Re: Behavior issues can you help? PLEASE..........

[Guest guest]

Hi Donna,

What are TLE's?

" Weirdness " is an interesting description, and one I can surely

relate too. Craig's behavioral episodes are just so extreme and off-

base sometimes. It is obvious that something in the brain is

malfunctioning beyond ADHD, maybe psychosis would describe it? I

don't know. He did have visual hallucinations for awhile. Other

times he appears so mellow and entirely normal. This disease is

just so puzzling!

Good luck with the new doctor!

God bless,

Donna H.

-- In Mito , " iluvdizney2 " <iluvdizney2@a...> wrote:

> my son has had large pupils....associated what have always been

presumed to be TLE's...Hopefully we will get our answers as the

behaviors are definitely associated with " weirdness " and events not

normal for a kid with simply behavior problems....we see neuro again

in august. This Dr is a doctor who does a TON of Mito kids int he

Boston area and comes HIGHLY recommended by Dr Korson.

> Haven't I heard recently that everyone just " loves " this

disease????

> Donna

> mito mom to 5 mito kids

> Re: Re: Behavior issues can you help?

PLEASE..........

>

>

> In a message dated 4/14/2005 11:03:29 P.M. Central Standard

Time, b_g_hudson@y... writes:

> She still bangs her head, scratches herself, pulls her hair

out. Her eyes look so weird, like she isn't there. Someone a

couple of weeks ago discribed their child as having enlarged pupils

> have you considered seizure activity in the frontal lobe? EEG's

aren't always perfect but that was how my 's weird behavior

was explained and it made sense. He did show some activity in the

frontal lobe but we were never able to define the specific type of

siezure. However, you might consider having your neuro try her on

some anti=seiz meds, just in case. Our other son, who has high

functioning autism (not blood related=not mito related), takes them

for behavior even though he doesn't have seizures, so I would give

it a try. Tergretol worked for both of my boys and then

added Neurontin later when the dementia got so bad and caused weird

behaviors...we saw a great improvement. Neurontin also works for

neuropathic pain, which could be pain she is having but doesn't know

how to tell you...sometimes that causes behavior too. A lot of Mito

kids have had good success with Neurontin.

>

>

> deb...mom to four great kids and wife to one amazing guy!

> www.LifeofLoveProject.org

> www.debwells.com

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>

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