Re: I think we are about to give in-Leita

[Guest guest]

Hmm, when was her frisium last touched Leita? Tonics are the ones that

appeared in after NOT reducing his benzos, and the more we left his

diaz alone, the more prominent they became. They turned into these nasty

nasty prolonged convulsive ones in hospital, that sometimes went longer than

5 mins. Cynaotic, heart rate thru the roof - the works. We were unsure of

what they were - never seen them before - initially thought they were

prolonged myo clusters or even TCs.

But - we also started seeing bad effects from the diaz in other ways as

well to give us a clue that it was probably the culprit in 's case.

Like drooling heaps, ataxia worsened, completely dulled personlity wise etc.

His EEG when admitted did show some spikes, but nowhere near frequent enough

to warrant the behaviour we were seeing in him, hence the assumption he was

having an adverse med reaction. But you are seeing none of this behaviour in

Asha? Any tie in to med dosing times to the worst of the seizure activity?

If I remember rightly, the cal decrease came about because she was already

starting to have increased seizures? So although it might have something to

do with it, it would seem less likely as being the sole culprit when she was

already having increased activity?

My gut says the meds are most likely her problem, but I know the dilemma

well - how to work on that when she is already having increased seizures

I can't see why you would have to stop the diet at this point, it is

doubtful it is actually doing anything harmful seizure wise, well except

(from my biased point of view...) to maybe have the effect of having the

meds hit her harder, esp benzo medication...

Has she actually lost much weight since decreasing the cals? Or have you

been unable to tell?

----- Original Message -----

> Asha has been having increasing amounts of seizures over the past

> three months or so and I have jiggled with the diet and meds to no

> avail. The best control with the diet had her seizures reduced by

> 90% or so going days and sometimes weeks between them. . She is

> still so much brighter than she was pre diet with her beautiful

> personality and smile shining through. However I am worried about

> the now daily and beginning to be twice daily seizures she is

> having. I am not sure what type of seizures they are. They start off

> as tonic then progress to a series of myclonic spasms with a

> writhing slow motion movement between each one.They last from 5 to

> 15 minutes in length. She is having an aura now before them where

> she becomes super excited and hyper active. We discovered she has

> put on a substantial amount of weight since beginning the diet 20

> months ago which she really needed to do as she was very underweight

> [ we are doing the diet alone with no keto team and I do not have

> access to seated scales] I have recently decreased her calories. Her

> ketones are stable at mod to high. She is still on Frizium, Lamictal

> and Vigabatrin but because of the weight gain [10kgs] over the

> months I guess the levels are less than they were in her system. I

> am phoning her doctor tomorrow to discuss her future treatment

> options. I am sad that maybe this is the end of the diet and her

> bright smile that came with it. Just thought I would let you know.

> Leita.

[Guest guest]

Hmm, when was her frisium last touched Leita? Tonics are the ones that

appeared in after NOT reducing his benzos, and the more we left his

diaz alone, the more prominent they became. They turned into these nasty

nasty prolonged convulsive ones in hospital, that sometimes went longer than

5 mins. Cynaotic, heart rate thru the roof - the works. We were unsure of

what they were - never seen them before - initially thought they were

prolonged myo clusters or even TCs.

But - we also started seeing bad effects from the diaz in other ways as

well to give us a clue that it was probably the culprit in 's case.

Like drooling heaps, ataxia worsened, completely dulled personlity wise etc.

His EEG when admitted did show some spikes, but nowhere near frequent enough

to warrant the behaviour we were seeing in him, hence the assumption he was

having an adverse med reaction. But you are seeing none of this behaviour in

Asha? Any tie in to med dosing times to the worst of the seizure activity?

If I remember rightly, the cal decrease came about because she was already

starting to have increased seizures? So although it might have something to

do with it, it would seem less likely as being the sole culprit when she was

already having increased activity?

My gut says the meds are most likely her problem, but I know the dilemma

well - how to work on that when she is already having increased seizures

I can't see why you would have to stop the diet at this point, it is

doubtful it is actually doing anything harmful seizure wise, well except

(from my biased point of view...) to maybe have the effect of having the

meds hit her harder, esp benzo medication...

Has she actually lost much weight since decreasing the cals? Or have you

been unable to tell?

----- Original Message -----

> Asha has been having increasing amounts of seizures over the past

> three months or so and I have jiggled with the diet and meds to no

> avail. The best control with the diet had her seizures reduced by

> 90% or so going days and sometimes weeks between them. . She is

> still so much brighter than she was pre diet with her beautiful

> personality and smile shining through. However I am worried about

> the now daily and beginning to be twice daily seizures she is

> having. I am not sure what type of seizures they are. They start off

> as tonic then progress to a series of myclonic spasms with a

> writhing slow motion movement between each one.They last from 5 to

> 15 minutes in length. She is having an aura now before them where

> she becomes super excited and hyper active. We discovered she has

> put on a substantial amount of weight since beginning the diet 20

> months ago which she really needed to do as she was very underweight

> [ we are doing the diet alone with no keto team and I do not have

> access to seated scales] I have recently decreased her calories. Her

> ketones are stable at mod to high. She is still on Frizium, Lamictal

> and Vigabatrin but because of the weight gain [10kgs] over the

> months I guess the levels are less than they were in her system. I

> am phoning her doctor tomorrow to discuss her future treatment

> options. I am sad that maybe this is the end of the diet and her

> bright smile that came with it. Just thought I would let you know.

> Leita.

[Guest guest]

I didn't contact the doctor today becasue Ash is so bright and happy

and I need time to think without his biased influence.

The best seizure control Asha has had while on the diet was early on

just after we made the first Lamictal decrease and I did that three

weeks into the diet because she had signs of toxicity. I then

continued to decrease it until we had dropped from 250 mg twice a

day to 50 mg twice a day. Then I started to reduce the frisium. we

never did get that good control back that I thought would come with

the decreases. I now wonder whether she needs these meds as well as

the diet. As well as the decreases her weight gain would also have

dropped the levels in her system. I know the diet helps her

cognitivley. That might be something to do with the sub clinical

activity clearing or it might have soemthing to do with her general

make up .She has a genetic disorder. I am reluctant to stop it

becasue of that. SO I am now thinking along the lines of adding back

some of the Lamictal to see if it might get back some control.

We don't have access to a keto team here in Australia. Asha is now

regarded as an adult at 19yo and is now unable to access any of the

childrens services here. Her epileptologist is a 'drug' only man but

wanted to try her on the diet as nothing else has helped over the

years. So I have done this soley with the help of this group. Leita.