Hi Jennifer,
Yes, this sounds very familiar. Not with Tai, but so many parents
have reported this in their children. One day they learn something,
the next its all gone. Also maybe changing the name for something
else, e.g. one day calling a leaf a leaf, then the next calling it a
tree. Also, I think that it is possible to have the activity and not
lose more language.
I noticed you posted on one of the other boards, I think you will get
so much help from there. There are so many parents that have been
through what you are going through now.
Is there any chance you can get them to do the EEG sooner? Also make
sure that it is a sleeping one, otherwise this can't rule out or
confirm LKS.
As for the brain activity, the way I see it, as long as its there,
then the more damage its causing, the more harm its doing to your
son, the less he will learn and retain and the more permanant it is.
Sorry that sounds harsh, but we learned very early on, that we had to
be aggressive with this illness. Tai lost every piece of language, he
couldn't even recognise the phone ringing. He went on to high dose
steroids (Hydrocortisone) and he hasn't looked back. He talks in
small sentences, at the level of a 2-3 year old (he's 5 and a half).
It wasn't easy because of the side effects, but now he has a chance
of a normal life. He goes to a mainstream school (with help). His
language is gradually returning and we are just starting to wean him
off his meds.
I really think the most important thing now is to get a sleep EEG, I
believe it is very possible that he may have some kind of LKS-
variant. If not, then at least you know!
If you need any more info, don't hestitate to get back to me. I check
the other boards too.
Keep me informed of what happens!
Take care
Sam