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Message: <blockquote data-quote="curiousgal" data-source="post: 491343" data-attributes="member: 14664">Dear All,We met an otolaryngologist on Friday.  He indicated that he's never seen any results as bad as my daughter's was.  Per the reports, she has severe obstructive sleep apnea and she seemed to be stopping her breath atleast 3 times every min.  Her longest sleep apnea was for 24.5 seconds.Her apnea index was 155; hypoapnea index - 28; supine index - 183Impressions from the sleep study were as follows:(1) Severe obstructive sleep apnea - 327.23(2) Obstructive hypoventilation syndrome - 327.23(3) Periodic limb movements - 327.51Her Carbondioxide levels were abnormally high.  It was noted to be in the range of 52 mm Hg while awake and 85 mm Hg during sleep. The test also revealed severe desaturations to 45%.He then put a scope through her nose to see how her airway looked and we could clearly see on the monitor, that the obstruction was being caused mainly because of her severe hypotonia.  Due to the extreme nature of her hypotonia, the epiglottis flap seemed to be closing the airway most of the times.As a result, he said, the only corrective measure would be to get a tracheostomy done.  We asked if we could get another sleep study done to confirm if the results were appropriate because she doesnt labor for breath every night (Ofcourse, I dont know if it means that she stops breathing quite frequently even when not stressed out).  He agreed to order for another sleep study, which most likely will happen either Monday or Tuesday considering the seriousness of her sleep pattern.My heart is in my throat right now.  Losing my sleep over my little girl's struggle!Is there anything, anything at all that helps with improving muscle tone?</blockquote>

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