Re: Hi ! I am a new member-Natasha

[Guest guest]

Hi and

Unfortunately taking meds off before the diet is not our case.I

agree life could be alot easier if keto diet is started without

meds.Due to severity of SMEI and frequent occurence of status

epilepticus it is simply impossible to do so.Status seizures of SMEI

patients are usually difficult to stop and there would be a great

chance for status seizure to occure as result of meds withdrawl.Our

keto team do not like the idea of ph being on topamax and the

diet either and they said topamax would be the thirst drug to wean

off.I hope they will at least reduse topamax dose at the beginning.I

honestly did not know about negative effect of valproate on the

diet.ph's neuro said it would be OK.We have never got any

control with any of 4 drugs.Each drug only seemed to add new seizure

types.We just started valproate 4 weeks ago and I am afraid to say

so ,but I think it is working at least a little bit.ph used to

have up to 50 myoclonic absences a day but for the last four days I

only observed 4 of them and even one day completely seizure

free.This is unbelievable as myoclonic absences never stopped since

they started and only increased with time.I am praying that it is

not temporary effect and that valproate actually does something.I

would definately like to stick with this drug as it is first time I

see positive changes( tougching wood ) and hope it will work OK

with diet.

Natasha & Joe

[Guest guest]

If you are starting to see a response from the valproate, that's great

Natasha, it will make life until you can start the diet a lot easier won't

it. This med never really did a lot for , well nothing good seizure

control wise anyhow, and whether it is part of his current successful

combination right now, or whether it is just in there as a spare wheel, I

have no idea, we'll find out some day I guess....As long as it is not

hindering seizure control (as it used to when up at high doses or in a

benzo/valproate combination), I am fairly comfortable with it staying in the

mix for now.

Diff neuros have different opinions on the valproate/diet combination,

some feel it can negate the beneficial effects of ketosis (both work along

similar fatty acid pathways) some feel it enhances it. One of those

maddening no clear cut answer ones....

Having been on this list for nearly 3 yrs now, I have to say though that I

have seen more positive outcomes when depakote is weaned from, rather than

added to, a diet combination, but no can predict obviously how each child

will react individually.

There is the issue of carnitine deficiency that has to be closely

monitored if on both the diet and valproate, as both can deplete carnitine

stores - 's latest carnitine levels have actually just come back as

deficient, but as he is not symptomatic, I am not treating, as

supplementation with him in the past has led to some pretty hairy moments -

long story, but as with AEDs, some children respond favourably to this being

added in, some don't...

Anyways, if the valproate is showing no adverse signs, and is in fact

helping with control, well then obviously it is one of the last things you

would want to be looking at changing. If it ain't broke....

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

> Hi and

> Unfortunately taking meds off before the diet is not our case.I

> agree life could be alot easier if keto diet is started without

> meds.Due to severity of SMEI and frequent occurence of status

> epilepticus it is simply impossible to do so.Status seizures of SMEI

> patients are usually difficult to stop and there would be a great

> chance for status seizure to occure as result of meds withdrawl.Our

> keto team do not like the idea of ph being on topamax and the

> diet either and they said topamax would be the thirst drug to wean

> off.I hope they will at least reduse topamax dose at the beginning.I

> honestly did not know about negative effect of valproate on the

> diet.ph's neuro said it would be OK.We have never got any

> control with any of 4 drugs.Each drug only seemed to add new seizure

> types.We just started valproate 4 weeks ago and I am afraid to say

> so ,but I think it is working at least a little bit.ph used to

> have up to 50 myoclonic absences a day but for the last four days I

> only observed 4 of them and even one day completely seizure

> free.This is unbelievable as myoclonic absences never stopped since

> they started and only increased with time.I am praying that it is

> not temporary effect and that valproate actually does something.I

> would definately like to stick with this drug as it is first time I

> see positive changes( tougching wood ) and hope it will work OK

> with diet.

>

> Natasha & Joe

[Guest guest]

If you are starting to see a response from the valproate, that's great

Natasha, it will make life until you can start the diet a lot easier won't

it. This med never really did a lot for , well nothing good seizure

control wise anyhow, and whether it is part of his current successful

combination right now, or whether it is just in there as a spare wheel, I

have no idea, we'll find out some day I guess....As long as it is not

hindering seizure control (as it used to when up at high doses or in a

benzo/valproate combination), I am fairly comfortable with it staying in the

mix for now.

Diff neuros have different opinions on the valproate/diet combination,

some feel it can negate the beneficial effects of ketosis (both work along

similar fatty acid pathways) some feel it enhances it. One of those

maddening no clear cut answer ones....

Having been on this list for nearly 3 yrs now, I have to say though that I

have seen more positive outcomes when depakote is weaned from, rather than

added to, a diet combination, but no can predict obviously how each child

will react individually.

There is the issue of carnitine deficiency that has to be closely

monitored if on both the diet and valproate, as both can deplete carnitine

stores - 's latest carnitine levels have actually just come back as

deficient, but as he is not symptomatic, I am not treating, as

supplementation with him in the past has led to some pretty hairy moments -

long story, but as with AEDs, some children respond favourably to this being

added in, some don't...

Anyways, if the valproate is showing no adverse signs, and is in fact

helping with control, well then obviously it is one of the last things you

would want to be looking at changing. If it ain't broke....

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

> Hi and

> Unfortunately taking meds off before the diet is not our case.I

> agree life could be alot easier if keto diet is started without

> meds.Due to severity of SMEI and frequent occurence of status

> epilepticus it is simply impossible to do so.Status seizures of SMEI

> patients are usually difficult to stop and there would be a great

> chance for status seizure to occure as result of meds withdrawl.Our

> keto team do not like the idea of ph being on topamax and the

> diet either and they said topamax would be the thirst drug to wean

> off.I hope they will at least reduse topamax dose at the beginning.I

> honestly did not know about negative effect of valproate on the

> diet.ph's neuro said it would be OK.We have never got any

> control with any of 4 drugs.Each drug only seemed to add new seizure

> types.We just started valproate 4 weeks ago and I am afraid to say

> so ,but I think it is working at least a little bit.ph used to

> have up to 50 myoclonic absences a day but for the last four days I

> only observed 4 of them and even one day completely seizure

> free.This is unbelievable as myoclonic absences never stopped since

> they started and only increased with time.I am praying that it is

> not temporary effect and that valproate actually does something.I

> would definately like to stick with this drug as it is first time I

> see positive changes( tougching wood ) and hope it will work OK

> with diet.

>

> Natasha & Joe

[Guest guest]

If you are starting to see a response from the valproate, that's great

Natasha, it will make life until you can start the diet a lot easier won't

it. This med never really did a lot for , well nothing good seizure

control wise anyhow, and whether it is part of his current successful

combination right now, or whether it is just in there as a spare wheel, I

have no idea, we'll find out some day I guess....As long as it is not

hindering seizure control (as it used to when up at high doses or in a

benzo/valproate combination), I am fairly comfortable with it staying in the

mix for now.

Diff neuros have different opinions on the valproate/diet combination,

some feel it can negate the beneficial effects of ketosis (both work along

similar fatty acid pathways) some feel it enhances it. One of those

maddening no clear cut answer ones....

Having been on this list for nearly 3 yrs now, I have to say though that I

have seen more positive outcomes when depakote is weaned from, rather than

added to, a diet combination, but no can predict obviously how each child

will react individually.

There is the issue of carnitine deficiency that has to be closely

monitored if on both the diet and valproate, as both can deplete carnitine

stores - 's latest carnitine levels have actually just come back as

deficient, but as he is not symptomatic, I am not treating, as

supplementation with him in the past has led to some pretty hairy moments -

long story, but as with AEDs, some children respond favourably to this being

added in, some don't...

Anyways, if the valproate is showing no adverse signs, and is in fact

helping with control, well then obviously it is one of the last things you

would want to be looking at changing. If it ain't broke....

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

> Hi and

> Unfortunately taking meds off before the diet is not our case.I

> agree life could be alot easier if keto diet is started without

> meds.Due to severity of SMEI and frequent occurence of status

> epilepticus it is simply impossible to do so.Status seizures of SMEI

> patients are usually difficult to stop and there would be a great

> chance for status seizure to occure as result of meds withdrawl.Our

> keto team do not like the idea of ph being on topamax and the

> diet either and they said topamax would be the thirst drug to wean

> off.I hope they will at least reduse topamax dose at the beginning.I

> honestly did not know about negative effect of valproate on the

> diet.ph's neuro said it would be OK.We have never got any

> control with any of 4 drugs.Each drug only seemed to add new seizure

> types.We just started valproate 4 weeks ago and I am afraid to say

> so ,but I think it is working at least a little bit.ph used to

> have up to 50 myoclonic absences a day but for the last four days I

> only observed 4 of them and even one day completely seizure

> free.This is unbelievable as myoclonic absences never stopped since

> they started and only increased with time.I am praying that it is

> not temporary effect and that valproate actually does something.I

> would definately like to stick with this drug as it is first time I

> see positive changes( tougching wood ) and hope it will work OK

> with diet.

>

> Natasha & Joe