Re: Annette...the disorders are called

[Guest guest]

" neurotransmitter disease or disorders " I think their is

a " pediatric neurotransmitter disease foundation " or something like

that supplies information to docs. But that is what they are called.

I also had lots of anger (and still do) to a few docs (all neuro's)

and that is along story too. I feel your pain and anger.

Kris

> > > 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

> > > > >

> > > > > Please contact mito-owner with any problems

> or

> > > > questions.

> > > > >

> > > > >

> > > > >