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Hello everyone, My son, , was recently diagnosed in 2004 with a

Mito disorder (type unknown at this time). He was born without eyes

(bilateral anophthalmia) and two months later diagnosed with Septo

Optic Dysplasia (although his pituitary gland is fully intact). He

also has had 7-10 severe apnic clusters in which he has stopped

breathing on us and had to be transported via ambulance to the

hospital and in a few cases flighted down to Milwaukee Children's

Hosp. He most recently was diagnosed through an EEG as having some

seizure activity. My current question to anyone who can forward to

me is what we need to be aware of when he is sedated? He is going in

April 5th to have a catscan and hearing test done and will need to be

sedated for this. Can you please let me know what to tell the

anesthesiologist they should not use on him? will be kept

overnight for observation because of his Mitochondrial issues and his

severe apnic episodes. Come the end of April, will also be

going in for major surgery to remove some inflatable expanders in his

boney eye sockets that were placed about 1-1/2 yrs. ago. They're

then going to place permanent like marbles in the sockets to prevent

the bone from colapsing. Is anyone else currently dealing with the

severe apnic episodes? If so would you please share your experiences

and if the doctors have ever found the cause of your child's

episodes? They tell us 's are central apneas but not sure of

the cause. Thank you in advance for all your support.

Sincerely,

at eak_mmk@...

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