need input from members

Posted September 29, 2004 · September 29, 2004

Hi All:

My name is Feingold and I have a two and a half year old daughter named

Reenie. Reenie has a seizure disorder and autism. She has complex partial

seizures, mostly of the staring type. She is presently on Depakote (a very low

dose) and has been on the ketogenic diet since May of this year. The diet was

working really well, she had no seizures during the time that she was on the

diet.

However, she recently (within the last month) got sick with a stomach flu type

virus and b/c very ill. She was throwing up all of her food and we had to take

her off the diet. She started getting better so we resumed the diet. She

immediately began throwing up her food as soon as we put her back on the diet.

So now she is back on regular food and has already had about three seizures.

Has this ever happened to anyone? I'm not really sure where to go from here.

She seems a lot happier off the diet she is smiling more and has more energy but

she is also extremely spacey especially during her ABA therapy and she is doing

alot more self stimulatory behavior. Also since putting her back on regular

food she seems like she's on a high (is that from all of a sudden having sugar

etc. back in her body)

I've read alot of your posts indicating that there is a modified version of the

keto diet, maybe similar to Atkins. Where could I find out about that? I'm

scheduled to see my neurologist October 18th but wanted to try to get some input

before then.

Any advice/input you could offer me is greatly appreciated.

Sincerely,

Feingold

__________________________________________________

Posted September 29, 2004 · September 29, 2004

Hi ,

Although my daughter does not have Autism, I have many, many friends who

have tried the following with success. First thing is to try and reduce

simple carbohydrates (sugar), then they eliminate wheat or gluten for a

week or two to see if they notice any changes, then they eliminate

casein (dairy). Some have eliminated wheat and casein at the same time

but if it works you are not sure which one or both were the problem. I

would look to your local Autism society for information on this

approach.

In terms of seizure control, some people use the Atkins approach which

is approximately a 2:1 ratio and calories and fluids are not limited.

This diet does cause ketosis and the Induction stage with only 18

carbohydrates was very close to my daughter's Ketogenic Diet

carbohydrate allocation.

Some parents use the MCT Diet which according to s Hopkins has a

lower success rate than the Keto Diet. However, every kid is different.

My Claire is also on the Depakote and the Keto Diet. She vomits when

she is too ketotic and when she doesn't like what I am trying to feed

her (gag reflex.) Most importantly, vomiting can be a sign of liver

problems associated with Depakote use even on a low dose. I would have

her levels checked (blood draw) before I did anything else. You should

be able to call your neurologist and have them send in an Order for the

blood work to your local lab without having to wait for an appointment

with the doctor.

Claire has all types of seizures and we found that Tegretol or

generically carbezmide worked best on the partials with less side

effects than the Depakote.

I hope this helped.

Lois

________________________________

From: Feingold

Sent: Wednesday, September 29, 2004 9:58 AM

To: ketogenic

Subject: need input from members

Hi All:

My name is Feingold and I have a two and a half year old daughter

named Reenie. Reenie has a seizure disorder and autism. She has complex

partial seizures, mostly of the staring type. She is presently on

Depakote (a very low dose) and has been on the ketogenic diet since May

of this year. The diet was working really well, she had no seizures

during the time that she was on the diet.

However, she recently (within the last month) got sick with a stomach

flu type virus and b/c very ill. She was throwing up all of her food

and we had to take her off the diet. She started getting better so we

resumed the diet. She immediately began throwing up her food as soon as

we put her back on the diet. So now she is back on regular food and has

already had about three seizures.

Has this ever happened to anyone? I'm not really sure where to go from

here. She seems a lot happier off the diet she is smiling more and has

more energy but she is also extremely spacey especially during her ABA

therapy and she is doing alot more self stimulatory behavior. Also

since putting her back on regular food she seems like she's on a high

(is that from all of a sudden having sugar etc. back in her body)

I've read alot of your posts indicating that there is a modified version

of the keto diet, maybe similar to Atkins. Where could I find out about

that? I'm scheduled to see my neurologist October 18th but wanted to

try to get some input before then.

Any advice/input you could offer me is greatly appreciated.

Sincerely,

Feingold

__________________________________________________

Posted September 29, 2004 · September 29, 2004

I wonder if the diet with the depakote ws the problem - if the

combination is making her too ketotic. If you want to restart the diet

hows about a lower ratio than what you were on before.....or if you are

feeling brave getting rid of the last of the depakote? Sometimes very

low doses of depakote in combination with the diet can cause toxicity in

some kids. Sounds lke the virus pushed things over the edge and her

system can not longer tolerate is teh way you were doing it.

, 's mom

" Valente. Lois " wrote:

> Hi ,

>

> Although my daughter does not have Autism, I have many, many friends

> who

> have tried the following with success. First thing is to try and

> reduce

> simple carbohydrates (sugar), then they eliminate wheat or gluten for

> a

> week or two to see if they notice any changes, then they eliminate

> casein (dairy). Some have eliminated wheat and casein at the same

> time

> but if it works you are not sure which one or both were the problem.

> I

> would look to your local Autism society for information on this

> approach.

>

> In terms of seizure control, some people use the Atkins approach which

>

> is approximately a 2:1 ratio and calories and fluids are not limited.

> This diet does cause ketosis and the Induction stage with only 18

> carbohydrates was very close to my daughter's Ketogenic Diet

> carbohydrate allocation.

>

> Some parents use the MCT Diet which according to s Hopkins has a

> lower success rate than the Keto Diet. However, every kid is

> different.

>

> My Claire is also on the Depakote and the Keto Diet. She vomits when

> she is too ketotic and when she doesn't like what I am trying to feed

> her (gag reflex.) Most importantly, vomiting can be a sign of liver

> problems associated with Depakote use even on a low dose. I would

> have

> her levels checked (blood draw) before I did anything else. You

> should

> be able to call your neurologist and have them send in an Order for

> the

> blood work to your local lab without having to wait for an appointment

>

> with the doctor.

>

> Claire has all types of seizures and we found that Tegretol or

> generically carbezmide worked best on the partials with less side

> effects than the Depakote.

>

> I hope this helped.

>

> Lois

>

> ________________________________

>

> From: Feingold

> Sent: Wednesday, September 29, 2004 9:58 AM

> To: ketogenic

> Subject: need input from members

>

> Hi All:

>

> My name is Feingold and I have a two and a half year old

> daughter

> named Reenie. Reenie has a seizure disorder and autism. She has

> complex

> partial seizures, mostly of the staring type. She is presently on

> Depakote (a very low dose) and has been on the ketogenic diet since

> May

> of this year. The diet was working really well, she had no seizures

> during the time that she was on the diet.

>

> However, she recently (within the last month) got sick with a stomach

> flu type virus and b/c very ill. She was throwing up all of her food

> and we had to take her off the diet. She started getting better so we

>

> resumed the diet. She immediately began throwing up her food as soon

> as

> we put her back on the diet. So now she is back on regular food and

> has

> already had about three seizures.

>

> Has this ever happened to anyone? I'm not really sure where to go

> from

> here. She seems a lot happier off the diet she is smiling more and

> has

> more energy but she is also extremely spacey especially during her ABA

>

> therapy and she is doing alot more self stimulatory behavior. Also

> since putting her back on regular food she seems like she's on a high

> (is that from all of a sudden having sugar etc. back in her body)

>

> I've read alot of your posts indicating that there is a modified

> version

> of the keto diet, maybe similar to Atkins. Where could I find out

> about

> that? I'm scheduled to see my neurologist October 18th but wanted to

> try to get some input before then.

>

> Any advice/input you could offer me is greatly appreciated.

>

> Sincerely,

>

> Feingold

>

> __________________________________________________

>

Posted September 30, 2004 · September 30, 2004

,

I'm wondering if you need to gradually increase the ratio to where

it worked best. It seems like to me that your daughter is not

tolerating the ratio after being off it...perhaps going through the

same things that a child goes through when fasting for the diet at

the very beginning. Also, maybe Reenie does not need to be at the

previous ratio for the diet to work well.

Our daughter has had the the same experience as Reenie when going

off the diet. Twice we have weaned her off and she eventually

was " climbing the walls. " The first time we gave her unlimited

fruit and vegetables and she really went after the fruit. She was

very high up in the clouds. The second time we limited the fruit

and vegetables and it took 2-3 weeks before she was " high. " I'm

considering trying again. The next time that we try, I will use the

ADHD diet approach and eliminate most fruit (allow pears and granny

smith apples) and limit certain vegetables. Our daughter is not

completely seizure free (has sleep seizures) but I'm hoping that we

can eventually wean the diet and either maintain or improve her

situation.

Our daughter's diet is similar to the Atkins except that we continue

to weigh her food. She is presently at a 1:1 ratio producing

moderate to high ketones by bed time.

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

> Hi All:

>

> My name is Feingold and I have a two and a half year old

daughter named Reenie. Reenie has a seizure disorder and autism.

She has complex partial seizures, mostly of the staring type. She

is presently on Depakote (a very low dose) and has been on the

ketogenic diet since May of this year. The diet was working really

well, she had no seizures during the time that she was on the diet.

>

> However, she recently (within the last month) got sick with a

stomach flu type virus and b/c very ill. She was throwing up all of

her food and we had to take her off the diet. She started getting

better so we resumed the diet. She immediately began throwing up

her food as soon as we put her back on the diet. So now she is back

on regular food and has already had about three seizures.

>

> Has this ever happened to anyone? I'm not really sure where to go

from here. She seems a lot happier off the diet she is smiling more

and has more energy but she is also extremely spacey especially

during her ABA therapy and she is doing alot more self stimulatory

behavior. Also since putting her back on regular food she seems

like she's on a high (is that from all of a sudden having sugar

etc. back in her body)

>

> I've read alot of your posts indicating that there is a modified

version of the keto diet, maybe similar to Atkins. Where could I

find out about that? I'm scheduled to see my neurologist October

18th but wanted to try to get some input before then.

>

> Any advice/input you could offer me is greatly appreciated.

>

> Sincerely,

>

> Feingold

>

> __________________________________________________

>

Posted September 30, 2004 · September 30, 2004

Hi ,

The Neurodiet has the same principles as the keto diet and seems like a good

alternative. If you do a Yahoo search for " Isabel Walcutt " you will find her

website and her daughter " a's story " - I would consider this as an

alternative for my son if he were unable to tolerate keto.

She has been awarded an honorary doctorate for her contribution in this field

and had gone through many, many years of seizures until (her daughter is now 35

yrs old) a modified diet was introduced i.e Limited carbs and heavy fats, with

limited protein intake.

Just an option.

Take care,

Michele (mom to keenan 2 1/2 yrs)