Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 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@... Quote Link to comment Share on other sites More sharing options...
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