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Re: Sleep Study/ENT/Myst

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The ENT is correct. If the obstructive sleep apnea is related to

tonsils and/or adnoids, removal will greatly improve the sleep

study. The difficulty with mito is that many children and adults

have obstructive sleep apnea related to muscle weakness affecting

the airway. When that is the case, a T & A will not help. Our oldest

daughter had a T & A with no improvement, her obstructive apnea was

definitely related to her mito and muscular weakness or floppiness

during sleep. She is now on BiPAP and doing much better.

It is extremely important to have an ENT and Pulmonologist that

understand mito and the implications in regars to sleep related

issues. The kids can not do well if they don't have restful sleep

with adequate oxygen to their brains.

is continuing to have heart rate issues related to pacemaker

leads that are not capturing/sensing correctly. The

electrophysiologist at Cleveland Clinic is away this week. She will

review the new event recording strips when she returns Monday. Her

partner called this mornign to say they have the strips, they are

concerned but will likely need to monitor for at least another week

prior to scheduling a replacement. They review all cases as a group

so there is no question in regards to medical necessity and

obtainign insurance authorization. For the risk is

significant as she is ventilator dependent during sleep related to

autonomic issues, ie primary ventilatory failure. Our Critical

Care attending in Milwaukee is in agreement with this plan.

If you have very specific questions feel free to email me privately

on my personal account servedogmom@...

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