Re: Lost control--kinda long

[Guest guest]

Wow -- that sounds tough! But my instinct, reading this, was that

maybe the Felbatol/diet combo wasn't good. Or maybe it was the Felbatol that

" disempowered " the diet -- rather than the drop in ratio, since his ketones

did not change very much. If his ketones were still moderate, he wasn't

" off the diet. "

One idea might be to call Pillas at Hopkins and run the scenario by

her (or have your doctor call and ask for a professional courtesy.)

Another idea might be to go back to everything you were doing when the

diet was working. SInce the Felbatol seems to have worn off, you might look

into the idea of weaning it. But I bet Hopkins would know something about

how Felbatol interacts with the diet.

I have read posts from a number of people who went off the diet and then

went back on. SO I don't know how much I would trust the nurse's assessment

of " what went wrong. "

I think I would try dropping the Felbatol before dropping the diet

completely. See where you are. And then re-evaluate.

I know things were also bad before you started the Felbatol. But is this

worse than that time?.

I don't know if this makes any sense medically. But that's what my

inclination would be. Hopefully some of the diet experts will have better

ideas.

Jane

[Guest guest]

,

I'm so sorry to hear this. We are also kind of in the same boat.

Rohan's been on the diet for over 3 years now with not much

control but he has been free of the side effects of the drugs

(he was drug free for about 1 1/2 yrs) and more himself.

At the moment he's on Diamox and 300mg Neurontin twice a day.

We are in the process of weaning the latter. We got to this dose of

neurontin about a week ago and he has been having screaming seizures

for two days. His urine pH is high and I know this coincides with

screaming during sz. We are at 1.5:1 and I'm trying to lower it

to 1.4 today. However I might hold off after reading your post.

We are waiting for an appointment with the VNS Dr. in 18 weeks

time.

One thing that struck me was that is on Carnosine. Did you see

a good response to it? Rohan had partials all day when we tried it so we

stopped. Also Rohan does better on low ketones. I don't know

whether any of this would help. About the not growing thing - we

have the same problem but a few months ago we increased calories

and protein a bit and he's grown a bit but nothing like pre-diet.

I wish I could help more.

Saro.......Rohan's mum

Gill wrote:

>Hi everyone. I'm looking for advice.

>

>We have totally lost seizure control. The diet seems to no longer be working

>for us (we started 5/02). never had perfect seizure control, but it

>seemed to control his out-of-control brain waves (no more stumbling around,

>much better motor control, etc.) and the diet cut the sz by half. We were on

>a 3.5 ratio for about 6 months. We started Felbatol in December and had to

>lower the ratio to 3.0 in order to be able to mix 's meds in (he can't

>swallow pills). The Felbatol/diet combo allowed to be almost sz-free

>for several weeks (a miracle). Then, the sz came back in January. We were a

>little bit looser on the diet over Xmas (though NO un-keto-friendly food)

>and gained weight. We adjusted the diet and upped the meds and regained

>sz control. We weaned a little clonazepam, saw some sz again, but after

>about 10 days, everything was fine. A couple weeks later, we did another

>small clonazepam drop. Unfortunately before we were through the weaning,

> got a cold. That was almost 2 months ago and we've yet to get any

>control back. Things are horrible. Lots of sz, tons of bad brain activity

>(poor balance, motor control). I can't even count the times has woken

>up in non-convulsive status. We're using the Diastat 3-5 times per week.

>

>At one point last month, we tried dropping the ratio dramatically to see if

>the diet was even doing any good (from a 3.0 to 2.0). Things did seem to get

>slightly worse so we decided we'd get him back into deep ketosis (on the 2.0

>ratio, blood ketones in the afternoon were only moderate). We bumped the

>ratio up to 3.5 and have been getting very dark ketones. It's been about 10

>days and things are still getting worse. Our neuro increased his Felbatol a

>week ago, but that didn't help either.

>

>Our neuro's nurse told me the diet stopped working because in effect I took

>him off the diet by lowering his ratio so much. She said once you've stopped

>the diet, it doesn't seem to work starting it again. In hindsight, maybe it

>was a mistake. Still, never had lower than moderate ketones, even in

>the morning.

>

>We're going to try the VNS. We don't meet with the neurosurgeon for another

>3 weeks. We have to decide whether we'll continue the diet for another year

>or not pretty soon. Our neuro wants us either off the diet or on the diet to

>stay so they can accurately tell how the VNS is working.

>

>I'm just not sure what to do. has not grown at all on the diet and has

>lost a lot of his hair. Plus he's been sick more on the diet than ever

>before. So the diet is not totally benign for him.

>

>We've been giving carnosine, cal/mag (no zinc--'s zinc levels were

>slightly high), and a good multi-vitamin.

>

>Any thoughts, suggestions for us?

>

>ashley

>mom to , almost 5yrs, autism, possible LGS, keto kid since 5/02

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! "

>

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[Guest guest]

<<She said once you've stopped the diet, it doesn't seem to work starting it

again.>>

,

I'm really sorry things have gotten out of control. Bummer. You must be

exhausted and disappointed. I just wanted to say, I have never heard anyone say

this about the diet not working if you stop and then go back on. I don't think

that seems logical.

More later,

Patti