Carolyn and Emma

[Guest guest]

Just to let you know that I am thinking of you both. Harry has just

had a good day after 3 weeks of sheer agony..this is a tough thing

for anybody to go through. It is amazing how we find the strength to

go on ..but we just do, for the sake our little children.

Emma..who did you speak to at GOSH? We found Paoulo Nicoladis (also

of GOSH) (not sure if that is how it is spelt) q supportive last

week. Regrettably she advised that we add a short course of clobazam

to break the status..but this was only 3mg BD first day and then

halving the dose for the next day and then halving again and then

removing. Not sure what the fallout will be of course and Harry is

also on 0.5mg BD clonazepam which will be another withdrawal

nightmare in itself (we know already that this causes tonic seizures

in Harry). we have an EEG tomorrow..feeling that H is sensitive to

benzos..we will be expecting to see some sub-clinical activity.

Hang on in there...

love and hugs, paula

x

> > > Hello,

> > >

> > > aël is back home but he's still got seizures.

> > > I'm reading mails and I'll write more later.

> > > Nath is under Trileptal, Rivotril

> > > Doctors don't know about keto diet !!!!it's amazing!!!

They

> said

> > it doen't need to be contrled with keto sticks urinary ant

not

> at all

> > blood control!!!!!!!!!!!!!!!!!!!!!

> > > We're back home but i'm scared of the future even just

of

> > tomorrow...

> > >

> > > Carolyn, aël's mum

> >

> >

> >

> >

> > " 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!

> > Subscribe: ketogenic-

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> >