i have a few ?'s for you guys

[Guest guest]

Hi,

Asher used to take Polycose (hidden in his food) to try to help him gain weight. Unfortunately, he was able to figure out that the polycose was in his food and he wouldn't eat it. His gastrointestinal motility got worse because of a virus (assumed) and he would no longer eat well, so he's now on a g-tube which has helped him tremendously. He's gained weight, is stronger, has more endurance, and is generally "full of beans".

Asher would have "shivering" episodes (not due to cold) where he would shake and shiver briefly, but these have stopped. I'm sure many others will have some thoughts on these things.

Anne R - mom to Asher (3 1/2 - complex III defect and possible complex I defect)

[Guest guest]

Ann,

I will try to help you with your questions based on our daughters experiences. I am sure you will get other responces, some probally with different reasons for why things happen.

We do see a decent amount of shaking with Grace. Usually it is much more pronounced when she is under any major stress, overheating, or virus. She also has low blood sugar so if she goes more than a few hours without something to eat, she tends to get very shaky.

We have not noticed any rocking with her, but she does have some unusual behaviors (including head banging and, toe walking).

She does not take Polycose, by brand name, but we often use supplemental foods when she is not eating well. We typically use Pediasure, or the adult form of Ensure. As of now, she is taking an apetite stimulant wich seems to be working so we do not have a need to supliment her now. We always resort to supplementing at the first sign of illness with Pediasure, and Pedialyte. Grace has a new protocal, for her, which she needs IV fluids during a virus, so we try to beat it before she gets ill. Anything to avoid a hospital stay is good for us.

As far as the neuro visit goes, expect to be amazed. They will take your complete family history, his history and ask a lot of questions. With Grace they watched her walk, play, move and studied it all. They measured her head, looked for any facial abnormalities, checked her eyes. They also studied her reflexes and her sensory system. Our mito doc is also Gracies neurologist so he went even farther into her medical history. For her the first visit was at least an hour and a half.

Best wishes.

,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007

[Guest guest]

does any of you or your kiddo's have any shaking in your arms/hands?

jacobs had this shaking thing in his hands/arms for a while.. its

usally during any theripy(spelling) or when he's reaching for things.

sometimes u can also feel the shaking through out his body when his

arms/hands shake.

does any of you our your kiddo's rock?

jacob does this all the time.. he does when he's laying down, sitting

up and sleeping.

does any of your kiddo's take polycose?

jacob is going to start polycose we recive it.

jacob is going to see a neourologist(spelling) on aug 10th.

what does the neour do during the first appt?

thats enough ?'s for now. and thanks for any help in advance.

(Ann) mommy to

hunter 12/18/01

jacob 4/18/03

[Guest guest]

Hi, It often seems to me that is constantly in motion . . .. rocking,

head rolling, waving his hands around. A lot of it is just

self-stimulation. He also has myoclonic jerks a little--where it seems that

the movement is unintentional. I remember Schoffner saying that did

not shake when he reached for something. I think he said that this could

indicate something more disturbing neurologically than all the

self-stimulation stuff he does. So, maybe you should check into this.

Lori and , complex I and IV, age 5 tomorrow

i have a few ?'s for you guys

> does any of you or your kiddo's have any shaking in your arms/hands?

>

> jacobs had this shaking thing in his hands/arms for a while.. its

> usally during any theripy(spelling) or when he's reaching for things.

> sometimes u can also feel the shaking through out his body when his

> arms/hands shake.

>

> does any of you our your kiddo's rock?

>

> jacob does this all the time.. he does when he's laying down, sitting

> up and sleeping.

>

> does any of your kiddo's take polycose?

>

> jacob is going to start polycose we recive it.

>

>

> jacob is going to see a neourologist(spelling) on aug 10th.

>

> what does the neour do during the first appt?

>

> thats enough ?'s for now. and thanks for any help in advance.

>

> (Ann) mommy to

> hunter 12/18/01

> jacob 4/18/03

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

It sounds like an intention tremor that occurs when your muscles

are working extra hard to do things and are weak. We believe Asenath

has this some and I myself when I have been weaker have had this

issue. Often, muscle pain comes with this form. There are other

reasons for tremor though. Hopefully your neuro can help you know

which reasoning is accurate.

The first neuro appointment involves a thorough evaluation and

history. Usually the first half or more is just discussing your

concerns and aswering the neuro's questions. The examination often

will involve tracking of the eyes, examining walking patterns, reflex

checks, using an instument to lightly rub against the bottom of the

foot to see which direction the toes curl, etc. If sensory issues

are involved the neuro may also lightly poke at the skin to see if

one area is more sensitive than other areas. (This does NOT hurt.)

The rocking is not something we have experience with but I know

that there could be at least two possibilities. One is just an

enjoyment of the child doing the activity and the other could be a

sign of autism which is common in Mito. Others on this list can help

you further with the symptoms associated with the disorder as well as

your neuro.

I hope this helps you some. Feel free to ask the group more

questions if you have any.

Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos

> does any of you or your kiddo's have any shaking in your arms/hands?

>

> jacobs had this shaking thing in his hands/arms for a while.. its

> usally during any theripy(spelling) or when he's reaching for

things.

> sometimes u can also feel the shaking through out his body when his

> arms/hands shake.

>

> does any of you our your kiddo's rock?

>

> jacob does this all the time.. he does when he's laying down,

sitting

> up and sleeping.

>

> does any of your kiddo's take polycose?

>

> jacob is going to start polycose we recive it.

>

>

> jacob is going to see a neourologist(spelling) on aug 10th.

>

> what does the neour do during the first appt?

>

> thats enough ?'s for now. and thanks for any help in advance.

>

> (Ann) mommy to

> hunter 12/18/01

> jacob 4/18/03

[Guest guest]

More suggestions concerning the tremors...

1. Hypoglycemia often occurs with exercise and causes weakness, heat

flashes, nausea, and tremors.

2. Intention tremor occurs when one is trying hard to do something

and the muscles are working too hard.

3. Exercise intolerance can also cause tremors because the muscles

become so tired they begin to shake. I do this with hard exercies,

but have seen my daughter when weaker do it with simple activities.

4. Sleep myoclonus was mentioned by one mom and is the type you see

just after falling asleep. These can be both seizures or not.

I know there are even more reaosns, but wanted to follow up my last

ote more thoroughly.

Darla

> > does any of you or your kiddo's have any shaking in your

arms/hands?

> >

> > jacobs had this shaking thing in his hands/arms for a while.. its

> > usally during any theripy(spelling) or when he's reaching for

> things.

> > sometimes u can also feel the shaking through out his body when

his

> > arms/hands shake.

> >

> > does any of you our your kiddo's rock?

> >

> > jacob does this all the time.. he does when he's laying down,

> sitting

> > up and sleeping.

> >

> > does any of your kiddo's take polycose?

> >

> > jacob is going to start polycose we recive it.

> >

> >

> > jacob is going to see a neourologist(spelling) on aug 10th.

> >

> > what does the neour do during the first appt?

> >

> > thats enough ?'s for now. and thanks for any help in advance.

> >

> > (Ann) mommy to

> > hunter 12/18/01

> > jacob 4/18/03

[Guest guest]

Sheldon rocks a lot, he looks like he's dancing much of the time

and often goes to sleep rocking his head back and forth.

does any of you or your kiddo's have

any shaking in your arms/hands?

jacobs had this shaking thing in his hands/arms for a while.. its

usally during any theripy(spelling) or when he's reaching for

things.

sometimes u can also feel the shaking through out his body when

his

arms/hands shake.

does any of you our your kiddo's rock?

jacob does this all the time.. he does when he's laying down,

sitting

up and sleeping.

does any of your kiddo's take polycose?

jacob is going to start polycose we recive it.

jacob is going to see a neourologist(spelling) on aug 10th.

what does the neour do during the first appt?

thats enough ?'s for now. and thanks for any help in advance.

(Ann) mommy to

hunter 12/18/01

jacob 4/18/03

Please contact mito-owner with any problems or

questions.

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[Guest guest]

Nikki's left hand will shake, more noticeable when doing crafts or detailed work, also noticed when trying to play mini golf.

-----Original Message-----From: ann Sent: Thursday, July 22, 2004 5:44 PMTo: Mito Subject: i have a few ?'s for you guysdoes any of you or your kiddo's have any shaking in your arms/hands?jacobs had this shaking thing in his hands/arms for a while.. its usally during any theripy(spelling) or when he's reaching for things. sometimes u can also feel the shaking through out his body when his arms/hands shake.does any of you our your kiddo's rock?jacob does this all the time.. he does when he's laying down, sitting up and sleeping.does any of your kiddo's take polycose?jacob is going to start polycose we recive it.jacob is going to see a neourologist(spelling) on aug 10th.what does the neour do during the first appt?thats enough ?'s for now. and thanks for any help in advance.(Ann) mommy tohunter 12/18/01jacob 4/18/03Please contact mito-owner with any problems or questions.