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

[Guest guest]

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.orgwww.debwells.com

[Guest guest]

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..........

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.orgwww.debwells.comPlease contact mito-owner with any problems or questions.

[Guest guest]

TLE is actually Temporal Lobe Epilepsy.

The doctors have thought since he was 2 that he has these except you never catch them on EEG's. He was started on tegratol, but after 3 years had breakthroughs with double vision and behaviors got worse. so we switched him to depakoate. He has been on that for 8 years now. He was doing ok, but the past 2-3 years things have begin to fall apart again. So now that we have seen so many intense behaviors and intense movements in him, we are seeing another neuro dr....hoping for answers soon!

Hope this helps u.

Donna

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. > > > > ------------------------------------------------------------------------------>