Will be having a GI consult....

[momofkkcg]

Well Gracie's Rheumy called me today. He filled me in on the tests he ran 3 weeks ago. He said he didn't really find anything that pointed in any of the other directions he was thinking. He said he called a Ped GI and went through her symptoms and the Ped GI wants to see her. So that is our next step!

My question to all of you is if you have had a similar experience?? Have your kids had any of the joint pain, low grade temps, slowed growth, Scleritis...and were still able to get a diagnosis? She really only has a tummy ache once in a while. Loose bowels rarely. I'm just wondering what they will do if anything. Would they be able to find anything with a colonoscopy if she has no GI symptoms? Just wondering.

Thanks!!

Lisa

 

[izzi'smom]

I'm no help, as my dd has GI symptoms, but just wanted to wish you luck!

 

[momofkkcg]

Thanks Angie!

 

[DustyKat]

Matt had next to no symptoms full stop. He only had intestinal symptoms for a week and they were so mild that if Sarah didn't have CD I wouldn't have even taken him to the doctor let alone asked him to do bloods for inflammatory markers. I honestly thought I was over reacting. As it was they came back elevated but what little symptoms he had, a couple of random vomits and off his food for a few days, were well and truly gone by then. He had no pain, no diarrhoea, no blood and no EIM's.

They pushed on with testing and the colonscopy two weeks later confirmed Crohn's in the Terminal Ileum.

So yeah, it is possible and I have read on here before of people having few symptoms and so being surprised when diagnosed.

Good luck hun, I hope you get solid answers very soon!

Dusty. xxx

 

[momofkkcg]

Thanks Dusty! I haven't made the appt yet...hopefully we don't have to wait forever!!

Lisa

 

[Crohn's 35]

Hi momofkkcg... as well all vary in symptoms we also vary in degrees reactions. I did however knew of a man who was shorter than avg men and caused other problems when he was diagnosed young.

How old is your daughter? but I hope you both get some answers soon. Being a mom with a sick child has to be the worst thing. Hugs!

 

[momofkkcg]

Gracie is 7....I kept putting her weird symptoms off for almost two years. The first year I actually wasn't concerned and was reassured by my Ped she was well...but this past winter and spring she really had a lot of things going on...again her Ped still reassured me when I asked questions. So I kept thinking...ok...if something else comes up I'll ask for a referral...finally after doing that a few times I asked. Which led me to a great Rheumy who IS concerned...and feels we have waited long enough!!

 

[Dexky]

What about blood work Lisa? Any IBD related numbers there? Inflam. markers etc. My son was in what we thought was full remission on 6mp but the bloods were going south. A colo-scope revealed small aphthous ulcers so we switched to Humira.

 

[momofkkcg]

Well...what would the IBD inflam markers be?? Her Rheumy checked her ESR and CRP and those are good right now. Maybe the GI would chek that out and then decide on an approach for her.

 

[DustyKat]

ESR and CRP are the inflammatory markers Dex was referring to.

Maybe have her B12, Folate, Iron Stores and Vit D done? If they are low it would point to malabsorption issues in the ileum, would give them something to think about.
Also the Prometheus IBD serology 7 blood test is an indicator used to determine if you have IBD and whether it is UC or CD. Like any other test you can be negative and still have IBD.

Dusty. xxx

 

[dannysmom]

Good luck! We started off at rheumi - which after a few temporary positives blood tests, ended up showing nothing. Danny does have diarrhea daily now, but at first it was just a few days a week. Danny's IBD 7 test was positive for Crohn's ... but that is not enough to seal a diagnosis. We are waiting for some MR Enterography results and have been referred back to rheumatology for testing since his joints are hurting more again. I've read that auto-immune diseases like Lupus can take up to 10 years for a diagnosis as the antibody markers (ie ANA) may not show up at first.

 

[momofkkcg]

Her appt is November 3rd. I just made it today. I'll keep you updated!!

Thanks everyone!!

 

[Crohn's 35]

Good stuff :banana: we are always here for ya! Good luck.

 

[DustyKat]

Good luck Mum!...:goodluck:

I hope all goes well and you start getting some solid answers.

Thinking of you,
Dusty. xxxxxxxx