Back to the GI today...what all should I ask?

[Momto2girls]

I am at the point where I'm afraid I'm going to cry to the doctor. I don't understand why she has to be sick all the time? I feel like they are just waiting for me to stop calling? And for this to all go away? I wish it would!

A quick recap: scope in April showed inflammation in ileum & left colon. Also, gastrisits in stomach with H. Pylori. Did not diagnose IBD.

She was treated with Sulfasalazine for the inflammation of "unknown origin" and did great! Had to stop taking it about a month ago and has been getting progressively worse ever since.

I am going to ask about ME, as the bladder spasms and issues with allergies sound exactly like her. But, other than that?? I don't know...just feeling discouraged today. I don't want to re-scope. I want them to draw the conclusion based on her symptoms, her initial scope and our family history, that it is likely IBD and treat her accordingly. Ya know?

 

[Farmwife]

I hope you get answers!
((((((((((((((((HUGS))))))))))))))))))))

 

[Sascot]

It must be very frustrating. Hope they do something soon! If I remember rightly I'm sure there was a blood test you could do to check for ME. I have to say I wouldn't want to put my son through another colonoscopy if I could help it. Good luck!

 

[Farmwife]

No Sasot their is no blood test. You have to have a biopsy and use a spec. stain. I thought I read were you could use a genetic marker to see if your prone to this but that's NOT a 100% proof you don't have it. I'll have to read about that again.

 

[Sascot]

Ok, thanks - that's a pity.

 

[crohnsinct]

I am at the point where I'm afraid I'm going to cry to the doctor. I don't understand why she has to be sick all the time? I feel like they are just waiting for me to stop calling? And for this to all go away?

I say go ahead and cry to the doctor! Maybe then they will see the anguish this is causing. And I also say if they want it to go away I would make it go away...right to another doc who might actually listen.

I say this all the time but gosh I give you moms of undiagnosed kids so much credit. My daughter's disease came on fast and hard and we had no trouble getting diagnosed. While it certainly wasn't fun sitting in ICU with my pastor and hubby that only lasted two nights. This ongoing limbo has got to take its toll on even the most patient.

Hugs and prayers for answers.

 

[my little penguin]

Hugs btdt too many times. It took us over a year to figure out what was what .
We have gone for more than one second opinion.

 

[NMMom]

We went almost a year with symptoms, the last 6 months were horrible, before we had a diagnosis. My heart breaks for all the parents that have to watch our kids get so sick. Have they done a fecal calprotectin? If not can you ask for one? What about a prometheous (sp?) IBD test? We received the diagnosis of severe UC from the colonoscopy and FC test but the doctor also followed up with the Prometheous test as well just to confirm we knew the beast we were fighting. In our case it confirmed IBD but she had blood and genetic markers for both Crohn's and UC.

I know not all insurance companies will pay but I think more of them are. Maybe you can ask for that as well? Good luck! My thoughts are with you and your daughter.

 

[Momto2girls]

Thanks so much everyone. It was an awful appointment. I had to come home and as soon as my hubby got here I went straight to bed...I was just drained.

The doctor thinks it is functional gut (basically IBS) -- doesn't think the inflammation they found was anything. Doesn't think the H. Pylori needs to be treated. Doesn't think it is ME (though no, she was not tested for it, he said she was tested for eosinophils and usually eosinophils show up if there are MAST cells present. Also, he said kids with ME are a lot sicker than she is.) He said he could do a blood test for tryptase which would be a good indicator about MAST cells, but he doesn't think that's it.

He still thinks Celiac could possibly be the problem -- and wants to re-do her Celiac bloodwork (which was neg. in April). He said it has been enough time that things could have changed. And he thinks 4 yrs old is right about the time Celiac usually becomes detectable so she was just turning 4 at the time, and maybe now it would show up on the test? He said we could just try eliminating gluten but here is still a chance she could be spontaneously getting better on her own AT THE EXACT SAME TIME we eliminate gluten and therefore even if she gets better we can never prove it was from eliminating gluten. (OK, of course it is scientifically possible, but why are you trying to make me LOSE MY ENTIRE MIND!? For crying out loud, are you seriously going to give me a wall to bang my head into!?)

Finally, he said her labs in June showed low Neutrophils -- he said usually indicating infection in some few months prior (which they SAY could be what caused the inflammation, but they tested for infection in blood and stool culture and nothing was ever found), and he wants to do bloodwork to make sure that number has gone back up. (Not sure what it might mean if it hasn't.)

But ultimately what he said was, he could test for ME and Celiac, but basically so that if those things come back neg. I would actually BELIEVE it is just functional gut. Um, OK, so you want my daughter to be a pin cushion in order to shut me up? No thanks. See ya -- we're outtie.

So, I slept and then talked to hubby, and I think we'll ask her primary care dr. to take the bloodwork and test the Neutrophils since they do need to be re-tested, and then also run Celiac while we're at it (trying to avoid more blood draws). Then after bloodwork we'll try eliminating gluten either way.

Not sure what else to do at this point. :thumbdown:

 

[Catherine]

Sad that the appointment did not go well.

I have a dx of ibs and my daughter has dx of crohn's. Prior to Sarah dx when the doctor were telling me it was ibs. We went on the FODMAP diet, my ibs lot much better, Sarah continue to get worse finally results in dx.

Very big if here, the studies for the FODMAP diet are showing improve in symptoms when it is ibs only. I noticed improve within a week on the diet.

 

[Momto2girls]

Oh very interesting Catherine. I am assuming I can google FODMAP and figure out what it is and what to do?

 

[my little penguin]

We are doing fodmap here for DS since we were told he had Ibd and ibs.
Go figure.
We have FA as well so pm me if you want a few site recipes on that.

 

[Sascot]

Sorry the appointment didn't go very well. It is frustrating when the docs seem dismissive of the things that might be wrong. I hope you manage to find some answers somewhere else. Might be worth trying the gluten free anyway.