/ Jordan

[Guest guest]

Hi ,

Unfortunately, making other changes at the same time as diet changes, makes it

really hard to see what's what. What address are you using to join the keto

ring? There are a few different ones, but the one with the most members is just

listed as 'ketogenic'.

There are quite a few on that list doing a 'modified Atkins' rather than the

full on ketogenic diet. If she is not in ketosis yet, it may be the diet change

is not related, but, if just the change in diet, rather than actual ketosis is

making a difference, I can tell you that many get 'worse' briefly, before they

get better.

I don't know much about the B6 side of things, but as far as the lamictal is

concerned, I would give the diet a go first before making any more dose

increases. The state of ketosis affects the way meds are metabolised, even

though actual serum levels aren't affected, the kids seem to get a 'double

whammy' in their system -

plus you are not 100% sure the lamictal is not aggravating her seizures.

Meds etc is what has had us struggling to finetune the diet, it is just so much

harder to see cause and effect with them on board..

Best of luck as you carry on, look forward to seeing your posts on the keto list

as well.

Hill in NZ

The only thing is last night shehad the worst night yet for seizures. She was

having them every hour and then starting having them every 30minutes.

We gave her Diastat to try to break the

cycle, but it didn't even work. She still had one an hr. later.

The things that were different yesterday was #1 the diet #2 removal of B6 per

Dr's opinion and #3 we increased the Lamictal from 2mg in a.m. and 4 mg in

p.m. to 4mg and 4mg. in a.m. and p.m. Dr. still says he doesn't think any of

her s/s are related to the Lamictal b/c the dose is too low to be affecting

her. (I'm not sure how he really knows that, however.) I have a hard time

believing the diet could cause that effect on the first day. (She's not even

in ketosis yet) So I'm left with thinking maybe the B6? How strange is that?

I got a B complex supplement yesterday as she will need to have supplements

while on the diet. So, I gave her that this morning, we'll see how she does

today. Anyone else have any bad experiences when first starting a ketogenic

diet?

Also, Zoe you mentioned epilepsy confused with cardiac arrhythmia's. During

her long term EEG they did monitor with a single cardiac lead. I'm thinking

they would have been able to see something if it were abnormal. I'll start

checking her pulse when she's having them to see if I can hear/feel any

irregularity. I also thought about checking her blood sugar during a sz.

They're so brief however I'd hate to have her wake up and see me sticking

her. I don't think she'd understand what was going on...

(Jordan's Mom)