Do any others have these neuro symptoms?

[Guest guest]

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

[Guest guest]

Hi Kris,

Some of what you are describing sounds like dystonia... the fingers and toes stuff... can you ask the doctors if this could be the start of dystonia for your little ones?... Dystonia is neurological and can cause severe problems sometimes with no treatment....no one ever explained this to me...

Annette, mom to Akasha (undiagnosed loss of skills, medically fragile, seizures, severe generalized dystonia, cognitive disability, microcephally, atrophy of the brain... among other things..) ... negative for Leigh's, Rett syndrome & Angelman syndrome

pnkntwins wrote:

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,KrisPlease contact mito-owner with any problems or questions. Post your free ad now! Yahoo! Canada Personals

[Guest guest]

Hi Kris

I agree that this sounds like dystonia. It is caused by

neurotransmitter problems. gets klonopin for it and it is

very effective. Interestingly, the klonopin stops it completely and

then it starts up just as strong when she outgrows the dose, kind of

like flipping a switch. We were told as well that it is not

seizures. When gets it, she has nystagmus, her right neck

and side crunch in, and har left leg sticks out and the toes fan.

She screams like it hurts. She had one episode that lasted for 40

minutes and she got IV valium. We can give her diastat for prolonged

dystonia at home. Before she was treated, she used to have it more

in the evenings or when she was sick, and it happened every day. Now

we only see it when she outgrows her med. We were told that some

kids with dystonia are responsive to parkinsons meds and that was an

option if she didn't get better with the klonopin. Good luck!

Heidi, 's Mom, 22 months, unspecified mito myopathy, TPN

dependent, pseudo obstruction, dysautonomia, g and j tubes, O2 at

night, seizures, dystonia, etc.

> 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]

I was also going to mention dystonia... that was the first

consideration with brandon, as his feet and legs would get 'frozen'

in twisted positions for short periods of time...

might be worth asking about...

> > 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.

> >

> >

> >