Mito Cocktail

[Guest guest]

I was wondering if anyone could tell me if their children tolerated

the " mito cocktail " okay. My daughter's neurologist wants to start

her on it. I trust his judgement immensely I am just concerned over

side effects. You know nausea, diarrhea etc. She is 11 months old

and already feeds extremely poorly. She gets continuous g-tube feeds

at night and a couple bolus feeds through the day. (I try to let her

feed by mouth any time she will).

I was also wondering if anyone could give me a hint at what to expect

as far as the course her mito disease might take. She has Complex I

III and IV deficiency. She had apneic spells as a small infant, she

has reflux (despite a nissen), developmental delays, low muscle tone,

migraines, muscle pain, she " twitches " a lot, and we most recently

added asthma to the list. I just wonder if she may lose the skills

she has worked so hard to reach. Also, I worry that seizures are

looming in her future. She had a normal MRI and EEG at 2 months of

age. She has a repeat MRI scheduled and her last EEG showed right

occipital slowing. The unknown is so scary.

Any thoughts on any of this would really be appreciated. Thanks.

Meagan

Mom to Sophia - the beautiful baby who won't stop smiling!!!