Reagan had an Upper GI (gastro intestinal) test done on Monday, requested by Dr. Motil at the Blue Bird Rett Clinic. She was concerned about Reagan having reflux and other possible reasons for her gagging and eating issues. The test was not as simple of a procedure as I thought it would be but thankfully it was very short. Poor Reagan was not a fan and it was pure torture for her, and just as awful to stand there and watch.
I have not spoken to Dr. Motil yet but I did get an opportunity to speak with her nurse. She said that it looks like Reagan's stomach has a delay in emptying. This could cause her to be full for longer and not want to eat as much. Also can be the reason for reflux and always feeling like she needs to burp. I am anxious to get more information but in the meantime have reached out the my Rett family to see if anyone has more information or advice. So, good news is that we might have a possible solution to her feeding issues soon!
Abby's first visit to Boston for the IGF-1 Trial
10 years ago
I do hope this is good news. I always felt so bad for Reagan on days she would get sick. She's usually so tolerant considering how uncomfortable she must be. She has such a strong spirit! I know that if anyone can beat this syndrome, it's Reagan!!!
ReplyDeleteYou are in amazing hands with Dr. Motil - she is the best. We've had terrible GI issues with Annie and recently saw Dr. Motil in Chicago, we had been told that there was nothing left to do with Annie, that her pain was just something she would have to deal with but then we met Dr. Motil and she gave us a ton of hope that it would be possible to find the source and correct it. Only problem is we are in MI! She's setting us up with a closer colleague. Annie did start domperidone for her gastroperesis (delayed emptying) and it worked well for awhile and then fazed out. I know they can also give erythromycin to speed up the emptying - I suggest reading up on that one though as it can have some nasty side effects. Prayers that you get this under control - GI issues are the worst! Hugs!
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