Hi Peta,

Congratulations, that is fantastic news. We were in your exact
position 2 years ago, and I posted all the same questions that you
have! I admit I expected Tai's speech to return quite quickly, but
this just didn't happen. He began to babble and say the odd word just
like Taylor. I would write down every new word, and gradually the
amount he could say filled a page. It took many months to see any
significant improvement. When I look back, there was no 'moment' when
he could suddenly talk, it was just a very slow process. He is now
talking and understanding like I never would have thought possible.
At age 6, he is approximately at age 3 and a half to 4 for language.
This is fantastic, as he lost all language completely and couldn't
even recognise environmental sounds. If he continues the way he does,
there is no reason why he shouldn't catch up, even if it takes a few
more years.

You are right to be cautious with the pred. Tai started on this and
was weaned too quickly, the spikes returned and couldn't be
controlled again even when we upped the dose. We, too weaned from
2mg/kg/day down to 1mg/kg/day. Tai had been on the pred for 4 months
at 2mg/kg when we started to reduce the dose. We went from 2mg/kg to
1mg/kg in the space of 4 weeks (which was actually slower than our
neuro had suggested). The spikes came back and we put his dose back
up and more to 2.5mg/kg. The abnormal EEG remained, so we switched to
Hydrocortisone which again cleared his EEG.

How long has Taylor been on the pred? How is she handling the side
effects? I think if the side effects are manageable, then stay on it
for as long as possible. Our neuro in France recommends at least a
year's treatment. We are in the process of weaning Tai now, his
treatment will last for 2 and a half years if all goes well. This is
because of the spikes returning with the pred, the neuro extended the
treatment. I don't really understand the logic of weaning too
quickly, then thinking of future strategies. Why not concentrate on
keeping the EEG clear now, if that means a year or 2 on steroids,
then as long as the side effects are not too severe, then so be it.

I don't know much about the other treatments you mentioned, although
Tai did have immunoglobulin injections when he came into contact with
chickenpox. The ATCH is again steroids which are injected.

Congratulations again, and keep us informed of what happens next.

Best wishes

Sam