I've been lurking here for several weeks and I have to say, it's a great place to get alot of information, you all have been so helpful already.
My daughter is 16, she has rett syndrome, a neurological disorder affecting mainly girls, it's in the autism spectrum but physically more involved. She is non verbal and needs care 24/7, not being able to do anything for herself other than some hand feeding. Anyway, since she is non verbal it's been tough figuring out what has been wrong for the last year. She was diagnosed this week with crohn's, which is a bit of a relief because now we can get on with treating it, but on the other hand it will be an ongoing challenge to figure out if she is flaring and what foods are bothering her. I'm going to use alot of your posts to find out what bothers most people and stay away from those foods. She has been a little of a mystery trying to figure out what has been wrong, it started last Jan. when she had her first upper endoscopy, thinking her reflux was bothering her. It turned out she wasn't refluxing but showed she is lactose intolerant. We thought that is fine, no dairy, very easy fix. So, after a couple months she wasn't herself yet, but better off of dairy. In June she had another upper endoscopy, colonoscopy and a pill camera. The pill camera showed erosion/irregular mucosa/apthous ulcer and thickened fold in her terminal ileum. That was it though, no other signs of crohn's, her GI treated her with 12 weeks of entecort and it did some good, she had 2 months of feeling good. Then in October her abdominal pain came back, so he put her back on entecort and it didn't do anything. In Nov. then he took a ton of blood and stool tests, it showed some flagged markers in some areas like hemoglobin, wbc, monocytes, mcv. She has always had an elevated sed rate since this all started and in Nov. he took a calprotectin rate which shows inflammation specifically in the GI tract and her's was elevated. She also had an elevated saccharomyces cervisiae and atypical pANCA. He said that the Sac. Cerv. Is a yeast that is commonly elevated in people with IBD.
Anyway, this could go on and on, but he put her on 7 weeks of prednisone, 40 mg a day to start then after a week we start to taper and after 10 days we’ll add pentasa. We are optimistic that this will help her and give her some relief from the abdominal pain she’s been having. She tends to be more constipated and no real diarrhea.
I think the difficult thing for us is going to be figuring out what kind of a diet to give her, it’s hard to tell what will trigger pain for her. We’ve got her on a gluten free diet, I realized in Dec. that it made her feel better so we’re sticking to that. Any advice, tips, comments will be greatly appreciated from all of you who deal with this daily.
Thank you,
Tammy
My daughter is 16, she has rett syndrome, a neurological disorder affecting mainly girls, it's in the autism spectrum but physically more involved. She is non verbal and needs care 24/7, not being able to do anything for herself other than some hand feeding. Anyway, since she is non verbal it's been tough figuring out what has been wrong for the last year. She was diagnosed this week with crohn's, which is a bit of a relief because now we can get on with treating it, but on the other hand it will be an ongoing challenge to figure out if she is flaring and what foods are bothering her. I'm going to use alot of your posts to find out what bothers most people and stay away from those foods. She has been a little of a mystery trying to figure out what has been wrong, it started last Jan. when she had her first upper endoscopy, thinking her reflux was bothering her. It turned out she wasn't refluxing but showed she is lactose intolerant. We thought that is fine, no dairy, very easy fix. So, after a couple months she wasn't herself yet, but better off of dairy. In June she had another upper endoscopy, colonoscopy and a pill camera. The pill camera showed erosion/irregular mucosa/apthous ulcer and thickened fold in her terminal ileum. That was it though, no other signs of crohn's, her GI treated her with 12 weeks of entecort and it did some good, she had 2 months of feeling good. Then in October her abdominal pain came back, so he put her back on entecort and it didn't do anything. In Nov. then he took a ton of blood and stool tests, it showed some flagged markers in some areas like hemoglobin, wbc, monocytes, mcv. She has always had an elevated sed rate since this all started and in Nov. he took a calprotectin rate which shows inflammation specifically in the GI tract and her's was elevated. She also had an elevated saccharomyces cervisiae and atypical pANCA. He said that the Sac. Cerv. Is a yeast that is commonly elevated in people with IBD.
Anyway, this could go on and on, but he put her on 7 weeks of prednisone, 40 mg a day to start then after a week we start to taper and after 10 days we’ll add pentasa. We are optimistic that this will help her and give her some relief from the abdominal pain she’s been having. She tends to be more constipated and no real diarrhea.
I think the difficult thing for us is going to be figuring out what kind of a diet to give her, it’s hard to tell what will trigger pain for her. We’ve got her on a gluten free diet, I realized in Dec. that it made her feel better so we’re sticking to that. Any advice, tips, comments will be greatly appreciated from all of you who deal with this daily.
Thank you,
Tammy
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Wow that sounds really tough for you and your daughter. Life just isn't fair sometimes. I don't know a lot about Rett Syndrome but I have seen a documentary on TV about it. Can't imagine what Crohn's would be like on top of that as it is hard for her to communicate what is going on, yes?
