My son (2 1/2 y.o.)

[Guest guest]

Hello everyone,

I have a son, , who was born with Bilateral Anophthalmia (no

eyes) so is therefore blind. He was also diagnosed 2 months later

with Septo Optic Dysplasia. As of June 2004 he was diagnosed with a

Mitochondrial Disorder due to a muscle and skin biopsy done at that

time. He also has severe apnic clusters which cause him to stop

breathing, turn blue and become unresponsive. We have to administer

a short term seizure medication when these clusters happen to stop

the episode and get him breathing again. The ambulance then

transfers him to the hospital for overnight observation in ICU and

then usually sends us home the next day. They have been unable to

find the cause of these severe apnea clusters. EEG's tell them it's

central apneas but not sure of the cause. We just recently found out

he is also having some seizure activity going on but does not

correlate with his apneas. Has anyone in this Mito group dealt with

apneas with their child? We are also getting set up to start

school this year and was wondering if anyone could give us some

insight on what to include on his IEP regarding safety measures that

should be taken by the school because of his Mitochondrial issues.

We're still learning about this disorder and would appreciate any

insight someone can share with us. Thank you all in advance for your

help and support.

Sincerely,

K.