Re: just checking in...Tina-MAE

[Guest guest]

Yep, tegretol saw the drops come thick and fast with , also put him in

NCS which we didn't actually realise till the ped epi in Wellington put him on

video EEG. I don''t know of one Doose kiddie trialled on tegretol (so that would

include trileptal) who hasn't had this reaction - part of the scary thing about

MAE - if there's a paradoxical seizure response to a med to be had - looks like

they will have it.

Same deal with their tendency to toxicity - like anything over 500-600 mgs

depakote for sees him drunk as a skunk - for most kids his age and

weight, it isn't even really considered a theraputic dose. Same with topomax -

he is on a v low dose, only just squeaks into theraputic, yet it was enough to

(probably, we still don't know for sure) break his severe tonic status (benzo

paradoxical reaction...) late last yr.

The only exception with AEDs and nasties and therefore has been the

topomax - a lot of Doose kids respond in a similar fashion to lamictal with this

one - can aggravate myoclonics, but for some reason escaped this one.

Don't ask me why - don't care

We don't even know if the low dose topomax (dep was kept as a bit of a spare

wheel) is even required now that the tonic status has gone bye byes, I

personally believe not, perhaps the acid inducing nature of the topomax is

boosting the diet effect for though, but my money says that's about it.

For now, we are keeping him on both, Doose kids who have a long stable seizure

free period often go on to not have any more, so obviously that is what we are

desperately wanting for , just as it looks like you have seen with Ethan,

and yes -thank God for that inner voice

There is another yahoo group just for MAE, I am one of the group owners, so

give me shout if you want me to join you, I can try doing the invite thing from

my end,

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

From: FitzGeralds

-

I think you may have something there with Ethan. It is interesting, we

tried Trileptal at first with him and that is when all the drop attacks

and head drops started, before that he only had the tonic clonic

variety! I feel like this has cleared up a lot of the mystery behind

his " seizure disorder " diagnosis. I am so happy we listened to our

inner voice that told us to go with the diet so early, even though it

was not the typical route after only 5 weeks of seizures. Thank you for

your info, and if anything starts up again (bite my tongue) I will

certainly have that checked out. Did you say there was a similar list

for Doose on the onelist? XOX-Tina

[Guest guest]

-

This is all so interesting to me and even though we are not dealing with

seizures at the present, I still NEVER take a deep breath thinking its

over! UGGHHH! I'm always checking things out to be sure " that wasn't a

seizure I just saw " , especially since these seizures like the head

drops, myoclonics.can be so fast and tricky!

By the way, Lamictal did not show myoclonics with Ethan during the day,

but at night I would lay with him and count 50-100 little finger,

shoulder, etc jerks when Ethan would go into his deep sleep period.

This did not change even as we lowered and raised his level to 175 mg a

day, BUT, he no longer has these now that he is off the Lamictal (except

the few we all get as we change sleep patterns). I am surprised this

did not affect his overall outcome, since my goal was to quiet the brain

as long as it took to " heal him " .

I'll be praying that 's brain stays quiet as long as he needs to

allow healing to occur! XOX-Tina

Re: just checking in...Tina-MAE

Yep, tegretol saw the drops come thick and fast with , also put

him in NCS which we didn't actually realise till the ped epi in

Wellington put him on video EEG. I don''t know of one Doose kiddie

trialled on tegretol (so that would include trileptal) who hasn't had

this reaction - part of the scary thing about MAE - if there's a

paradoxical seizure response to a med to be had - looks like they will

have it.

Same deal with their tendency to toxicity - like anything over 500-600

mgs depakote for sees him drunk as a skunk - for most kids his

age and weight, it isn't even really considered a theraputic dose. Same

with topomax - he is on a v low dose, only just squeaks into theraputic,

yet it was enough to (probably, we still don't know for sure) break his

severe tonic status (benzo paradoxical reaction...) late last yr.

The only exception with AEDs and nasties and therefore has been

the topomax - a lot of Doose kids respond in a similar fashion to

lamictal with this one - can aggravate myoclonics, but for some reason

escaped this one. Don't ask me why - don't care

We don't even know if the low dose topomax (dep was kept as a bit of a

spare wheel) is even required now that the tonic status has gone bye

byes, I personally believe not, perhaps the acid inducing nature of the

topomax is boosting the diet effect for though, but my money says

that's about it.

For now, we are keeping him on both, Doose kids who have a long stable

seizure free period often go on to not have any more, so obviously that

is what we are desperately wanting for , just as it looks like you

have seen with Ethan, and yes -thank God for that inner voice

There is another yahoo group just for MAE, I am one of the group

owners, so give me shout if you want me to join you, I can try doing the

invite thing from my end,

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

From: FitzGeralds

-

I think you may have something there with Ethan. It is interesting,

we

tried Trileptal at first with him and that is when all the drop

attacks

and head drops started, before that he only had the tonic clonic

variety! I feel like this has cleared up a lot of the mystery

behind

his " seizure disorder " diagnosis. I am so happy we listened to our

inner voice that told us to go with the diet so early, even though

it

was not the typical route after only 5 weeks of seizures. Thank you

for

your info, and if anything starts up again (bite my tongue) I will

certainly have that checked out. Did you say there was a similar

list

for Doose on the onelist? XOX-Tina

[Guest guest]

-

This is all so interesting to me and even though we are not dealing with

seizures at the present, I still NEVER take a deep breath thinking its

over! UGGHHH! I'm always checking things out to be sure " that wasn't a

seizure I just saw " , especially since these seizures like the head

drops, myoclonics.can be so fast and tricky!

By the way, Lamictal did not show myoclonics with Ethan during the day,

but at night I would lay with him and count 50-100 little finger,

shoulder, etc jerks when Ethan would go into his deep sleep period.

This did not change even as we lowered and raised his level to 175 mg a

day, BUT, he no longer has these now that he is off the Lamictal (except

the few we all get as we change sleep patterns). I am surprised this

did not affect his overall outcome, since my goal was to quiet the brain

as long as it took to " heal him " .

I'll be praying that 's brain stays quiet as long as he needs to

allow healing to occur! XOX-Tina

Re: just checking in...Tina-MAE

Yep, tegretol saw the drops come thick and fast with , also put

him in NCS which we didn't actually realise till the ped epi in

Wellington put him on video EEG. I don''t know of one Doose kiddie

trialled on tegretol (so that would include trileptal) who hasn't had

this reaction - part of the scary thing about MAE - if there's a

paradoxical seizure response to a med to be had - looks like they will

have it.

Same deal with their tendency to toxicity - like anything over 500-600

mgs depakote for sees him drunk as a skunk - for most kids his

age and weight, it isn't even really considered a theraputic dose. Same

with topomax - he is on a v low dose, only just squeaks into theraputic,

yet it was enough to (probably, we still don't know for sure) break his

severe tonic status (benzo paradoxical reaction...) late last yr.

The only exception with AEDs and nasties and therefore has been

the topomax - a lot of Doose kids respond in a similar fashion to

lamictal with this one - can aggravate myoclonics, but for some reason

escaped this one. Don't ask me why - don't care

We don't even know if the low dose topomax (dep was kept as a bit of a

spare wheel) is even required now that the tonic status has gone bye

byes, I personally believe not, perhaps the acid inducing nature of the

topomax is boosting the diet effect for though, but my money says

that's about it.

For now, we are keeping him on both, Doose kids who have a long stable

seizure free period often go on to not have any more, so obviously that

is what we are desperately wanting for , just as it looks like you

have seen with Ethan, and yes -thank God for that inner voice

There is another yahoo group just for MAE, I am one of the group

owners, so give me shout if you want me to join you, I can try doing the

invite thing from my end,

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

From: FitzGeralds

-

I think you may have something there with Ethan. It is interesting,

we

tried Trileptal at first with him and that is when all the drop

attacks

and head drops started, before that he only had the tonic clonic

variety! I feel like this has cleared up a lot of the mystery

behind

his " seizure disorder " diagnosis. I am so happy we listened to our

inner voice that told us to go with the diet so early, even though

it

was not the typical route after only 5 weeks of seizures. Thank you

for

your info, and if anything starts up again (bite my tongue) I will

certainly have that checked out. Did you say there was a similar

list

for Doose on the onelist? XOX-Tina

[Guest guest]

-

This is all so interesting to me and even though we are not dealing with

seizures at the present, I still NEVER take a deep breath thinking its

over! UGGHHH! I'm always checking things out to be sure " that wasn't a

seizure I just saw " , especially since these seizures like the head

drops, myoclonics.can be so fast and tricky!

By the way, Lamictal did not show myoclonics with Ethan during the day,

but at night I would lay with him and count 50-100 little finger,

shoulder, etc jerks when Ethan would go into his deep sleep period.

This did not change even as we lowered and raised his level to 175 mg a

day, BUT, he no longer has these now that he is off the Lamictal (except

the few we all get as we change sleep patterns). I am surprised this

did not affect his overall outcome, since my goal was to quiet the brain

as long as it took to " heal him " .

I'll be praying that 's brain stays quiet as long as he needs to

allow healing to occur! XOX-Tina

Re: just checking in...Tina-MAE

Yep, tegretol saw the drops come thick and fast with , also put

him in NCS which we didn't actually realise till the ped epi in

Wellington put him on video EEG. I don''t know of one Doose kiddie

trialled on tegretol (so that would include trileptal) who hasn't had

this reaction - part of the scary thing about MAE - if there's a

paradoxical seizure response to a med to be had - looks like they will

have it.

Same deal with their tendency to toxicity - like anything over 500-600

mgs depakote for sees him drunk as a skunk - for most kids his

age and weight, it isn't even really considered a theraputic dose. Same

with topomax - he is on a v low dose, only just squeaks into theraputic,

yet it was enough to (probably, we still don't know for sure) break his

severe tonic status (benzo paradoxical reaction...) late last yr.

The only exception with AEDs and nasties and therefore has been

the topomax - a lot of Doose kids respond in a similar fashion to

lamictal with this one - can aggravate myoclonics, but for some reason

escaped this one. Don't ask me why - don't care

We don't even know if the low dose topomax (dep was kept as a bit of a

spare wheel) is even required now that the tonic status has gone bye

byes, I personally believe not, perhaps the acid inducing nature of the

topomax is boosting the diet effect for though, but my money says

that's about it.

For now, we are keeping him on both, Doose kids who have a long stable

seizure free period often go on to not have any more, so obviously that

is what we are desperately wanting for , just as it looks like you

have seen with Ethan, and yes -thank God for that inner voice

There is another yahoo group just for MAE, I am one of the group

owners, so give me shout if you want me to join you, I can try doing the

invite thing from my end,

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

From: FitzGeralds

-

I think you may have something there with Ethan. It is interesting,

we

tried Trileptal at first with him and that is when all the drop

attacks

and head drops started, before that he only had the tonic clonic

variety! I feel like this has cleared up a lot of the mystery

behind

his " seizure disorder " diagnosis. I am so happy we listened to our

inner voice that told us to go with the diet so early, even though

it

was not the typical route after only 5 weeks of seizures. Thank you

for

your info, and if anything starts up again (bite my tongue) I will

certainly have that checked out. Did you say there was a similar

list

for Doose on the onelist? XOX-Tina