Re: starting medication again

[Guest guest]

Kathy,

Are you quite sure lin is not still having withdrawl seizures, which it

appears can go on for ages when on the diet at the same time. If you start

him on a new med now, you may never know. What a horrible decision to make.

If his ketones are that high all the time, maybe a lower ratio might improve

control. Thing is, once you introduce a new med, all the finetuning will be

so much harder, as we are finding out!!!

Good luck,

Hill

starting medication again

> lin has been on the ketogenic diet now for approx. 2 months and

> previous to that he was on the atkins diet for approx. 2 months. He is on

> no medication right now as we started the Atkins diet while on topamax and

> weaned it quickly because he was having huge side effects. After weaning

> the topamax, lin was having 5 - 10 seizures a day. We decided to

> switch to the ketogenic diet and see if we could get them under control.

> Well things have just continued to get worse. He is now having anywhere

> from 15 - 40 drop seizures a day. We have lin on a 4:1 ratio and

have

> been so good about taking out any unknown factors. His ketones are

solidly

> in the 80 - 160 range and the seizures still continue. So even though

> lin feels really good and we have our little boy back with all his

> loving personality, we are going to have to start him on another drug.

This

> time it will be Keppra. Any side effects that you all have experienced

with

> Keppra? Anything different we should watch for while initiating a drug

and

> being on the ketogenic diet at the same time? Are there any pluses to

> actually being on the ketogenic diet at the same time as being on AEDs?

> Would a drug possibly be more successful while on the diet or less? We

> don't want to keep him on the diet if it is not helping and/or if it would

> make drugs have more side effects. The drugs are stress enough by

> themselves, do we need the stress of the diet at the same time? lin

> has been so good about eating whatever we give him and so compliant, if

only

> it had worked!!!

>

> thanks for any advice you all can pass on!

>

> Kathy (Mom to lin, 4 years old, idiopathic generalized epilepsy)

>

>

>

> " 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

>

>

>

>

[Guest guest]

Well, I was going to ask this question, too. I know

the neuro would say, " no " -- but I know 's

Lamictal withdrawl seizures lasted for at least 3

months. I also had another question -- if he was

doing reasonably well on Atkins, why, when going keto,

did he go all the way to 4.1? Some kids do better on

a much lower ratio. I know you've been through a lot

and don't want to add to your stress. . . but there

might be other options to consider if the Keppra

doesn't help. Good luck!--D

--- richard & susan hill

wrote:

> Kathy,

> Are you quite sure lin is not still having

> withdrawl seizures, which it

> appears can go on for ages when on the diet at the

> same time.

__________________________________________________

[Guest guest]

HI Joan, and DeEtte!

lin took the last of his topamax in November so its been almost 3

months now. The seizures have just continued to increase as the weeks go

by. Thats why we decided to go from the Atkins diet to the ketogenic diet

because his seizures kept increasing so we figured that the way to go was

with a stricter diet. But instead of the seizures decreasing, they just

keep steadly increasing. We added the MCT oil a few weeks ago because we

heard it would help keep the ketones up. Even at a 4:1 ratio, we have had

trouble keeping his ketones up at the 80+ range which is what I understood

was usually the best place for seizure control. So with the MCT oil and

being at a very strict 4:1 we have managed to keep his ketones up in the 80

- 160 range for the past two weeks. And the result has been, even more

seizures. How frustrating! Seems like no matter how we tweek, we get more

and more seizures. We are at the point now that he can barely even play

because he hates wearing his big helmet with the face plate and he has at

least one drop every 30 minutes. So we decided to give Keppra a try. We've

already been through lamictal, depakote, zonegran, klonopin and topamax with

no luck so the chances are slim but.... We started the Keppra last night

and will very very slowly increase it and see if it makes any difference. I

guess we can go down to a lower ratio on the diet and see if that helps

also. I know that I have read here that some children do better on a lower

ratio. We just couldn't keep tweeking the diet as the weeks go by and the

seizures increase. We are doing this diet by ourselves basically. Remember

we're the ones with the neuro that thinks the ketones are the only things

that matter and our dietician is worthless. I have read the ketogenic diet

book at least 4 times completely and go back to reference it all the time.

We are using the mealplanner and with help from you all, I really think we

are sticking to the diet rules quite well. I'm thinking we may have to go

off the diet and if Keppra doesn't help, then call Hopkins and see if

we can get in there. Its just a long way from Tulsa, OK... Just thinking

out loud here. Thanks everyone for your ideas!

Take care,

Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy)

>

> Reply-To: ketogenic

> Date: Sat, 9 Feb 2002 07:17:18 -0800 (PST)

> To: ketogenic

> Subject: Re: starting medication again

>

> Well, I was going to ask this question, too. I know

> the neuro would say, " no " -- but I know 's

> Lamictal withdrawl seizures lasted for at least 3

> months. I also had another question -- if he was

> doing reasonably well on Atkins, why, when going keto,

> did he go all the way to 4.1? Some kids do better on

> a much lower ratio. I know you've been through a lot

> and don't want to add to your stress. . . but there

> might be other options to consider if the Keppra

> doesn't help. Good luck!--D

>

> --- richard & susan hill

> wrote:

>> Kathy,

>> Are you quite sure lin is not still having

>> withdrawl seizures, which it

>> appears can go on for ages when on the diet at the

>> same time.

>

> __________________________________________________

>

[Guest guest]

Is this a special helmet? Mike wears one but it doesnt have a face

plate. This would come in very handy when we reduce meds and his seizures

increase and lately he has fallen on his face 3 times and knocked a front

tooth loose. If he stops falling on his face the tooth would have a chance

to tighten but the way things are going i think it will fall out soon.

Anyway - any info about the helmet you could give me would be greatly appreciated.

Thanks

Jenn

Kathy Greenwood wrote:

he can barely even play

because he hates wearing his big helmet with the face plate

[Guest guest]

Kathy,

How I wish I was more experienced in this to help you. Although we have been

at this since Sep, we have had so many hiccups with meds, illness, and now

recently weight gain, that we are only just settling enough to start fine

tuning in earnest.

does have pretty good control on the diet, he too used to have

sometimes 20 drop attacks a day, as well as the absences and myoclonic

jerks. Most of his seizures had gone by day 5 of the diet, but returned with

toxicity 2 weeks later. Once that had been resolved, they went again, except

for early morn sleep seizures.

You may find just one drug with the diet may do the trick, is still

on 3, so I have no idea yet whether he will be better off the meds

completely, or if we will also need one (or more) to stay.

Our neuro, too, thinks ketone levels are all that count re the success of

the diet, but he is learning along with us, that this is not the case. Found

out on Thurs, that he has not even read the 3rd edition of Freeman's book

yet, he asked

me what the pertinent changes were! Will your dietician email Hopkins for

you,or join the dietician web ring that was mentioned here last week?

The only other things I can think of are

a) rechecking ingredients in foods or supplements for 'seizure triggers',

eg, had a breakthrough seizure after having stevia that contained

maltodextrin

What are his height and weight like, lost control again recently,

we double checked his weight on the hospital scales, and found he had gained

2 pounds since Dec, we think due to a new med he was put on. He is slowly

losing weight, we hope to get him down to the 50th percentile, or at least

the 75th percentile, where he used to be, on the stature chart by

temporarily reducing his calorie intake, and encouraging very moderate

excercise. Touch wood, no day seizures (that we can see anyway) for about 10

days now, so I think we're on the right track.

Don't know anything about keppra, it's one med has not tried yet!

Hope it helps, at least until you can get some more help re the diet from

perhaps Hopkins, or at least a 'keto team' that could work through this with

you,

Hill, mother to 5, 7, and 23 mths

Re: starting medication again

> >

> > Well, I was going to ask this question, too. I know

> > the neuro would say, " no " -- but I know 's

> > Lamictal withdrawl seizures lasted for at least 3

> > months. I also had another question -- if he was

> > doing reasonably well on Atkins, why, when going keto,

> > did he go all the way to 4.1? Some kids do better on

> > a much lower ratio. I know you've been through a lot

> > and don't want to add to your stress. . . but there

> > might be other options to consider if the Keppra

> > doesn't help. Good luck!--D

> >

> > --- richard & susan hill

> > wrote:

> >> Kathy,

> >> Are you quite sure lin is not still having

> >> withdrawl seizures, which it

> >> appears can go on for ages when on the diet at the

> >> same time.

> >

> > __________________________________________________

> >

[Guest guest]

Have you tried some of the " alternaive or complementary " supplements.

When I increased Jens mag & added taurine we had improvement. Are you

on Epilepsycured? If not join -you will learn alot.

Joan

[Guest guest]

Yes I am on the epilepsycured list, set for digest so I can skim through it.

I also have the Prescription for Natural Healing book and basically put

lin on all the supplements that they describe as essential. They did

not help. I cut them all out except for the calcium, magnesium, multi-vit,

vit E and vit C, just in case one of them was a seizure trigger but again,

made no difference either way. I may try adding back the taurine but not

the l-tyrosine and the l-carnitine since they can be suspects. Took

lin to an accupuncturist twice. The first time she just massaged him.

The second time she put tacks in his pressure points (back, feet, hands).

She is leading up to the actual needles but lin is such a wiggle worm

on the table that I don't know if we'll ever be able to get to that.

take care,

Kathy

>

> Reply-To: ketogenic

> Date: Sun, 10 Feb 2002 14:45:21 -0000

> To: ketogenic

> Subject: Re: starting medication again

>

> Have you tried some of the " alternaive or complementary " supplements.

> When I increased Jens mag & added taurine we had improvement. Are you

> on Epilepsycured? If not join -you will learn alot.

>

> Joan

>

>

>

>

>

>

>

>

>

> " 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

>

>

>

>

[Guest guest]

The type of helmet lin has is made by Danmar. I think I found their web site one time. They make helmets and other equiptment for people with disabilities. They custom fit the helmets so we had to take lin to a person that our neuro sent us to that fits wheelchairs and things like that for children. Our insurance paid for the helmet. Good thing since it was about $200. The helmet is very heavy though. It would be great in theory though because it completely protects his head but so heavy and in the summer time it is like a greenhouse and gets unbearably hot. We also have a bicycle helmet for him which we bought at a ToysRUs store. It is super light and lin wears it 100% of the time unless he is sleeping. It protects his head but does nothing for his face of course. lin's front teeth are gray from hitting them so many times but luckily they are still in there. He also has a scar across his head from a big fall that cut him open so big that we ended up with stitches. These drop seizures are horrible!

take care,

Kathy

From: heppner1@...

Reply-To: ketogenic

Date: Sat, 09 Feb 2002 15:07:24 -0600

To: ketogenic

Subject: Re: starting medication again

Is this a special helmet? Mike wears one but it doesnt have a face plate. This would come in very handy when we reduce meds and his seizures increase and lately he has fallen on his face 3 times and knocked a front tooth loose. If he stops falling on his face the tooth would have a chance to tighten but the way things are going i think it will fall out soon. Anyway - any info about the helmet you could give me would be greatly appreciated.

Thanks

Jenn

Kathy Greenwood wrote:

he can barely even play

because he hates wearing his big helmet with the face plate

[Guest guest]

I can relate with the drop seizures - Mike keeps falling off chairs right

on his head - when I hear him and turn around he is straight up and down

- upside down! He just pushes himself over and gets up but I dont

know what I would do without his helmet.

I like the bike helmets as well but Mike is using a Martial arts helmet

right now - more ventelation (it has holes all over it and special places

for his ears so when he goes over on his side his ears are protected a

bit more.) Lately tho it would be great to get him one with a face

guard or something as he keeps hitting his face on things when he falls.

Anyway - thanks for the info on the helmet.

Jenn

Kathy Greenwood wrote:

The type of helmet lin has is made by Danmar.

I think I found their web site one time. They make helmets and other

equiptment for people with disabilities. They custom fit the helmets

so we had to take lin to a person that our neuro sent us to that fits

wheelchairs and things like that for children. Our insurance paid

for the helmet. Good thing since it was about $200. The helmet

is very heavy though. It would be great in theory though because

it completely protects his head but so heavy and in the summer time it

is like a greenhouse and gets unbearably hot. We also have a bicycle

helmet for him which we bought at a ToysRUs store. It is super light

and lin wears it 100% of the time unless he is sleeping. It

protects his head but does nothing for his face of course. lin's

front teeth are gray from hitting them so many times but luckily they are

still in there. He also has a scar across! his head from a big fall

that cut him open so big that we ended up with stitches. These drop

seizures are horrible!

take care,

Kathy

From: heppner1@...

Reply-To: ketogenic

Date: Sat, 09 Feb 2002 15:07:24 -0600

To: ketogenic

Subject: Re: starting medication again

Is this a special helmet? Mike wears one but it doesnt

have a face plate. This would come in very handy when we reduce meds and

his seizures increase and lately he has fallen on his face 3 times and

knocked a front tooth loose. If he stops falling on his face the tooth

would have a chance to tighten but the way things are going i think it

will fall out soon. Anyway - any info about the helmet you could give me

would be greatly appreciated.

Thanks

Jenn

Kathy Greenwood wrote:

he can barely even play

because he hates wearing his big helmet with the face plate

[Guest guest]

Hi Saro,

I think it means a lot when your son is old enough to be able to say, no

more drugs! lin is too young to know that I am spiking his liquid

calcium with Keppra every night. :-( We are on a very low dose, just

started it on Friday and I have already noticed him being a lot more weepy

than usual. And last night he had a nightmare that there was a mean rooster

in his bed (we have a farm)! I am thinking of taking him to another

Naturopathic Dr. that I found. I have the appt. made and now I'm just

working on talking my husband into it. Since insurance doesn't cover it and

hubby was laid off because of the airline industry cuts, its hard to find

the money. I keep thinking that the way to treat epilepsy is to discover

the cause rather than treat the symptoms but the big question is how to find

the cause!! This naturopathic dr has requested that I send all lin's

records to him so he can see what tests we have done so far. He may

recommend urine tests, stool tests and/or hair analysis. Has anyone else

tried these types of tests? Do you have Rohan on any types of supplements?

take care,

Kathy

Re: starting medication again

> Hi Kathy,

> I understand how you must feel. We have been trying

> various things on the diet for two years without much

> success. Rohan didn't do well (except a brief honeymoon

> on some) on 11 AEDs. He's one who does better on

> lower ratios. The number of sz are the same as when on

> drugs, but over the years the severity of them has increased

> and it is worse than ever now.

> I'd like to ask for another drug, maybe Keppra as a last

> resort- but Rohan's dead set against any more drugs!

> I must say I can't blame him when I think of the awful

> side effects he had. I wish someone could come up with

> a suggestion for us.

>

> Wish you and lin the best with your decision

> Saro....Rohan's mum

>

>

>

>

> " 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

>

>

>

>