Update.

[Guest guest]

Okay, in the last 24 hours had 6 seizures, in the previous 24

hours he had 14. I only gave him 5mg of clobazam last night instead

of the 10mg rectal valium he had the night before. So far today he

has not had an afternoon nap so he has not had any seizures but he

got a little twitchy this afternoon when he was normally taking a

sleep. He has been wobbly on his feet today but all round a bit

brighter and more interactive - all positive. I have yet to see what

tonight brings - if he doesn't have more than 6 seizures tonight I

will be happy (for the moment).

Can't get a ree dx test - they don't do them for this kind of thing

over here, but I have managed to get to see a local consultant this

afternoon and he turned out to be lovely (thanks for the

recommendation Val - you were right - he may not have a lot of keto

experience which he freely admits to - but he listens and basically

asked what I wanted him to do! now has a local consultant

which is a first for about 3 years and I feel that I have a bit more

support which is good).

Height and weight were done again - has grown 1.5cms in the

past year (or even less as is not great at standing up

straight and fidgets!) His weight was done on the 8th July and he was

33.65kgs, today he was 32.4kgs. The extra calories do seem to be

needed. Bloods were also taken today and everything is being

checked, his blood gases results I have already and all are fine, the

rest of the results I will get tomorrow as the consultant is going to

phone me to let me know (unbelievable I know, but he really is a gem).

I have spoken to his dietician again today and we are going to keep

his calories at 400 extra for the time being and see how he goes. It

may be that we will need to reduce them a little in time but we will

have to see how it goes.

She was very interested in what you had to say and I hope you

don't mind but I forwarded to her the messages you have sent me and

she is going to discuss them with the consultant next week - she is

very good and is open to gaining all the knowledge she can as well.

You have been an absolute star and I cannot thank you enough.

I know that I am not out of the woods yet with but I think

you have put us on the right road.

Thank you everyone for your support - you have really helped me get

through the past few days - I HOPE is recovering now - but

time will tell on that one.

Love and Prayers to you all.

Emma. Mum to - who is hopefully getting better!