We're doing the diet!!

[Guest guest]

--

I am new, too. Think it's a great idea to start the diet. I think it is

underutilized. The drugs are tough on our kids. No solution is perfect, but in

my

heart, I believe it is a responsible choice w/ a better potential outcome than

any drugs can offer.

Now, we just stick together and do it....praying all the while!

--Fran

[Guest guest]

In a message dated 12/13/2004 8:26:16 PM Eastern Standard Time,

torontobarber@... writes:

>

> Watch the movie " ...first do no harm " . And get the video about the diet

> from the Charlie Foundation or from your local Epilepsy Foundation.

>

> Bill

>

BTW, I agree w/this. It was sent to me by our dietician as 'required' before

starting.

--Fran

[Guest guest]

As much to our dismay, 's seizures are not remaining under

control with his current med treatment.

We met with his neurologist this afternoon and they're going to admitt

for 24 hours to find out exactly where we're at with frequency

on his seizures. This I think is just to give my husband and I a

piece of mind that we're making the right decision to the diet. My

mind keeps telling me that this is right choice but my heart can't

help but think of all the problems that I've read. Is it really worth

it? I basically know the answer to that. I am able to know the

answer to that because of this group of heartwarming, loving, caring,

incredible people involved in this group of keto families!!

should be going for the admitt sometime next week and then they're

putting him in for the 1st available bed in Boston Children's Hospital.

So now, I guess any words of advice prior to admission would really

help. A couple of extra prayers couldn't hurt either.

We're hoping that this will be a wonderful start to an incredible year

for !! We've started talking about the diet tonight with him.

But not too much as to overwhelm him. He's a very wise 7 but still

just 7. Thanks in advance for any welcome advice!! Right now he's on

Depakote, Klonopin, Topamax, Zarontin, B6, and Tenex(for ADD). Just

to give you some background on him.

I also wanted to take this opportunity to wish all of my newest found

family a wonderful Holiday season and a Happy New Year!! Best Wishes

to all!!!

~ Jake's mom(waiting for a date to start the diet)

[Guest guest]

Watch the movie " ...first do no harm " . And get the video about the diet

from the Charlie Foundation or from your local Epilepsy Foundation.

Bill

rtjlarwood wrote:

>

> As much to our dismay, 's seizures are not remaining under

> control with his current med treatment.

>

> We met with his neurologist this afternoon and they're going to admitt

> for 24 hours to find out exactly where we're at with frequency

> on his seizures. This I think is just to give my husband and I a

> piece of mind that we're making the right decision to the diet. My

> mind keeps telling me that this is right choice but my heart can't

> help but think of all the problems that I've read. Is it really worth

> it? I basically know the answer to that. I am able to know the

> answer to that because of this group of heartwarming, loving, caring,

> incredible people involved in this group of keto families!!

> should be going for the admitt sometime next week and then they're

> putting him in for the 1st available bed in Boston Children's Hospital.

>

> So now, I guess any words of advice prior to admission would really

> help. A couple of extra prayers couldn't hurt either.

>

> We're hoping that this will be a wonderful start to an incredible year

> for !! We've started talking about the diet tonight with him.

> But not too much as to overwhelm him. He's a very wise 7 but still

> just 7. Thanks in advance for any welcome advice!! Right now he's on

> Depakote, Klonopin, Topamax, Zarontin, B6, and Tenex(for ADD). Just

> to give you some background on him.

>

> I also wanted to take this opportunity to wish all of my newest found

> family a wonderful Holiday season and a Happy New Year!! Best Wishes

> to all!!!

>

> ~ Jake's mom(waiting for a date to start the diet)

>

>

>

>

>

>

[Guest guest]

Hi ,

I have a Jake too and he has been on the diet since 1996. He just turned 9.

We are followed by Duffy at CH and for the diet by Thiele at

MGH (used to be the keto neuro at CH). Just wanted to wish you luck.

In our case the diet was well worth it, I would say 85% improvement right

off the bat that lasted about 2 years. Unfortunately we've slowly lost

control since then but have remained on the diet as it's the only treatment

that has helped him.

Is Bergin your primary neuro?

Barb Swoyer, Jake's mom, Boston (Sudbury)

We're doing the diet!!

> should be going for the admitt sometime next week and then they're

> putting him in for the 1st available bed in Boston Children's Hospital.

[Guest guest]

,

So happy to hear that will start the diet soon. Lots of

prayers from here for a great start... let us know when you find out

the date.

Our daughter was 7 when she started the diet, too. She has done so

well. We have been so blessed and we are so proud of her. It's

hard, but can do it, too--I know he can. It is REALLY worth it

to give the diet a try!!! became seizure free immediately on

the diet. That doesn't always happen but it is worth it to fine tune

the diet and give it a good chance to work. We were asked to commit

to at least 3 months, preferably 6, in order to let our team adjust

the diet. If it works, it is worth every sacrifice you have to

make.

Read Dr. Freeman's book (twice if you can) before you go to the

hospital. Take the book with you and read it there. We tried out

the cream, mayo and butter ahead of time. I also made some " keto

like " foods so that she could see that there were some good things to

be had on the diet. She was the queen of carbs--loved 'em all,

especially PASTA!!! Have some keto foods on hand so that you don't

have to run to the store the first day you get home from the

hospital. The big three (cream, mayo, butter), bacon, eggs, a few

veggies (you will be suprised at how small his veggie portions will

be), diet soda--if he tolerates artificial sweetener (dieticians have

different views on this so you might want to ask ahead of time so

that you can buy a little bit, if it's o.k.) Also, buy some of the

small gladware containers, small spatulas to scrape plates, etc. I

have a hand held " coffee frother " that whips cream in a jiffy. NO

messy beaters, and it all stays in the cup. Your dietician will

advise you about a scale. Then.... relax (as much as you can) and

trust that you are trying something that truly might be the answer

to your prayers-- it certainly was for us!!

Cammie

Mom to , age 8, currently weaning from the diet.

>

> As much to our dismay, 's seizures are not remaining under

> control with his current med treatment.

>

> We met with his neurologist this afternoon and they're going to

admitt

> for 24 hours to find out exactly where we're at with frequency

> on his seizures. This I think is just to give my husband and I a

> piece of mind that we're making the right decision to the diet. My

> mind keeps telling me that this is right choice but my heart can't

> help but think of all the problems that I've read. Is it really

worth

> it? I basically know the answer to that. I am able to know the

> answer to that because of this group of heartwarming, loving,

caring,

> incredible people involved in this group of keto families!!

> should be going for the admitt sometime next week and then they're

> putting him in for the 1st available bed in Boston Children's

Hospital.

>

> So now, I guess any words of advice prior to admission would really

> help. A couple of extra prayers couldn't hurt either.

>

> We're hoping that this will be a wonderful start to an incredible

year

> for !! We've started talking about the diet tonight with him.

> But not too much as to overwhelm him. He's a very wise 7 but still

> just 7. Thanks in advance for any welcome advice!! Right now he's

on

> Depakote, Klonopin, Topamax, Zarontin, B6, and Tenex(for ADD). Just

> to give you some background on him.

>

> I also wanted to take this opportunity to wish all of my newest

found

> family a wonderful Holiday season and a Happy New Year!! Best

Wishes

> to all!!!

>

> ~ Jake's mom(waiting for a date to start the diet)