Heidi and Annette....Re: Do any others have these neuro symptoms?

[Guest guest]

Thanks for your feedback. Maybe they do have a neurotransmitter

disorder. The other things they say point to it are hyperactivity,

don't sleep, and completely insane when in crisis.

The boys have had these episodes since they day they got sick (over a

year ago). They have called them dystonia and oculargyric crisis but

have never given us a med to help control them. The neuro did talk

about putting them on parkinson drugs if they get a positive

diagnosis. I am frustrated because it seems like we get a different

diagnosis every 3 months.

The boys have had occasional nystagmus like . I feel really

bad after reading Heidi's post because Zack actually had an episode

that lasted 3 days. Nobody ever knows what to do so it did not even

dawn on me to take him to the hospital.

Thanks again,

Kris

> > Hi all,

> >

> > I was wondering if any other kids have similar symptoms to mine

> > because there is now a question of what is their primary disorder.

> >

> > This is what we see and all occur at the same time: Eyes deviate

> to

> > the right and get stuck their briefly (this is very painful for

> them--

> > they cry and tell us to get the " bees out " ), fingers began

twisting

> > in odd positions and get stuck in these odd positions, up on toes

> > with toes curled under, somethimes they will stick their tongue

> out,

> > they either bob their head, cock it to the right, or shake it.

> >

> > These episodes usually occur around a stress (bowel movement,

burp,

> > startle, sudden change in temp, excited about an activity). They

> > usually occur daily with increase in frequency after illness or

> > stress.

> >

> > Our last Mayo visit it seemed to be a group consensus amoung the

> docs

> > that our children might have a neurotransmitter disorder causing

> all

> > the mito symptoms. The boys are extremely responsive to thiamine

> and

> > COQ10, we have a partial complex 1 biopsy in one of the twins,

and

> > one always has a high lactic acid; yet they say their

neurological

> > symptoms are not seizures, but classic examples of a

> neurotransmitter

> > disturbance (especially the less affected one).

> >

> > We will be at St. 's on the 17 and 18 for LP's to rule this

out.

> >

> > Thanks for any input,

> >

> > Kris

> >

> >

> >

> > Please contact mito-owner with any problems or

> questions.

> >

> >

> >