Re: hard times. trying to work through this in my mind....

[Guest guest]

My husband and I talked about your situation and believe that you don't have

the best keto team working for you. The meds should be almost completely

weaned by the 10th week. It does sound like your son is toxic. We only had

to change our ration once and that was while we were still in the hospital,

so I can't give any advise there. But, our doctors did wean quickly as they

do with all their patients. They believe that the meds have to be gone to

see if the diet will work. I hope this helps. I do know that the people on

this forum helped us so much and as a mother of a 10 month seizure-free

medicine-free keto kid, I can tell you the advice you got from all these

people was good. You are in charge and you have to do what is best for your

son. Your doctors don't sound like they are much help. You have to tell

them what you want to do. Don't wait for them. You have to remember that you

pay them to advise you on the treatment for your son. Most doctors only know

how to treat patients with medicine. The ketogenic diet is foreign to some

doctors. It is up to you to learn and seek council on how to get the diet to

work for you and your son. The people on this list give pretty good advice,

we have been down this road of the diet many times and seen many things.

And, keep asking for advice on this forum. Don't do anything without asking

others if you should. You will get great help here.

Diane (Mother to 4-partial complex seizure disorder -Seizure free

since Dec. 2 and learning like crazy)

[Guest guest]

Wouldn't it be best to try...... even if you have to do it on your own..... to

drop that ratio down significantly and get him feeling better, then ease it on

up slowly if you need better ketones. You might be surprized at the ketones he

could still make on say.... maybe a 2.5:1 ratio. At least this would be worth a

try before giving up and resorting to surgery..... which may or may not be

successful. You are the parents...... YOU are in charge. Listen to your

instincts! I would think that you (and your son) will not make it through one

more month if it stays like this...... something has to change to allow him to

tolerate the food. After this much time, he should not be feeling nauseous.

Patti

hard times. trying to work through this in my mind....

Hi friends.. I'm pretty down. We had a terrible past 2 days/nights.

including last night - 12 seizures +.. we stopped counting after

awhile and today he has seized twice including once in the car. .........I

don't know - its all way too exhausting. Of course, he's still coming up w 160+

ketones so maybe he's just too ketotic, like you've said. I don't know how you

do it.

[Guest guest]

Anne

We basically went through hell first nine months of the diet. We had

immediate seizure control which was wonderful, but not really all that

motivating because could go up to six months without seizures

anyway. But it was a constant battle to get her to eat. We were on a

3.5:1 ratio and I sooooo dreaded mealtimes. After nine months of this,

she went on a food strike, completley stopped eating. Started making

herself very sick, she was constantly gagging even when not eating and

would throw up even water. Finally in desperation, we lowered ratio to

3:1 to incorporate starches and getting her eating again. I remember

the first meal had cheerios in it. I gave her one cheerio. Do you like

that ? Yes she did. I gave her one more cheerio. She was in

heaven, remember, this was 9 months with not a bite of starch. Then I

picked up a piece of cheese. You have to eat a piece of this before you

can have enough cheerio. She wasn't impressed but did it. Then another

piece of cheese and a cheerio (fortunately cheerios don't weigh much so

you can get a lot in a few grams). Then I told her she had to eat a

spoonful of dessert to get another one (the cream and oil whipped

together, sweetened and flavoured). This was always the hardest thing to

get into her. See the cheerio? Take a spoonful of dessert and you can

have 2 cheerios. Okay, I have bored you to death but you get the picture

I am sure LOL

For a long time I had to make her eat half her dessert, then give her

some of the starch and protien, then the rest of dessert and the

remaining starch and protien. Every meal had starch in it for about two

months - small amounts of whole wheat bread, a little boiled potato,

cheerios, pita bread used to make a pizza crust. Eventually I was able

to go to one meal a day with no starch (I needed to get her back to

fruits and veggies). Now she has one meal a day with starch,

occasionally two meals, but its not an issue to her. Some of her snacks

have starches too (we are on a 3.3:1 ratio now) like the whole wheat

bread or potato thin crackers.

I would bet a chunk of money on the fact that your son is too ketotic,

its why he won't eat and its probably the cause of his seizures.

Looking back on what happened to us now and now knowing what I

do.......we started the diet on depakote and although I thought at the

time it caused no problems for Jess, I know now that it in combination

with the diet probably caused her to be too ketotic and thats why eating

was such a battle. It was about six weeks after we weaned depakote she

went on eating strike, my geuss is that is when her body went really out

of whack and she went way over the edge.

I tell you this loooooooooong story for two reasons - to give you hope

and to tell you, yes, you have to drop the ratio. Was he a starch

monster before the diet?? Jess sure was. Toast, french fries,

spaghetti.......

Just noticed he is on depakote...............ding, ding, ding.....part

of your answer might be in working on weaning dep. Drs will likely

fight you all the way but we have seen it time after time on the list,

esp with depakote, it makes the kids way too ketotic and acidic. Trust

those who have walked the same steps before

, mom of (9), ketokid since 2/98

arwr12 wrote:

> Hi friends.. I'm pretty down. We had a terrible past 2 days/nights.

> including last night - 12 seizures +.. we stopped counting after

> awhile and today he has seized twice including once in the car. i was

> driving on the highway and he was sitting next to his 6 yo sister and

> grabbed her arm and bit her hard in the middle of the sz. She was

> devasted. I'm worried and battling him still every meal. I spent

> about 2 hours getting a chicken soup (all in one) ready yesterday and

> in the end he put the tiniest sip in his mouth and refused it over

> and over. Its enraging behavior but then who knows - he doesn't like

> ANYTHING.. so why should he like something with complex flavors? I

> don't know - its all way too exhausting. Of course, he's still

> coming up w 160+ ketones so maybe he's just too ketotic, like you've

> said. I don't know how you do it. I guess maybe you've had more

> results, and more rewards and more signs that tell you this is the

> way. We just haven't got anything solid yet, in fact things are as

> bad as they've ever been, worse. Anyway, I'm seeing the neuro

> tomorrow. 's dad is disgusted with the way things are going.

> Talking about quitting. I'm asking for one more month. I don't know

> how you got through all of this. :-( sorry for venting again, I hope

> I'm not pulling you down, because I know this diet works so well for

> some. And I'm so willing to do anything to make it work. Just don't

> know if it is possible. Of course the doctors/dietician have been

> suggesting that this isn't going to work ..now and before we even

> started... Ann (mom of sweet 10, complex partial, left

> frontal focus on 1350 Trileptal, 1125 Depakote, 3.5 ratio, starting

[Guest guest]

I wanted to reply back again, surgery was actually successful for us,

Dalton had a partial hemispherectomy at 3yrs old and was seizure free

for 5yrs. His seizures were triggored back by Ritalin, he had been

diagnosed repetetively with ADHD and though we had concerns with

medicating him the neuro's assured us he'd be OK. An hour into the

first pill he had a seizure and even though we immediately stopped

the med. he's been having them ever since. They suggested surgery

again and there's no way we agree to that we almost lost him the

first time and though it was successful myself and my husband

couldn't go through that again. His eyes afterwards were swollen

shut and he looked like he'd been beaten with a baseball bat, he'd

reach up and feel our faces so he'd know we were there. He had brain

swelling and went into uncontrollable seizures the day after the

first surgery so at 9:30pm we were rushed back in literally running

down the hall holding his bed as we were told to say our goodbyes.

Though we felt it was the best option then after doing it I would

never be able to repeat it knowing what could have happened. If

there was a day in my life I could take back, its the day we gave him

the Ritalin pill so the school could be happy.

Dalton is almost nine and he has no developemental delays, amazing

after all he's been through. They started him out on a 3:1 ratio and

now he's on 2.5:1, I wonder why they started your son so high. I

know when the ketosis is too high it can cause appetite suppression.

Our dietician has been doing this since before he had his first

surgery so five years or better and she makes weekly changes, she

says a week is long enough to see change and meds we do every two

weeks without diet changes at the same time. I wouldn't drop too

rapidly incase he were to fall completedly out of ketosis you

wouldn't want to go back to fasting stages again and it makes it

really hard for you to know where his ketones would be if he's not

eating all of his food. Will he eat sausage? That's one thing that

uses up alot of fat. Be strong and stand up for what you want, we're

a good example of the Dr.s not always being right. If you continue

to have problems with your dietician, I know ours has patients from

all over the world, I have an 800# if you're ever interested, she's

very supportive and I know she's taken patients who have tried the

diet elsewhere and not got success and turned things around for

them. They even have a keto newsletter and she's always positive in

making things work best for the kids and parents.

Jackie

[Guest guest]

JACKIE

WHEREIN FLORIDA DO YOU LIVE

WE GO TO ALL CHILDRENS IN ST PETES AND STARTED THE DIET THERE

WE ARE VERY PLEASED

WE WENT TO MIAMI CHILDRENS AND HAD A BAD EXPERIENCE THERE WITH DR RESNICK

SANDI

[Guest guest]

Ann,

might be too ketotic and that's why

he's refusing to eat. Some kids do better sz-wise

on lower ketones ie. lower ratio.

Try reducing the ratio if ketones are 160+ and

sz are happening. A quick (temporary) way

to reduce too high ketones is giving a bit of

orange or apple juice, specially if he has panting

breath and red cheeks etc.

Saro....mum to Rohan (13.5 yrs, on KGD from 02/00, med-free for 1.5 yrs,

but now on Diamox since 6/6/02)

[Guest guest]

> Thanks Jackie.. I'm going to print this out and show my husband and

> maybe the doctor.. would you mind sending me the doctor's name?You

> can do that privately if you'd like. Where do you live? - Ann

> PS. He won't eat sausage anymore or pepperoni which used to be his

> favorite thing in the world..

Ann,

We live in Florida and our Neuro is Dr. Carney with Shands Hospital.

We had surgery done at Miami Childrens and his Neuro there was Dr.

Resnick who I loved however Shands is an hour away and Miami is six

so we decided to do the diet through Shands and have been happy

there and I new that the dietician there was experienced because she

was the same one I had seen when my son was 3 pre surgery, we didn't

want to try diet then because they restricted fluids but since have

changed or we wouldn't have tried it this time, its so hot here and

when you're thirsty you're thirsty. I agree with everyone else here

in thinking your son is too high in ketosis, he should be hungry and

always anticipating his next meal my son is by no means starving but

he would never not want to eat his meal. If you can work down to a

lower ratio you also get alot more carb so if he likes potato chips

that helps.

Jackie

[Guest guest]

From: currierdee@...

>>>>The meds should be almost completely

weaned by the 10th week. <<<<

WOW! I'd love to get our neuro in touch with yours!! Here we are 10 MONTHS

into the diet and having trouble getting our team to agree that the meds should

go. The drugs never offered any control pre-diet; why would they now? We did

drop Keppra fairly significantly the first month due to obvious toxicity, and

now we see what our family believes to be residual toxicity signs. 's

balance remains abominable and she is lethargic much of the time. We would love

to see how well the diet can do without the confusion of drugs. We've been

creeping the meds down slowly on our own and I don't think the neuro is going to

be very happy about that when we meet with him in a few weeks. But our goal for

even starting the diet, equal to that of improving seizure control, was to get

our little girl off the horrendous volumes of medications she's been on for the

last three years.

Rose-Marie,

mom to (age 6)

[Guest guest]

> JACKIE

> WHEREIN FLORIDA DO YOU LIVE

> WE GO TO ALL CHILDRENS IN ST PETES AND STARTED THE DIET THERE

> WE ARE VERY PLEASED

> WE WENT TO MIAMI CHILDRENS AND HAD A BAD EXPERIENCE THERE WITH

DR RESNICK

> SANDI

We live in Wildwood, Ocala area. We weren't happy with some things

at Miami but there and Shands are the only hospitals that do the

brain surgery he had done. We have only seen Dr. Resnick once since

surgery, the main thing I liked about him is he always talked to us

directly instead of a nurse and he called back quickly. Shands has a

bad reputation in alot of areas but its so much closer, its in

Gainesville so anything thats not major we try to do there. We also

really liked Pat Dean in Miami, I don't know if you've ever met her

but she gets very personally involved with her patients. I think

they all have faults, all of them agreed it would be safe to give him

Ritalin and they were wrong, I'm just glad we waited and got 5

seizure free years, I guess thats something to be thankful for. I've

tried different Neuro's mainly over the Ritalin issue, I found it

irritating that they kept wanting to put him on it so I'd switch Dr.s

but we found none of the others understood his surgery and were

uncomfortable doing his check ups. Dr. Carney at Shands is Ok, he

just doesn't seem to have any personality, maybe he's that way to

keep himself detached from his patients, I just have always liked

someone to interact and seem like they care about my son. I have

family that live in the Bradenton area and that's were I went to high

school, its a small world. Are you getting good results from the

diet?

Jackie

[Guest guest]

Ann,

Have you gone done to 3:1 yet? I'd drop that ratio right away. Forget

waiting out the last drop. Sounds like his ketones are too high and he's

feeling yucky. Maybe even go back to 2:5 after a couple more days. What

have you got to lose at this point? I'd try it before you decide to quit.

Maybe you'll find a good balance in there somewhere. So sorry you're having

SUCH a hard time. Let us know what the doc says.