Hi everyone, I am new to the group and looking for hopefully some insight into our situation! My son turns 11 today and we were admitted into the hospital last night, not exactly how any kid wants to spend their birthday. he was diagnosed with PDD-NOS (a spectrum of Autism) about 2 1/2 years ago. Since then we have seen neurology for constant migraines, pulmonology for 3 sleep studies including a video EKG, who then recommended us to Genetics for Mito, and no GI because he constantly battles vomiting and diarrhea. He started school in August and has been to the nurse 56 times due to being tired, nausea,headaches, or sleeping in class. This does not include all the times he sleeps in his resource class or his teacher lets him sleep in her class. On the weekends he is starting to average about 14 hours of sleep a day (this is a sound, can not wake him up, he is out of it sleep). Genetics has put him on the CQ10 and Levocarnitine and said we need to do this for 3 months before they will preform a muscle biopsy, however they do not feel that he has met all of the guidelines for mito. i have been reading and learning about mito and everything i read says this is not cut and dry and with all the the symptoms and issues he is having they are all falling under what I have read. I feel like the doctors are looking at us like we are crazy, and at this point I feel lost and helpless! Any advice would be appreciated, thank you in advance!
Posted on: Tue, 09 Dec 2014 16:25:56 +0000
Trending Topics
Recently Viewed Topics
© 2015