Re: help about to give up hope

[Guest guest]

I know its probably a lot harder over there to do (not great diet

support) but if you mean you've been doing the MCT version of the diet,

I would strongly suggest you try the classical version before giving up

hope. It seems to have a much better success rate

, 's mom

lynncarolfletcher wrote:

> hello everyone,

> my name is lynn and I have a 9year old daughter Abbie.Abbie had

> presumed viral encephalitis 5 years ago she has been left profoundly

> disabled.Since her illness apart from all her other problems she has

> had difficult to control epilepsy.she has been on numerus

> combinations of anti convulsants.she is currently on phenobarbitone,

> topiromate,lamotrogine,and vigabatrin !!! still averaging 10 fits a

> day.She has global atrophy due to the illness.

>

> A year ago she went on the ketogenic diet and if I am honest it has

> been a nightmare.It took us ages to get her in ketosis and her

> immunity seemed to be affected.[lots of hospital addmissions].Her

> fits got worse in duration and now and again she has clusters of

> small seizures that we had not seen pre diet.Hence vigabatrin has

> been added.On the good side she does appear a little more allert but

> apart from that there has been no good points.

>

> Abbie is gastro fed on the mct diet at great ormond street.We have

> now been handed over to our local dietian who has no experience of

> the ketogenic diet. Should I Give up? Can the diet work for children

> with atrophy ? PLEASE HELP

>

> LYNN

>

>

>

>

>

> " 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]

Lynn,

I'm sorry to hear that your experience with the diet has been so frustrating.

I'd also suggest that the MCT version would not be my choice. The key will be

finding some good support for you to do the regular Keto diet with an

inexperienced dietician. What a challenge! I hope there are still some other UK

families on this list that might be able to advise you.... but I'm not sure. I

haven't been here a lot lately myself. Have you been to the website:

http://www.mynchen.demon.co.uk/index.htm ? I know it's based in the UK and

should have some good advice and resources...... maybe even a way to hook you up

with some local families.

This past four years must have been a really tough time for you and your family.

What an ordeal your sweet daughter has been through. I'm so sorry. I hope the

diet can work out for her. Did they ever take any of her other medications

away? Or adjust the dosages lower? Sometimes the diet doesn't really get a

chance to work when there are so many meds on board..... and the levels can go

toxic due to the Keto diet changing the way they are metabolized. Many doctors

don't recognize that fact..... and then the whole diet experience is chalked up

as a failure when it needn't have been. I am honestly not sure why they insist

on keeping up with medications that obviously aren't working. Some can even

cause MORE seizures.... that certainly has happened with our daughter.

Hope you get some answers soon.

Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, global delays, motor

dyspraxia, SBO & TCS, seizure disorder- Former Keto Kid- 2000-2003, currently

fairly well controlled on the Specific Carbohydrate Diet plus Keppra.)

help about to give up hope

hello everyone,

my name is lynn and I have a 9year old daughter Abbie.Abbie had

presumed viral encephalitis 5 years ago she has been left profoundly

disabled.Since her illness apart from all her other problems she has

had difficult to control epilepsy.she has been on numerus

combinations of anti convulsants.she is currently on phenobarbitone,

topiromate,lamotrogine,and vigabatrin !!! still averaging 10 fits a

day.She has global atrophy due to the illness.

A year ago she went on the ketogenic diet and if I am honest it has

been a nightmare.It took us ages to get her in ketosis and her

immunity seemed to be affected.[lots of hospital addmissions].Her

fits got worse in duration and now and again she has clusters of

small seizures that we had not seen pre diet.Hence vigabatrin has

been added.On the good side she does appear a little more allert but

apart from that there has been no good points.

Abbie is gastro fed on the mct diet at great ormond street.We have

now been handed over to our local dietian who has no experience of

the ketogenic diet. Should I Give up? Can the diet work for children

with atrophy ? PLEASE HELP

LYNN

" 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]

Hello Lynn

I'm at Great Ormond Street and my daughter, Francesca has been on the

trial for 6 months, on the classical diet. I understand how

difficult it must be when you are handed over at the end of the trial

to a dietician that doesn't seemingly have much knowledge. It does

seem to me that the classical diet is worth a shot.

However, I really can't believe that with a 'cocktail' of 4 drugs on

board it is going to be easy to get the diet to work. Have you any

inkling of one you feel is not working at all, that you could perhaps

ask to try and wean? Francesca was on 3 drugs at one time and we

felt that the topiramate was not working. Our consultant at the time

suggested that she was on a very low dose so we should try increasing

it! We went along with him and did increase it to the level he felt

would work on the basis that if it didn't, we would wean her off it.

Sure enough it didn't work and so we weaned her off it.

We then, a few months later, went through the same process with

clonazepam, although we refused to increase it this time. He tried

to tell us how, if we came off it and seizures increased, we might

not get the same effect again. What effect we asked - it's not doing

anything so how can we lose any good effect anyway??? Again, no

difference in seizures.

We had always felt that the Epilim was the only drug doing anything,

as it was definitely controlling her tonic clonic seizures. (We knew

that when she started having tonic clonics again because we hadn't

adjusted the dose upwards as she had gained weight and when we did

control came back.)

The point of all this is that you may feel one of those drugs is

doing something and others not? If so, I cannot see that it's not

worth trying to get rid of one at a time.

Once Francesca had been on the diet 3 months we started reducing the

Epilim and fingers crossed, the diet does seem to be working on the

tonic clonics. We still have a long way to go to get control of the

myoclonics, but I really do believe, having spent some months on

this list now, that we will have a better chance of tweaking the diet

to get control without drugs.

Please feel free to e-mail me privately if I can do anything to help,

being a UK girl (I'm in North London - where are you?). I'm a

passionate believer in the diet and would so love to help if I

possibly can.

Good luck and - don't give up!

, Mum to Francesca, Keto Kid since Sept 03

> hello everyone,

> my name is lynn and I have a 9year old daughter Abbie.Abbie had

> presumed viral encephalitis 5 years ago she has been left

profoundly

> disabled.Since her illness apart from all her other problems she

has

> had difficult to control epilepsy.she has been on numerus

> combinations of anti convulsants.she is currently on

phenobarbitone,

> topiromate,lamotrogine,and vigabatrin !!! still averaging 10 fits a

> day.She has global atrophy due to the illness.

>

> A year ago she went on the ketogenic diet and if I am honest it has

> been a nightmare.It took us ages to get her in ketosis and her

> immunity seemed to be affected.[lots of hospital addmissions].Her

> fits got worse in duration and now and again she has clusters of

> small seizures that we had not seen pre diet.Hence vigabatrin has

> been added.On the good side she does appear a little more allert

but

> apart from that there has been no good points.

>

> Abbie is gastro fed on the mct diet at great ormond street.We have

> now been handed over to our local dietian who has no experience of

> the ketogenic diet. Should I Give up? Can the diet work for

children

> with atrophy ? PLEASE HELP

>

> LYNN

[Guest guest]

Hello Lynn

I'm at Great Ormond Street and my daughter, Francesca has been on the

trial for 6 months, on the classical diet. I understand how

difficult it must be when you are handed over at the end of the trial

to a dietician that doesn't seemingly have much knowledge. It does

seem to me that the classical diet is worth a shot.

However, I really can't believe that with a 'cocktail' of 4 drugs on

board it is going to be easy to get the diet to work. Have you any

inkling of one you feel is not working at all, that you could perhaps

ask to try and wean? Francesca was on 3 drugs at one time and we

felt that the topiramate was not working. Our consultant at the time

suggested that she was on a very low dose so we should try increasing

it! We went along with him and did increase it to the level he felt

would work on the basis that if it didn't, we would wean her off it.

Sure enough it didn't work and so we weaned her off it.

We then, a few months later, went through the same process with

clonazepam, although we refused to increase it this time. He tried

to tell us how, if we came off it and seizures increased, we might

not get the same effect again. What effect we asked - it's not doing

anything so how can we lose any good effect anyway??? Again, no

difference in seizures.

We had always felt that the Epilim was the only drug doing anything,

as it was definitely controlling her tonic clonic seizures. (We knew

that when she started having tonic clonics again because we hadn't

adjusted the dose upwards as she had gained weight and when we did

control came back.)

The point of all this is that you may feel one of those drugs is

doing something and others not? If so, I cannot see that it's not

worth trying to get rid of one at a time.

Once Francesca had been on the diet 3 months we started reducing the

Epilim and fingers crossed, the diet does seem to be working on the

tonic clonics. We still have a long way to go to get control of the

myoclonics, but I really do believe, having spent some months on

this list now, that we will have a better chance of tweaking the diet

to get control without drugs.

Please feel free to e-mail me privately if I can do anything to help,

being a UK girl (I'm in North London - where are you?). I'm a

passionate believer in the diet and would so love to help if I

possibly can.

Good luck and - don't give up!

, Mum to Francesca, Keto Kid since Sept 03

> hello everyone,

> my name is lynn and I have a 9year old daughter Abbie.Abbie had

> presumed viral encephalitis 5 years ago she has been left

profoundly

> disabled.Since her illness apart from all her other problems she

has

> had difficult to control epilepsy.she has been on numerus

> combinations of anti convulsants.she is currently on

phenobarbitone,

> topiromate,lamotrogine,and vigabatrin !!! still averaging 10 fits a

> day.She has global atrophy due to the illness.

>

> A year ago she went on the ketogenic diet and if I am honest it has

> been a nightmare.It took us ages to get her in ketosis and her

> immunity seemed to be affected.[lots of hospital addmissions].Her

> fits got worse in duration and now and again she has clusters of

> small seizures that we had not seen pre diet.Hence vigabatrin has

> been added.On the good side she does appear a little more allert

but

> apart from that there has been no good points.

>

> Abbie is gastro fed on the mct diet at great ormond street.We have

> now been handed over to our local dietian who has no experience of

> the ketogenic diet. Should I Give up? Can the diet work for

children

> with atrophy ? PLEASE HELP

>

> LYNN

[Guest guest]

Hello Lynn

I'm at Great Ormond Street and my daughter, Francesca has been on the

trial for 6 months, on the classical diet. I understand how

difficult it must be when you are handed over at the end of the trial

to a dietician that doesn't seemingly have much knowledge. It does

seem to me that the classical diet is worth a shot.

However, I really can't believe that with a 'cocktail' of 4 drugs on

board it is going to be easy to get the diet to work. Have you any

inkling of one you feel is not working at all, that you could perhaps

ask to try and wean? Francesca was on 3 drugs at one time and we

felt that the topiramate was not working. Our consultant at the time

suggested that she was on a very low dose so we should try increasing

it! We went along with him and did increase it to the level he felt

would work on the basis that if it didn't, we would wean her off it.

Sure enough it didn't work and so we weaned her off it.

We then, a few months later, went through the same process with

clonazepam, although we refused to increase it this time. He tried

to tell us how, if we came off it and seizures increased, we might

not get the same effect again. What effect we asked - it's not doing

anything so how can we lose any good effect anyway??? Again, no

difference in seizures.

We had always felt that the Epilim was the only drug doing anything,

as it was definitely controlling her tonic clonic seizures. (We knew

that when she started having tonic clonics again because we hadn't

adjusted the dose upwards as she had gained weight and when we did

control came back.)

The point of all this is that you may feel one of those drugs is

doing something and others not? If so, I cannot see that it's not

worth trying to get rid of one at a time.

Once Francesca had been on the diet 3 months we started reducing the

Epilim and fingers crossed, the diet does seem to be working on the

tonic clonics. We still have a long way to go to get control of the

myoclonics, but I really do believe, having spent some months on

this list now, that we will have a better chance of tweaking the diet

to get control without drugs.

Please feel free to e-mail me privately if I can do anything to help,

being a UK girl (I'm in North London - where are you?). I'm a

passionate believer in the diet and would so love to help if I

possibly can.

Good luck and - don't give up!

, Mum to Francesca, Keto Kid since Sept 03

> hello everyone,

> my name is lynn and I have a 9year old daughter Abbie.Abbie had

> presumed viral encephalitis 5 years ago she has been left

profoundly

> disabled.Since her illness apart from all her other problems she

has

> had difficult to control epilepsy.she has been on numerus

> combinations of anti convulsants.she is currently on

phenobarbitone,

> topiromate,lamotrogine,and vigabatrin !!! still averaging 10 fits a

> day.She has global atrophy due to the illness.

>

> A year ago she went on the ketogenic diet and if I am honest it has

> been a nightmare.It took us ages to get her in ketosis and her

> immunity seemed to be affected.[lots of hospital addmissions].Her

> fits got worse in duration and now and again she has clusters of

> small seizures that we had not seen pre diet.Hence vigabatrin has

> been added.On the good side she does appear a little more allert

but

> apart from that there has been no good points.

>

> Abbie is gastro fed on the mct diet at great ormond street.We have

> now been handed over to our local dietian who has no experience of

> the ketogenic diet. Should I Give up? Can the diet work for

children

> with atrophy ? PLEASE HELP

>

> LYNN