complex 1 question

[Guest guest]

It seems like so many of you who say you have children with complex 1 also say the 1st symptom they showed was seizures and then they got progressively worse. Is that the common picture with complex 1? I think that is at least one thing wrong with us, but maybe I'm wrong.

Are seizures common with any mito disorder?

I want to know because of Riley. I know no one can say for sure but I have to wonder now if it is almost a given that she will get worse.

I'm wondering why on earth when there are so many people in the whole extended family, why is it coming out this way only on HER? I know in my mind this is a stupid question for me to ponder since I know about the variability's of the disease both throughout the family members and even within the individual, but it sure seems like SOMEONE else would have followed this pattern!

Maybe some have but that is more of what everyone in my family has hidden. I know of several in the "olden" days that they say went crazy. Also the 18 month old who died of eczema may have also had seizures for all I know. I think one of my nephews did but they are saying it was just jerking when he went to sleep now. The family tried to keep it unknown about several suicides, a murder, and attempted suicide, even ADHD! I can't believe that kind of reasoning/thinking.

Do some kids start having seizures and that's all that happens or they go away? Shenan and I have heard/read that many times kids start having them around 6 or 7 and then quit around 9.

Has anyone used just nutrients for the seizures and does that ever work? Maybe using them WITH the seizure meds might let one go down on the dosages or keep the disease from getting worse?

[Guest guest]

-, My son started having seizures at 18 hours of life. He was

not diagnosed with complex I until age 4. The seizures were a lot

worse in the beginning, partly due to the rate of growth early on.

Theraputic levels of medication are based on weight and we all know

how fast some babies can grow. From age 1 to 2 he was off of his

seizure meds and did fine. He then started having seizures again

and was put on keppra. The seizures only happen now when he has a

fever or his body is in metabolic stress. I do know that some

children do start to have seizures around 4,5,6 and then outgrow

them at age 9 or so. However the majority do not outgrow them.

(sorry) I do take my son to a homeopathic/naturalist. I think she

is absolutley wonderful. I have informed all of Wyatt's doctors and

they are fine with it. More and more doctors are starting to see

that a holistic approach can be beneficial. We have not decreased

the amount of keppra that he is on, but Wyatt has been all around

healthier since we started seeing her. This was the first winter

that he was not hospitalized for pneumonia, something he has had

every year. I credit it to the naturalist. I hope this has helped

to answer some of your questions.

Geri-Anne, Wyatt,4, Complex I, Dina and Bianca, 2, and

-- In Mito , " " <joelinda@g...> wrote:

> It seems like so many of you who say you have children with

complex 1 also say the 1st symptom they showed was seizures and then

they got progressively worse. Is that the common picture with

complex 1? I think that is at least one thing wrong with us, but

maybe I'm wrong.

> Are seizures common with any mito disorder?

> I want to know because of Riley. I know no one can say for sure

but I have to wonder now if it is almost a given that she will get

worse.

>

> I'm wondering why on earth when there are so many people in the

whole extended family, why is it coming out this way only on HER? I

know in my mind this is a stupid question for me to ponder since I

know about the variability's of the disease both throughout the

family members and even within the individual, but it sure seems

like SOMEONE else would have followed this pattern!

>

> Maybe some have but that is more of what everyone in my family has

hidden. I know of several in the " olden " days that they say went

crazy. Also the 18 month old who died of eczema may have also had

seizures for all I know. I think one of my nephews did but they are

saying it was just jerking when he went to sleep now. The family

tried to keep it unknown about several suicides, a murder, and

attempted suicide, even ADHD! I can't believe that kind of

reasoning/thinking.

>

> Do some kids start having seizures and that's all that happens or

they go away? Shenan and I have heard/read that many times kids

start having them around 6 or 7 and then quit around 9.

>

> Has anyone used just nutrients for the seizures and does that ever

work? Maybe using them WITH the seizure meds might let one go down

on the dosages or keep the disease from getting worse?

>