have experience with that lab?
Thanks All,
Nat

 

[DustyKat]

I would keep up with the diary until you either have answers or the symptoms persist. It is so easy to forget things when you are dealing with it day in and day out.

Continue to ask for tests and push for answers. You know your daughter better than anyone so trust your gut instinct and run with that. Any doctor worth their salt shouldn't question you particularly in view of the fact that you have IBD yourself.

I don't have any familiarity with the lab but other parents from the US probably would.

:hang: Mum! You are doing just fine...:hug:

Dusty. xxxxxxx

 

[Mayflower537]

I'm not a parent of a kid with IBD, but my GI ran the Prometheus IBD Serology 7 and the Prometheus test for Celiac on me. Is that what they ran on your daughter? Typically it takes 2 weeks for Prometheus labs to send the results - the lab is out in San Francisco, I think. Also, it's very expensive, so you would probably know if they had run this test on your daughter? I had a high deductible plan, and so I had to pay out of pocket.
I'm not sure about how accurate the Celiac test is, but I know from reading journal articles about the IBD serology that there seems to be a lot of debate among GIs about how useful and/or accurate it is. Mine came back positive for Crohn's, but then no other evidence showed up in my scopes. False positive? Maybe. He also said I may develop IBD down the line here as another possibility. So while it's not invasive like scopes, it's also not overly reliable. That said, if it comes back positive for either disease, no doubt it will cause them to look at her insides in other ways b/c I don't think anyone will positively diagnose off of that test alone.
Best wishes to you and your daughter, and I hope she is feeling better soon.