Re: a new anti epileptic drug - Carolyn

[Guest guest]

Carolyn,

I agree with the others, I don't think the lack of knowledge your Drs have

with the diet/meds interaction is sufficient to keep eal safely on it

while he is in this current state.

I really believe he is still very toxic on those medications, and adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic inducing, so if

he is staying on keto, you really need all his blood gases etc checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current hospital. You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey to

France to see if she has any suggestions as to where might be an acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

[Guest guest]

, , Emma, Phil, and the others,

I understand that you think of not putting a new medication now but I'm lost

and doctors don't propose anything else to help.

If I go back hospital, They put Nath on clonazepam, they don't know what else

to do here, so I stay home but I would like some help, it's really to hard to

see nath in that state, I'm very sad and tired but doctors don't see things as I

do, They say Nath is not in " death danger " so he can wait with seizures

because he tolerates them very well, but I don't agree, it's too hard for both

of us!Even if I look after him and I love him a lot it's too difficult...

As I told you before I'm pretty sure it's because Nath is not like a " normal "

child (he can't play, learn, talk,go to school......)that they give up and

don't search about his disease and about medics which could help him!!!I'm so

sad of this conclusion.

I'm a mummy who adore his only child, I would like to help him, I would like

seeing him happy , that's all, is it too much ask ??

Sorry about this mail but I'm very tired and pessimist at the moment.

Carolyn, aël's mum.

-----

From: & Hill

To: ketogenic

Sent: Thursday, July 29, 2004 12:50 AM

Subject: Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge your Drs have

with the diet/meds interaction is sufficient to keep eal safely on it

while he is in this current state.

I really believe he is still very toxic on those medications, and adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic inducing, so if

he is staying on keto, you really need all his blood gases etc checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current hospital. You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey to

France to see if she has any suggestions as to where might be an acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Carolyn-

I truly felt you pain as I read through your mail...I had often felt the same

way with my son, that since he wasn't " normal " the dr's seemed to just give up

on him. But I became a force to be reckoned with, No one was going to tell me

when I should give up, with out hearing an ear full.

I think most of us were suggesting, doing what is needed to get the seizures

under control more, and maybe giving the diet a rest until that happens or you

get a better support team. Allot of us have had to add a new medication when we

didn't want to, slowing the seizures is important. Anytime a new medication is

started it becomes a big adjustment for the body, so maybe with the diet, " out

of control " (due to lack of support), and the new medication(s) little Nath is

just having a rough time. Although the diet is " drug free " , I find it still

takes an adjustment period and that's with a great team of ketogenic diet

trained doctors and nurses.

Do you have any friends of relatives close enough to come by, and just be with

you for a little while? I know this always helped me.

You are helping your son by the love that is apparent when you write, and you

are helping your son by continuing to search for something...

What kind of seizures does Nath have, maybe we could help you find the drug that

has worked best for some of us and pass it on.

You're doing a great job.

, mom to Ethan .

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge your Drs have

with the diet/meds interaction is sufficient to keep eal safely on it

while he is in this current state.

I really believe he is still very toxic on those medications, and adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic inducing, so if

he is staying on keto, you really need all his blood gases etc checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current hospital. You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey to

France to see if she has any suggestions as to where might be an acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Carolyn-

I truly felt you pain as I read through your mail...I had often felt the same

way with my son, that since he wasn't " normal " the dr's seemed to just give up

on him. But I became a force to be reckoned with, No one was going to tell me

when I should give up, with out hearing an ear full.

I think most of us were suggesting, doing what is needed to get the seizures

under control more, and maybe giving the diet a rest until that happens or you

get a better support team. Allot of us have had to add a new medication when we

didn't want to, slowing the seizures is important. Anytime a new medication is

started it becomes a big adjustment for the body, so maybe with the diet, " out

of control " (due to lack of support), and the new medication(s) little Nath is

just having a rough time. Although the diet is " drug free " , I find it still

takes an adjustment period and that's with a great team of ketogenic diet

trained doctors and nurses.

Do you have any friends of relatives close enough to come by, and just be with

you for a little while? I know this always helped me.

You are helping your son by the love that is apparent when you write, and you

are helping your son by continuing to search for something...

What kind of seizures does Nath have, maybe we could help you find the drug that

has worked best for some of us and pass it on.

You're doing a great job.

, mom to Ethan .

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge your Drs have

with the diet/meds interaction is sufficient to keep eal safely on it

while he is in this current state.

I really believe he is still very toxic on those medications, and adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic inducing, so if

he is staying on keto, you really need all his blood gases etc checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current hospital. You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey to

France to see if she has any suggestions as to where might be an acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Carolyn,

No one is questioning how much you love him and it is clear that you

want to do as much as you can for him. I know that there are times

when I could have cheerfully fed camel dung if I thought it

would have helped.

Of course it is upsetting and heartbreaking for you to see him like

this, but you are so tired and there are so many things going on with

him at the moment. Of course you want to see him happy and no, it

isn't too much to ask and it is not too much to ask to try and get

help for your son, but you can't fight for him in this state and if

you are getting no support with the doctors as far as the diet is

concerned then in the long run, it could do more harm than good -

especially with the interaction of all those drugs.

I am sure that I speak on behalf of the rest of the group when I say

that we long to read a post from you that says Nath is better and is

happy and is responding to treatment. We will all support you as

much as we can, but this diet can be all consuming at times and you

just don't have the strength at the moment and you have no support -

not even from the doctors. You need to regain some strength and then

find another centre which can help you.

You and Nath are very much in our thoughts and prayers.

Take Care.

Emma. - Mum to .

> , , Emma, Phil, and the others,

>

> I understand that you think of not putting a new medication now

but I'm lost and doctors don't propose anything else to help.

> If I go back hospital, They put Nath on clonazepam, they don't

know what else to do here, so I stay home but I would like some help,

it's really to hard to see nath in that state, I'm very sad and tired

but doctors don't see things as I do, They say Nath is not in "

death danger " so he can wait with seizures because he tolerates

them very well, but I don't agree, it's too hard for both of us!Even

if I look after him and I love him a lot it's too difficult...

>

> As I told you before I'm pretty sure it's because Nath is not

like a " normal " child (he can't play, learn, talk,go to school......)

that they give up and don't search about his disease and about

medics which could help him!!!I'm so sad of this conclusion.

>

> I'm a mummy who adore his only child, I would like to help him, I

would like seeing him happy , that's all, is it too much ask ??

>

> Sorry about this mail but I'm very tired and pessimist at the

moment.

>

> Carolyn, aël's mum.

>

>

> -----

> From: & Hill

> To: ketogenic

> Sent: Thursday, July 29, 2004 12:50 AM

> Subject: Re: a new anti epileptic drug - Carolyn

>

>

> Carolyn,

> I agree with the others, I don't think the lack of knowledge

your Drs have

> with the diet/meds interaction is sufficient to keep eal

safely on it

> while he is in this current state.

> I really believe he is still very toxic on those medications,

and adding

> more valium, clonazepam etc may be making him a whole lot worse.

> has posted already about the ospolot being acidic

inducing, so if

> he is staying on keto, you really need all his blood gases etc

checked

> before they looked at starting this one.

> Has metabloc acidocis (tested through blood gases) been ruled

out as a

> possible cause for the persistent seizures?

> If he is to remain on the diet I believe he needs his meds

regime

> rationalised, and clearly this is not possible at your current

hospital. You

> need to take him elsewhere. I will see if I can find the name

of the

> hospital that our dietician here was visiting on her recent

journey to

> France to see if she has any suggestions as to where might be

an acceptable

> place to take him,

>

>

>

> ----- Original Message -----

> From: " caronath "

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did

you try it on

> your child?

> aël has so many t c seizures, I put 2 intra rectal

valium tonight

> but still 20 seizures!maybe a less intensive but I really don't

know!

> Nath's dad has him one day and he didn't respect the diet!I'm

so angry!

> I try again but I'm exhausted of seizures and every thing

else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just

a last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-

unsubscribe

>

>

>

>

>

[Guest guest]

Carolyn,

No one is questioning how much you love him and it is clear that you

want to do as much as you can for him. I know that there are times

when I could have cheerfully fed camel dung if I thought it

would have helped.

Of course it is upsetting and heartbreaking for you to see him like

this, but you are so tired and there are so many things going on with

him at the moment. Of course you want to see him happy and no, it

isn't too much to ask and it is not too much to ask to try and get

help for your son, but you can't fight for him in this state and if

you are getting no support with the doctors as far as the diet is

concerned then in the long run, it could do more harm than good -

especially with the interaction of all those drugs.

I am sure that I speak on behalf of the rest of the group when I say

that we long to read a post from you that says Nath is better and is

happy and is responding to treatment. We will all support you as

much as we can, but this diet can be all consuming at times and you

just don't have the strength at the moment and you have no support -

not even from the doctors. You need to regain some strength and then

find another centre which can help you.

You and Nath are very much in our thoughts and prayers.

Take Care.

Emma. - Mum to .

> , , Emma, Phil, and the others,

>

> I understand that you think of not putting a new medication now

but I'm lost and doctors don't propose anything else to help.

> If I go back hospital, They put Nath on clonazepam, they don't

know what else to do here, so I stay home but I would like some help,

it's really to hard to see nath in that state, I'm very sad and tired

but doctors don't see things as I do, They say Nath is not in "

death danger " so he can wait with seizures because he tolerates

them very well, but I don't agree, it's too hard for both of us!Even

if I look after him and I love him a lot it's too difficult...

>

> As I told you before I'm pretty sure it's because Nath is not

like a " normal " child (he can't play, learn, talk,go to school......)

that they give up and don't search about his disease and about

medics which could help him!!!I'm so sad of this conclusion.

>

> I'm a mummy who adore his only child, I would like to help him, I

would like seeing him happy , that's all, is it too much ask ??

>

> Sorry about this mail but I'm very tired and pessimist at the

moment.

>

> Carolyn, aël's mum.

>

>

> -----

> From: & Hill

> To: ketogenic

> Sent: Thursday, July 29, 2004 12:50 AM

> Subject: Re: a new anti epileptic drug - Carolyn

>

>

> Carolyn,

> I agree with the others, I don't think the lack of knowledge

your Drs have

> with the diet/meds interaction is sufficient to keep eal

safely on it

> while he is in this current state.

> I really believe he is still very toxic on those medications,

and adding

> more valium, clonazepam etc may be making him a whole lot worse.

> has posted already about the ospolot being acidic

inducing, so if

> he is staying on keto, you really need all his blood gases etc

checked

> before they looked at starting this one.

> Has metabloc acidocis (tested through blood gases) been ruled

out as a

> possible cause for the persistent seizures?

> If he is to remain on the diet I believe he needs his meds

regime

> rationalised, and clearly this is not possible at your current

hospital. You

> need to take him elsewhere. I will see if I can find the name

of the

> hospital that our dietician here was visiting on her recent

journey to

> France to see if she has any suggestions as to where might be

an acceptable

> place to take him,

>

>

>

> ----- Original Message -----

> From: " caronath "

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did

you try it on

> your child?

> aël has so many t c seizures, I put 2 intra rectal

valium tonight

> but still 20 seizures!maybe a less intensive but I really don't

know!

> Nath's dad has him one day and he didn't respect the diet!I'm

so angry!

> I try again but I'm exhausted of seizures and every thing

else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just

a last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-

unsubscribe

>

>

>

>

>

[Guest guest]

Carolyn,

No one is questioning how much you love him and it is clear that you

want to do as much as you can for him. I know that there are times

when I could have cheerfully fed camel dung if I thought it

would have helped.

Of course it is upsetting and heartbreaking for you to see him like

this, but you are so tired and there are so many things going on with

him at the moment. Of course you want to see him happy and no, it

isn't too much to ask and it is not too much to ask to try and get

help for your son, but you can't fight for him in this state and if

you are getting no support with the doctors as far as the diet is

concerned then in the long run, it could do more harm than good -

especially with the interaction of all those drugs.

I am sure that I speak on behalf of the rest of the group when I say

that we long to read a post from you that says Nath is better and is

happy and is responding to treatment. We will all support you as

much as we can, but this diet can be all consuming at times and you

just don't have the strength at the moment and you have no support -

not even from the doctors. You need to regain some strength and then

find another centre which can help you.

You and Nath are very much in our thoughts and prayers.

Take Care.

Emma. - Mum to .

> , , Emma, Phil, and the others,

>

> I understand that you think of not putting a new medication now

but I'm lost and doctors don't propose anything else to help.

> If I go back hospital, They put Nath on clonazepam, they don't

know what else to do here, so I stay home but I would like some help,

it's really to hard to see nath in that state, I'm very sad and tired

but doctors don't see things as I do, They say Nath is not in "

death danger " so he can wait with seizures because he tolerates

them very well, but I don't agree, it's too hard for both of us!Even

if I look after him and I love him a lot it's too difficult...

>

> As I told you before I'm pretty sure it's because Nath is not

like a " normal " child (he can't play, learn, talk,go to school......)

that they give up and don't search about his disease and about

medics which could help him!!!I'm so sad of this conclusion.

>

> I'm a mummy who adore his only child, I would like to help him, I

would like seeing him happy , that's all, is it too much ask ??

>

> Sorry about this mail but I'm very tired and pessimist at the

moment.

>

> Carolyn, aël's mum.

>

>

> -----

> From: & Hill

> To: ketogenic

> Sent: Thursday, July 29, 2004 12:50 AM

> Subject: Re: a new anti epileptic drug - Carolyn

>

>

> Carolyn,

> I agree with the others, I don't think the lack of knowledge

your Drs have

> with the diet/meds interaction is sufficient to keep eal

safely on it

> while he is in this current state.

> I really believe he is still very toxic on those medications,

and adding

> more valium, clonazepam etc may be making him a whole lot worse.

> has posted already about the ospolot being acidic

inducing, so if

> he is staying on keto, you really need all his blood gases etc

checked

> before they looked at starting this one.

> Has metabloc acidocis (tested through blood gases) been ruled

out as a

> possible cause for the persistent seizures?

> If he is to remain on the diet I believe he needs his meds

regime

> rationalised, and clearly this is not possible at your current

hospital. You

> need to take him elsewhere. I will see if I can find the name

of the

> hospital that our dietician here was visiting on her recent

journey to

> France to see if she has any suggestions as to where might be

an acceptable

> place to take him,

>

>

>

> ----- Original Message -----

> From: " caronath "

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did

you try it on

> your child?

> aël has so many t c seizures, I put 2 intra rectal

valium tonight

> but still 20 seizures!maybe a less intensive but I really don't

know!

> Nath's dad has him one day and he didn't respect the diet!I'm

so angry!

> I try again but I'm exhausted of seizures and every thing

else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just

a last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-

unsubscribe

>

>

>

>

>

[Guest guest]

Carolyn

I know you and Nath are going through hell at the moment. I really feel

for you both. Its just that if you do decide to start the ospolot, I

would ask you to seriously consider stopping the diet first. Just for

that one drug, you already know your drs don't know squat about the diet

and I am afraid the diet and the ospolot together without proper medical

supervision could be very dangerous for Nath.

Let your heart guide you what to do as far as adding more drugs, but if

you choose the ospolot, please stop the diet first

Will be praying for you guys

, 's mom

caronath wrote:

> , , Emma, Phil, and the others,

>

> I understand that you think of not putting a new medication now but

> I'm lost and doctors don't propose anything else to help.

> If I go back hospital, They put Nath on clonazepam, they don't know

> what else to do here, so I stay home but I would like some help, it's

> really to hard to see nath in that state, I'm very sad and tired but

> doctors don't see things as I do, They say Nath is not in " death

> danger " so he can wait with seizures because he tolerates them very

> well, but I don't agree, it's too hard for both of us!Even if I look

> after him and I love him a lot it's too difficult...

>

> As I told you before I'm pretty sure it's because Nath is not like a

> " normal " child (he can't play, learn, talk,go to school......)that

> they give up and don't search about his disease and about medics

> which could help him!!!I'm so sad of this conclusion.

>

> I'm a mummy who adore his only child, I would like to help him, I

> would like seeing him happy , that's all, is it too much ask ??

>

> Sorry about this mail but I'm very tired and pessimist at the

> moment.

>

> Carolyn, aël's mum.

>

>

> -----

> From: & Hill

> To: ketogenic

> Sent: Thursday, July 29, 2004 12:50 AM

> Subject: Re: a new anti epileptic drug - Carolyn

>

>

> Carolyn,

> I agree with the others, I don't think the lack of knowledge

> your Drs have

> with the diet/meds interaction is sufficient to keep eal

> safely on it

> while he is in this current state.

> I really believe he is still very toxic on those medications,

> and adding

> more valium, clonazepam etc may be making him a whole lot worse.

> has posted already about the ospolot being acidic

> inducing, so if

> he is staying on keto, you really need all his blood gases etc

> checked

> before they looked at starting this one.

> Has metabloc acidocis (tested through blood gases) been ruled

> out as a

> possible cause for the persistent seizures?

> If he is to remain on the diet I believe he needs his meds

> regime

> rationalised, and clearly this is not possible at your current

> hospital. You

> need to take him elsewhere. I will see if I can find the name of

> the

> hospital that our dietician here was visiting on her recent

> journey to

> France to see if she has any suggestions as to where might be an

> acceptable

> place to take him,

>

>

>

> ----- Original Message -----

>

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did you

> try it on

> your child?

> aël has so many t c seizures, I put 2 intra rectal valium

> tonight

> but still 20 seizures!maybe a less intensive but I really don't

> know!

> Nath's dad has him one day and he didn't respect the diet!I'm so

> angry!

> I try again but I'm exhausted of seizures and every thing else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe:

> ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

Carolyn

I know you and Nath are going through hell at the moment. I really feel

for you both. Its just that if you do decide to start the ospolot, I

would ask you to seriously consider stopping the diet first. Just for

that one drug, you already know your drs don't know squat about the diet

and I am afraid the diet and the ospolot together without proper medical

supervision could be very dangerous for Nath.

Let your heart guide you what to do as far as adding more drugs, but if

you choose the ospolot, please stop the diet first

Will be praying for you guys

, 's mom

caronath wrote:

> , , Emma, Phil, and the others,

>

> I understand that you think of not putting a new medication now but

> I'm lost and doctors don't propose anything else to help.

> If I go back hospital, They put Nath on clonazepam, they don't know

> what else to do here, so I stay home but I would like some help, it's

> really to hard to see nath in that state, I'm very sad and tired but

> doctors don't see things as I do, They say Nath is not in " death

> danger " so he can wait with seizures because he tolerates them very

> well, but I don't agree, it's too hard for both of us!Even if I look

> after him and I love him a lot it's too difficult...

>

> As I told you before I'm pretty sure it's because Nath is not like a

> " normal " child (he can't play, learn, talk,go to school......)that

> they give up and don't search about his disease and about medics

> which could help him!!!I'm so sad of this conclusion.

>

> I'm a mummy who adore his only child, I would like to help him, I

> would like seeing him happy , that's all, is it too much ask ??

>

> Sorry about this mail but I'm very tired and pessimist at the

> moment.

>

> Carolyn, aël's mum.

>

>

> -----

> From: & Hill

> To: ketogenic

> Sent: Thursday, July 29, 2004 12:50 AM

> Subject: Re: a new anti epileptic drug - Carolyn

>

>

> Carolyn,

> I agree with the others, I don't think the lack of knowledge

> your Drs have

> with the diet/meds interaction is sufficient to keep eal

> safely on it

> while he is in this current state.

> I really believe he is still very toxic on those medications,

> and adding

> more valium, clonazepam etc may be making him a whole lot worse.

> has posted already about the ospolot being acidic

> inducing, so if

> he is staying on keto, you really need all his blood gases etc

> checked

> before they looked at starting this one.

> Has metabloc acidocis (tested through blood gases) been ruled

> out as a

> possible cause for the persistent seizures?

> If he is to remain on the diet I believe he needs his meds

> regime

> rationalised, and clearly this is not possible at your current

> hospital. You

> need to take him elsewhere. I will see if I can find the name of

> the

> hospital that our dietician here was visiting on her recent

> journey to

> France to see if she has any suggestions as to where might be an

> acceptable

> place to take him,

>

>

>

> ----- Original Message -----

>

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did you

> try it on

> your child?

> aël has so many t c seizures, I put 2 intra rectal valium

> tonight

> but still 20 seizures!maybe a less intensive but I really don't

> know!

> Nath's dad has him one day and he didn't respect the diet!I'm so

> angry!

> I try again but I'm exhausted of seizures and every thing else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe:

> ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

Carolyn

I know you and Nath are going through hell at the moment. I really feel

for you both. Its just that if you do decide to start the ospolot, I

would ask you to seriously consider stopping the diet first. Just for

that one drug, you already know your drs don't know squat about the diet

and I am afraid the diet and the ospolot together without proper medical

supervision could be very dangerous for Nath.

Let your heart guide you what to do as far as adding more drugs, but if

you choose the ospolot, please stop the diet first

Will be praying for you guys

, 's mom

caronath wrote:

> , , Emma, Phil, and the others,

>

> I understand that you think of not putting a new medication now but

> I'm lost and doctors don't propose anything else to help.

> If I go back hospital, They put Nath on clonazepam, they don't know

> what else to do here, so I stay home but I would like some help, it's

> really to hard to see nath in that state, I'm very sad and tired but

> doctors don't see things as I do, They say Nath is not in " death

> danger " so he can wait with seizures because he tolerates them very

> well, but I don't agree, it's too hard for both of us!Even if I look

> after him and I love him a lot it's too difficult...

>

> As I told you before I'm pretty sure it's because Nath is not like a

> " normal " child (he can't play, learn, talk,go to school......)that

> they give up and don't search about his disease and about medics

> which could help him!!!I'm so sad of this conclusion.

>

> I'm a mummy who adore his only child, I would like to help him, I

> would like seeing him happy , that's all, is it too much ask ??

>

> Sorry about this mail but I'm very tired and pessimist at the

> moment.

>

> Carolyn, aël's mum.

>

>

> -----

> From: & Hill

> To: ketogenic

> Sent: Thursday, July 29, 2004 12:50 AM

> Subject: Re: a new anti epileptic drug - Carolyn

>

>

> Carolyn,

> I agree with the others, I don't think the lack of knowledge

> your Drs have

> with the diet/meds interaction is sufficient to keep eal

> safely on it

> while he is in this current state.

> I really believe he is still very toxic on those medications,

> and adding

> more valium, clonazepam etc may be making him a whole lot worse.

> has posted already about the ospolot being acidic

> inducing, so if

> he is staying on keto, you really need all his blood gases etc

> checked

> before they looked at starting this one.

> Has metabloc acidocis (tested through blood gases) been ruled

> out as a

> possible cause for the persistent seizures?

> If he is to remain on the diet I believe he needs his meds

> regime

> rationalised, and clearly this is not possible at your current

> hospital. You

> need to take him elsewhere. I will see if I can find the name of

> the

> hospital that our dietician here was visiting on her recent

> journey to

> France to see if she has any suggestions as to where might be an

> acceptable

> place to take him,

>

>

>

> ----- Original Message -----

>

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did you

> try it on

> your child?

> aël has so many t c seizures, I put 2 intra rectal valium

> tonight

> but still 20 seizures!maybe a less intensive but I really don't

> know!

> Nath's dad has him one day and he didn't respect the diet!I'm so

> angry!

> I try again but I'm exhausted of seizures and every thing else!

>

> Carolyn, aël's mum

>

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe:

> ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

Carolyn,

Can your doctor call the doctors who do the ketogenic diet and consult with them

or get your doctor to give you a referral?

Perhaps you could get some information off the internet from Hopkins Site,

Stanford or the 2 French websites and show them to your doctor about the diet.

If you have some relatives to support you and come help you for a while that

might help too.

The diet is complicated to perform on your own. I would take the medicine they

offer for ael unless you can get someone in the medical profession to

start him on the diet. If you have no other doctor then I would take the advice

of the one you have and keep searching for a way at the same time to find

another doctor who does the diet.

Regards,

Hallie

[Guest guest]

Carolyn,

Can your doctor call the doctors who do the ketogenic diet and consult with them

or get your doctor to give you a referral?

Perhaps you could get some information off the internet from Hopkins Site,

Stanford or the 2 French websites and show them to your doctor about the diet.

If you have some relatives to support you and come help you for a while that

might help too.

The diet is complicated to perform on your own. I would take the medicine they

offer for ael unless you can get someone in the medical profession to

start him on the diet. If you have no other doctor then I would take the advice

of the one you have and keep searching for a way at the same time to find

another doctor who does the diet.

Regards,

Hallie

[Guest guest]

Carolyn,

Can your doctor call the doctors who do the ketogenic diet and consult with them

or get your doctor to give you a referral?

Perhaps you could get some information off the internet from Hopkins Site,

Stanford or the 2 French websites and show them to your doctor about the diet.

If you have some relatives to support you and come help you for a while that

might help too.

The diet is complicated to perform on your own. I would take the medicine they

offer for ael unless you can get someone in the medical profession to

start him on the diet. If you have no other doctor then I would take the advice

of the one you have and keep searching for a way at the same time to find

another doctor who does the diet.

Regards,

Hallie

[Guest guest]

Hello,

I finally give you some news but i am so tired and desesperated that I don't

have no more force...

Hopely aël is a bit better, the seizures are less important, he's got

225 mg of trileptal at night and I do mmaintain the keto diet because otherwize

I'll become mad!

I got some answers to my questions from profesors in France, the ones who are

THE professionnals of Keto Diet in France!!!!

They don't know what to do, they said it doesn't matter how blood ketones

are.....I don't need to control blood gaz even carnitine....I don't need tu use

mTC oils because they don't have good taste!!!!!!!!!!!!!!!!!

I don't want to speak to them anymore, it's a real desaster, they don't know

anything and they are supposed to be professionnals.......I prefer get some

infos from you and from my amrican book, I don't have choice!

I'm scared, so scared, aël doesn't smile anymore.

I'm alone.

I understand so well both of you suffering with your children, I would like to

help but I can't even help my own child!

I send a huge kiss to Stella, I'm so sad about this disease which causes such

pain!

Take care

Carolyn, aël's mum

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge your Drs

have

with the diet/meds interaction is sufficient to keep eal safely on

it

while he is in this current state.

I really believe he is still very toxic on those medications, and

adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic inducing,

so if

he is staying on keto, you really need all his blood gases etc checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current hospital.

You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey to

France to see if she has any suggestions as to where might be an

acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try

it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium

tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so

angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a

professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

on 8/5/04 5:07 AM, caronath at caronath@... wrote:

Hello,

I finally give you some news but i am so tired and desesperated that I

don't have no more force...

Hopely aël is a bit better, the seizures are less important, he's got

225 mg of trileptal at night and I do mmaintain the keto diet because

otherwize I'll become mad!

I got some answers to my questions from profesors in France, the ones who

are THE professionnals of Keto Diet in France!!!!

They don't know what to do, they said it doesn't matter how blood ketones

are.....I don't need to control blood gaz even carnitine....I don't need tu

use mTC oils because they don't have good taste!!!!!!!!!!!!!!!!!

I don't want to speak to them anymore, it's a real desaster, they don't

know anything and they are supposed to be professionnals.......I prefer get

some infos from you and from my amrican book, I don't have choice!

I'm scared, so scared, aël doesn't smile anymore.

I'm alone.

I understand so well both of you suffering with your children, I would like

to help but I can't even help my own child!

I send a huge kiss to Stella, I'm so sad about this disease which causes

such pain!

Take care

Carolyn, aël's mum

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge your

Drs have

with the diet/meds interaction is sufficient to keep eal safely

on it

while he is in this current state.

I really believe he is still very toxic on those medications, and

adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic

inducing, so if

he is staying on keto, you really need all his blood gases etc

checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out

as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current

hospital. You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey

to

France to see if she has any suggestions as to where might be an

acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you

try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium

tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so

angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a

last resort! "

List is for parent to parent support only.

It is important to get medical advice from a

professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Carolyn,

Are ael's seizures doing better with the 225mg of trileptal at night?

The reason I ask is because my daughter takes 225mg trileptal at night only

for seizures during her sleep. I hope ael gets relief soon. Keep

learning all you can. This group can help you. This group helped us when

we were living in the Philippines. We gave up on the doctors there and did

our own thing with the help of this group and it proved to be successful.

Rhonda (mom to Shan, age 9, keto/atkins kid 2.5 years)

Hello,

I finally give you some news but i am so tired and desesperated that I

don't have no more force...

Hopely aël is a bit better, the seizures are less important, he's got

225 mg of trileptal at night and I do mmaintain the keto diet because

otherwize I'll become mad!

I got some answers to my questions from profesors in France, the ones who

are THE professionnals of Keto Diet in France!!!!

They don't know what to do, they said it doesn't matter how blood ketones

are.....I don't need to control blood gaz even carnitine....I don't need tu

use mTC oils because they don't have good taste!!!!!!!!!!!!!!!!!

I don't want to speak to them anymore, it's a real desaster, they don't

know anything and they are supposed to be professionnals.......I prefer get

some infos from you and from my amrican book, I don't have choice!

I'm scared, so scared, aël doesn't smile anymore.

I'm alone.

I understand so well both of you suffering with your children, I would like

to help but I can't even help my own child!

I send a huge kiss to Stella, I'm so sad about this disease which causes

such pain!

Take care

Carolyn, aël's mum

[Guest guest]

Carolyn,

How old is ael?

Hallie

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge your

Drs have

with the diet/meds interaction is sufficient to keep eal safely

on it

while he is in this current state.

I really believe he is still very toxic on those medications, and

adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic inducing,

so if

he is staying on keto, you really need all his blood gases etc checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled out as

a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds regime

rationalised, and clearly this is not possible at your current

hospital. You

need to take him elsewhere. I will see if I can find the name of the

hospital that our dietician here was visiting on her recent journey to

France to see if she has any suggestions as to where might be an

acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you try

it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium

tonight

but still 20 seizures!maybe a less intensive but I really don't know!

Nath's dad has him one day and he didn't respect the diet!I'm so

angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a

professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Hallie,

aël is nearly 6

Carolyn

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge

your Drs have

with the diet/meds interaction is sufficient to keep eal

safely on it

while he is in this current state.

I really believe he is still very toxic on those medications,

and adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic

inducing, so if

he is staying on keto, you really need all his blood gases etc

checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled

out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds

regime

rationalised, and clearly this is not possible at your current

hospital. You

need to take him elsewhere. I will see if I can find the name of

the

hospital that our dietician here was visiting on her recent

journey to

France to see if she has any suggestions as to where might be an

acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did you

try it on

your child?

aël has so many t c seizures, I put 2 intra rectal valium

tonight

but still 20 seizures!maybe a less intensive but I really don't

know!

Nath's dad has him one day and he didn't respect the diet!I'm so

angry!

I try again but I'm exhausted of seizures and every thing else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just a

last resort! "

List is for parent to parent support only.

It is important to get medical advice from a

professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe:

ketogenic-unsubscribe

[Guest guest]

Does he eat regular food or only soft food or liquids?

Hallie

Re: a new anti epileptic drug - Carolyn

Carolyn,

I agree with the others, I don't think the lack of knowledge

your Drs have

with the diet/meds interaction is sufficient to keep eal

safely on it

while he is in this current state.

I really believe he is still very toxic on those medications,

and adding

more valium, clonazepam etc may be making him a whole lot worse.

has posted already about the ospolot being acidic

inducing, so if

he is staying on keto, you really need all his blood gases etc

checked

before they looked at starting this one.

Has metabloc acidocis (tested through blood gases) been ruled

out as a

possible cause for the persistent seizures?

If he is to remain on the diet I believe he needs his meds

regime

rationalised, and clearly this is not possible at your current

hospital. You

need to take him elsewhere. I will see if I can find the name of

the

hospital that our dietician here was visiting on her recent

journey to

France to see if she has any suggestions as to where might be an

acceptable

place to take him,

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

Hi,

The neuro told me about OSPOLOT, do you do this drug and did

you try it on

your child?

aël has so many t c seizures, I put 2 intra rectal

valium tonight

but still 20 seizures!maybe a less intensive but I really don't

know!

Nath's dad has him one day and he didn't respect the diet!I'm

so angry!

I try again but I'm exhausted of seizures and every thing

else!

Carolyn, aël's mum

" The Ketogenic Diet....a realistic treatment option, NOT just

a last resort! "

List is for parent to parent support only.

It is important to get medical advice from a

professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe:

ketogenic-unsubscribe