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

[Guest guest]

-Kris,

Are the boys on reglan? had a bad reaction to it and it made

the dystonia much worse. It's treated by giving IV benadryl. Have

you ever tried giving benadryl to your son when he's having

dystonia? When the episode lasted three days was it continuous? We

were told that H could have muscle damage and blood breakdown (I

don't remember what it's called, something with blood in her urine)

if it continued too long. had the neurotransmitter tests and

nothing was low, but one was high and they said they didn't know if

it was a problem or not. I hope the docs can try some meds with your

sons. It really seems like a painful condition and I bet an adult

would get heavy duty pain killers right away! Just because a child

cries or has trouble sleeping doesn't mean it shouldn't be treated- I

hate this " we'll keep an eye on it " stuff.

Good luck!

Heidi, 's Mom

-- In Mito , " pnkntwins " wrote:

> 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.

> > >

> > >

> > >

[Guest guest]

Kris,

My daughter Akasha has tried several meds for parkinson's and only L-dopa drug name Sinement has helped... but not with the dystonia but with her sleeping... she was up all night with restless leg movements... the L-dopa has helped her sleep because it stops the restless leg movements... all the other parkinson's drugs didn't even put a dent in the dystonia... but its worth looking into... some people have amazing results... some others don't have any... good luck

Annettepnkntwins wrote:

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. > > > > > >

[Guest guest]

Heidi & Kris,

My daughter has severe generalized dystonia... which means that she is completely frozen in the seating position... hands and arms pulled up into the fetal position... and doctors won't do a damn thing... they say that it won't change her condition and that they aren't sure that her quality of life is that far off anyone elses... please give me a break... would you want to be like a stone ... stiff and shut off from the world locked in a body that won't move and when people try to move you its very painful... don't get me started on doctors and what they won't do for our kids... Akasha is 15yrs old and has lived with dystonia for about 8 of those years... and I've had to pull nails to get them to try parkinson meds on her... no one knows why she has dystonia and they feel its best to leave it alone... my daughter cries all the time when you try to move her... I'm talking about personal care here... not physio... its very very frustrating...

Annetteheidicoleman2002 wrote:

-Kris,Are the boys on reglan? had a bad reaction to it and it made the dystonia much worse. It's treated by giving IV benadryl. Have you ever tried giving benadryl to your son when he's having dystonia? When the episode lasted three days was it continuous? We were told that H could have muscle damage and blood breakdown (I don't remember what it's called, something with blood in her urine) if it continued too long. had the neurotransmitter tests and nothing was low, but one was high and they said they didn't know if it was a problem or not. I hope the docs can try some meds with your sons. It really seems like a painful condition and I bet an adult would get heavy duty pain killers right away! Just because a child cries or has trouble sleeping doesn't mean it

shouldn't be treated- I hate this "we'll keep an eye on it" stuff.Good luck!Heidi, 's Mom-- In Mito , "pnkntwins" <pnkntwins@y...> wrote:> 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. > > > > > > > > >