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Mike

What planner is s Hopkins having you use. I guess I am concerned, althought

have not had any problems, as said Langan's keto team thought the JH

planner outdated... That is what I am using and it sure is user friendly and am

not having any problems, that I am aware of, anyway. What do they have you

using???? .

is@... wrote:

We just got back from Hopkins where Broc started the Keto. I asked about

the Atkins and we talked about it briefly. From what I understood the

Atkins diet calls for 20 grams of carbs per day. Hopkins is using 10 grams.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 5:47 PM

To: ketogenic

Subject: Re: New to group

Dear

Welcome to " the group! "

Yes, J Hopkins is doing a 6 month study for volunteer children, putting them

on a version of the Atkins diet. If you don't want to wait to get into the

keto diet, that may be an option.

There is an Atkins group for seizure-disabled called atkins4seizures. To

subscribe type in atkins4seizures-subscribe . You will get

answers about how the Atkins diet works for children, and you may want to be

in the 6 month trial they are conducting.

, 's mumma

Stettz catatao@...> wrote:

Hi,

I just joined this group and thought I should introduce myself.

My 7 year old daughter is currently on the waiting list for the keto program

at Hopkins (they tell me it will likely be until January), and I am hoping

to prepare myself as well as possible by learning from the group. Her

tentative diagnosis is idiopathic atypical absence seizures or juvenile

absence. My daughter has been on Zarontin, Depakote and Topamax. Her

seizures were much worse on all three drugs in terms of frequency, duration,

and seizure type. She also experienced other side effects such as

excessive weight gain, dizziness, sadness, and agitiation. While she was

taking the drugs, I felt that my daughter had completely disappeared. She

is not taking any medications at the moment. I am giving her various

supplements. Eating junk food, sugar or a great deal of carbohydrates seems

to be a seizure trigger for her in my opinion. I believe strongly that a

dietary approach will likely help her significantly.

I am wondering if anyone who has done the program at Hopkins would be

willing to provide more detailed info about what " it's really like " ,

especially during the first week of hospitalization. This could be

off-group if you prefer, since probably not everyone is interested in the

logistical specifics of Hopkins.

On a separate note, does anyone have any experience with the Atkins Diet for

seizure control? I know that they are in the early stages of research on

this, but I would be curious to hear other's opinions on this since this was

something that was offered to us as a possible option for my daughter.

Thanks for your input.

Re: Heavy cream

Bill,

Lately, the only thing we could think of was that about the same time we

saw

an increase in seizures was the time we changed creams. We have used

thesame brand for years and have been fine. All of the sudden, these

seizures

started happening daily and we thought it might be the probiotics or the

cream.

We stopped the probiotics and the seizures have slowed down but not

completely. Now, I'm going back to the old cream. All of this has

happened since the

constipation issues in July. We just can't get him back on track. Its

sooooooooo frustrating. You would think after 3 years on this diet, the

fine

tuning would be over. Not so.

Thanks for your help

Link to comment
Share on other sites

Jane, who is the dietician at Hopkins, does all of our meal plans. She uses

the JH Meal Planner but admitted it was somewhat outdated. We were told

that one of the staff, I forget who, has a son that is working on an updated

version.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 9:49 PM

To: ketogenic

Subject: RE: New to group - to Mike

Mike

What planner is s Hopkins having you use. I guess I am concerned,

althought have not had any problems, as said Langan's keto team

thought the JH planner outdated... That is what I am using and it sure is

user friendly and am not having any problems, that I am aware of, anyway.

What do they have you using???? .

is@... wrote:

We just got back from Hopkins where Broc started the Keto. I asked about

the Atkins and we talked about it briefly. From what I understood the

Atkins diet calls for 20 grams of carbs per day. Hopkins is using 10 grams.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 5:47 PM

To: ketogenic

Subject: Re: New to group

Dear

Welcome to " the group! "

Yes, J Hopkins is doing a 6 month study for volunteer children, putting them

on a version of the Atkins diet. If you don't want to wait to get into the

keto diet, that may be an option.

There is an Atkins group for seizure-disabled called atkins4seizures. To

subscribe type in atkins4seizures-subscribe . You will get

answers about how the Atkins diet works for children, and you may want to be

in the 6 month trial they are conducting.

, 's mumma

Stettz catatao@...> wrote:

Hi,

I just joined this group and thought I should introduce myself.

My 7 year old daughter is currently on the waiting list for the keto program

at Hopkins (they tell me it will likely be until January), and I am hoping

to prepare myself as well as possible by learning from the group. Her

tentative diagnosis is idiopathic atypical absence seizures or juvenile

absence. My daughter has been on Zarontin, Depakote and Topamax. Her

seizures were much worse on all three drugs in terms of frequency, duration,

and seizure type. She also experienced other side effects such as

excessive weight gain, dizziness, sadness, and agitiation. While she was

taking the drugs, I felt that my daughter had completely disappeared. She

is not taking any medications at the moment. I am giving her various

supplements. Eating junk food, sugar or a great deal of carbohydrates seems

to be a seizure trigger for her in my opinion. I believe strongly that a

dietary approach will likely help her significantly.

I am wondering if anyone who has done the program at Hopkins would be

willing to provide more detailed info about what " it's really like " ,

especially during the first week of hospitalization. This could be

off-group if you prefer, since probably not everyone is interested in the

logistical specifics of Hopkins.

On a separate note, does anyone have any experience with the Atkins Diet for

seizure control? I know that they are in the early stages of research on

this, but I would be curious to hear other's opinions on this since this was

something that was offered to us as a possible option for my daughter.

Thanks for your input.

Re: Heavy cream

Bill,

Lately, the only thing we could think of was that about the same time we

saw

an increase in seizures was the time we changed creams. We have used

thesame brand for years and have been fine. All of the sudden, these

seizures

started happening daily and we thought it might be the probiotics or the

cream.

We stopped the probiotics and the seizures have slowed down but not

completely. Now, I'm going back to the old cream. All of this has

happened since the

constipation issues in July. We just can't get him back on track. Its

sooooooooo frustrating. You would think after 3 years on this diet, the

fine

tuning would be over. Not so.

Thanks for your help

Link to comment
Share on other sites

Hmmmmm.... I am wondering if the Stanford planner is outdated, too. When I

began doing 's meal plans a friend used her Excel & Stanford and did them

for me. However, since I did not know the exact amounts had been receiving

for proteins, carbs, and fats, she plugged in some of the meals my dietitian had

done for us and they were varied, sometimes quite a bit. If the dietitian was

using something more current than Stanford, maybe the Stanford is not great,

either.

I am having my friend check out some of 's favorite meals, comparing what I

have figured on the JH planner with the Stanford, to see how they compare.

Might it be that only those who can get on the one that is restricted to health

professionals on the internet are getting current updated food values??? Time

to find out, as it may be affecting all who are doing thier own meal plans.

Thanks for letting me know. Actually, it does not appear that we are having

trouble, and I know the keto diet is not forgiving, so will see when my friend

works them all up.

, 's mumma

is@... wrote:

Jane, who is the dietician at Hopkins, does all of our meal plans. She uses

the JH Meal Planner but admitted it was somewhat outdated. We were told

that one of the staff, I forget who, has a son that is working on an updated

version.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 9:49 PM

To: ketogenic

Subject: RE: New to group - to Mike

Mike

What planner is s Hopkins having you use. I guess I am concerned,

althought have not had any problems, as said Langan's keto team

thought the JH planner outdated... That is what I am using and it sure is

user friendly and am not having any problems, that I am aware of, anyway.

What do they have you using???? .

is@... wrote:

We just got back from Hopkins where Broc started the Keto. I asked about

the Atkins and we talked about it briefly. From what I understood the

Atkins diet calls for 20 grams of carbs per day. Hopkins is using 10 grams.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 5:47 PM

To: ketogenic

Subject: Re: New to group

Dear

Welcome to " the group! "

Yes, J Hopkins is doing a 6 month study for volunteer children, putting them

on a version of the Atkins diet. If you don't want to wait to get into the

keto diet, that may be an option.

There is an Atkins group for seizure-disabled called atkins4seizures. To

subscribe type in atkins4seizures-subscribe . You will get

answers about how the Atkins diet works for children, and you may want to be

in the 6 month trial they are conducting.

, 's mumma

Stettz catatao@...> wrote:

Hi,

I just joined this group and thought I should introduce myself.

My 7 year old daughter is currently on the waiting list for the keto program

at Hopkins (they tell me it will likely be until January), and I am hoping

to prepare myself as well as possible by learning from the group. Her

tentative diagnosis is idiopathic atypical absence seizures or juvenile

absence. My daughter has been on Zarontin, Depakote and Topamax. Her

seizures were much worse on all three drugs in terms of frequency, duration,

and seizure type. She also experienced other side effects such as

excessive weight gain, dizziness, sadness, and agitiation. While she was

taking the drugs, I felt that my daughter had completely disappeared. She

is not taking any medications at the moment. I am giving her various

supplements. Eating junk food, sugar or a great deal of carbohydrates seems

to be a seizure trigger for her in my opinion. I believe strongly that a

dietary approach will likely help her significantly.

I am wondering if anyone who has done the program at Hopkins would be

willing to provide more detailed info about what " it's really like " ,

especially during the first week of hospitalization. This could be

off-group if you prefer, since probably not everyone is interested in the

logistical specifics of Hopkins.

On a separate note, does anyone have any experience with the Atkins Diet for

seizure control? I know that they are in the early stages of research on

this, but I would be curious to hear other's opinions on this since this was

something that was offered to us as a possible option for my daughter.

Thanks for your input.

Re: Heavy cream

Bill,

Lately, the only thing we could think of was that about the same time we

saw

an increase in seizures was the time we changed creams. We have used

thesame brand for years and have been fine. All of the sudden, these

seizures

started happening daily and we thought it might be the probiotics or the

cream.

We stopped the probiotics and the seizures have slowed down but not

completely. Now, I'm going back to the old cream. All of this has

happened since the

constipation issues in July. We just can't get him back on track. Its

sooooooooo frustrating. You would think after 3 years on this diet, the

fine

tuning would be over. Not so.

Thanks for your help

Link to comment
Share on other sites

I don't know anything about the Stanford Planner but your post did jar my

memory a little. I think the reason that Hopkins felt most comfortable

doing the diets is because they were doing them all of the time and

therefore they were always checking their values. Any of the programs are

only as good as the food values that are in the database. I believe that

the program that I mentioned that they were working on would either be an

online program or have an online database so that there would be one

database with current numbers.

Mike

_____

From: Falk

Sent: Saturday, September 11, 2004 2:03 PM

To: ketogenic

Subject: RE: New to group - to Mike

Hmmmmm.... I am wondering if the Stanford planner is outdated, too. When I

began doing 's meal plans a friend used her Excel & Stanford and did

them for me. However, since I did not know the exact amounts had been

receiving for proteins, carbs, and fats, she plugged in some of the meals my

dietitian had done for us and they were varied, sometimes quite a bit. If

the dietitian was using something more current than Stanford, maybe the

Stanford is not great, either.

I am having my friend check out some of 's favorite meals, comparing

what I have figured on the JH planner with the Stanford, to see how they

compare.

Might it be that only those who can get on the one that is restricted to

health professionals on the internet are getting current updated food

values??? Time to find out, as it may be affecting all who are doing thier

own meal plans.

Thanks for letting me know. Actually, it does not appear that we are having

trouble, and I know the keto diet is not forgiving, so will see when my

friend works them all up.

, 's mumma

is@... wrote:

Jane, who is the dietician at Hopkins, does all of our meal plans. She uses

the JH Meal Planner but admitted it was somewhat outdated. We were told

that one of the staff, I forget who, has a son that is working on an updated

version.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 9:49 PM

To: ketogenic

Subject: RE: New to group - to Mike

Mike

What planner is s Hopkins having you use. I guess I am concerned,

althought have not had any problems, as said Langan's keto team

thought the JH planner outdated... That is what I am using and it sure is

user friendly and am not having any problems, that I am aware of, anyway.

What do they have you using???? .

is@... wrote:

We just got back from Hopkins where Broc started the Keto. I asked about

the Atkins and we talked about it briefly. From what I understood the

Atkins diet calls for 20 grams of carbs per day. Hopkins is using 10 grams.

Mike

_____

From: Falk

Sent: Friday, September 10, 2004 5:47 PM

To: ketogenic

Subject: Re: New to group

Dear

Welcome to " the group! "

Yes, J Hopkins is doing a 6 month study for volunteer children, putting them

on a version of the Atkins diet. If you don't want to wait to get into the

keto diet, that may be an option.

There is an Atkins group for seizure-disabled called atkins4seizures. To

subscribe type in atkins4seizures-subscribe . You will get

answers about how the Atkins diet works for children, and you may want to be

in the 6 month trial they are conducting.

, 's mumma

Stettz catatao@...> wrote:

Hi,

I just joined this group and thought I should introduce myself.

My 7 year old daughter is currently on the waiting list for the keto program

at Hopkins (they tell me it will likely be until January), and I am hoping

to prepare myself as well as possible by learning from the group. Her

tentative diagnosis is idiopathic atypical absence seizures or juvenile

absence. My daughter has been on Zarontin, Depakote and Topamax. Her

seizures were much worse on all three drugs in terms of frequency, duration,

and seizure type. She also experienced other side effects such as

excessive weight gain, dizziness, sadness, and agitiation. While she was

taking the drugs, I felt that my daughter had completely disappeared. She

is not taking any medications at the moment. I am giving her various

supplements. Eating junk food, sugar or a great deal of carbohydrates seems

to be a seizure trigger for her in my opinion. I believe strongly that a

dietary approach will likely help her significantly.

I am wondering if anyone who has done the program at Hopkins would be

willing to provide more detailed info about what " it's really like " ,

especially during the first week of hospitalization. This could be

off-group if you prefer, since probably not everyone is interested in the

logistical specifics of Hopkins.

On a separate note, does anyone have any experience with the Atkins Diet for

seizure control? I know that they are in the early stages of research on

this, but I would be curious to hear other's opinions on this since this was

something that was offered to us as a possible option for my daughter.

Thanks for your input.

Re: Heavy cream

Bill,

Lately, the only thing we could think of was that about the same time we

saw

an increase in seizures was the time we changed creams. We have used

thesame brand for years and have been fine. All of the sudden, these

seizures

started happening daily and we thought it might be the probiotics or the

cream.

We stopped the probiotics and the seizures have slowed down but not

completely. Now, I'm going back to the old cream. All of this has

happened since the

constipation issues in July. We just can't get him back on track. Its

sooooooooo frustrating. You would think after 3 years on this diet, the

fine

tuning would be over. Not so.

Thanks for your help

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