Re: help!

[Guest guest]

The best " take-away " meal plan I have is for the

peanut butter cookies. 's on a 3.4 ratio/1100

calories/4 meals. The cookies are 10 g Simply Jif

peanut butter and 9 g melted butter mixed with a drop

of Stevia. Mix in 10 g beaten egg. Divide in 2

regular muffin tins or 4 mini muffin tins. Bake at

350 for 14-15 minutes. When you pull out of the oven,

you'll see a really bubbly mix. Relax. The butter

will absorb back into the cookies. Let them cool and

store them in the refrigerator. I usually make 3-6

" meals " at a time. 's cookies are served with 38

g of 36% cream, diluted to make " milk. " (NOTE: I

split this meal plan so she has a morning snack at

school and then an afternoon snack.)

I do have to say that the times she has meals planned

seem a bit odd. That's a very long time between

dinner and the morning's breakfast. has

breakfast around 6:30 to 7 a.m. Snack at about 9:30

to 10 a.m. Lunch at 11:30 to noon. After-school

snack between 3 and 3:30 p.m. Dinner at 6:30 to 7

p.m. Sometimes I'll give her her free macademia nuts

right before bedtime.

I think it's very wise to split into smaller meals.

My personal opinion is that this doesn't have much to

do with the ketones -- more with leveling out blood

sugar -- which is why I'd be concerned about that

early dinner time.

Good luck!--D

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. " -- Mother Theresa

__________________________________________________

[Guest guest]

One of our best take away meals is cold chicken or steak, butter and ranch dressing as dip and veggies(we use peppers and cucumbers's - you get alot) and then I pack a cold pack with some "ice cream" . Works well, Brittany will even take that to school . It also looks very "normal" !! We also have one meal that we use in a pinch- macadamia nuts, butter , bacon and small amt of fruit. It is not a great nutrition meal but works at those times when nothing else will. Brittany loves it- we are at 2.7:1 now but at higher ratios we melted the butter onto the macadamia nuts before we went out and called it macadamia butter crunch.

[Guest guest]

Janice

When Savanna started the diet she was on Depakote, after about 6 months on the diet without a decrease in meds she suddenly started having seizures(she had been seizure free within one week of starting the diet). Her doctor insisted on increasing the meds which only made it worse. It wasn't until we decreased meds that we had seizure-free status again.

Kathy/WI

[Guest guest]

Janice and

I dont have any majic answers I just want to say our prayers are with you! You do have to weigh the good and the bad and just make decisions from there sometimes.

Our Prayers are With You

Thereasa and Tyler

[Guest guest]

---Janice, I am so sorry to hear about the bad time is

having, how hard it must be for you. How long has she been on the

diet? I wish I could help, all I can say is that the diet for us has

been a quality of life decision. My son Blair has not ever achieved

sz free although he has been on the diet for over 2 years but the

quality of his life has improved though due to the reduction in meds.

I would sit down and as " objectively as possiable " write down each

plus and minus of the diet for , each child and situation is

different. What is worse, seizing or screaming in pain? This may give

you some help in future decisions.

Best of luck,

Jill, Blair's mom In ketogenic@y..., " Janice "

<cpfamily@m...> wrote:

> Hi all

>

> My almost 6-year-old , started the keto diet 6 months ago.

I don't know WHAT'S HAPPENING to my baby !!!! She started to cry

within a few days of starting the diet and it has just gotten worse

and worse. She is now screaming day and night. She seems to be in

the most distressing pain or something.

>

> She started at 4:1, had difficulty maintaining ketosis, went to

5:1. Put on too much weight, and then was constantly at VERY high

ketone levels. Went down to 4:1 again, and a lower calorie intake,

and is now to 3.5:1.

>

> She was on Depakote, which was reduced at the start of the diet.

She seems to react severely to even the slightest reduction in

Depakote, and yet I am sure that the Depakote is INTERFERING with the

diet. Although the doctor doesn't agree, I am still sure of it.

>

> She has started having horrible seizure activity - not like before

the diet, where she had grand mals, and constant visible myoclonic

jerking, BUT rather constant screaming and discomfort and I know

it's " sub-clinical seizures " , if you wish to call it that.

>

> It built up so much that on the weekend she DID have a visible

focal seizure, and thereafter the screaming has continued. I KNOW

she's having seizure activity " inside " .

>

> Due to her weight increase, she HAS had a natural " reduction " in

the Depakote. WHAT TO DO ?! On the one hand, I feel she needs more

Depakote, on the other hand I wish she could come off the drug

altogether.

>

> Why do I ask your advice as opposed to the doctor's? Because I

never feel satisfied with the doctor's advice. He insists Jess is

having acidic reflux, he has put her on medication for this and it's

made no difference. He sent her for ultra-sounds for kidney stones -

there are no kidney stones.

>

> He insists that if she is not having visible grand mal seizures,

then the keto diet is obviously working for her.

>

> But I am the mom and I KNOW something's dreadfully wrong. Every

time she passes stool (since being on the diet) she screams with

pain, I cannot even clean her normally, and have to shower her down

in the bath. She seems to have so much " acid " in her I'm sure it's

burning the anal area. The doctor disagrees.

>

> I KNOW she's also having seizure activity. The doctor disagrees.

EEG's are difficult because the 15 minute one never shows much, and

the 24 hour one is impossible with Jess as she keeps pulling all the

plugs off her head.

>

> WHAT COULD IT BE ??!! Why is my baby screaming so much. I am so

frantic and in pain WITH her, I want to just discontinue the diet

immediately. The doctor says I should be more patient.

>

> I know you can't see Jess or anything, but off the top of your

heads, any ideas ??

>

> Many many thanks

> Janice (S Africa), mom to - 6 year old, cp, seizure

disorder, optic atrophy.

[Guest guest]

Janice,

I am so sorry about the problems is having.

Something we had to do while weaning depakote

was to reduce the ratio as well. I know it sounds

strange but with each drop in the dep dose, we had to

go down on the ratio slowly (no more than 0.2 at a time

mostly 0.1), otherwise Rohan seemed to ketotic even

though his ketones have never been v.high. Rohan

has more sz on higher ketones. He also has almost

continuous subclinical sz activity on his EEGs.

Generally he does better on low-moderate ketones

so is on a low ratio. Just wondered whether it is the

case with you daughter too.

Re. the carnitine- both this diet and depakote deplete

carnitine. Blood checks showed that my son was v.low

and we got a prescription from the dr. for L-carnitor.

Recently we found that his slowness in doing things

vanished with supplementing carnitine.

The effects of reducing depakote also stay on much

longer than the docs say.

Hope things get better soon.

Saro.........Rohan's mum

jilll@... wrote:

> ---Janice, I am so sorry to hear about the bad time is

> having, how hard it must be for you. How long has she been on the

> diet? I wish I could help, all I can say is that the diet for us has

> been a quality of life decision. My son Blair has not ever achieved

> sz free although he has been on the diet for over 2 years but the

> quality of his life has improved though due to the reduction in meds.

> I would sit down and as " objectively as possiable " write down each

> plus and minus of the diet for , each child and situation is

> different. What is worse, seizing or screaming in pain? This may give

> you some help in future decisions.

> Best of luck,

> Jill, Blair's mom In ketogenic@y..., " Janice "

> <cpfamily@m...> wrote:

> > Hi all

> >

> > My almost 6-year-old , started the keto diet 6 months ago.

> I don't know WHAT'S HAPPENING to my baby !!!! She started to cry

> within a few days of starting the diet and it has just gotten worse

> and worse. She is now screaming day and night. She seems to be in

> the most distressing pain or something.

> >

> > She started at 4:1, had difficulty maintaining ketosis, went to

> 5:1. Put on too much weight, and then was constantly at VERY high

> ketone levels. Went down to 4:1 again, and a lower calorie intake,

> and is now to 3.5:1.

> >

> > She was on Depakote, which was reduced at the start of the diet.

> She seems to react severely to even the slightest reduction in

> Depakote, and yet I am sure that the Depakote is INTERFERING with the

> diet. Although the doctor doesn't agree, I am still sure of it.

> >

> > She has started having horrible seizure activity - not like before

> the diet, where she had grand mals, and constant visible myoclonic

> jerking, BUT rather constant screaming and discomfort and I know

> it's " sub-clinical seizures " , if you wish to call it that.

> >

> > It built up so much that on the weekend she DID have a visible

> focal seizure, and thereafter the screaming has continued. I KNOW

> she's having seizure activity " inside " .

> >

> > Due to her weight increase, she HAS had a natural " reduction " in

> the Depakote. WHAT TO DO ?! On the one hand, I feel she needs more

> Depakote, on the other hand I wish she could come off the drug

> altogether.

> >

> > Why do I ask your advice as opposed to the doctor's? Because I

> never feel satisfied with the doctor's advice. He insists Jess is

> having acidic reflux, he has put her on medication for this and it's

> made no difference. He sent her for ultra-sounds for kidney stones -

> there are no kidney stones.

> >

> > He insists that if she is not having visible grand mal seizures,

> then the keto diet is obviously working for her.

> >

> > But I am the mom and I KNOW something's dreadfully wrong. Every

> time she passes stool (since being on the diet) she screams with

> pain, I cannot even clean her normally, and have to shower her down

> in the bath. She seems to have so much " acid " in her I'm sure it's

> burning the anal area. The doctor disagrees.

> >

> > I KNOW she's also having seizure activity. The doctor disagrees.

> EEG's are difficult because the 15 minute one never shows much, and

> the 24 hour one is impossible with Jess as she keeps pulling all the

> plugs off her head.

> >

> > WHAT COULD IT BE ??!! Why is my baby screaming so much. I am so

> frantic and in pain WITH her, I want to just discontinue the diet

> immediately. The doctor says I should be more patient.

> >

> > I know you can't see Jess or anything, but off the top of your

> heads, any ideas ??

> >

> > Many many thanks

> > Janice (S Africa), mom to - 6 year old, cp, seizure

> disorder, optic atrophy.

>

>

>

[Guest guest]

Hi Sheri

Thank you for the encouragement. And all the best to you and Tyler.

Love Janice and Jessy

Re: Help!

> Janice,

>

> So sorry to hear you're going through all this. The

> diet didn't work for us the first time we tried it

> either -- at a local hospital near us. Great hospital

> - just not experts in the keto diet. When we decided

> it just wasn't worth it, we just went off. I don't

> know that I'd recommend it, but maybe just going off

> but not introducing a lot of carbs yet...

>

> You might want to think about trying it at Hopkins.

> That's where we were going to get a second opinion on

> surgery (only alternative left) and they suggested we

> try the diet again. Since Tyler got sick off of it

> the first time, I really didn't think it would work,

> but it has. He's been on it since 5/00 and no

> seizures and no meds. He's gained weight and gotten

> his " mind " back. So hang in there. Does sound like

> you need to stop for now but don't give up on the diet

> if you haven't tried Hopkins.

>

> Sheri

>

> --- Janice wrote:

> > Hi all

> >

> > Can anyone help with advice on discontuing with the

> > keto diet. I KNOW, I know, you're probably all

> > thinking I should give it more of a chance.

> >

> > My six year old Jessy has been on the diet for 6

> > months now. She has not stopped crying and

> > screaming since the first week on the diet. We

> > started on a 4:1 ratio. Difficulty maintaining

> > ketones high enough, we went to a 5:1. Then ketones

> > being sky-high, we went back to 4:1. She has

> > suffered continually with acidic problems. We

> > eventually went to a 3.5:1, and then to a 3:1.

> >

> > Still she has aciditidy, she is not coping with the

> > food. No matter what foods, what meals, what

> > ratio's.

> >

> > She SCREAMS HYSTERICALLY with every passing of urine

> > and stool. The acidity is shocking. She has been

> > on many drugs, under the doctor's advice, to deal

> > with the acidity, but nothing has helped. She's

> > been tested for kidney stones - negative.

> >

> > She has put on too much weight and become less

> > mobile. We have lowered calories a number of times,

> > but she has not lost the weight.

> >

> > Her seizures do seem to be fewer, and less violent.

> > But my husband and myself feel it is not worth this

> > terribly, horrifying distress she is in constantly.

> >

> > She is also vomiting a lot, and developing reflux in

> > the process.

> >

> > Perhaps in time we'll go back to the diet. I don't

> > know.

> >

> > For now we're taking her off the diet.

> >

> > HOW DO I DO THIS ??? Do I do it slowly, go to a

> > 2:1 first, then a 1:1 - is there such a thing? How

> > much time must I do it over?

> >

> > Or do I just stop straight away?

> >

> > PLEASE HELP!

> >

> > Thank you so much

> > Janice

> >

>

>

> __________________________________________________

>

[Guest guest]

Janice -- So sorry you've had such a difficult time

with this. I remember how you struggled in the

beginning with the decision to do the diet. If it

were me weaning off the diet, I think I'd go down to

2.5 for 3-4 days, then to 2.0 and so on by .5.

Perhaps somewhere down the way, you'll find some

relief, but hopefully this will give her a gentle wean

off the diet rather than a " shock " -- more than the

shock her system has already had. I wish you all the

best. Good luck!--D

--- Janice wrote:

> Hi all

>

> Can anyone help with advice on discontuing with the

> keto diet. I KNOW, I know, you're probably all

> thinking I should give it more of a chance.

>

> My six year old Jessy has been on the diet for 6

> months now. She has not stopped crying and

> screaming since the first week on the diet. We

> started on a 4:1 ratio. Difficulty maintaining

> ketones high enough, we went to a 5:1. Then ketones

> being sky-high, we went back to 4:1. She has

> suffered continually with acidic problems. We

> eventually went to a 3.5:1, and then to a 3:1.

>

> Still she has aciditidy, she is not coping with the

> food. No matter what foods, what meals, what

> ratio's.

>

> She SCREAMS HYSTERICALLY with every passing of urine

> and stool. The acidity is shocking. She has been

> on many drugs, under the doctor's advice, to deal

> with the acidity, but nothing has helped. She's

> been tested for kidney stones - negative.

>

> She has put on too much weight and become less

> mobile. We have lowered calories a number of times,

> but she has not lost the weight.

>

> Her seizures do seem to be fewer, and less violent.

> But my husband and myself feel it is not worth this

> terribly, horrifying distress she is in constantly.

>

> She is also vomiting a lot, and developing reflux in

> the process.

>

> Perhaps in time we'll go back to the diet. I don't

> know.

>

> For now we're taking her off the diet.

>

> HOW DO I DO THIS ??? Do I do it slowly, go to a

> 2:1 first, then a 1:1 - is there such a thing? How

> much time must I do it over?

>

> Or do I just stop straight away?

>

> PLEASE HELP!

>

> Thank you so much

> Janice

>

__________________________________________________

[Guest guest]

It sounds like a good idea to try and stop the diet. I would drop ratio sort of slowly, like you're saying....maybe 2.5 for a few days, then 2.0, then 1.5, then 1.0, etc. Give each change a week or so if you can stand it and that way if seizures are going to go crazy you'll know and you can take things more slowly. Hopkins told me another way to go off quickly would be to stop weighing food, just eyeball meals, and slowly add more carbs, but with plenty of fat. For instance, french fries, potatoes w/ lots of butter, etc.

Maybe try and Adkins version of the diet which is less rigid, but helps some kids?

Barb Swoyer, Jake's mom

For now we're taking her off the diet.

HOW DO I DO THIS ??? Do I do it slowly, go to a 2:1 first, then a 1:1 - is there such a thing? How much time must I do it over?

Or do I just stop straight away?

PLEASE HELP!

Thank you so much

Janice

[Guest guest]

Janice,

So sorry to hear you're going through all this. The

diet didn't work for us the first time we tried it

either -- at a local hospital near us. Great hospital

- just not experts in the keto diet. When we decided

it just wasn't worth it, we just went off. I don't

know that I'd recommend it, but maybe just going off

but not introducing a lot of carbs yet...

You might want to think about trying it at Hopkins.

That's where we were going to get a second opinion on

surgery (only alternative left) and they suggested we

try the diet again. Since Tyler got sick off of it

the first time, I really didn't think it would work,

but it has. He's been on it since 5/00 and no

seizures and no meds. He's gained weight and gotten

his " mind " back. So hang in there. Does sound like

you need to stop for now but don't give up on the diet

if you haven't tried Hopkins.

Sheri

--- Janice wrote:

> Hi all

>

> Can anyone help with advice on discontuing with the

> keto diet. I KNOW, I know, you're probably all

> thinking I should give it more of a chance.

>

> My six year old Jessy has been on the diet for 6

> months now. She has not stopped crying and

> screaming since the first week on the diet. We

> started on a 4:1 ratio. Difficulty maintaining

> ketones high enough, we went to a 5:1. Then ketones

> being sky-high, we went back to 4:1. She has

> suffered continually with acidic problems. We

> eventually went to a 3.5:1, and then to a 3:1.

>

> Still she has aciditidy, she is not coping with the

> food. No matter what foods, what meals, what

> ratio's.

>

> She SCREAMS HYSTERICALLY with every passing of urine

> and stool. The acidity is shocking. She has been

> on many drugs, under the doctor's advice, to deal

> with the acidity, but nothing has helped. She's

> been tested for kidney stones - negative.

>

> She has put on too much weight and become less

> mobile. We have lowered calories a number of times,

> but she has not lost the weight.

>

> Her seizures do seem to be fewer, and less violent.

> But my husband and myself feel it is not worth this

> terribly, horrifying distress she is in constantly.

>

> She is also vomiting a lot, and developing reflux in

> the process.

>

> Perhaps in time we'll go back to the diet. I don't

> know.

>

> For now we're taking her off the diet.

>

> HOW DO I DO THIS ??? Do I do it slowly, go to a

> 2:1 first, then a 1:1 - is there such a thing? How

> much time must I do it over?

>

> Or do I just stop straight away?

>

> PLEASE HELP!

>

> Thank you so much

> Janice

>

__________________________________________________

[Guest guest]

What are you currently doing? (ie - diet, supplements, enzymes etc.)

Subject: Help!To: mb12 valtrex Date: Thursday, June 25, 2009, 3:00 AM

Hi Everyone,I have a few questions I'm hoping someone can help me with. My 4 year old son just finished his first year of prek. We are having many issues with stimming and OCD behaviour. he takes strings of any kind and pulls them over door knobs to form a straight line. if you try to interupt this at all he throws a massive tantrum. also dumping liquids out of any cup her sees , coffee etc and massive paper eating and chewing on EVERYTHING. Sometimes he wakes up in the moring and bounds out of bed and starts opeing and slamming his closet doors over and over. He has made huge strides in speech over the past year and is doing really well but the behaviours seem to be getting worse and I dont know what to do to help his concentration level. One of his major issues in school was concentration and being able to stay on task with out wandering off or the teachers having to prompt him for everything. Does anyone have any suggestions? He was

on a probiotic before but he seemed to go crazy after starting it.. Any suggestions would be much appreciated! !!!!thanks, mother to Christian, 4yr old with ASD

[Guest guest]

I'm not sure if you are GFCF or not... My son lost his ocd behaviors soon after

going gfcf, but they came back a little only when he went allergic to other

foods. So, if you are not gfcf, you might think about it.. If you are gfcf, you

might think about having your wee one tested for food allergies. I also agree

with the PANDAs comment below. check it out. My son has/had strep and we believe

that could have had something to do with his ocd issues. but we have been able

to control them with diet... so who knows. white light to you.

>

> Hi Everyone,

>

>

>

> I have a few questions I'm hoping someone can help me with.

> My 4 year old son just finished his first year of prek. We are having many

issues with stimming and OCD behaviour. he takes strings of any kind and pulls

them over door knobs to form a straight line. if you try to interupt this at all

he throws a massive tantrum. also dumping liquids out of any cup her sees ,

coffee etc and massive paper eating and chewing on EVERYTHING. Sometimes he

wakes up in the moring and bounds out of bed and starts opeing and slamming his

closet doors over and over. He has made huge strides in speech over the past

year and is doing really well but the behaviours seem to be getting worse and I

dont know what to do to help his concentration level. One of his major issues in

school was concentration and being able to stay on task with out wandering off

or the teachers having to prompt him for everything. Does anyone have any

suggestions? He was on a probiotic before but he seemed to go crazy after

starting it.. Any suggestions would be much appreciated!!!!!

>

>

>

> thanks

>

> , mother to Christian, 4yr old with ASD

>