encehalomyopathy

[Guest guest]

n - I guess that you're lucky to be in Atlanta, right near the experts.

Your son sounds somewhat like mine. is 8, almost 9. He has complex I

and III. He has seizures (primarily partial complex now, but he may have had

absence seizures and drop attacks before he started meds), which started just

before he turned 3. His seizures have been hard to control in the past, but

have been under good control for the last two years, since he started taking

co-enzyme Q. He takes Depakene for the seizures (no good for mito patients,

but it's all that has worked). He has hypotonia and develoopmental delays,

and we have had ongoing and increasing problems with his behavior. I don't

know that I have much wisdom to contribute on any of this - it's all very

frustrating. We''ve had only limited success with behavioral approaches,

since he doesn't seem to generalize well from one situation to another. When

he is misbehaving, I have the sense that he really can't control it. We

tried Ritalin at school, but there were too many side effects. Now he is

taking Adderall during school hours and it seems to be helping him to stay in

control. Beyond that, we are still searching for solutions. I don't know

if any of this is relevant to you. Good luck.

[Guest guest]

Hi! I am new to the mito list and would love to hear from anyone with similar

symptoms as my son, , 4 1/2 yrs. old. has seizure disorder

(atypical absence seizures), hypotonia, delayed development and ataxia. His mto

disease involves complex 1 and 4. He has been on lots of seizure meds and is now

on the ketogenic diet for seizure control. One of my biggest challenges with

is his BEHAVIOR!!!!!

Thanks for responding,

n in Atlanta

[Guest guest]

n,

Hi.My son, , was diagnosed with a mito disease at age 4.5

months. Sorry I can't help you, my son has very different symptoms than

yours does, but I did want to take just a minute to welcome you to the

list.

, mommy to

14 months, Pearson's syndrome and Kearns-Sayre syndrome

n Howe wrote:

>

> Hi! I am new to the mito list and would love to hear from anyone with

> similar symptoms as my son, , 4 1/2 yrs. old. has seizure

> disorder (atypical absence seizures), hypotonia, delayed development

> and ataxia. His mto disease involves complex 1 and 4. He has been on

> lots of seizure meds and is now on the ketogenic diet for seizure

> control. One of my biggest challenges with is his

> BEHAVIOR!!!!!Thanks for responding,n in Atlanta

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