Bad Day!

July 16, 2004

Hi Everyone,

Feeling really fed up today - has been doing brilliantly

since his ratio had been lowered and I was increasing MCT oil.

Ketones fine, seizure control even better than before and he was so

bright and happy, so obviously I shared the good news with people on

this site and the other groups I visit and what happens - he has a

couple last night - not the end of the world - but then has a really

bad one at breakfast this morning - hits his head on the table and I

end up having to give rectal valium - he just couldn't get to sleep -

everytime he tried to drop off he would jerk and twitch. Only a trace

of ketones this morning! SOMEBODY tell me WHY!!!! I have done nothing

different - he went to bed bright and happy, all the usual food etc

etc - but today he was definitely not having any of it and was out

for the count for most of it! Serves me right for saying how well he

was doing - I am going to keep quiet in future. I am slouthing

everything at the moment and I can't figure out why. The only thing

it could possibly be is that it is very muggy and thundery around

here and that never suits him or he is sickening for something. He is

also cutting big back teeth so that could be the problem as well.

Sorry guys, just needed to sound off! I HATE having to give him any

form of medication now - I always feel so guilty - but I had no

choice, he was desperate to sleep.

Take Care

Emma - frustrated mum to - keto-kid since July 2002.

July 16, 2004

Dear Emma,

I'm terribly sorry to read about 's re-occurrence of seizures of the last

day or so, it must be so wearing on you as parents to see him go through

seizures once more....... heaven knows how my parents used to cope.

A few years prior to me receiving the VNS implant I used to suffer a higher

number of auras and seizures during the summer months, or so it seemed, I did

raise this question with my consultant who felt there might me some logic in

that theory, although didn't give any outright verdict, one way or another.

Let's hope it's just a brief hic-cup for which should disappear, but it

might be worth keeping a note of the weather etc. and maybe try to calm him

down during the hottest days, to prevent him from getting too hot,

Best wishes,

Phil