Re: Carolyn/ ael - to Carolyn

[Guest guest]

Dear Carolyn

I read your emails and feel so badly for you. You just sound so all alone in

your nightmare of trying to do what is best for your son, without support or

knowledge of what is best to do.

I am so sorry. If I could help, I would. I do not know how the children

survive the awfulness of seizuring over and over again. How absolutely awful

for them, and, of course, for us, because we love them.

I will pray for you and ael. I do care, but feel so helpless to do

anything for you.

, 's mumma

caronath caronath@...> wrote:

Saro,

Thanks to worry about us because I haven't the feeling a lot of persons do...I

sent a mail to tell my suffering with aël a few days later and noone

respond me...I know I'm the only french one on this group maybe it is more

difficult for you to come to me, I feel very lonely...

We came back from hospital an other time, I'm so sad to see my little angel with

so many seizures all the time. Sometimes it is a bit better but not really.

He had a status seizure and doctors put him on gardenal , usually it makes him

better at least 48 hours and this time 10 hours later he seizured again...They

did him diazepam intra rectal, he seizured again, so they stopped and as he was

a bit better they said I can go back home....So we're back home.

He's a bit better now, I try to increase the ratio up to 2,5.1 instead of 2.1, I

hope he won't go to acidosis again...Doctors said his acidosis is better

now...

I don't have any numbers about his acidosis...

I continue the keto diet but still very difficult alone...

Carolyn, aël's mum 6,unknown disease.

Carolyn/ ael

Hi Carolyn,

How is Nath (do you mind, if I call him that as I'm not very good

at typing?) doing?

I've been thinking of you guys and wondering whether you got any

more help with the acidosis and continuing on the diet.

I do hope you got some help from the hospital and dr.s and things

are better.

Saro

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

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

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