Re: Help! We've lost control!

July 6, 2001

Wow, he's big...what's the height? Jake is 5 1/2, weighs 43 lbs, is 42 "

tall, and is on 1100 calories. Sounds like his are right I guess....did you

want him to lose weight?

Re: Help! We've lost control!

> Faye,

> In answer to your inquiry about Ben, he is 5 1/2 years

> old, weighs 53 pounds (down from 57 when starting the

> diet),. he is on the 4:1 ratio and gets 1330 calories

> per day in three meals. We had tried a snack for a

> while but lost control and so we took it out. He does

> not eat any " free' foods, sticks only to 6 menus and

> NEVER cheats. Nothing new in the diet, or on the

> labels, no change in sleeping patterns and he is not

> ill. I am at my wits end in trying to figure out the

> reason that things could have started out so good and

> are now the pits. Any help would be wonderful.

> Thanks,

>

> __________________________________________________

>

July 6, 2001

Wow, he's big...what's the height? Jake is 5 1/2, weighs 43 lbs, is 42 "

tall, and is on 1100 calories. Sounds like his are right I guess....did you

want him to lose weight?

Re: Help! We've lost control!

> Faye,

> In answer to your inquiry about Ben, he is 5 1/2 years

> old, weighs 53 pounds (down from 57 when starting the

> diet),. he is on the 4:1 ratio and gets 1330 calories

> per day in three meals. We had tried a snack for a

> while but lost control and so we took it out. He does

> not eat any " free' foods, sticks only to 6 menus and

> NEVER cheats. Nothing new in the diet, or on the

> labels, no change in sleeping patterns and he is not

> ill. I am at my wits end in trying to figure out the

> reason that things could have started out so good and

> are now the pits. Any help would be wonderful.

> Thanks,

>

> __________________________________________________

>

July 6, 2001

Wow, he's big...what's the height? Jake is 5 1/2, weighs 43 lbs, is 42 "

tall, and is on 1100 calories. Sounds like his are right I guess....did you

want him to lose weight?

Re: Help! We've lost control!

> Faye,

> In answer to your inquiry about Ben, he is 5 1/2 years

> old, weighs 53 pounds (down from 57 when starting the

> diet),. he is on the 4:1 ratio and gets 1330 calories

> per day in three meals. We had tried a snack for a

> while but lost control and so we took it out. He does

> not eat any " free' foods, sticks only to 6 menus and

> NEVER cheats. Nothing new in the diet, or on the

> labels, no change in sleeping patterns and he is not

> ill. I am at my wits end in trying to figure out the

> reason that things could have started out so good and

> are now the pits. Any help would be wonderful.

> Thanks,

>

> __________________________________________________

>

July 6, 2001

You can also use a system alkalyzer, like Bicitra or Polycitra. Buy via doctor's prescription. Works for many, not for some. Jake has been on both.

Barb Swoyer, Jake's mom

RE: Help! We've lost control!

has never not been at a 5. . .and she's back to being very "naughty" and irritable again. Is club soda just a quick fix? I've been wanting to lower her ratio for a long time, but since we've lost control again (after the last of the Lamictal 2 weeks ago), I'm hesitant. . .almost fearing I might have to go up. Are club soda and decreased ratio the only things to do for acidity?--D

***

I have not seen many people comment on the PH being 5-but can'thandle 5-he is fine at 6 but when it dips a little he is acidic. I use ClubSoda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and itseems to keep him at 6-when I forget to add it back to 5 and grouchy andcrying and red ears etc. "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 6, 2001

I agree that he sounds big- is 47 pounds and 7 3/4 years old, but

is very skinny?

Re: Help! We've lost control!

>

> > Faye,

> > In answer to your inquiry about Ben, he is 5 1/2 years

> > old, weighs 53 pounds (down from 57 when starting the

> > diet),. he is on the 4:1 ratio and gets 1330 calories

> > per day in three meals. We had tried a snack for a

> > while but lost control and so we took it out. He does

> > not eat any " free' foods, sticks only to 6 menus and

> > NEVER cheats. Nothing new in the diet, or on the

> > labels, no change in sleeping patterns and he is not

> > ill. I am at my wits end in trying to figure out the

> > reason that things could have started out so good and

> > are now the pits. Any help would be wonderful.

> > Thanks,

> >

> > __________________________________________________

> >

July 6, 2001

DeEtte: I use it always as part of his koolaid-may-be I shouldn't but I can't find any other way to keep him from going acid and keeping his ketones to low-med. I have tried the orange juice but the next couple of days he goes acid again.

I have some notes from the Winnipeg Centre of Blood Analysis-

PH is measured on a scale from 0-14. A lower number means the substance is more acidic with less potentioal for absorbing hydrogen ions. A higher numer means more basic (alkaline) and there is more potential of absorption.

In our body the PH is important because it controls the speed of our biochemical reactions. This means that it controls the speed of enzyme activity as well as the speedof our nerve communication.

Human blood normally stays at a very narrow PH , at around 7.3. Too far below or above this range and mircroorganisms in the blood can change shape, mutate become pathogenic and reproduce.

Once the PH level turns acidic:

The mineral and vitamin absorption potential of the body decreases

The Bacteria levels of the body(ie the good bacteria vs the bad bacteria) can also be affected

The Oxygen delivery between cells can suffer.

I could go on if you like-but wanted to clarify the PH issue from my sourses??

Diane

RE: Help! We've lost control!

has never not been at a 5. . .and she's back to being very "naughty" and irritable again. Is club soda just a quick fix? I've been wanting to lower her ratio for a long time, but since we've lost control again (after the last of the Lamictal 2 weeks ago), I'm hesitant. . .almost fearing I might have to go up. Are club soda and decreased ratio the only things to do for acidity?--D

***

I have not seen many people comment on the PH being 5-but can'thandle 5-he is fine at 6 but when it dips a little he is acidic. I use ClubSoda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and itseems to keep him at 6-when I forget to add it back to 5 and grouchy andcrying and red ears etc. "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 7, 2001

I should have added that when we use OJ the acidity rises again the next day. When it happens day after day and ketones are high as well, then I consider a ratio drop.

(Hannah's mum, Australia)

RE: Help! We've lost control!

has never not been at a 5. . .and she's back to being very "naughty" and irritable again. Is club soda just a quick fix? I've been wanting to lower her ratio for a long time, but since we've lost control again (after the last of the Lamictal 2 weeks ago), I'm hesitant. . .almost fearing I might have to go up. Are club soda and decreased ratio the only things to do for acidity?--D

***

I have not seen many people comment on the PH being 5-but can'thandle 5-he is fine at 6 but when it dips a little he is acidic. I use ClubSoda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and itseems to keep him at 6-when I forget to add it back to 5 and grouchy andcrying and red ears etc.

July 7, 2001

, did you say you had recently weaned a med? Some of them affect

metabolism tremendously. Nate was on depakote, which can have side effects

either way...........anorexia or weight gain. Since he had no problems with

either, I didn't realize what a difference being off it would make.......I

wound up recalculating a lot, dropping the ratio to keep ahead of his

ketones. Nate does best at 40-80 on the stix, higher gives a lot more

myoclonics, and we get into acidosis. Lower, we used to see more GMs, but

the last few months, we're not seeing that, even with cheating and ketones

occasionally at 5. I do have to watch for a ketone bounce after cheating,

this messes him up badly.

{{{{{{{{{{{{LISA}}}}}}}}}}}}}

Hope something clicks for you right away, and you figure out a solution.

Love, Deb

> Faye,

> In answer to your inquiry about Ben, he is 5 1/2 years

> old, weighs 53 pounds (down from 57 when starting the

> diet),. he is on the 4:1 ratio and gets 1330 calories

> per day in three meals. We had tried a snack for a

> while but lost control and so we took it out. He does

> not eat any " free' foods, sticks only to 6 menus and

> NEVER cheats. Nothing new in the diet, or on the

> labels, no change in sleeping patterns and he is not

> ill. I am at my wits end in trying to figure out the

> reason that things could have started out so good and

> are now the pits. Any help would be wonderful.

> Thanks,

>

> __________________________________________________

>

July 7, 2001

,

Just two thoughts came to mind while reading your post. It is amazing at

how changing medicine can effect these kids. My guess is that you are

seeing withdrawal seizures. Coming down from these meds are hard on

these kids. I'd suggest going a little slower. Also, if you're not

using flaxseed oil, you may consider it to help with the withdrawals.

Careful though, flaxseed can darken the ketone stick & if he is acting

irritable, he may be getting a little too ketotic. Drug weans can make

ketones go up and down. Second thought, maybe he needs a little of the

medicine to maintain control. How will you know? The only way is to

stay committed to your wean. After all the dust settles & he is still

seizing, consider adding some back. What do you do in the meantime? I'd

go slower on my wean. Let him stablize before taking another step down

on the wean. Hope things get better. BTW, don't beat yourself up for

weaning the medicine. You have to find out if he can get by without the

meds - your doing your best to find out what is best for your child, try

not to second guess your decisions (speaking from experience here).

Kathy in Tennessee

Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced

Mom to 'lil sis, a - 3

" Even to your old age and gray hairs I am He, I am He who will sustain

you. I have made you and I will carry you; I will sustain you and I will

rescue you. "

Isaiah 46:4

On Thu, 5 Jul 2001 06:23:28 -0700 (PDT) lisa neumann

writes:

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

> __________________________________________________

>

July 7, 2001

,

Sorry the seizures have come back for Ben. What are

his ketones and what med are you weaning? Pl. remind

me again of what Ben's diagnose is. pH 5 seems somewhat

acidic but some kids do well on that level.

I'm very interested in what you mentioned as slowing.

My son Rohan who is 12, also is slower now in everything

he does. I don't know whether it is because of subclinical

seizures. We noticed Rohan having a number of absence

like seizures when he was on Phenobarbitone. He had partial

complex sz which generalized sometimes, but on starting

phenobarb, the secondary generalized sz stopped but we

saw several minor sz a day. In addition he was very hyperactive

and aggressive and completely out of character. Since reducing

pheno and starting the KGD we've seen him slow down.

Sorry this is long but I thought I'd share it incase you get a

clue.

BTW the last AEd we weaned was depakote and we needed

to lower the ratio each time we decreased the meds as he got

more ketotic.

All the best

Saro....Rohan's mum (in UK on KGD from 02/00 and med-free

for 6 months, but not sz-free)

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0.

I

> don't know what the PH level is supposed to tell us,

> and our dietician says "don't worry about it". I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the "honeymoon effect" with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

> __________________________________________________

>

July 8, 2001

-yes, Ben is a big boy, not really fat at all. he is

5 1/2 years old and is 47 " tall. His brother (7 years

old ) is exactly the same size as Ben so I know he is

just a big guy.

__________________________________________________

July 8, 2001

I want to echo what was said about weight gain. My son has been on the

ketogenic diet for 4 years now. He is almost 8 yrs old and weighs 52

pounds. Each and every time we have weight gain, he has a status seizure.

We immediately adjust the diet to a lower calorie intake and gain control

again. Keeping Ben lean has been the best remedy. In April, Ben had gained

some 7 pounds in 3 months (weighing in at 57 pounds)!!!!! He had a status

seizure. We adjusted the diet, lowering calorie intake. He lost 5 pounds

and is now 52 pounds. Much better. When he goes through a growth spurt, I

increase calories for only a short period of time to help him through these

times. Usually it occurs in the Fall for him.

Anne C

Lafayette, LA

July 8, 2001