Re: Re: Intractable seizures?Kathy

[Guest guest]

Laurie

my suggestion is to be put the diet back exactly where it was when it

was working. Then work on sloooowly reducing meds. From what I hear,

Klonopin can be a bastard (sorry for the language, but seems to express

it the best) to wean, its highly addicitive. But for the klonopin, I

would have said to try getting rid of pheno first. But.........do you

now have an experienced, good keto team? At any rate, put the diet back

to where it was working, ensure that ALL carbs from the meds are

calculated in, some teams don't do that and it needs to be done. Sounds

like you need to stablize ketones a bit.

Thats the best I got.......except I don't doubt for a minute that the

drugs are working against seizure control

, 's mom

peteymedic1 wrote:

> Insight....thanks for your being there for me...BY the way we see no

> more friends anymore, family hardly ever call and all we have is the

> therapists..and this keto group. because no one wants to see a

> seizing baby.

> Logan started in Aug 03 great start. He had 6 weeks no seizures and

> topamax was reduced from 475 to 300. In 1 week he started eating well

> and playing better. The dietitian was unavailable. We were on our

> own. We made some fine tuning and reduced med (neuro direction) and

> did ok. Except with every med reduction, Logan would have seizures 2

> days later. The he was med free and seizure free. Then we really

> messed up. We changed the meals to 5 instead of 4 and all went out of

> control. Over those 3 months he gained 2 pounds. We started to cut

> back calories but it didn't work. December was a night mare with

> trips to the ER and 1 week in PICU. We restarted the diet. Still too

> many calories and seizures came back. That brings us to January. We

> started with a new neuro and a dietitian. Logan was put on Phenobarb

> and too many calories. He gained 1 pound in 9 days and had many

> seizures. We did alot of finetuning with the dietitian...No carbs in

> the form of fruits and veg. He is down to 2 1/2 meals instead of

> 4meals. He went 10 days no seizures adn then started again. That is

> where we are now. The neuroA started him on Klonopin and said he is

> running out of options. It isn't working. This week he has had

> diatat, ativan and noe klonopin out of desperation to stop the

> seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc,

> phenobarb30/45). Any thing you can think of???Thanks....Laurie

>

[Guest guest]

Laurie

my suggestion is to be put the diet back exactly where it was when it

was working. Then work on sloooowly reducing meds. From what I hear,

Klonopin can be a bastard (sorry for the language, but seems to express

it the best) to wean, its highly addicitive. But for the klonopin, I

would have said to try getting rid of pheno first. But.........do you

now have an experienced, good keto team? At any rate, put the diet back

to where it was working, ensure that ALL carbs from the meds are

calculated in, some teams don't do that and it needs to be done. Sounds

like you need to stablize ketones a bit.

Thats the best I got.......except I don't doubt for a minute that the

drugs are working against seizure control

, 's mom

peteymedic1 wrote:

> Insight....thanks for your being there for me...BY the way we see no

> more friends anymore, family hardly ever call and all we have is the

> therapists..and this keto group. because no one wants to see a

> seizing baby.

> Logan started in Aug 03 great start. He had 6 weeks no seizures and

> topamax was reduced from 475 to 300. In 1 week he started eating well

> and playing better. The dietitian was unavailable. We were on our

> own. We made some fine tuning and reduced med (neuro direction) and

> did ok. Except with every med reduction, Logan would have seizures 2

> days later. The he was med free and seizure free. Then we really

> messed up. We changed the meals to 5 instead of 4 and all went out of

> control. Over those 3 months he gained 2 pounds. We started to cut

> back calories but it didn't work. December was a night mare with

> trips to the ER and 1 week in PICU. We restarted the diet. Still too

> many calories and seizures came back. That brings us to January. We

> started with a new neuro and a dietitian. Logan was put on Phenobarb

> and too many calories. He gained 1 pound in 9 days and had many

> seizures. We did alot of finetuning with the dietitian...No carbs in

> the form of fruits and veg. He is down to 2 1/2 meals instead of

> 4meals. He went 10 days no seizures adn then started again. That is

> where we are now. The neuroA started him on Klonopin and said he is

> running out of options. It isn't working. This week he has had

> diatat, ativan and noe klonopin out of desperation to stop the

> seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc,

> phenobarb30/45). Any thing you can think of???Thanks....Laurie

>

[Guest guest]

Laurie

my suggestion is to be put the diet back exactly where it was when it

was working. Then work on sloooowly reducing meds. From what I hear,

Klonopin can be a bastard (sorry for the language, but seems to express

it the best) to wean, its highly addicitive. But for the klonopin, I

would have said to try getting rid of pheno first. But.........do you

now have an experienced, good keto team? At any rate, put the diet back

to where it was working, ensure that ALL carbs from the meds are

calculated in, some teams don't do that and it needs to be done. Sounds

like you need to stablize ketones a bit.

Thats the best I got.......except I don't doubt for a minute that the

drugs are working against seizure control

, 's mom

peteymedic1 wrote:

> Insight....thanks for your being there for me...BY the way we see no

> more friends anymore, family hardly ever call and all we have is the

> therapists..and this keto group. because no one wants to see a

> seizing baby.

> Logan started in Aug 03 great start. He had 6 weeks no seizures and

> topamax was reduced from 475 to 300. In 1 week he started eating well

> and playing better. The dietitian was unavailable. We were on our

> own. We made some fine tuning and reduced med (neuro direction) and

> did ok. Except with every med reduction, Logan would have seizures 2

> days later. The he was med free and seizure free. Then we really

> messed up. We changed the meals to 5 instead of 4 and all went out of

> control. Over those 3 months he gained 2 pounds. We started to cut

> back calories but it didn't work. December was a night mare with

> trips to the ER and 1 week in PICU. We restarted the diet. Still too

> many calories and seizures came back. That brings us to January. We

> started with a new neuro and a dietitian. Logan was put on Phenobarb

> and too many calories. He gained 1 pound in 9 days and had many

> seizures. We did alot of finetuning with the dietitian...No carbs in

> the form of fruits and veg. He is down to 2 1/2 meals instead of

> 4meals. He went 10 days no seizures adn then started again. That is

> where we are now. The neuroA started him on Klonopin and said he is

> running out of options. It isn't working. This week he has had

> diatat, ativan and noe klonopin out of desperation to stop the

> seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc,

> phenobarb30/45). Any thing you can think of???Thanks....Laurie

>

[Guest guest]

Laurie,

So near and yet so far. It is so frustrating, I know. If you were

seizure free and med free, you have a chance of getting back there. You

were on topamax plus the diet. This is a difficult combination as both

of these affect the acidity of the blood and possibly seizure control in

a similar manner. It may have been that this caused you to be thrown off

of seizure control when you weaned the topomax. Without topomax, you may

need a higher ratio to get seizure control.

Getting the right level of calories is so tricky, but so important. It

requires accurate measurements, complete records and extreme patience.

Not to mention that mistakes are so easy to make with so many things to

have to consider.

You must be on a very high ratio since you have no fruits and

vegetables. Make sure that you are supplementing with adequate vitamins

and minerals. Constipation must be a concern too. Maybe add fibre and a

little extra water, but spread out evenly over the day.

I don't quite understand changing from 4 meals to 2 1/2 meals a day.

Usually it is better to spread the meals out well over the day.

By this time, you should have a very good idea of how many calories to

be using. You shouldn't be seeing a weight gain of 1 pound in 9 days.

Something is really out of whack there. Look carefully for errors in the

menus or calculations.

Try to keep off the medications as much as possible so that the diet can

be fine tuned. If the medications aren't stopping the seizures they

could be causing them.

If your friends and family aren't calling, then you should call them.

Bill

peteymedic1 wrote:

> Insight....thanks for your being there for me...BY the way we see no

> more friends anymore, family hardly ever call and all we have is the

> therapists..and this keto group. because no one wants to see a

> seizing baby.

> Logan started in Aug 03 great start. He had 6 weeks no seizures and

> topamax was reduced from 475 to 300. In 1 week he started eating well

> and playing better. The dietitian was unavailable. We were on our

> own. We made some fine tuning and reduced med (neuro direction) and

> did ok. Except with every med reduction, Logan would have seizures 2

> days later. The he was med free and seizure free. Then we really

> messed up. We changed the meals to 5 instead of 4 and all went out of

> control. Over those 3 months he gained 2 pounds. We started to cut

> back calories but it didn't work. December was a night mare with

> trips to the ER and 1 week in PICU. We restarted the diet. Still too

> many calories and seizures came back. That brings us to January. We

> started with a new neuro and a dietitian. Logan was put on Phenobarb

> and too many calories. He gained 1 pound in 9 days and had many

> seizures. We did alot of finetuning with the dietitian...No carbs in

> the form of fruits and veg. He is down to 2 1/2 meals instead of

> 4meals. He went 10 days no seizures adn then started again. That is

> where we are now. The neuroA started him on Klonopin and said he is

> running out of options. It isn't working. This week he has had

> diatat, ativan and noe klonopin out of desperation to stop the

> seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc,

> phenobarb30/45). Any thing you can think of???Thanks....Laurie

>

>

> -- In ketogenic , kathy j irwin <kathyirwin@j...> wrote:

>

>>Laurie - has partial complex seizures. We went through the

>

> drug

>

>>store to, with no avail. The diet has been our miracle, yet we

>

> don't

>

>>have complete control (but ~ 95% improvement since the diet).

>

> We've been

>

>>on the diet for 4 years. Don't lose hope -- keep searching, trying,

>>asking, but never give up. You can't. How long did you try the

>

> diet?

>

>>What ratios? Give us some insight.

>>Kathy

>>On Sun, 22 Feb 2004 02:50:53 -0000 " peteymedic1 " <peteymedic@h...>

>>writes:

>>

>>>Does any one have a child with intractable seizures? Complex

>>

> partial

>

>>>or simple partial? We have been thru 8 meds and have had up and

>>

> down

>

>>>success with the diet. We have had med free and seizure free. But

>>>when the seizures come back...meds are added again. This viscious

>>>cycle almost seems to be the cause. It seems we are running out

>>

> of

>

>>>options. The 9th(out of 10) Neuro told us this the other day. We

>>>have

>>>2 neuros presently. Logan was born normal. The seizures started

>>

> at 6

>

>>>months old. So, are we supposed to just stand by and watch him

>>>suffer

>>>from the seizues and horrible meds. We are losing hope. Does

>>

> anyone

>

>>>have any other ideas or things that they have tried? I cannot see

>>>when in the 21st century that we can't help him.

>>>I am gratful for anyone's advise.

>>>Laurie mom to Logan(2)

>>>

>>>

>>>

>>>