Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Postby johnsmom » Mon Apr 19, 2010 3:04 pm

My almost 2 year old was decompressed with duraplasty in December '09. He has aspirated since birth. We had a repeat MBS last week and his aspirating is getting worse. Has anyone else had this problem? He has been tested by endoscopy with biopsy and swallow study for reflux, so this is not an issue. Any insight would be appreciated. We are visiting GI doctor today and geneticist next week to explore other avenues. He turns blue on occasion while still and has balance issues. Thanks again.
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Re: Aspirating

Postby lcolangelo » Thu Apr 22, 2010 10:46 am

My daughter initially presented with recurrent aspiration pneumonia. They thought that it was caused by reflux and even did a fundoplication (surgery for reflux) -- but she continued to aspirate. They finally orderd an MRI-- after she started grabbing her head and screaming ( she was only 2 1/2) and found that she had a chiari with basilar invagination. That was 8 years ago. We are in the hospital now for her 5th decompression.-- have they rechecked his chiari? My daughter continues to grow back bone-- it's rare but can def. happen! He sounds very much like my daughter-- do you see a chiari specialist? Good luck to you!
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