non verbal child with possible crohn's

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New Member

Date Joined Oct 2009
Total Posts : 9
   Posted 1/14/2010 2:27 PM (GMT -7)   
Thanks everyone for all of your posts here on HealingWell, I've learned alot and appreciate your help.
I have a 16 year old daughter with Rett Syndrome, she is non verbal with minimal communication, pretty much we guess what she needs. She has had GI issues for a year now, starting last Jan. with an upper endoscopy when we were suspecting her reflux was bothering her. It showed she is lactose intolerant and she's been off all dairy since. She was still having troubles, so her  GI put her on a daily gas X and Culturelle, that helped with bloating and gas a bit. She was still having a rough time so in May he did a HIDA scan and her gallbladder was fine but she had an elevated Sed rate. In June he did another upper endoscopy, colonoscopy and a pill cam. Everything looked fine but she had erosion and edema on her distal ileum.  He put her on entecort for 12 weeks and that seemed to help, she went off at the end of Aug. She was good until the beginning of Oct. when she was having trouble again, mostly abdominal pain, lots of loud gurgling in her stomach. So, he put her back on entecort but this time it didn't bring any relief. At the end of Nov. he put her on Cipro for 10 days and prescribed Levsin for abdominal cramping. It was about a week later I suspected a gluten intolerance (even though she tested negative for Celiac (and H-Pylori) in Jan). The first day off of gluten she was already feeling better. He also took blood and stool tests at the end of Nov. for alot of things, she came back with another elevated Sed rate, her CRP was normal, but her calprotectin was also elevated along with Hematocrit, Hemaglobin, WBC, also her saccharomyces cerevisiae IgG, mostly markers of an inflammatory bowel disease. He did say that he's not surprised a gluten free diet makes her feel better and has diagnosed her with an inflammatory bowel disease, but not specific Crohn's or Colitis yet. I'm suspecting Crohn's due to the erosion of the small intestine. We have an appointment in Feb and I'm sure we'll do more testing to see what is going on with her small intestine then and hopefully he can determine Crohn's or Colitis.
I'm a little confused about all of this though, she has never had that problem with needing to go to the bathroom several times a day and NOW! She doesn't have diarrhea problems so much, she has soft stools but is also on Miralax. She seems to be more constipated or having trouble getting it out, she pushes and pushes like crazy acting like she needs to go but doesn't go very much. I'm wondering a little about strictures and what they do to you, how they feel and how they affect bowel movements.
If anyone has comments, ideas, suggestions, I'd love to hear them. It's so hard with her not being able to tell me where it hurts or how bad.
Thank you,

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 1/14/2010 2:42 PM (GMT -7)   
Hi Tammy and welcome to HW. Wanted to let you know that their are Crohnies (myself included) who suffer with constipation more than diarrhea. I have the stricturing (scarring) type of Crohns, so yes sometimes there can be strictures that make it harder to go. One test I would recommend be done on her is the pill cam. This test seems to be one of the best for diagnosing Crohns in the small intestine where the scope can't reach. Do keep us posted on how her appt and testing goes.

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

New Member

Date Joined Oct 2009
Total Posts : 9
   Posted 1/14/2010 7:54 PM (GMT -7)   
Thank you Gail, I'll keep you posted. I'm certain the pill camera will be our next test to see what her erosion is like now, I'm curious to see if it's changed.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/15/2010 6:05 AM (GMT -7)   
I also have the stricturing type at the terminal ileum. I never experienced diarrhea. If anything I tended towards the opposite. My symptoms were occasional abdominal pain and fevers, and I was eventually diagnosed by high CRP, high SED rate, scope, CT-E, and the Prometheus serology test. In the process I also had a HIDA scan and other tests which came back normal.

Having a stricture I do get a lot of gurgling noise. Probiotics seem to help with that, I take VSL#3 and Primadophilus reuteri. VSL#3 is highly recommended and can even help achieve remission of UC. It is fairly expensive to buy online as I do but there is a prescription version that you might be able to get through your doctor and only pay a co-pay if you have drug coverage.

Another option is replacing one or more meals a day with something like Boost or Ensure. That still gives you calories but gives the guts a slight rest. Those products are generally gluten and lactose free.

There are other people on HW who find a gluten-free diet helps with Crohn's. Best of luck with your daughter.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, VSL#3, Primadophilus Reuteri, Folic Acid

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