mito cocktail

[Guest guest]

I was wondering if anyone could tell me if their children had any

problems tolerating the " mito cocktail. " My daughter's (she's 11

months old) neurologist is starting her on it. He is giving her Co-

Q10, B-1, B-2 and Carnitor. They are also going to start her on

Periactin for her headaches.

I also wondered if anyone could tell me anything about the process

that their child's condition has taken. My daughter has Complex I,

III, and IV deficiency. She has hypotonia, GERD (despite a nissen),

asthma, migraines, developmental delays (but making good progress)

and mostly g-tube fed. She has worked so hard to attain skills

(sitting independently, rolling over, and just in the last couple of

weeks crawling!!). I wondered if she would lose these skills over

time? I know that most of this disorder is unknown but mom's seem to

know this kind of stuff better than the docs. I just worry about the

possibility of her beginning to have seizures, losing her eyesight,

or her ability to be mobile. She had a normal MRI when she was 2

months old but they are going to repeat it soon. Her first EEG at 3

weeks old was normal but a repeat when she was 4 months old showed

right occipital slowing. She does a lot of twitching and twisting of

her right shoulder, arm, neck and trunk. I'm not sure what that is

about.

I've rambled long enough. If anyone had any insight for me I would

greatly appreciate it.

Meagan

a picture of my angel and the beginning of her journey can be seen at:

www.caringbridge.com/ky/sophiesong