Meds or no meds... that's the question

[Guest guest]

Hi again!

Well, as you saw in the topic of this mail.. What do you think? With

the diet... meds or not meds?

What should I do?

is having many many seizures, he's on the diet, and according

to his keto team he's under-medicated. He's only taking 5 mgs of

Frisium at night...

He had/has a very bad reaction to the Lamictal... but it's about

time...

What do you think is more convinient, which was your experience with

meds and the diet? What would you do?

Considering that:

1.- It has been 3 months since we started the diet.

2.- At one point we gained some control although never seizure -free

3.- We had to wean Zarontin because of toxicity issues (pale, ataxic,

almost affected his liver).

4.- We had to wean Lamictal (2 weeks ago, 75 mgs that we cold

turkied) because he developed the scary rash.

5.- We want to wean Frisium, since we think it's causing extra

seizures.

What do you think, what's your experience?..Will the diet alone be

enough for ? What if he gets sick, and ketosis is a problem?

What happens there? I don't know.. After what happened with the

Lamictal I'm very affraid to add any other drug. ... Keto team say

they would like to add another drug, but that they'll respect our

decision.. That only the diet, in 's case wouldn't be enough...

I'm desperate... My first reaction was a big NO for meds.. but now..

so many seizures... I want to stop them!.. He weighs 15.250 kgs,

almost 3 years old. He's on 906 calories, 4 meals 4:1 plus a bedtime

snack 5:1.60 cals..

I'm not seeing much improvement these days, other than he's being

more alert.

Ohh and in case it's ok to add another med.. which one? has

MAE...

And another question, is it possible that a kid needs a lower ratio?

I found a relation in being too ketotic and having increased

seizures... Could this be possible? What do you do to solve it?

Oh My ! so many questions!

Any help will be greately appreciated

Hugs

Gilda.

[Guest guest]

Knowing nothing at all about any of these drugs, I would think that you

might still be seeing withdrawals from dropping the lamictal cold turkey.

Even at 3 months, you are still early into the diet and there is a lot

of room for fine tuning, especially with all the time you lost with the

drug problems.

Bill

mariagildab wrote:

> Hi again!

>

> Well, as you saw in the topic of this mail.. What do you think? With

> the diet... meds or not meds?

> What should I do?

>

> is having many many seizures, he's on the diet, and according

> to his keto team he's under-medicated. He's only taking 5 mgs of

> Frisium at night...

> He had/has a very bad reaction to the Lamictal... but it's about

> time...

> What do you think is more convinient, which was your experience with

> meds and the diet? What would you do?

> Considering that:

> 1.- It has been 3 months since we started the diet.

> 2.- At one point we gained some control although never seizure -free

> 3.- We had to wean Zarontin because of toxicity issues (pale, ataxic,

> almost affected his liver).

> 4.- We had to wean Lamictal (2 weeks ago, 75 mgs that we cold

> turkied) because he developed the scary rash.

> 5.- We want to wean Frisium, since we think it's causing extra

> seizures.

>

> What do you think, what's your experience?..Will the diet alone be

> enough for ? What if he gets sick, and ketosis is a problem?

> What happens there? I don't know.. After what happened with the

> Lamictal I'm very affraid to add any other drug. ... Keto team say

> they would like to add another drug, but that they'll respect our

> decision.. That only the diet, in 's case wouldn't be enough...

> I'm desperate... My first reaction was a big NO for meds.. but now..

> so many seizures... I want to stop them!.. He weighs 15.250 kgs,

> almost 3 years old. He's on 906 calories, 4 meals 4:1 plus a bedtime

> snack 5:1.60 cals..

> I'm not seeing much improvement these days, other than he's being

> more alert.

> Ohh and in case it's ok to add another med.. which one? has

> MAE...

> And another question, is it possible that a kid needs a lower ratio?

> I found a relation in being too ketotic and having increased

> seizures... Could this be possible? What do you do to solve it?

> Oh My ! so many questions!

>

> Any help will be greately appreciated

> Hugs

> Gilda.

>

>

>

> " 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

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>

>

>

>

[Guest guest]

Thank you very much for all your input!

You clarified my thoughts... is just that sometimes when children

start seizing, you just question everything, but I mean,,, every

single thing...

And yes, why not giving him a chance without meds on board..

If we are on the diet, is because meds didn't work for ,

otherwise we wouldn't have started the diet.

And appart from that, we chose the less " damage-maker " meds for

to start the diet with. And what happened? Well he got

intoxicated, we had to wean one. And keto team suggested that

instead of that med, we should add Lamictal. that that was THE med...

Well THE med almost killed my son with the so famous rash

So it's completely understandable that we don't want to include any

other drug in my kid's diet. I'm so scared of thos d* drugs!.. I'm

also scared about leaving without a med as a " cover " , and

still having seizures...

So really don't know..

Anyway, there is plenty of time to go back to meds in the future.

Hugs and thanx again for all your replies

Gilda