Re: Adam and Amelie - which way?

[Guest guest]

Hi Adam

I don't seem to have much time to check messages these days but just came across

yours so I thought I'd share our experiences too. They will undoubtedly sound

similar

to other peoples...

Ben developed epilepsy at the age of 4 years one month, a few months before he

was

due to start school. We began with what were termed atypical absences. About a

month later on holiday my Mum found him at the top of the stairs just about to

topple forward, but she was thankfully able to catch him. His guardian angel has

been

hard at work these last few years! A month or so after the holiday we started

Epilim,

and pretty soon the myoclonics appeared. Over the last few years we have only

deteriorated. Higher levels of Epilim with every sign of deterioration, new

drugs, more

seizures, longer seizures, different odd types of seizures no-one could properly

identify. Ben slipped from being a very forward 3 year old with a promising

baseline

assessment (this is what they did on entry into school so they could tell how

much

progress had been made from that starting point) to a zombie who couldn't

express

himself, and used to fall asleep as soon as you set off on a car journey. His

speech

was slightly unclear and he drooled constantly. Somehow, due to some incredible

determined people, he has stayed in mainstream school, though he is now in the

bottom set for everything and suffers from a terrible lack of self-esteem which

hampers his learning. Abut two years ago I became convinced the Epilim was doing

nothing positive, only detrimental, but it took us another 18 months to get Ben

on

the keto diet. We are due to be Epilim free in two days, and I am so delighted

and

relieved. I am planning to pour the remainder of the Epilim down the loo!

So we started the diet with Epilim on board, which I kind of regret, but I

didn't want to

wait any longer to start the diet. Pretty soon Ben was coming alive and waking

up

again, like the sleeping beauty. I don't think he has any idea what he went

through

and what he has missed, but for us the change is amazing. Not really better

seizure

control yet but such improved alertness and ability to cope with life in

general. In the

middle of the wean we let things stabilise for about 4 weeks, and by the end of

that

time we did have some really amazing almost seizure free and very lively days.

But

then we pressed on with the wean, and so we saw the seizures come back.

It's amazing how your gut feelings can often be correct. I am so sure that in

about a

months time we will see a real improvement because the Epilim should be out of

Ben's system and the diet should be able to do it's job properly. We do accept

that the

diet may not be the miracle answer for Ben but I am really determined not to

give him

another AED in his life if I can help it. I loathe the things! Now Ben is

learning to rock-

climb, can concentrate on swimming, sailing, will sit for hours making little

models

out of bits of cardboard, can tidy up his bedroom without us standing over him,

and

can read his cello music without getting lost after every third note. I never

thought I

would see this day. I just thought we would never have our old Ben back again.

Good luck with whatever you decide for Amelie. You've have to cope with the

consequences of your decisions as well so that has to be factored in too.

Rose Toms