recently diagnosed with complex III

[Guest guest]

My five year old granddaughter was recently diagnosed with complex

III. She is only now becoming verbal so she is unable to say what

she is going thru. What is she feeling when she screams. and I

would like to hear from anyone who has complex III so that perhaps I

can understand some of what she is feeling or experiencing.

She has some sensory integration problems, ataxia, neurological

episodes of out of control flailing and screaming such a gutteral

scream. They last from 15 to 120 minutes. Never with any warning

and nothing can be done to console her. When she is having an

episode or has been exposed to a virus she becomes less verbal. A

tremor in her hand, developmental delays and is severely affected by

viral infections. When her sister gets a cold, she has bad days

including more episodes and heightened sensitivity to light and

noise and being touched. She is easily agitated.

It all started for her when she was 20 months old. She seemed fine

until then.

WE are in TExas. //After 2 years of searching we finally have a

diagnosis.

I would love the hear from anyone who has first hand experience of

what she is going through.