Re: Seizures - Luky's story

[Guest guest]

In a message dated 2/8/2004 3:56:32 PM Eastern Standard Time,

kruchko@... writes:

Sent: Sunday, February 08, 2004 12:48 PM

Subject: Seizures - Luky's story

02/04/04

My son, , 5 yrs old (Dec8,98) which has CP due to PVL, g-tube

(hopefully on the way out) had a seizure for the 1st time on Sunday night while

he was

sleeping. I was not going in that night to give him his usual 400 cal

supplement bc he had eaten so well by mouth that day but I did anyway around

10pm (I

last saw him at 8:45pm). I saw him lying on his side, jerking mildly and he

had blood around his mouth and alot of saliva around his face. He was also

extremely pale. I screamed for my husband and he picked him up and tried to

jerk him out of this stupor also trying to take out what he thought was

something

he might of been choking on. At this point is turning blue and

purple. (Unfortunately, my husband and I had no clue what to do with someone

having a seizure, boy did we get a lesson.) Luckily the 911 person I was

talking

to finally told us what to do (very simply put him on his side and make sure he

did not get hurt)and he slowly came out of his seizure as the paramedics got

to our house. The blood in his mouth was because he bit his tongue and his

lip. The seizure lasted with us about 5 min. but we do not have any idea how

long he was seizing before I walked in the room. After the seizure and while

still in the hospital was very irritable didn't want anyone messing with

him and when he tried to sleep, I lifted his eyelid and saw his eyes jerking

back and forth. I finally saw my son come back to life when he was in the

x-ray room and asked me " Where am I, mommy? " I breathed at last (this was about

1.1/2 hrs after). Of course I started questioning him on everything that

happened that night prior to the seizure and he was right on target on

everything.

I cannot relate to all of you the fear inside of me and my husband. Of the

5 years of things we've gone through this is going to top all of them.

My question to all you are the following: That night before we left the

hospital they wanted to put him on trileptal and we said no. We want to wait to

see the neurologist for EEG and MRI (our appt is tomorrow at 2:45pm). We do

have the Diastat just in case another seizure should start. I've heard some of

you talk about seizure meds before and I know you all have said there are some

side effects to them. Which is the best to start with? Does he have to

start with any? From what I described was this a Grand Mal seizure? Now that

he

had this one, how long before I see the next one (I'm praying I won't)? Is

there any equipment besides a baby monitor or me sleeping with my son would

alert me of him having a seizure? This is by far our biggest fear. Could HBOT

help to prevent future seizures? We've done about 150 in the past (about 1.5yrs

ago) and he did amazing. His cranial sacral doc said to request a calcium

count as sometimes when calcium is too low this could cause a seizure. Also

we've always heard if he doesn't get a seizure by 5 he probably will never get

one--guess not.

I have to tell you also that is his twin brother and he saw us walk

in at 4:30am (God only knows why he got up at that time) and asked us where we

were and we told him that got a little sick so we took him to the

hospital. Nothing more, nothing less and he went to sleep. The next day when

he

got home from school he came running to and the first thing out of

his mouth was, " why was your head shaking last night? " (Nobody made this

description to him and they sleep in separate bedrooms) and 's

response to him was, " I had an avalanche going on in my head " and then said to

" It was not a little one it was a big avalanche. " This is my son's

description of what went on. I've tried to ask him more but I cannot get

anything

else from him. I know he knows about earthquakes, volcanoes, avalanche because

my boys both live for Rescue Heroes these days (they have many videos). Could

have felt something? Anything you guys can give me will be more than

appreciated.

Thanks a mil

Luky, Mom to & 5 yrs old

02/05/04 Response to Luky:

Luky

I am new to the list but can give you the following advice since my 8y old

used to suffer from Partial seizures but we did find quite an unconventional

cure for it. First of all it sounds like a grand mal that had. You can

go and read up on : www.epilepsy.com, a good site that tells you about the

different seizures and what to look for.

On other lists that I am on people say a lot of good things about Lamictal

especially because it does not have the bad side effects on the liver that a lot

of the other medications have. You do have to watch him for a rash and if

that appears you have to stop the medication immediately. A lot of the other

medications for epilepsy do have an effect of supressing brain function whereas

I believe Lamictal have the opposite effect.

We use a product called DMG (Dimethylglycine) made by a company called Solal.

It is a natural product and it worked for Roald, it actually stopped his

seizures completely and he has been 9 months seizure free since we started

giving

him 200mg once per day. You can check it out on their web-page at :

www.solaltech.com

You might have to look for a local supplier and maybe you can search under

DMG or the full name as above for one.

I do hope that you get it sorted out soon.

Regards

Elna (mother of Roald, ND Oct 97, 8y old)

02/05/04 Response to Luky:

Dear Luky, This is an e-mail from another list that I had saved. When it

comes to Calcium there must be a balance and administering Calcium only may make

a magnesium deficiency worse. You can sign-up for the site I got this from at

the bottom. Also there was another email from someone on this list that has

figured out how exactly to handle each seizure with rubbing something on the

back of her son's neck. I didn't save that one.

As for the twins communication when they were in different rooms - there is

nothing strange about that. The strangest thing is that this is not common

place.

[Guest guest]

After 8 years of dealing with seizures with our 11 year old son, I would be

hesitant to start med's right away if this was his first ever seizure. If

they gave you Diastat, you at least know you can fall back on it if

necessary during another seizure. Most of the med's have side effects of

some kind and everyone reacts differently to them.

Did they find any reason for the seizure? Fever, illness, ect?

There are different meds for different seizure types and one of the most

important things they need to figure out is the seizure type, so they can

match the medication to it (if you decide to start meds)

We have a monitor in our sons room and can hear him start to seize during

the night, which is the only time he has them - 3 - 6am.

Our son went 4 months after his first seizure before he had another

unprovoked seizure, which is when we started meds. Do your research, ask

questions and learn seizure first aid for the whole family so it is not as

scary if he has another.

Good luck

Jill

Seizures - Luky's story

02/04/04

My son, , 5 yrs old (Dec8,98) which has CP due to PVL, g-tube

(hopefully on the way out) had a seizure for the 1st time on Sunday night

while he was

sleeping. I was not going in that night to give him his usual 400 cal

supplement bc he had eaten so well by mouth that day but I did anyway around

10pm (I

last saw him at 8:45pm). I saw him lying on his side, jerking mildly and he

had blood around his mouth and alot of saliva around his face. He was also

extremely pale. I screamed for my husband and he picked him up and tried to

jerk him out of this stupor also trying to take out what he thought was

something

he might of been choking on. At this point is turning blue and

purple. (Unfortunately, my husband and I had no clue what to do with

someone

having a seizure, boy did we get a lesson.) Luckily the 911 person I was

talking

to finally told us what to do (very simply put him on his side and make sure

he

did not get hurt)and he slowly came out of his seizure as the paramedics got

to our house. The blood in his mouth was because he bit his tongue and his

lip. The seizure lasted with us about 5 min. but we do not have any idea

how

long he was seizing before I walked in the room. After the seizure and

while

still in the hospital was very irritable didn't want anyone messing

with

him and when he tried to sleep, I lifted his eyelid and saw his eyes jerking

back and forth. I finally saw my son come back to life when he was in the

x-ray room and asked me " Where am I, mommy? " I breathed at last (this was

about

1.1/2 hrs after). Of course I started questioning him on everything that

happened that night prior to the seizure and he was right on target on

everything.

I cannot relate to all of you the fear inside of me and my husband. Of the

5 years of things we've gone through this is going to top all of them.

My question to all you are the following: That night before we left the

hospital they wanted to put him on trileptal and we said no. We want to

wait to

see the neurologist for EEG and MRI (our appt is tomorrow at 2:45pm). We do

have the Diastat just in case another seizure should start. I've heard some

of

you talk about seizure meds before and I know you all have said there are

some

side effects to them. Which is the best to start with? Does he have to

start with any? From what I described was this a Grand Mal seizure? Now

that he

had this one, how long before I see the next one (I'm praying I won't)? Is

there any equipment besides a baby monitor or me sleeping with my son would

alert me of him having a seizure? This is by far our biggest fear. Could

HBOT

help to prevent future seizures? We've done about 150 in the past (about

1.5yrs

ago) and he did amazing. His cranial sacral doc said to request a calcium

count as sometimes when calcium is too low this could cause a seizure. Also

we've always heard if he doesn't get a seizure by 5 he probably will never

get

one--guess not.

I have to tell you also that is his twin brother and he saw us walk

in at 4:30am (God only knows why he got up at that time) and asked us where

we

were and we told him that got a little sick so we took him to the

hospital. Nothing more, nothing less and he went to sleep. The next day

when he

got home from school he came running to and the first thing out of

his mouth was, " why was your head shaking last night? " (Nobody made

this

description to him and they sleep in separate bedrooms) and 's

response to him was, " I had an avalanche going on in my head " and then said

to

" It was not a little one it was a big avalanche. " This is my son's

description of what went on. I've tried to ask him more but I cannot get

anything

else from him. I know he knows about earthquakes, volcanoes, avalanche

because

my boys both live for Rescue Heroes these days (they have many videos).

Could

have felt something? Anything you guys can give me will be more

than

appreciated.

Thanks a mil

Luky, Mom to & 5 yrs old

02/05/04 Response to Luky:

Luky

I am new to the list but can give you the following advice since my 8y old

used to suffer from Partial seizures but we did find quite an unconventional

cure for it. First of all it sounds like a grand mal that had. You

can

go and read up on : www.epilepsy.com, a good site that tells you about the

different seizures and what to look for.

On other lists that I am on people say a lot of good things about Lamictal

especially because it does not have the bad side effects on the liver that a

lot

of the other medications have. You do have to watch him for a rash and if

that appears you have to stop the medication immediately. A lot of the

other

medications for epilepsy do have an effect of supressing brain function

whereas

I believe Lamictal have the opposite effect.

We use a product called DMG (Dimethylglycine) made by a company called

Solal.

It is a natural product and it worked for Roald, it actually stopped his

seizures completely and he has been 9 months seizure free since we started

giving

him 200mg once per day. You can check it out on their web-page at :

www.solaltech.com

You might have to look for a local supplier and maybe you can search under

DMG or the full name as above for one.

I do hope that you get it sorted out soon.

Regards

Elna (mother of Roald, ND Oct 97, 8y old)

02/05/04 Response to Luky:

Dear Luky, This is an e-mail from another list that I had saved. When it

comes to Calcium there must be a balance and administering Calcium only may

make

a magnesium deficiency worse. You can sign-up for the site I got this from

at

the bottom. Also there was another email from someone on this list that has

figured out how exactly to handle each seizure with rubbing something on the

back of her son's neck. I didn't save that one.

As for the twins communication when they were in different rooms - there is

nothing strange about that. The strangest thing is that this is not common

place.

[Guest guest]

JIL WHAT IS YOUR SON'S NAME? I'LL PUT HIMON MY PRAYER LIST.MAY GOD BLESS

YOU,MARK HOGUE

Jill <wtplvr1@...> wrote:After 8 years of dealing with seizures with

our 11 year old son, I would be

hesitant to start med's right away if this was his first ever seizure. If

they gave you Diastat, you at least know you can fall back on it if

necessary during another seizure. Most of the med's have side effects of

some kind and everyone reacts differently to them.

Did they find any reason for the seizure? Fever, illness, ect?

There are different meds for different seizure types and one of the most

important things they need to figure out is the seizure type, so they can

match the medication to it (if you decide to start meds)

We have a monitor in our sons room and can hear him start to seize during

the night, which is the only time he has them - 3 - 6am.

Our son went 4 months after his first seizure before he had another

unprovoked seizure, which is when we started meds. Do your research, ask

questions and learn seizure first aid for the whole family so it is not as

scary if he has another.

Good luck

Jill

Seizures - Luky's story

02/04/04

My son, , 5 yrs old (Dec8,98) which has CP due to PVL, g-tube

(hopefully on the way out) had a seizure for the 1st time on Sunday night

while he was

sleeping. I was not going in that night to give him his usual 400 cal

supplement bc he had eaten so well by mouth that day but I did anyway around

10pm (I

last saw him at 8:45pm). I saw him lying on his side, jerking mildly and he

had blood around his mouth and alot of saliva around his face. He was also

extremely pale. I screamed for my husband and he picked him up and tried to

jerk him out of this stupor also trying to take out what he thought was

something

he might of been choking on. At this point is turning blue and

purple. (Unfortunately, my husband and I had no clue what to do with

someone

having a seizure, boy did we get a lesson.) Luckily the 911 person I was

talking

to finally told us what to do (very simply put him on his side and make sure

he

did not get hurt)and he slowly came out of his seizure as the paramedics got

to our house. The blood in his mouth was because he bit his tongue and his

lip. The seizure lasted with us about 5 min. but we do not have any idea

how

long he was seizing before I walked in the room. After the seizure and

while

still in the hospital was very irritable didn't want anyone messing

with

him and when he tried to sleep, I lifted his eyelid and saw his eyes jerking

back and forth. I finally saw my son come back to life when he was in the

x-ray room and asked me " Where am I, mommy? " I breathed at last (this was

about

1.1/2 hrs after). Of course I started questioning him on everything that

happened that night prior to the seizure and he was right on target on

everything.

I cannot relate to all of you the fear inside of me and my husband. Of the

5 years of things we've gone through this is going to top all of them.

My question to all you are the following: That night before we left the

hospital they wanted to put him on trileptal and we said no. We want to

wait to

see the neurologist for EEG and MRI (our appt is tomorrow at 2:45pm). We do

have the Diastat just in case another seizure should start. I've heard some

of

you talk about seizure meds before and I know you all have said there are

some

side effects to them. Which is the best to start with? Does he have to

start with any? From what I described was this a Grand Mal seizure? Now

that he

had this one, how long before I see the next one (I'm praying I won't)? Is

there any equipment besides a baby monitor or me sleeping with my son would

alert me of him having a seizure? This is by far our biggest fear. Could

HBOT

help to prevent future seizures? We've done about 150 in the past (about

1.5yrs

ago) and he did amazing. His cranial sacral doc said to request a calcium

count as sometimes when calcium is too low this could cause a seizure. Also

we've always heard if he doesn't get a seizure by 5 he probably will never

get

one--guess not.

I have to tell you also that is his twin brother and he saw us walk

in at 4:30am (God only knows why he got up at that time) and asked us where

we

were and we told him that got a little sick so we took him to the

hospital. Nothing more, nothing less and he went to sleep. The next day

when he

got home from school he came running to and the first thing out of

his mouth was, " why was your head shaking last night? " (Nobody made

this

description to him and they sleep in separate bedrooms) and 's

response to him was, " I had an avalanche going on in my head " and then said

to

" It was not a little one it was a big avalanche. " This is my son's

description of what went on. I've tried to ask him more but I cannot get

anything

else from him. I know he knows about earthquakes, volcanoes, avalanche

because

my boys both live for Rescue Heroes these days (they have many videos).

Could

have felt something? Anything you guys can give me will be more

than

appreciated.

Thanks a mil

Luky, Mom to & 5 yrs old

02/05/04 Response to Luky:

Luky

I am new to the list but can give you the following advice since my 8y old

used to suffer from Partial seizures but we did find quite an unconventional

cure for it. First of all it sounds like a grand mal that had. You

can

go and read up on : www.epilepsy.com, a good site that tells you about the

different seizures and what to look for.

On other lists that I am on people say a lot of good things about Lamictal

especially because it does not have the bad side effects on the liver that a

lot

of the other medications have. You do have to watch him for a rash and if

that appears you have to stop the medication immediately. A lot of the

other

medications for epilepsy do have an effect of supressing brain function

whereas

I believe Lamictal have the opposite effect.

We use a product called DMG (Dimethylglycine) made by a company called

Solal.

It is a natural product and it worked for Roald, it actually stopped his

seizures completely and he has been 9 months seizure free since we started

giving

him 200mg once per day. You can check it out on their web-page at :

www.solaltech.com

You might have to look for a local supplier and maybe you can search under

DMG or the full name as above for one.

I do hope that you get it sorted out soon.

Regards

Elna (mother of Roald, ND Oct 97, 8y old)

02/05/04 Response to Luky:

Dear Luky, This is an e-mail from another list that I had saved. When it

comes to Calcium there must be a balance and administering Calcium only may

make

a magnesium deficiency worse. You can sign-up for the site I got this from

at

the bottom. Also there was another email from someone on this list that has

figured out how exactly to handle each seizure with rubbing something on the

back of her son's neck. I didn't save that one.

As for the twins communication when they were in different rooms - there is

nothing strange about that. The strangest thing is that this is not common

place.

[Guest guest]

Jill,

I agree with you, my daughter didn't have another seizure until 10 months

later after her very first and we also didn't start meds until then.

Grace

On Mon, 9 Feb 2004 13:06:58 -0800 " Jill " <wtplvr1@...> writes:

> After 8 years of dealing with seizures with our 11 year old son, I

> would be

> hesitant to start med's right away if this was his first ever

> seizure. If

> they gave you Diastat, you at least know you can fall back on it if

> necessary during another seizure. Most of the med's have side

> effects of

> some kind and everyone reacts differently to them.

> Did they find any reason for the seizure? Fever, illness, ect?

> There are different meds for different seizure types and one of the

> most

> important things they need to figure out is the seizure type, so

> they can

> match the medication to it (if you decide to start meds)

> We have a monitor in our sons room and can hear him start to seize

> during

> the night, which is the only time he has them - 3 - 6am.

> Our son went 4 months after his first seizure before he had another

> unprovoked seizure, which is when we started meds. Do your

> research, ask

> questions and learn seizure first aid for the whole family so it is

> not as

> scary if he has another.

> Good luck

> Jill

>

>

> Seizures - Luky's story

>

>

>

>

> 02/04/04

> My son, , 5 yrs old (Dec8,98) which has CP due to PVL, g-tube

>

> (hopefully on the way out) had a seizure for the 1st time on Sunday

> night

> while he was

> sleeping. I was not going in that night to give him his usual 400

> cal

> ment bc he had eaten so well by mouth that day but I did anyway

> around

> 10pm (I

> last saw him at 8:45pm). I saw him lying on his side, jerking

> mildly and he

>

> had blood around his mouth and alot of saliva around his face. He

> was also

> extremely pale. I screamed for my husband and he picked him up and

> tried to

>

> jerk him out of this stupor also trying to take out what he thought

> was

> something

> he might of been choking on. At this point is turning blue

> and

> purple. (Unfortunately, my husband and I had no clue what to do

> with

> someone

> having a seizure, boy did we get a lesson.) Luckily the 911 person

> I was

> talking

> to finally told us what to do (very simply put him on his side and

> make sure

> he

> did not get hurt)and he slowly came out of his seizure as the

> paramedics got

>

> to our house. The blood in his mouth was because he bit his tongue

> and his

> lip. The seizure lasted with us about 5 min. but we do not have any

> idea

> how

> long he was seizing before I walked in the room. After the seizure

> and

> while

> still in the hospital was very irritable didn't want anyone

> messing

> with

> him and when he tried to sleep, I lifted his eyelid and saw his eyes

> jerking

>

> back and forth. I finally saw my son come back to life when he was

> in the

> x-ray room and asked me " Where am I, mommy? " I breathed at last

> (this was

> about

> 1.1/2 hrs after). Of course I started questioning him on everything

> that

> happened that night prior to the seizure and he was right on target

> on

> everything.

> I cannot relate to all of you the fear inside of me and my husband.

> Of the

>

> 5 years of things we've gone through this is going to top all of

> them.

>

> My question to all you are the following: That night before we left

> the

> hospital they wanted to put him on trileptal and we said no. We

> want to

> wait to

> see the neurologist for EEG and MRI (our appt is tomorrow at

> 2:45pm). We do

>

> have the Diastat just in case another seizure should start. I've

> heard some

> of

> you talk about seizure meds before and I know you all have said

> there are

> some

> side effects to them. Which is the best to start with? Does he

> have to

> start with any? From what I described was this a Grand Mal seizure?

> Now

> that he

> had this one, how long before I see the next one (I'm praying I

> won't)? Is

> there any equipment besides a baby monitor or me sleeping with my

> son would

> alert me of him having a seizure? This is by far our biggest fear.

> Could

> HBOT

> help to prevent future seizures? We've done about 150 in the past

> (about

> 1.5yrs

> ago) and he did amazing. His cranial sacral doc said to request a

> calcium

> count as sometimes when calcium is too low this could cause a

> seizure. Also

>

> we've always heard if he doesn't get a seizure by 5 he probably will

> never

> get

> one--guess not.

>

> I have to tell you also that is his twin brother and he saw

> us walk

>

> in at 4:30am (God only knows why he got up at that time) and asked

> us where

> we

> were and we told him that got a little sick so we took him

> to the

> hospital. Nothing more, nothing less and he went to sleep. The

> next day

> when he

> got home from school he came running to and the first thing

> out of

> his mouth was, " why was your head shaking last night? "

> (Nobody made

> this

> description to him and they sleep in separate bedrooms) and

> 's

> response to him was, " I had an avalanche going on in my head " and

> then said

> to

> " It was not a little one it was a big avalanche. " This is

> my son's

>

> description of what went on. I've tried to ask him more but I

> cannot get

> anything

> else from him. I know he knows about earthquakes, volcanoes,

> avalanche

> because

> my boys both live for Rescue Heroes these days (they have many

> videos).

> Could

> have felt something? Anything you guys can give me will be

> more

> than

> appreciated.

> Thanks a mil

> Luky, Mom to & 5 yrs old

>

>

>

> 02/05/04 Response to Luky:

> Luky

> I am new to the list but can give you the following advice since my

> 8y old

> used to suffer from Partial seizures but we did find quite an

> unconventional

>

> cure for it. First of all it sounds like a grand mal that

> had. You

> can

> go and read up on : www.epilepsy.com, a good site that tells you

> about the

> different seizures and what to look for.

> On other lists that I am on people say a lot of good things about

> Lamictal

> especially because it does not have the bad side effects on the

> liver that a

> lot

> of the other medications have. You do have to watch him for a rash

> and if

> that appears you have to stop the medication immediately. A lot of

> the

> other

> medications for epilepsy do have an effect of supressing brain

> function

> whereas

> I believe Lamictal have the opposite effect.

> We use a product called DMG (Dimethylglycine) made by a company

> called

> Solal.

> It is a natural product and it worked for Roald, it actually

> stopped his

> seizures completely and he has been 9 months seizure free since we

> started

> giving

> him 200mg once per day. You can check it out on their web-page at :

>

> www.solaltech.com

> You might have to look for a local supplier and maybe you can search

> under

> DMG or the full name as above for one.

> I do hope that you get it sorted out soon.

> Regards

> Elna (mother of Roald, ND Oct 97, 8y old)

>

>

>

> 02/05/04 Response to Luky:

> Dear Luky, This is an e-mail from another list that I had saved.

> When it

> comes to Calcium there must be a balance and administering Calcium

> only may

> make

> a magnesium deficiency worse. You can sign-up for the site I got

> this from

> at

> the bottom. Also there was another email from someone on this list

> that has

>

> figured out how exactly to handle each seizure with rubbing

> something on the

>

> back of her son's neck. I didn't save that one.

> As for the twins communication when they were in different rooms -

> there is

> nothing strange about that. The strangest thing is that this is not

> common

> place.

>

>

>