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Crohn's Disease
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Posted 10/23/2009 2:10 AM (GMT 0)
My daughter is 16 and has Rett syndrome, she is non verbal and only can use her eyes for communication, which she doesn't do all that well, it's more of a guessing game.

The reason I came here is because she had a pill camera show some apthous ulcers, erosion, fold thickening and edema on the bottom end of her small intestine (distal ileum I believe is the technical term). She was not diagnosed with crohn's but her GI doctor treated her with 11 weeks of entecort which seemed to work...for a while. She's been off the entecort since the end of Aug. and just recently has been having the same symptoms as before the entecort. He put her back on 2 months of it now. I'm wondering if any of you had apthous ulcers before being diagnosed with crohn's. It's sounding likely that we could have seen these spots before crohn's has actually manifested. I'm also wondering what kind of pain she is feeling. It's so hard not knowing just how bad her pain is. I've been giving her 500 mg of tylenol (she is only 72 pounds) but it doesn't seem to be touching the pain.

Thanks for any info anyone can share.

Tammy

Posted 10/23/2009 2:23 AM (GMT 0)
Wow this has got to be so rough. That is definately not a good result. It might be that she might need to be on constant meds for this. Another thing I would be thinking is how about heartburn? Her intestinal motility?
Pain is a hard thing to figure out.
Posted 10/23/2009 3:14 AM (GMT 0)
It has been really rough, the not knowing is the most frustrating thing. She is on prilosec for reflux, she has had reflux problems off and on for many years but always had good luck with meds keeping  it under control. She had 2 upper endoscopies in the last year and they show no reflux problems, thanks to the meds. She also holds her breath alot, which is common in Rett syndrome, but then she swallows air and that leads to bloating and excess gas and air which causes more pain. We have found out though through all of this, that her breath holding and air swallowing is a way she deals with pain. Which is so sad because it leads to more pain.

Thanks,

Tammy

Posted 10/23/2009 1:43 PM (GMT 0)
Is she have alot of d? Is any of it bloody? (is there a stomach acid smell to it, like you would smell with vomit, most can smell this for a couple minutes even after a crohnie has left the bathroom and stool is down in the plumbing) Can you do a trial of maybe some different pain killers to see if that works better then just the tylenol. I have found that codiene cough syrup stuff at night helps with slowing down the frieght train of my GI tract, and it help with pain.
Posted 10/23/2009 2:48 PM (GMT 0)
Does she indicate that she is in pain in any way that you can tell for sure ? Can you read her body language or expressions ? Most of the pain I have is when I have lots of gas that reaches a stricture. Gas X helps but leaves a bad taste in the mouth. If she had a successful pill cam it should have shown strictures. Talk to your doctor about the test and your concerns about pain. He may have a med that is better than Tylenol, such as Baxtra (spl). So sorry you have so much on your plate to deal with. Hope you get some good results soon...
Posted 10/23/2009 4:51 PM (GMT 0)
Thanks for your replies. She doesn't have any bloody diarrhea, no diarrhea at all actually, she's on a daily dose of miralax to keep her going. That is a good tip to know about the stomach acid smell, I'll keep that one for future if it ever happens.

She does indicate pain, mostly by holding her breath, until her lips are literally purple, her neurologist said that she could actually pass out from holding it too long but she'll start breathing again. She's never done it that long, but we have noticed thru all of this that it is a big pain indicator for her. She also grimaces her face and will moan and cry. I can usually get a pretty accurate response from her when i say "if your stomach hurts look at me" she will sometimes spin her head right around to look me straight in the eye, so i'm sure it's stomach pain. She has had a full endocrinology work up also in Aug that showed she is low in vitamin d but nothing else. Last week I had her to her regular doctor for a complete urine work up and everything was fine there. We did that just to rule out other things before assuming it's her intestinal erosions.

She is on a daily dose of gas x to try and eleviate some of the gas she gets built up from swallowing air, I think it helps a little.

Thanks for all of your helpful ideas, I sure apprecitate them. I have a call into her GI waiting for advice on some pain meds.

Thank you,

Tammy

Posted 10/24/2009 9:06 PM (GMT 0)
some people experience a spike in blood pressure with pain. I am one of them. Could you try checking her blood pressure throughout the day and then if you see an increase you have more evidence of her pain? Could she learn to sign at all? I don't know very much about retts but have a friend w/ an autistic child who can sign but not speak at this point.
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