Re: keto diet and older kids

July 29, 2003

Dawn, my son is less than 2, so I can't help in that regard, but I

know this darling woman in Denmark who's 4yr-old son had seizures

his entire life and against doctors advice she started her son on a

modified atkins/keto diet by herself and help from folks on this

board, and her son became seizure-free. then i think after he was

seizure free, one doctor changed his dx to rholandic. I don't know

that he has that dx, but what an amazing story.

if you can't get a doctor to help you start the diet, i would be

happy to set the parameters using the Freeman method, and we could

get the board to double-check them. I sort of had to learn it all

myself with the help from susan and ann on this group, because my

dietician somehow got all his numbers wrong. We paid lots of $$, we

traveled out of state to start the diet on an inpatient basis so we

could do it right, and was all messed up. So now i have all this

knowledge and would love to put it to good use.

I would recommend getting doctor's approval, because there are

several labs that should be checked, etc. But the irony in that is

we're having difficulty getting a doctor to do the labs because our

insurance isn't paying for all of them. And a double irony is that

we've met our out of pocket spending limit for insurance, so I could

get him tested in the emergency room and not pay if we needed to,

hehehe (we haven't). i digress, a little humor that probably i'm

the only one who finds funny.

If you reach despair and want help doing it on your own, please save

my email and contact me. I'm at maria@.... I recommend

you order the book by Freeman, The Ketogenic Diet: A Treatment

for Epilepsy. You can also peruse this cool site if you want to

learn more

http://www.mynchen.demon.co.uk/Ketogenic_diet/Management/Calculating_

the_ketogenic_diet.htm.

best,

mom to Quincy

23 months, Doose/MAE

> HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

YEARS.(

> WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT.. I

THINK WE

> HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

July 29, 2003

Dawn, my son is less than 2, so I can't help in that regard, but I

know this darling woman in Denmark who's 4yr-old son had seizures

his entire life and against doctors advice she started her son on a

modified atkins/keto diet by herself and help from folks on this

board, and her son became seizure-free. then i think after he was

seizure free, one doctor changed his dx to rholandic. I don't know

that he has that dx, but what an amazing story.

if you can't get a doctor to help you start the diet, i would be

happy to set the parameters using the Freeman method, and we could

get the board to double-check them. I sort of had to learn it all

myself with the help from susan and ann on this group, because my

dietician somehow got all his numbers wrong. We paid lots of $$, we

traveled out of state to start the diet on an inpatient basis so we

could do it right, and was all messed up. So now i have all this

knowledge and would love to put it to good use.

I would recommend getting doctor's approval, because there are

several labs that should be checked, etc. But the irony in that is

we're having difficulty getting a doctor to do the labs because our

insurance isn't paying for all of them. And a double irony is that

we've met our out of pocket spending limit for insurance, so I could

get him tested in the emergency room and not pay if we needed to,

hehehe (we haven't). i digress, a little humor that probably i'm

the only one who finds funny.

If you reach despair and want help doing it on your own, please save

my email and contact me. I'm at maria@.... I recommend

you order the book by Freeman, The Ketogenic Diet: A Treatment

for Epilepsy. You can also peruse this cool site if you want to

learn more

http://www.mynchen.demon.co.uk/Ketogenic_diet/Management/Calculating_

the_ketogenic_diet.htm.

best,

mom to Quincy

23 months, Doose/MAE

> HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

YEARS.(

> WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT.. I

THINK WE

> HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

July 29, 2003

Dawn, my son is less than 2, so I can't help in that regard, but I

know this darling woman in Denmark who's 4yr-old son had seizures

his entire life and against doctors advice she started her son on a

modified atkins/keto diet by herself and help from folks on this

board, and her son became seizure-free. then i think after he was

seizure free, one doctor changed his dx to rholandic. I don't know

that he has that dx, but what an amazing story.

if you can't get a doctor to help you start the diet, i would be

happy to set the parameters using the Freeman method, and we could

get the board to double-check them. I sort of had to learn it all

myself with the help from susan and ann on this group, because my

dietician somehow got all his numbers wrong. We paid lots of $$, we

traveled out of state to start the diet on an inpatient basis so we

could do it right, and was all messed up. So now i have all this

knowledge and would love to put it to good use.

I would recommend getting doctor's approval, because there are

several labs that should be checked, etc. But the irony in that is

we're having difficulty getting a doctor to do the labs because our

insurance isn't paying for all of them. And a double irony is that

we've met our out of pocket spending limit for insurance, so I could

get him tested in the emergency room and not pay if we needed to,

hehehe (we haven't). i digress, a little humor that probably i'm

the only one who finds funny.

If you reach despair and want help doing it on your own, please save

my email and contact me. I'm at maria@.... I recommend

you order the book by Freeman, The Ketogenic Diet: A Treatment

for Epilepsy. You can also peruse this cool site if you want to

learn more

http://www.mynchen.demon.co.uk/Ketogenic_diet/Management/Calculating_

the_ketogenic_diet.htm.

best,

mom to Quincy

23 months, Doose/MAE

> HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

YEARS.(

> WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT.. I

THINK WE

> HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

July 30, 2003

Please, please, please keep pushing if you want to try the diet. We

didn't push hard enough and it wasn't until all the drugs our son

was on caused so many problems that he ended up 12 weeks in

intensive care and came out with severe brain damage that our

doctors allowed us to try it. When we started the diet was in

status and one day into the diet went to sleep for the first time in

5 weeks.

If nothing else the doctors has done has helped and they say " he

wouldnt do well on the diet " ask them how " well " he's done with all

the traditional options!

Good Luck

>

> > HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

> YEARS.(

> > WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> > THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT..

I

> THINK WE

> > HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

July 30, 2003

Please, please, please keep pushing if you want to try the diet. We

didn't push hard enough and it wasn't until all the drugs our son

was on caused so many problems that he ended up 12 weeks in

intensive care and came out with severe brain damage that our

doctors allowed us to try it. When we started the diet was in

status and one day into the diet went to sleep for the first time in

5 weeks.

If nothing else the doctors has done has helped and they say " he

wouldnt do well on the diet " ask them how " well " he's done with all

the traditional options!

Good Luck

>

> > HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

> YEARS.(

> > WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> > THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT..

I

> THINK WE

> > HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

July 30, 2003

You've found the right place. Where do you live? You need a neuro who will

support your efforts in doing the diet. It's very doable if you are

committed to it. After exhausting all options, you have every right to try

it. Give us some more info and we can help, I'm sure.

Barb Swoyer, Boston

keto diet and older kids

> HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

RS.(

> WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT.. I THINK WE

> HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

> I'M LOOKING TO TALK TO MOMS OR DADS THAT HAVE TRIED THE DIET WITH OLDER

> CHILDREN.

> I'M ALSO LOOKING FOR ANY PARENTS THAT HAVE A CHILD WITH A DX OF MALIGNANT

> ROLANDIC EPILEPSY.. THANK YOU DAWN

>

> _________________________________________________________________

> STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

>

> " 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

>

July 30, 2003

You've found the right place. Where do you live? You need a neuro who will

support your efforts in doing the diet. It's very doable if you are

committed to it. After exhausting all options, you have every right to try

it. Give us some more info and we can help, I'm sure.

Barb Swoyer, Boston

keto diet and older kids

> HELP.... MY SON IS 9 YEARS OLD HAVING SEIZURES FOR OVER 4

RS.(

> WITHOUT CONTROL) I WANT TO DO THE KETO DIET.

> THE DOCTORS ARE ALL SCREAMING SAYING HE WOULD'NT DO WELL ON IT.. I THINK WE

> HAVE TRIED ALL THE OTHER OPTIONS. WE EVEN HAVE A VNS IMPLANT .

> I'M LOOKING TO TALK TO MOMS OR DADS THAT HAVE TRIED THE DIET WITH OLDER

> CHILDREN.

> I'M ALSO LOOKING FOR ANY PARENTS THAT HAVE A CHILD WITH A DX OF MALIGNANT

> ROLANDIC EPILEPSY.. THANK YOU DAWN

>

> _________________________________________________________________

> STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

>

> " 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

>

August 3, 2003

Savanna was 7.5 when we started the diet-almost 5 years ago. She has a

diagnosis of Tuberous Sclerosis Complex with epileptic seizures. When we

started the diet she was on several meds-had tried about 6 other meds in teh

past and nothing was controlling her seizures. We have gone from over 30

seizures during the day (not sure how many she had at night) to 1 or 2 small

jerks daily, usually within 30 minutes of waking up. She is able to function at

school-(also is cognitively delayed, severe and had lots of speech and language

delays), is talking like crazy, reads about 20 sight words, knows which songs

are on which VHS tapes, where her favorite books are located in the school as

well as public library, runs the VCR, CD and computer. The only problem we have

now and then is she likes to sneak food!

Kathy/WI

August 3, 2003