Re: Hello! Starting diet on July 19th

[Guest guest]

Hi ne,

I was just about to ask if had a MAE diagnosis after reading your

message and seeing her seizure types, when I recognised your email address

and realised you joined the Doose group a few days ago

Starting the diet when on high dose depakote can def cause problems,

toxicity being one, and also there is a theory that depakote and the diet

work along similar channels, to do with fatty acid mechanisms, meaning that

in some kiddies they can 'compete' with each other, and there are quite few

who don't therefore attain full seizure control until the depakote is

weaned.

However - there are just as many who have been fine on the combination, it

is basically not a one size fits all thing, but something to keep in mind if

you have to go down the fnetuning road to get the seizures under control.

So basically, be on the alert mainly for toxicity, ie - increased

seizures, esp as med doses peak, sleepiness, vomiting, unsteadiness etc. And

perhaps forewarn your keto team that you have read of other children whose

med levels go too high when their metabolism switches into the state of

ketosis.

Problem achieving satisfactory ketone levels may be another symptom that

some depakote needs weaning.

If you do an archive search at the files section here, you will probably

come across quite a few older posts by using the search word depakote. Let

me know if you have any problems searching and I will see if I can help you

dig them out.

Hill ('s Mum in NZ)

PS - very glad the tegretol was ditched, as if she does have MAE, you will

know by now that it is a big no no for this syndronme - her paradoxical

seizure response to this med is one that many of us have witnessed in our

kiddies too

----- Original Message -----

> Hi Everyone,

>

> We're so glad to discover this group! We are starting our 4 year old

daughter, , on the ketogenic diet on Monday, July 19th, and would

appreciate any information to help us along the way.

>

> Our beautiful and healthy daughter, , had her first seizures in

Dec. 2003 with 2 T/Cs within 1 week of each other. She was started on

Tegretal but switched to Depakote in March 2004 due to onset of

myoclonic;atonic seizures (up to a dozen/day). 24 hour VEEG confirmed dx of

mixed generalized seizure disorder (intractable)--capturing multiple

clinical seizures and 40-50 subclinical seizures daily over a 3 day period.

Since that time she has experienced more T/Cs and most recently eyelid

myoclonic seizures--with the time between seizure activity diminishing in a

rather rapid pattern (longest seizure free period 20 days; now only 6 days).

And I suspect daily subclinical seizures (due to changes in her behavior and

bluish coloration of her eyelids and a recent EEG confirmed continuing spike

wave patterns). While you'd never notice with a casual glance, has

also been diagnosed with mild hypotonia, oral motor dyspraxia, a language

disorder, and sensory integration dysfunction and is currently in weekly OT

and SLT and is showing improvement.

>

> is on Depakote (1125mg/day), Keppra (125mg) and carnitine

supplements. She has moved beyond the therapeutic range with Depakote and

is beginning to experience more side affects--upset stomach, slight tremor

(more like a " jerkiness " ) when tired, and tends to sleep more (not

necessarily a bad thing-ha).

>

> Because she is on such a high dose of Depakote a day, I have been

closely reading any posts regarding the interaction of Depakote and the

diet. Any suggestions with things to watch for while initiating the diet

would be greatly appreciated.

>

> ne

[Guest guest]

Hi ne,

I was just about to ask if had a MAE diagnosis after reading your

message and seeing her seizure types, when I recognised your email address

and realised you joined the Doose group a few days ago

Starting the diet when on high dose depakote can def cause problems,

toxicity being one, and also there is a theory that depakote and the diet

work along similar channels, to do with fatty acid mechanisms, meaning that

in some kiddies they can 'compete' with each other, and there are quite few

who don't therefore attain full seizure control until the depakote is

weaned.

However - there are just as many who have been fine on the combination, it

is basically not a one size fits all thing, but something to keep in mind if

you have to go down the fnetuning road to get the seizures under control.

So basically, be on the alert mainly for toxicity, ie - increased

seizures, esp as med doses peak, sleepiness, vomiting, unsteadiness etc. And

perhaps forewarn your keto team that you have read of other children whose

med levels go too high when their metabolism switches into the state of

ketosis.

Problem achieving satisfactory ketone levels may be another symptom that

some depakote needs weaning.

If you do an archive search at the files section here, you will probably

come across quite a few older posts by using the search word depakote. Let

me know if you have any problems searching and I will see if I can help you

dig them out.

Hill ('s Mum in NZ)

PS - very glad the tegretol was ditched, as if she does have MAE, you will

know by now that it is a big no no for this syndronme - her paradoxical

seizure response to this med is one that many of us have witnessed in our

kiddies too

----- Original Message -----

> Hi Everyone,

>

> We're so glad to discover this group! We are starting our 4 year old

daughter, , on the ketogenic diet on Monday, July 19th, and would

appreciate any information to help us along the way.

>

> Our beautiful and healthy daughter, , had her first seizures in

Dec. 2003 with 2 T/Cs within 1 week of each other. She was started on

Tegretal but switched to Depakote in March 2004 due to onset of

myoclonic;atonic seizures (up to a dozen/day). 24 hour VEEG confirmed dx of

mixed generalized seizure disorder (intractable)--capturing multiple

clinical seizures and 40-50 subclinical seizures daily over a 3 day period.

Since that time she has experienced more T/Cs and most recently eyelid

myoclonic seizures--with the time between seizure activity diminishing in a

rather rapid pattern (longest seizure free period 20 days; now only 6 days).

And I suspect daily subclinical seizures (due to changes in her behavior and

bluish coloration of her eyelids and a recent EEG confirmed continuing spike

wave patterns). While you'd never notice with a casual glance, has

also been diagnosed with mild hypotonia, oral motor dyspraxia, a language

disorder, and sensory integration dysfunction and is currently in weekly OT

and SLT and is showing improvement.

>

> is on Depakote (1125mg/day), Keppra (125mg) and carnitine

supplements. She has moved beyond the therapeutic range with Depakote and

is beginning to experience more side affects--upset stomach, slight tremor

(more like a " jerkiness " ) when tired, and tends to sleep more (not

necessarily a bad thing-ha).

>

> Because she is on such a high dose of Depakote a day, I have been

closely reading any posts regarding the interaction of Depakote and the

diet. Any suggestions with things to watch for while initiating the diet

would be greatly appreciated.

>

> ne

[Guest guest]

Hi ne,

I was just about to ask if had a MAE diagnosis after reading your

message and seeing her seizure types, when I recognised your email address

and realised you joined the Doose group a few days ago

Starting the diet when on high dose depakote can def cause problems,

toxicity being one, and also there is a theory that depakote and the diet

work along similar channels, to do with fatty acid mechanisms, meaning that

in some kiddies they can 'compete' with each other, and there are quite few

who don't therefore attain full seizure control until the depakote is

weaned.

However - there are just as many who have been fine on the combination, it

is basically not a one size fits all thing, but something to keep in mind if

you have to go down the fnetuning road to get the seizures under control.

So basically, be on the alert mainly for toxicity, ie - increased

seizures, esp as med doses peak, sleepiness, vomiting, unsteadiness etc. And

perhaps forewarn your keto team that you have read of other children whose

med levels go too high when their metabolism switches into the state of

ketosis.

Problem achieving satisfactory ketone levels may be another symptom that

some depakote needs weaning.

If you do an archive search at the files section here, you will probably

come across quite a few older posts by using the search word depakote. Let

me know if you have any problems searching and I will see if I can help you

dig them out.

Hill ('s Mum in NZ)

PS - very glad the tegretol was ditched, as if she does have MAE, you will

know by now that it is a big no no for this syndronme - her paradoxical

seizure response to this med is one that many of us have witnessed in our

kiddies too

----- Original Message -----

> Hi Everyone,

>

> We're so glad to discover this group! We are starting our 4 year old

daughter, , on the ketogenic diet on Monday, July 19th, and would

appreciate any information to help us along the way.

>

> Our beautiful and healthy daughter, , had her first seizures in

Dec. 2003 with 2 T/Cs within 1 week of each other. She was started on

Tegretal but switched to Depakote in March 2004 due to onset of

myoclonic;atonic seizures (up to a dozen/day). 24 hour VEEG confirmed dx of

mixed generalized seizure disorder (intractable)--capturing multiple

clinical seizures and 40-50 subclinical seizures daily over a 3 day period.

Since that time she has experienced more T/Cs and most recently eyelid

myoclonic seizures--with the time between seizure activity diminishing in a

rather rapid pattern (longest seizure free period 20 days; now only 6 days).

And I suspect daily subclinical seizures (due to changes in her behavior and

bluish coloration of her eyelids and a recent EEG confirmed continuing spike

wave patterns). While you'd never notice with a casual glance, has

also been diagnosed with mild hypotonia, oral motor dyspraxia, a language

disorder, and sensory integration dysfunction and is currently in weekly OT

and SLT and is showing improvement.

>

> is on Depakote (1125mg/day), Keppra (125mg) and carnitine

supplements. She has moved beyond the therapeutic range with Depakote and

is beginning to experience more side affects--upset stomach, slight tremor

(more like a " jerkiness " ) when tired, and tends to sleep more (not

necessarily a bad thing-ha).

>

> Because she is on such a high dose of Depakote a day, I have been

closely reading any posts regarding the interaction of Depakote and the

diet. Any suggestions with things to watch for while initiating the diet

would be greatly appreciated.

>

> ne

[Guest guest]

You have found the right group for diet support. Sorry to hear of your

situation. Am pressed for time but a few thoughts,

Tegretol made my son's seizures worse. He too started with TC but Tegretol

brought out the myoclonic seizures. They went away with the diet when we

initiated.

We also had a positive diet experience w/ the TC, the length, severity and

frequency of his TC were reduced. Off all meds w/in 6 months.

My son was 1 at the time and was taking 9 Depakote capsules a day, which sounds

like a similar dosage. He was starving all the time and gaining weight too.

We shot for greater than theraputic levels because our neuro told us that some

kids require it. I would stop right where you are w/ that dosage. I would also

begin to wean that med first, when and if you start weaning. With the side

effects you are experiencing, I would suggest to your neuro that if the dose is

not helping the seizures and the side effects are apparent, then drop it back

down to a lower dose. Just wean slowly.

Where are you starting the diet? Sounds like you are well educated w/ what is

going on and I'll bet you will manage it well. Good luck to you and .

Barb Swoyer, Jake's mom, on the diet since 7/96 if you can believe it.....

Hello! Starting diet on July 19th

Hi Everyone,

We're so glad to discover this group! We are starting our 4 year old

daughter, , on the ketogenic diet on Monday, July 19th, and would

appreciate any information to help us along the way.

Our beautiful and healthy daughter, , had her first seizures in Dec. 2003

with 2 T/Cs within 1 week of each other. She was started on Tegretal but

switched to Depakote in March 2004 due to onset of myoclonic;atonic seizures (up

to a dozen/day). 24 hour VEEG confirmed dx of mixed generalized seizure

disorder (intractable)--capturing multiple clinical seizures and 40-50

subclinical seizures daily over a 3 day period. Since that time she has

experienced more T/Cs and most recently eyelid myoclonic seizures--with the time

between seizure activity diminishing in a rather rapid pattern (longest seizure

free period 20 days; now only 6 days). And I suspect daily subclinical seizures

(due to changes in her behavior and bluish coloration of her eyelids and a

recent EEG confirmed continuing spike wave patterns). While you'd never notice

with a casual glance, has also been diagnosed with mild hypotonia, oral

motor dyspraxia, a language disorder, and sensory integration dysfunction and is

currently in weekly OT and SLT and is showing improvement.

is on Depakote (1125mg/day), Keppra (125mg) and carnitine supplements.

She has moved beyond the therapeutic range with Depakote and is beginning to

experience more side affects--upset stomach, slight tremor (more like a

" jerkiness " ) when tired, and tends to sleep more (not necessarily a bad

thing-ha).

Because she is on such a high dose of Depakote a day, I have been closely

reading any posts regarding the interaction of Depakote and the diet. Any

suggestions with things to watch for while initiating the diet would be greatly

appreciated.

ne

[Guest guest]

You have found the right group for diet support. Sorry to hear of your

situation. Am pressed for time but a few thoughts,

Tegretol made my son's seizures worse. He too started with TC but Tegretol

brought out the myoclonic seizures. They went away with the diet when we

initiated.

We also had a positive diet experience w/ the TC, the length, severity and

frequency of his TC were reduced. Off all meds w/in 6 months.

My son was 1 at the time and was taking 9 Depakote capsules a day, which sounds

like a similar dosage. He was starving all the time and gaining weight too.

We shot for greater than theraputic levels because our neuro told us that some

kids require it. I would stop right where you are w/ that dosage. I would also

begin to wean that med first, when and if you start weaning. With the side

effects you are experiencing, I would suggest to your neuro that if the dose is

not helping the seizures and the side effects are apparent, then drop it back

down to a lower dose. Just wean slowly.

Where are you starting the diet? Sounds like you are well educated w/ what is

going on and I'll bet you will manage it well. Good luck to you and .

Barb Swoyer, Jake's mom, on the diet since 7/96 if you can believe it.....

Hello! Starting diet on July 19th

Hi Everyone,

We're so glad to discover this group! We are starting our 4 year old

daughter, , on the ketogenic diet on Monday, July 19th, and would

appreciate any information to help us along the way.

Our beautiful and healthy daughter, , had her first seizures in Dec. 2003

with 2 T/Cs within 1 week of each other. She was started on Tegretal but

switched to Depakote in March 2004 due to onset of myoclonic;atonic seizures (up

to a dozen/day). 24 hour VEEG confirmed dx of mixed generalized seizure

disorder (intractable)--capturing multiple clinical seizures and 40-50

subclinical seizures daily over a 3 day period. Since that time she has

experienced more T/Cs and most recently eyelid myoclonic seizures--with the time

between seizure activity diminishing in a rather rapid pattern (longest seizure

free period 20 days; now only 6 days). And I suspect daily subclinical seizures

(due to changes in her behavior and bluish coloration of her eyelids and a

recent EEG confirmed continuing spike wave patterns). While you'd never notice

with a casual glance, has also been diagnosed with mild hypotonia, oral

motor dyspraxia, a language disorder, and sensory integration dysfunction and is

currently in weekly OT and SLT and is showing improvement.

is on Depakote (1125mg/day), Keppra (125mg) and carnitine supplements.

She has moved beyond the therapeutic range with Depakote and is beginning to

experience more side affects--upset stomach, slight tremor (more like a

" jerkiness " ) when tired, and tends to sleep more (not necessarily a bad

thing-ha).

Because she is on such a high dose of Depakote a day, I have been closely

reading any posts regarding the interaction of Depakote and the diet. Any

suggestions with things to watch for while initiating the diet would be greatly

appreciated.

ne

[Guest guest]

You have found the right group for diet support. Sorry to hear of your

situation. Am pressed for time but a few thoughts,

Tegretol made my son's seizures worse. He too started with TC but Tegretol

brought out the myoclonic seizures. They went away with the diet when we

initiated.

We also had a positive diet experience w/ the TC, the length, severity and

frequency of his TC were reduced. Off all meds w/in 6 months.

My son was 1 at the time and was taking 9 Depakote capsules a day, which sounds

like a similar dosage. He was starving all the time and gaining weight too.

We shot for greater than theraputic levels because our neuro told us that some

kids require it. I would stop right where you are w/ that dosage. I would also

begin to wean that med first, when and if you start weaning. With the side

effects you are experiencing, I would suggest to your neuro that if the dose is

not helping the seizures and the side effects are apparent, then drop it back

down to a lower dose. Just wean slowly.

Where are you starting the diet? Sounds like you are well educated w/ what is

going on and I'll bet you will manage it well. Good luck to you and .

Barb Swoyer, Jake's mom, on the diet since 7/96 if you can believe it.....

Hello! Starting diet on July 19th

Hi Everyone,

We're so glad to discover this group! We are starting our 4 year old

daughter, , on the ketogenic diet on Monday, July 19th, and would

appreciate any information to help us along the way.

Our beautiful and healthy daughter, , had her first seizures in Dec. 2003

with 2 T/Cs within 1 week of each other. She was started on Tegretal but

switched to Depakote in March 2004 due to onset of myoclonic;atonic seizures (up

to a dozen/day). 24 hour VEEG confirmed dx of mixed generalized seizure

disorder (intractable)--capturing multiple clinical seizures and 40-50

subclinical seizures daily over a 3 day period. Since that time she has

experienced more T/Cs and most recently eyelid myoclonic seizures--with the time

between seizure activity diminishing in a rather rapid pattern (longest seizure

free period 20 days; now only 6 days). And I suspect daily subclinical seizures

(due to changes in her behavior and bluish coloration of her eyelids and a

recent EEG confirmed continuing spike wave patterns). While you'd never notice

with a casual glance, has also been diagnosed with mild hypotonia, oral

motor dyspraxia, a language disorder, and sensory integration dysfunction and is

currently in weekly OT and SLT and is showing improvement.

is on Depakote (1125mg/day), Keppra (125mg) and carnitine supplements.

She has moved beyond the therapeutic range with Depakote and is beginning to

experience more side affects--upset stomach, slight tremor (more like a

" jerkiness " ) when tired, and tends to sleep more (not necessarily a bad

thing-ha).

Because she is on such a high dose of Depakote a day, I have been closely

reading any posts regarding the interaction of Depakote and the diet. Any

suggestions with things to watch for while initiating the diet would be greatly

appreciated.

ne

[Guest guest]

Barb~

Thanks for your response! The diet since 1996?! Wow, talk about

perseverence!

I agree with you that we need to wean Depakote ASAP. is also

hungry all the time which she lets me know about! " Mommy, I'm

HUNGRY! " which causes me to cling to Dr. Freeman's description of

the " hunger paradox " in his book as I anticipate the unknown " tiny "

portions of the diet!

We live in Montana and have had to build our own keto team--ped nuero

in one town, dietician/nutrionist in another, us in yet another--

thank goodness for decent highways and email! Believe it or not,

we've been advocating for the diet for since her 1st seizure

and have been patiently (ha) waiting for the standard protocol of 2

medication failures to look at the diet as an option. We are

relieved to finally be at this point for .

And, we wanted all of you wonderful parents to know that we've chosen

you as our " keto coaches! " So, welcome to our team! In time, as we

gain knowledge, we hope to return the favor.

ne

> You have found the right group for diet support. Sorry to hear of

your situation. Am pressed for time but a few thoughts,

>

> Tegretol made my son's seizures worse. He too started with TC but

Tegretol brought out the myoclonic seizures. They went away with the

diet when we initiated.

>

> We also had a positive diet experience w/ the TC, the length,

severity and frequency of his TC were reduced. Off all meds w/in 6

months.

>

> My son was 1 at the time and was taking 9 Depakote capsules a day,

which sounds like a similar dosage. He was starving all the time and

gaining weight too. We shot for greater than theraputic levels

because our neuro told us that some kids require it. I would stop

right where you are w/ that dosage. I would also begin to wean that

med first, when and if you start weaning. With the side effects you

are experiencing, I would suggest to your neuro that if the dose is

not helping the seizures and the side effects are apparent, then drop

it back down to a lower dose. Just wean slowly.

>

> Where are you starting the diet? Sounds like you are well educated

w/ what is going on and I'll bet you will manage it well. Good luck

to you and .

>

> Barb Swoyer, Jake's mom, on the diet since 7/96 if you can believe

it.....

>

> Hello! Starting diet on July 19th

>

>

> Hi Everyone,

>

> We're so glad to discover this group! We are starting our 4 year

old daughter, , on the ketogenic diet on Monday, July 19th, and

would appreciate any information to help us along the way.

>

> Our beautiful and healthy daughter, , had her first seizures

in Dec. 2003 with 2 T/Cs within 1 week of each other. She was

started on Tegretal but switched to Depakote in March 2004 due to

onset of myoclonic;atonic seizures (up to a dozen/day). 24 hour VEEG

confirmed dx of mixed generalized seizure disorder (intractable)--

capturing multiple clinical seizures and 40-50 subclinical seizures

daily over a 3 day period. Since that time she has experienced more

T/Cs and most recently eyelid myoclonic seizures--with the time

between seizure activity diminishing in a rather rapid pattern

(longest seizure free period 20 days; now only 6 days). And I

suspect daily subclinical seizures (due to changes in her behavior

and bluish coloration of her eyelids and a recent EEG confirmed

continuing spike wave patterns). While you'd never notice with a

casual glance, has also been diagnosed with mild hypotonia,

oral motor dyspraxia, a language disorder, and sensory integration

dysfunction and is currently in weekly OT and SLT and is showing

improvement.

>

> is on Depakote (1125mg/day), Keppra (125mg) and carnitine

supplements. She has moved beyond the therapeutic range with

Depakote and is beginning to experience more side affects--upset

stomach, slight tremor (more like a " jerkiness " ) when tired, and

tends to sleep more (not necessarily a bad thing-ha).

>

> Because she is on such a high dose of Depakote a day, I have been

closely reading any posts regarding the interaction of Depakote and

the diet. Any suggestions with things to watch for while initiating

the diet would be greatly appreciated.

>

> ne

>

>

>