Question about seizures

[Guest guest]

,

Billy does not have any epileptic symptoms.

He does have the " one thing after another " cycle. They told us that

more body sytems would become involved as more time goes by. I think

the energy is just not enough to go around to the whole body. Also

sometimes you just hate to go to the doctor as they see something

after a break that you seeing him everyday don't see. They send you

to see the specialist and suprise! you have something else to add to

the list.

Hang in there! I know the okay what's next can switch between that

and panic and back so quickly that it makes you dizzy.

In the same boat as you,

Twana

>

> I was wondering if all mito kids are epileptic?

> I guess I'm concerned because any time gets one thing under

> control then another body system will throw him a curve- first his

> muscles and vision, then GI issues, then seizures, then respiratory

> problems. Whenever things are going well another problem will crop

> up. Has anyone experienced this-not just with seizures?

>

[Guest guest]

,

Billy does not have any epileptic symptoms.

He does have the " one thing after another " cycle. They told us that

more body sytems would become involved as more time goes by. I think

the energy is just not enough to go around to the whole body. Also

sometimes you just hate to go to the doctor as they see something

after a break that you seeing him everyday don't see. They send you

to see the specialist and suprise! you have something else to add to

the list.

Hang in there! I know the okay what's next can switch between that

and panic and back so quickly that it makes you dizzy.

In the same boat as you,

Twana

>

> I was wondering if all mito kids are epileptic?

> I guess I'm concerned because any time gets one thing under

> control then another body system will throw him a curve- first his

> muscles and vision, then GI issues, then seizures, then respiratory

> problems. Whenever things are going well another problem will crop

> up. Has anyone experienced this-not just with seizures?

>

[Guest guest]

Dear ,

In my own experience, not all mito kids are epileptic. MY daughter, Leanna

has mito and is 7. She has a terminal prognosis similar to her older sister,

Samya's and yet has never had a seizure. Samya died at age 8 and a half of

mito and also never had a seizure, until the last 4 days of her life. The

last 4 days, she was brain dead and she had involuntary movement constantly

nonstop until she died.I do know that most kids with mito have seizures and

that was supposedly part of why samya was misdisagnosed all her life and

mito was never considered because of lack of seizure activity.

Blessings,

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Question about seizures

I was wondering if all mito kids are epileptic? My son has

microcephaly which means his brain/head stopped growing between 4-6

months of age. The docs think that a mitochondrial disorder could

have caused that. I know alot of kids with microcephaly have seizure

disorders but what about mito disorders itself?

I guess I'm asking to get an idea of what to expect. had his

first seizure around age 2(grand-mal type). It took awhile to get

the seizures under control but they finally were--at least for

awhile. He has been having more breakthroughs this year. had

his last breakthroughs of seizures last month. He has clusters of

them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-4

hours, have another seizure, sleep for 3-4 hours...you get the idea.

This pattern continues until we give him Diastat(rectal valium) which

knocks him out for the rest of the day. He'll then wake up 6 hours

later with no more seizures. He had one cluster of seizures a week

for 3 consecutive weeks.

I took him for a routine EEG at the hospital a few weeks ago. Chris

seemed perfectly fine and full of energy. But they consulted Chris's

neuro and then Chris(and Mommy) was admitted to the Epilepsy Center

for overnight observation. They had me freaked out because he was so

happy and bubbly and they were saying he was having seizures. To

keep the story short, they released us the next evening stating that

he wasn't having seizures. They said that his brain wave was

abnormal but apparently it WAS normal for him. Has anyone else had

this experience? I'm glad he's not having seizures but I'm still

concerned about the abnormal brain waves that no one has sufficiently

explained to me. I know his brain is small and he has severe

developmental delays but the docs can't explain why his pattern looks

the way it does.

I guess I'm concerned because any time gets one thing under

control then another body system will throw him a curve- first his

muscles and vision, then GI issues, then seizures, then respiratory

problems. Whenever things are going well another problem will crop

up. Has anyone experienced this-not just with seizures?

I'm not as frustrated as I might sound. I'm actually very calm about

things. A couple years ago I was highly frustrated but I've had to

learn to deal with things and accept them as they are. I'm just

trying to find out what to expect(If that's possible)

Sorry for the ramble. Time for more coffee:)

Blessings,

Please contact mito-owner with any problems or questions.

[Guest guest]

Dear ,

In my own experience, not all mito kids are epileptic. MY daughter, Leanna

has mito and is 7. She has a terminal prognosis similar to her older sister,

Samya's and yet has never had a seizure. Samya died at age 8 and a half of

mito and also never had a seizure, until the last 4 days of her life. The

last 4 days, she was brain dead and she had involuntary movement constantly

nonstop until she died.I do know that most kids with mito have seizures and

that was supposedly part of why samya was misdisagnosed all her life and

mito was never considered because of lack of seizure activity.

Blessings,

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Question about seizures

I was wondering if all mito kids are epileptic? My son has

microcephaly which means his brain/head stopped growing between 4-6

months of age. The docs think that a mitochondrial disorder could

have caused that. I know alot of kids with microcephaly have seizure

disorders but what about mito disorders itself?

I guess I'm asking to get an idea of what to expect. had his

first seizure around age 2(grand-mal type). It took awhile to get

the seizures under control but they finally were--at least for

awhile. He has been having more breakthroughs this year. had

his last breakthroughs of seizures last month. He has clusters of

them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-4

hours, have another seizure, sleep for 3-4 hours...you get the idea.

This pattern continues until we give him Diastat(rectal valium) which

knocks him out for the rest of the day. He'll then wake up 6 hours

later with no more seizures. He had one cluster of seizures a week

for 3 consecutive weeks.

I took him for a routine EEG at the hospital a few weeks ago. Chris

seemed perfectly fine and full of energy. But they consulted Chris's

neuro and then Chris(and Mommy) was admitted to the Epilepsy Center

for overnight observation. They had me freaked out because he was so

happy and bubbly and they were saying he was having seizures. To

keep the story short, they released us the next evening stating that

he wasn't having seizures. They said that his brain wave was

abnormal but apparently it WAS normal for him. Has anyone else had

this experience? I'm glad he's not having seizures but I'm still

concerned about the abnormal brain waves that no one has sufficiently

explained to me. I know his brain is small and he has severe

developmental delays but the docs can't explain why his pattern looks

the way it does.

I guess I'm concerned because any time gets one thing under

control then another body system will throw him a curve- first his

muscles and vision, then GI issues, then seizures, then respiratory

problems. Whenever things are going well another problem will crop

up. Has anyone experienced this-not just with seizures?

I'm not as frustrated as I might sound. I'm actually very calm about

things. A couple years ago I was highly frustrated but I've had to

learn to deal with things and accept them as they are. I'm just

trying to find out what to expect(If that's possible)

Sorry for the ramble. Time for more coffee:)

Blessings,

Please contact mito-owner with any problems or questions.

[Guest guest]

Hello

I have found playing Mozart k448

helps my daughter with seizures

along with tegretol & homoepathic medicine

Sue

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

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[Guest guest]

Hello

I have found playing Mozart k448

helps my daughter with seizures

along with tegretol & homoepathic medicine

Sue

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

Version: 7.0.269 / Virus Database: 265.4.1 - Release Date: 19/11/2004

[Guest guest]

My daughter was born with over-riding cranial plates and was diagnosed with

microcephaly at 10 weeks (following a CT showing cerebral atrophy)

She has a seizure disorder as a result.

Gaby has been on a ketogenic diet for both her seizures and her mito

disorder (PDH) for 6 years now. Even though she is not clinically fitting,

her EEG remains abnormal. (but greatly improved from pre diet EEG's)

We only treat what we can see, or what is a problem

ne, mum to Gaby (PDH) aged 9 years

[Guest guest]

My daughter was born with over-riding cranial plates and was diagnosed with

microcephaly at 10 weeks (following a CT showing cerebral atrophy)

She has a seizure disorder as a result.

Gaby has been on a ketogenic diet for both her seizures and her mito

disorder (PDH) for 6 years now. Even though she is not clinically fitting,

her EEG remains abnormal. (but greatly improved from pre diet EEG's)

We only treat what we can see, or what is a problem

ne, mum to Gaby (PDH) aged 9 years

[Guest guest]

Hi Twana,

Isn't it frustrating when you think your kid is making some progress

and then BAM another curve thrown at him. My son amazes me because

he just goes with the flow. If I were him I'd be so ticked off.

I hope both of our kids have a quiet and uneventful flu season.

Blessings,

>

> ,

> Billy does not have any epileptic symptoms.

> He does have the " one thing after another " cycle. They told us that

> more body sytems would become involved as more time goes by. I

think

> the energy is just not enough to go around to the whole body. Also

> sometimes you just hate to go to the doctor as they see something

> after a break that you seeing him everyday don't see. They send you

> to see the specialist and suprise! you have something else to add to

> the list.

> Hang in there! I know the okay what's next can switch between that

> and panic and back so quickly that it makes you dizzy.

> In the same boat as you,

> Twana

[Guest guest]

Hi Twana,

Isn't it frustrating when you think your kid is making some progress

and then BAM another curve thrown at him. My son amazes me because

he just goes with the flow. If I were him I'd be so ticked off.

I hope both of our kids have a quiet and uneventful flu season.

Blessings,

>

> ,

> Billy does not have any epileptic symptoms.

> He does have the " one thing after another " cycle. They told us that

> more body sytems would become involved as more time goes by. I

think

> the energy is just not enough to go around to the whole body. Also

> sometimes you just hate to go to the doctor as they see something

> after a break that you seeing him everyday don't see. They send you

> to see the specialist and suprise! you have something else to add to

> the list.

> Hang in there! I know the okay what's next can switch between that

> and panic and back so quickly that it makes you dizzy.

> In the same boat as you,

> Twana

[Guest guest]

Hi Suhad,

Thank you for sharing your experience with me. I'm deeply saddened

for your loss. I realize your daughter passed away a couple years

ago but it must still be heartbreaking. How is your other daughter

doing if I might ask? Thank you for your help

Blessings,

> Dear ,

>

> In my own experience, not all mito kids are epileptic. MY

daughter, Leanna

> has mito and is 7. She has a terminal prognosis similar to her

older sister,

> Samya's and yet has never had a seizure. Samya died at age 8 and a

half of

> mito and also never had a seizure, until the last 4 days of her

life. The

> last 4 days, she was brain dead and she had involuntary movement

constantly

> nonstop until she died.I do know that most kids with mito have

seizures and

> that was supposedly part of why samya was misdisagnosed all her

life and

> mito was never considered because of lack of seizure activity.

> Blessings,

>  

>  

> Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna

> with same disease.

> Samya's Memorial Site: www.samyahaddad.com/.org/.net

> Email: Suhad1970@s...

> Alt Email: Suhad@S...

> AiM Chat: Suhad1970

[Guest guest]

Hi Suhad,

Thank you for sharing your experience with me. I'm deeply saddened

for your loss. I realize your daughter passed away a couple years

ago but it must still be heartbreaking. How is your other daughter

doing if I might ask? Thank you for your help

Blessings,

> Dear ,

>

> In my own experience, not all mito kids are epileptic. MY

daughter, Leanna

> has mito and is 7. She has a terminal prognosis similar to her

older sister,

> Samya's and yet has never had a seizure. Samya died at age 8 and a

half of

> mito and also never had a seizure, until the last 4 days of her

life. The

> last 4 days, she was brain dead and she had involuntary movement

constantly

> nonstop until she died.I do know that most kids with mito have

seizures and

> that was supposedly part of why samya was misdisagnosed all her

life and

> mito was never considered because of lack of seizure activity.

> Blessings,

>  

>  

> Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna

> with same disease.

> Samya's Memorial Site: www.samyahaddad.com/.org/.net

> Email: Suhad1970@s...

> Alt Email: Suhad@S...

> AiM Chat: Suhad1970

[Guest guest]

Hi Sue,

Thanks for the suggestions. We've used Tegretol before and it

stopped being effective. He's now on Keppra & Lamictal for

seizures. He definitely loves Mozart though:)

Blessings,

> Hello

> I have found playing Mozart k448

> helps my daughter with seizures

> along with tegretol & homoepathic medicine

> Sue

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.269 / Virus Database: 265.4.1 - Release Date:

19/11/2004

[Guest guest]

Hi Sue,

Thanks for the suggestions. We've used Tegretol before and it

stopped being effective. He's now on Keppra & Lamictal for

seizures. He definitely loves Mozart though:)

Blessings,

> Hello

> I have found playing Mozart k448

> helps my daughter with seizures

> along with tegretol & homoepathic medicine

> Sue

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.269 / Virus Database: 265.4.1 - Release Date:

19/11/2004

[Guest guest]

Hi ne,

was born apparently " normal " but his brain stopped growing

between 4-6 months. His cranial plates starting overlapping & his

MRI also showed atrophy in the frontal lobe. might have been

placed on a ketogenic diet but he also developed GI problems. He's

now completely tube fed at the moment on Peptamen Jr. Maybe if we

can start him with oral feeds again then we can try a diet to help

with seizures. Thanks for your help

Blessings,

> My daughter was born with over-riding cranial plates and was

diagnosed with

> microcephaly at 10 weeks (following a CT showing cerebral atrophy)

> She has a seizure disorder as a result.

> Gaby has been on a ketogenic diet for both her seizures and her mito

> disorder (PDH) for 6 years now. Even though she is not clinically

fitting,

> her EEG remains abnormal. (but greatly improved from pre diet EEG's)

> We only treat what we can see, or what is a problem

>

> ne, mum to Gaby (PDH) aged 9 years

[Guest guest]

Hi ne,

was born apparently " normal " but his brain stopped growing

between 4-6 months. His cranial plates starting overlapping & his

MRI also showed atrophy in the frontal lobe. might have been

placed on a ketogenic diet but he also developed GI problems. He's

now completely tube fed at the moment on Peptamen Jr. Maybe if we

can start him with oral feeds again then we can try a diet to help

with seizures. Thanks for your help

Blessings,

> My daughter was born with over-riding cranial plates and was

diagnosed with

> microcephaly at 10 weeks (following a CT showing cerebral atrophy)

> She has a seizure disorder as a result.

> Gaby has been on a ketogenic diet for both her seizures and her mito

> disorder (PDH) for 6 years now. Even though she is not clinically

fitting,

> her EEG remains abnormal. (but greatly improved from pre diet EEG's)

> We only treat what we can see, or what is a problem

>

> ne, mum to Gaby (PDH) aged 9 years

[Guest guest]

,

My son Lucas 8.5 yrs of age has had an abnormal EEG since he first had one when he was 1 yr of age. He has never clinically had a seizure that we know of but he is on seizure meds for other things. Lucas has severe ataxia and his gross motor skills have improved with them. Our neurologist also thinks that it is highly likely he would develop seizures if not on seizure medication. He also has cortical visual impairment (visually can see but can not always mentally process what he sees. His vision seems to improve since the signals can get through better. We too have had body systems take their turns. The brain is the area that requires the most energy to function and that is why it is hit so hard.

HTH,

Loriannnu12002 wrote:

I was wondering if all mito kids are epileptic? My son has microcephaly which means his brain/head stopped growing between 4-6 months of age. The docs think that a mitochondrial disorder could have caused that. I know alot of kids with microcephaly have seizure disorders but what about mito disorders itself? I guess I'm asking to get an idea of what to expect. had his first seizure around age 2(grand-mal type). It took awhile to get the seizures under control but they finally were--at least for awhile. He has been having more breakthroughs this year. had his last breakthroughs of seizures last month. He has clusters of them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-4 hours, have another seizure, sleep for 3-4 hours...you get the idea. This pattern continues until we give him Diastat(rectal valium)

which knocks him out for the rest of the day. He'll then wake up 6 hours later with no more seizures. He had one cluster of seizures a week for 3 consecutive weeks.I took him for a routine EEG at the hospital a few weeks ago. seemed perfectly fine and full of energy. But they consulted Chris's neuro and then Chris(and Mommy) was admitted to the Epilepsy Center for overnight observation. They had me freaked out because he was so happy and bubbly and they were saying he was having seizures. To keep the story short, they released us the next evening stating that he wasn't having seizures. They said that his brain wave was abnormal but apparently it WAS normal for him. Has anyone else had this experience? I'm glad he's not having seizures but I'm still concerned about the abnormal brain waves that no one has sufficiently explained to me. I know his brain is small and he has severe developmental delays but the docs can't

explain why his pattern looks the way it does.I guess I'm concerned because any time gets one thing under control then another body system will throw him a curve- first his muscles and vision, then GI issues, then seizures, then respiratory problems. Whenever things are going well another problem will crop up. Has anyone experienced this-not just with seizures?I'm not as frustrated as I might sound. I'm actually very calm about things. A couple years ago I was highly frustrated but I've had to learn to deal with things and accept them as they are. I'm just trying to find out what to expect(If that's possible)Sorry for the ramble. Time for more coffee:)Blessings,

[Guest guest]

My sons was diagnosed with seizures at 11 months of age --he is now

almost 9. He also has microcephaly. He is profoundly cognitively

challenged. We just went through our second skin biopsy. The first

one done last year in Toronto showed he had PDH but when we tried to

verify the results in Cleveland Clinic it came back in the normal

range. We have been fighting seizures for a long time now. As

grows and develops his seizures get worse or the med's don't

seem to work as well over time. He started with petite mal seizures

and now has tonic clonic seizures with a couple of grand mal

seizures when things get really bad. Everytime we get any illness,

our seizure med's do not work as well and he starts having seizures,

ususally while sleeping. His balance also become off and he doesn't

eat as well. We are on quite a few med's for seizure control and

when we go for the EEG it still shows quite a bit of abnormal

activity -- not necessairly a full seizure. Our neuro's goal is to

try to keep the brain waves as near to normal as possible. The best

guess from the doctors is something went wrong while he was

developing in the womb -- his brain has all the parts but they do not

work together correctly causing the seizures and his brain tries to

correct the problem. We keep trying to correct the problem -- right

now I'm looking to try to find a doctor to administer a modified

atkin's diet since the Keogenic diet is so strict and he is already

limited in what he will tolerate to eat orally.

Hoefer (robert - almost 9, epilespy, microcephaly, proundly

cognitively delayed.)

>

> I was wondering if all mito kids are epileptic? My son has

> microcephaly which means his brain/head stopped growing between 4-6

> months of age. The docs think that a mitochondrial disorder could

> have caused that. I know alot of kids with microcephaly have

seizure

> disorders but what about mito disorders itself?

> I guess I'm asking to get an idea of what to expect. had his

> first seizure around age 2(grand-mal type). It took awhile to get

> the seizures under control but they finally were--at least for

> awhile. He has been having more breakthroughs this year. Chris

had

> his last breakthroughs of seizures last month. He has clusters of

> them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-4

> hours, have another seizure, sleep for 3-4 hours...you get the

idea.

> This pattern continues until we give him Diastat(rectal valium)

which

> knocks him out for the rest of the day. He'll then wake up 6 hours

> later with no more seizures. He had one cluster of seizures a week

> for 3 consecutive weeks.

> I took him for a routine EEG at the hospital a few weeks ago.

Chris

> seemed perfectly fine and full of energy. But they consulted

Chris's

> neuro and then Chris(and Mommy) was admitted to the Epilepsy Center

> for overnight observation. They had me freaked out because he was

so

> happy and bubbly and they were saying he was having seizures. To

> keep the story short, they released us the next evening stating

that

> he wasn't having seizures. They said that his brain wave was

> abnormal but apparently it WAS normal for him. Has anyone else had

> this experience? I'm glad he's not having seizures but I'm still

> concerned about the abnormal brain waves that no one has

sufficiently

> explained to me. I know his brain is small and he has severe

> developmental delays but the docs can't explain why his pattern

looks

> the way it does.

> I guess I'm concerned because any time gets one thing under

> control then another body system will throw him a curve- first his

> muscles and vision, then GI issues, then seizures, then respiratory

> problems. Whenever things are going well another problem will crop

> up. Has anyone experienced this-not just with seizures?

> I'm not as frustrated as I might sound. I'm actually very calm

about

> things. A couple years ago I was highly frustrated but I've had to

> learn to deal with things and accept them as they are. I'm just

> trying to find out what to expect(If that's possible)

> Sorry for the ramble. Time for more coffee:)

> Blessings,

>

[Guest guest]

,

I as well as all three of my kids have seizures and mito...we all

have a varity of seizure types that have changed over the years.

[Guest guest]

Thanks for the info. You all have been very helpful and I

greatly appreciate it.

Blessings,

> >

> > I was wondering if all mito kids are epileptic? My son has

> > microcephaly which means his brain/head stopped growing between 4-

6

> > months of age. The docs think that a mitochondrial disorder could

> > have caused that. I know alot of kids with microcephaly have

> seizure

> > disorders but what about mito disorders itself?

> > I guess I'm asking to get an idea of what to expect. had

his

> > first seizure around age 2(grand-mal type). It took awhile to

get

> > the seizures under control but they finally were--at least for

> > awhile. He has been having more breakthroughs this year. Chris

> had

> > his last breakthroughs of seizures last month. He has clusters

of

> > them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-

4

> > hours, have another seizure, sleep for 3-4 hours...you get the

> idea.

> > This pattern continues until we give him Diastat(rectal valium)

> which

> > knocks him out for the rest of the day. He'll then wake up 6

hours

> > later with no more seizures. He had one cluster of seizures a

week

> > for 3 consecutive weeks.

> > I took him for a routine EEG at the hospital a few weeks ago.

> Chris

> > seemed perfectly fine and full of energy. But they consulted

> Chris's

> > neuro and then Chris(and Mommy) was admitted to the Epilepsy

Center

> > for overnight observation. They had me freaked out because he

was

> so

> > happy and bubbly and they were saying he was having seizures. To

> > keep the story short, they released us the next evening stating

> that

> > he wasn't having seizures. They said that his brain wave was

> > abnormal but apparently it WAS normal for him. Has anyone else

had

> > this experience? I'm glad he's not having seizures but I'm still

> > concerned about the abnormal brain waves that no one has

> sufficiently

> > explained to me. I know his brain is small and he has severe

> > developmental delays but the docs can't explain why his pattern

> looks

> > the way it does.

> > I guess I'm concerned because any time gets one thing under

> > control then another body system will throw him a curve- first

his

> > muscles and vision, then GI issues, then seizures, then

respiratory

> > problems. Whenever things are going well another problem will

crop

> > up. Has anyone experienced this-not just with seizures?

> > I'm not as frustrated as I might sound. I'm actually very calm

> about

> > things. A couple years ago I was highly frustrated but I've had

to

> > learn to deal with things and accept them as they are. I'm just

> > trying to find out what to expect(If that's possible)

> > Sorry for the ramble. Time for more coffee:)

> > Blessings,

> >

[Guest guest]

Thanks for the info. You all have been very helpful and I

greatly appreciate it.

Blessings,

> >

> > I was wondering if all mito kids are epileptic? My son has

> > microcephaly which means his brain/head stopped growing between 4-

6

> > months of age. The docs think that a mitochondrial disorder could

> > have caused that. I know alot of kids with microcephaly have

> seizure

> > disorders but what about mito disorders itself?

> > I guess I'm asking to get an idea of what to expect. had

his

> > first seizure around age 2(grand-mal type). It took awhile to

get

> > the seizures under control but they finally were--at least for

> > awhile. He has been having more breakthroughs this year. Chris

> had

> > his last breakthroughs of seizures last month. He has clusters

of

> > them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-

4

> > hours, have another seizure, sleep for 3-4 hours...you get the

> idea.

> > This pattern continues until we give him Diastat(rectal valium)

> which

> > knocks him out for the rest of the day. He'll then wake up 6

hours

> > later with no more seizures. He had one cluster of seizures a

week

> > for 3 consecutive weeks.

> > I took him for a routine EEG at the hospital a few weeks ago.

> Chris

> > seemed perfectly fine and full of energy. But they consulted

> Chris's

> > neuro and then Chris(and Mommy) was admitted to the Epilepsy

Center

> > for overnight observation. They had me freaked out because he

was

> so

> > happy and bubbly and they were saying he was having seizures. To

> > keep the story short, they released us the next evening stating

> that

> > he wasn't having seizures. They said that his brain wave was

> > abnormal but apparently it WAS normal for him. Has anyone else

had

> > this experience? I'm glad he's not having seizures but I'm still

> > concerned about the abnormal brain waves that no one has

> sufficiently

> > explained to me. I know his brain is small and he has severe

> > developmental delays but the docs can't explain why his pattern

> looks

> > the way it does.

> > I guess I'm concerned because any time gets one thing under

> > control then another body system will throw him a curve- first

his

> > muscles and vision, then GI issues, then seizures, then

respiratory

> > problems. Whenever things are going well another problem will

crop

> > up. Has anyone experienced this-not just with seizures?

> > I'm not as frustrated as I might sound. I'm actually very calm

> about

> > things. A couple years ago I was highly frustrated but I've had

to

> > learn to deal with things and accept them as they are. I'm just

> > trying to find out what to expect(If that's possible)

> > Sorry for the ramble. Time for more coffee:)

> > Blessings,

> >

[Guest guest]

Thanks for the information

Blessings,

-who's severely behind in reading emails(and everything else)---

In Mito , " mitomomx3 " <MitomomX3@a...> wrote:

>

>

> ,

> I as well as all three of my kids have seizures and mito...we all

> have a varity of seizure types that have changed over the years.

>

[Guest guest]

Thanks for the information

Blessings,

-who's severely behind in reading emails(and everything else)---

In Mito , " mitomomx3 " <MitomomX3@a...> wrote:

>

>

> ,

> I as well as all three of my kids have seizures and mito...we all

> have a varity of seizure types that have changed over the years.

>