Re: Re: NEED HELP!!! VERY VERY CONFUSED!!!

[Guest guest]

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Debbi: when he was sick this summer, what were his symptoms? Think back... can

you relate it to something like a head injury,

exposure to something chemical, heavy metals, pesticides, molds, virus and

accident. Taking some drug or medication.. Be a detective and start looking

for clues. You will be his best hope for finding answers. He sounds to me like

he was exposed to something. People don't just start having seizures for no

reason at all. Most can relate it to some event and this is the start to

finding help.

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 4:00:05 AM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Hi ,

Well you did give me a whole new perspective to think about...I shall look into

that as well.Her genetic problem since birth is hyperinsulism(VERY LOW SUGARS)

and she did have major seizures because of that in the neonatal stage and slight

brain damage .She has mild development delays but she does go to kindergarten

and is doing quite well so we are not concerned about that.Now her sugars are

stabilized.So whenever she has a seiz we always check her sugars and they are

fine.

So she was on seizure meds from the very beginning but didnt have any

episodes.After 1 1/2 yrs and a change of meds she had once in 6 months.The

frequency just kept increasing after switching to Keppra (past more than a year)

and now its one episode a month!!I met another neuro last week who has asked me

to check for kidney functions(serum urea and creatinine) when she has a seizure.

I hope we get to the bottom of this soon.

One thing I do know is her intake of carbs and sugars have increased now but

unfortunately I just cannot reduce that as she is dependent on carbs to maintain

her sugars.Heres praying that we do find a solution ....

Arshiya

________________________________

From: <lindae321@...>

Sent: Fri, February 4, 2011 11:04:41 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Also how would you know if you are being affected by mercury??

________________________________

From: <lindae321@...>

Sent: Fri, February 4, 2011 11:04:41 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Mercury goes to your brain. It causes a myriad of neurological symptoms

including autism. o It comes from vaccines and dental fillings. this is just

something else you can explore as a possibility. Also Dr. said that

seizures were caused by ascaris which is a parasite that goes to the brain.

This is something else to look into since the baby was sick before the seizures

started.

there are so many possibilities. Deficiencies of minerals and protein.

I think your biggest clue is her illness before this whole thing started???

________________________________

From: khan arsh <arshiya4@...>

Sent: Fri, February 4, 2011 7:32:17 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Also how would you know if you are being affected by mercury??

________________________________

From: <lindae321@...>

Sent: Fri, February 4, 2011 11:04:41 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

you said the hyperinsulinimia ??? is genetic. does that mean her parents have

it? or was it just present at birth?

Is this a precursor of diabetes? don't diabetics sometimes have seizures? Ok

another source could be Dr. Hynman he has a whole protocol for insulin

resistance it consists of supplements and herbs.

Did you know that if mom has heavy metal contamination the baby will get it

through the placenta?

Your story about keppra does not surprise me. Other people have mentioned

that. look up keppra increases seizure frequency and see if something comes

up.

Start working with diet and supplement changes and see if you can decrease the

frequency and intensity of the seizures. Also protein is very important for the

brain. Read 's story. all about raw eggs and milk and her son's recovery.

Just carbs wont be good for baby in the long run.

________________________________

From: khan arsh <arshiya4@...>

Sent: Fri, February 4, 2011 7:30:54 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi ,

Well you did give me a whole new perspective to think about...I shall look into

that as well.Her genetic problem since birth is hyperinsulism(VERY LOW SUGARS)

and she did have major seizures because of that in the neonatal stage and slight

brain damage .She has mild development delays but she does go to kindergarten

and is doing quite well so we are not concerned about that.Now her sugars are

stabilized.So whenever she has a seiz we always check her sugars and they are

fine.

So she was on seizure meds from the very beginning but didnt have any

episodes.After 1 1/2 yrs and a change of meds she had once in 6 months.The

frequency just kept increasing after switching to Keppra (past more than a year)

and now its one episode a month!!I met another neuro last week who has asked me

to check for kidney functions(serum urea and creatinine) when she has a seizure.

I hope we get to the bottom of this soon.

One thing I do know is her intake of carbs and sugars have increased now but

unfortunately I just cannot reduce that as she is dependent on carbs to maintain

her sugars.Heres praying that we do find a solution ....

Arshiya

________________________________

From: <lindae321@...>

Sent: Fri, February 4, 2011 11:04:41 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

The name of the Dr. is Hyman. Have they done eeg to determine if they are

seizures or not? many people have been successful at decreasing, eliminating

and some even totally healing their brains. Some changed medications. Then

decreased it as the supplements started to work etc. You just started. Keep

looking and searching. Follow every lead and keep a journal especially when the

seizures come. everything .... what she eats, where she plays, what she

drinks. tv??? computer exposures??

get to the bottom on this insulin problem

E.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Hi ,

Thanx for the info...

Her hyperinsulism(HI) is genetic,my husband and I are both carriers of the gene

and our child has a 50% chance of having the disease.My older son is normal but

my daughter's pancreas was producing a looot of insulin from the time of

birth,the normal range being 0-10 hers was 176!!

She had 95% of her pancreas removed when she was a month old.In the HI group

that I'm on there are other kids too who suffer from epilepy in various degrees

and are on anti-seiz meds.Now her sugars are stable without any medication but

she is under the risk of diabetes later in life as she has only 5% pancreas

left.

With the diet the most I can do now is give her homecooked food and reduce the

junkfood.Also I'll make sure that she has proper protein in her diet.Thanx for

the help.Any other suggestions would be of great help too-my e-mail-

arshiya4@...

________________________________

From: <lindae321@...>

Sent: Sat, February 5, 2011 12:35:51 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

you said the hyperinsulinimia ??? is genetic. does that mean her parents have

it? or was it just present at birth?

Is this a precursor of diabetes? don't diabetics sometimes have seizures? Ok

another source could be Dr. Hynman he has a whole protocol for insulin

resistance it consists of supplements and herbs.

Did you know that if mom has heavy metal contamination the baby will get it

through the placenta?

Your story about keppra does not surprise me. Other people have mentioned

that. look up keppra increases seizure frequency and see if something comes

up.

Start working with diet and supplement changes and see if you can decrease the

frequency and intensity of the seizures. Also protein is very important for the

brain. Read 's story. all about raw eggs and milk and her son's recovery.

Just carbs wont be good for baby in the long run.

________________________________

From: khan arsh <arshiya4@...>

Sent: Fri, February 4, 2011 7:30:54 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi ,

Well you did give me a whole new perspective to think about...I shall look into

that as well.Her genetic problem since birth is hyperinsulism(VERY LOW SUGARS)

and she did have major seizures because of that in the neonatal stage and slight

brain damage .She has mild development delays but she does go to kindergarten

and is doing quite well so we are not concerned about that.Now her sugars are

stabilized.So whenever she has a seiz we always check her sugars and they are

fine.

So she was on seizure meds from the very beginning but didnt have any

episodes.After 1 1/2 yrs and a change of meds she had once in 6 months.The

frequency just kept increasing after switching to Keppra (past more than a year)

and now its one episode a month!!I met another neuro last week who has asked me

to check for kidney functions(serum urea and creatinine) when she has a seizure.

I hope we get to the bottom of this soon.

One thing I do know is her intake of carbs and sugars have increased now but

unfortunately I just cannot reduce that as she is dependent on carbs to maintain

her sugars.Heres praying that we do find a solution ....

Arshiya

________________________________

From: <lindae321@...>

Sent: Fri, February 4, 2011 11:04:41 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

Khan:

what is the longest that your daughter goes without a seizure?

I don't know very much about this illness but it is possible that you can

decrease her frequency and intensity if you

become very clear on exactly what triggers her seizures.

That is why I am suggesting detective work and a journal.

if you can start making connections between the seizures and what she eats or

does, you can start having control over frequency.

for example:

I know that if I eat dairy products today, tomorrow at wake up time my head will

start shaking.

I also know that some things make it worst. For example long exposures to

electromagnetic fields like tv and computers.

Other things can make it better or worst.

Your situation is starting already with insulin-glucose control trouble so that

seems to be a huge contributor.

But the question is... is she stuck with seizures just because her pancreas does

not work well or can you help her body make

what it needs, or get the nutrients it needs, or avoid the stuff that causes

that electrical misfire?

So write down everything she was doing the day of the seizure and the day

before.

Look for patterns. maybe she goes without a seizure for a week and one day it

happens. Do you think it happened just because??? No... something triggers

the seizures, so what is it? That is your challenge to find it. It could be

one thing,

or a combination of things or circumstances.

Start by keeping record for a few weeks of how many seizures she has per week

and start looking for patterns.

Then start testing some things like the dairy products. They cause seizures in

many people who are prone to seizures.

take it away from her for a couple of weeks, watch what happens, then give it to

her again. Write everything down.

Give her the vitamin b-50 it contains all of the b's. Give it in the morning

because it gives her energy.

Lack of sleep is another huge trigger of seizures. Deficiencies of magnesium

and zinc. Watch out for very spicy foods

and stimulants like coffee or chocolate. Make sure she drinks enough water

dehydration is another trigger.

good luck

linda

________________________________

From: khan arsh <arshiya4@...>

Sent: Mon, February 7, 2011 8:54:06 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi ,

Thanx for the info...

Her hyperinsulism(HI) is genetic,my husband and I are both carriers of the gene

and our child has a 50% chance of having the disease.My older son is normal but

my daughter's pancreas was producing a looot of insulin from the time of

birth,the normal range being 0-10 hers was 176!!

She had 95% of her pancreas removed when she was a month old.In the HI group

that I'm on there are other kids too who suffer from epilepy in various degrees

and are on anti-seiz meds.Now her sugars are stable without any medication but

she is under the risk of diabetes later in life as she has only 5% pancreas

left.

With the diet the most I can do now is give her homecooked food and reduce the

junkfood.Also I'll make sure that she has proper protein in her diet.Thanx for

the help.Any other suggestions would be of great help too-my e-mail-

arshiya4@...

________________________________

From: <lindae321@...>

Sent: Sat, February 5, 2011 12:35:51 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

you said the hyperinsulinimia ??? is genetic. does that mean her parents have

it? or was it just present at birth?

Is this a precursor of diabetes? don't diabetics sometimes have seizures? Ok

another source could be Dr. Hynman he has a whole protocol for insulin

resistance it consists of supplements and herbs.

Did you know that if mom has heavy metal contamination the baby will get it

through the placenta?

Your story about keppra does not surprise me. Other people have mentioned

that. look up keppra increases seizure frequency and see if something comes

up.

Start working with diet and supplement changes and see if you can decrease the

frequency and intensity of the seizures. Also protein is very important for the

brain. Read 's story. all about raw eggs and milk and her son's recovery.

Just carbs wont be good for baby in the long run.

________________________________

From: khan arsh <arshiya4@...>

Sent: Fri, February 4, 2011 7:30:54 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi ,

Well you did give me a whole new perspective to think about...I shall look into

that as well.Her genetic problem since birth is hyperinsulism(VERY LOW SUGARS)

and she did have major seizures because of that in the neonatal stage and slight

brain damage .She has mild development delays but she does go to kindergarten

and is doing quite well so we are not concerned about that.Now her sugars are

stabilized.So whenever she has a seiz we always check her sugars and they are

fine.

So she was on seizure meds from the very beginning but didnt have any

episodes.After 1 1/2 yrs and a change of meds she had once in 6 months.The

frequency just kept increasing after switching to Keppra (past more than a year)

and now its one episode a month!!I met another neuro last week who has asked me

to check for kidney functions(serum urea and creatinine) when she has a seizure.

I hope we get to the bottom of this soon.

One thing I do know is her intake of carbs and sugars have increased now but

unfortunately I just cannot reduce that as she is dependent on carbs to maintain

her sugars.Heres praying that we do find a solution ....

Arshiya

________________________________

From: <lindae321@...>

Sent: Fri, February 4, 2011 11:04:41 AM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Take her to a doctor that can test her for exposure to heavy metals or

pesticides. Not a regular MD.

It has to be someone familiar with toxic related neurological illness and

chelation. especially mercury exposure.

look up Dr. Batar.

Read my posts on triggers. Start keeping a journal of everything that she does

and eats starting with the the day before the seizure.

This will help you find what triggers her seizures. For the time being take

dairy products, and any stimulant away from her..

give her a good multivitamin, magnesium, vit b-12 and flax seed oil.

Where do you live?

Read 's story she just posted it a few days ago.

________________________________

From: khan arsh <arshiya4@...>

Sent: Wed, February 2, 2011 8:58:21 PM

Subject: Re: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Debbie,

Thanx for replying.

Her Blood Pressure is in the normal range.So is the heart rate and saturation.

The docs in the ER told me that it wasnt a seizure!!I dont know what to call

it.I'm still on the look out for a good neuro as I dont get answers for my

questions with the present one.

Currently shes on Keppra,sodium valporate (started 1 1/2 months back) and just

started with a mild dose of phenytoin.We are hoping at least the frequency

lessens as now shes having one episode a month.And because it lasts for a long

time we have to go to the ER and have a line put in and the injections which go

with it which is so very stressful for all of us as it takes a week for all the

sedation to come down!!I really wish at least we didnt have to visit the ER

everytime it happens.

Thanx for listening.

Arshiya

________________________________

From: Debbi <debbisprang@...>

Sent: Wed, February 2, 2011 5:30:05 PM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hello!

What does her blood pressure run? My son has seizures (9 years) and was

diagnosed with POTS syndrome just one month ago. He was very ill this

summer...still don't know what was wrong. Within one month he started

fainting...of course the neuro world called them drop seizures. But I knew that

there was a reason...

When he was admitted his blood pressure was 69/50...heart rate of 40 which would

dip to the 30's at night. His energy...was like a 90 year old at times.

Why I mention this some people have vomiting and nausea....along with tremors or

seizure like activity with POTS. Caleb never had grandmal seizures until his

illness this past summer. Most seizure medicines have never controlled him...

Debbi

dsprang@...

>

> Hi everyone,

>

> I would like to keep it short and just would like to know if anyone has the

>same type of seizures as my daughter(4 yrs) and what do you do when it does

>occur:

>

> 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

>

> 2.after 10 mins nausea and vomiting

>

> 3.after sometime slight tremors of the limbs on one side and does not respond

..

>

> Totally lasts for more than 1 hour.This is what I do:

>

> Give her 3 puffs of midazolam spray.If it does not subside within half an hour

>then rush to the ER.

>

> Some docs tell me not to take her to the ER if she does not have

>convulsions.But Im just worried as I cannot leave her for such a long time in

>this state.

>

> ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

>GIVE ME SOME INFORMATION ON WHAT TO DO.

>

> Thanx in advance.

>

> Ash.

>

[Guest guest]

look into drug use and also hormones can play a part in triggering seizures.

What has changed in his life that is triggering more frequent seizures.

________________________________

From: Pongo <tamamidoug@...>

Sent: Sat, February 5, 2011 12:21:46 AM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Hi Arshiya,

Do you think your daughter's seizure is related to your family disposition?

My son's seizure started 2 years ago(he is 10 years old). I don't know why it

started but it was very mild at that time, just once a year, but lately he has

more often as once a month. I have no idea why it increased but he seemed very

tired lately.

My husband's family has disposition of seizure(two of his sisters have seizure).

I have a feeling that it is a genetic tendency.

Tammy

> >

> > Hi everyone,

> >

> > I would like to keep it short and just would like to know if anyone has the

> >same type of seizures as my daughter(4 yrs) and what do you do when it does

> >occur:

> >

> > 1.Starts coughing ,eye balls rolled to one side but responds to surroundings

> >

> > 2.after 10 mins nausea and vomiting

> >

> > 3.after sometime slight tremors of the limbs on one side and does not

respond

>

> .

> >

> > Totally lasts for more than 1 hour.This is what I do:

> >

> > Give her 3 puffs of midazolam spray.If it does not subside within half an

>hour

>

>

> >then rush to the ER.

> >

> > Some docs tell me not to take her to the ER if she does not have

> >convulsions.But Im just worried as I cannot leave her for such a long time in

> >this state.

> >

> > ANYONE EXPERIENCING OR HAS ANY KNOWLEDGE OF SUCH SEIZURES PLEASE HELP ME AND

> >GIVE ME SOME INFORMATION ON WHAT TO DO.

> >

> > Thanx in advance.

> >

> > Ash.

> >

>

>

[Guest guest]

Hi Arnold,

No vaccinations.But her diet has changed a lot in the past one year.

For more than 3 years(shes 4.5 now) she survived only on pediasure as would eat

nothing else!!

After that she has started eating a lot of carbs(needed as she has hypoglycemia)

which also includes junk food .Maybe that too has played a major role in

increasing her seizures.I cant cut out carbs but I can try to give her healthier

options.

Arshiya

________________________________

From: " arnoldgore@... " <arnoldgore@...>

Sent: Sun, February 20, 2011 1:51:34 AM

Subject: [ ] Re: NEED HELP!!! VERY VERY CONFUSED!!!

Arshiya,

Has your daughter received any vaccinations recently?

Any chabes in her diet?

Arnold