Hello to all:

I just found this group and I'm really hoping to get some great
information from all of you that are dealing with the same illness.
I noticed my son was not developing as he should've been at the age
of 6 months old. I have taken him to every doctor I possible
could've and they all did nothing until late last year I finally
found a doctor that would listen and do some different testing. My
son is now turning 9 years old in June. I has been a very long and
lonely road :-( I'm now just learning about what my son has and how
rare it is. I've researched about everything I could possibly find
and it all looks like there isn't a lot of children out there that
have this. How many of you are from the United States? What
information I have found, it seems this is seen more outside of the
US, why is that? Has anyone been told about how their child got this
illness and what kinds of treatments that you all have tried? We are
on our second oral medicine and it's got horrible behavior side
effects. The only nice thing about it, is that it helped my sons
Sleep Apnea so that he doesn't have to sleep with the C-PAP machine
anymore. YEAH! There has been so many struggles over the past 8 1/2
yrs and only to find out that my other son that is 5 yrs old also has
the same EEG readings. How crazy is that?!?!?! I have two children
with the same thing, but function different and developed different.
I wish I could figure what causes this and how are my children going
to be in 5-10 yrs. I guess we can only take each day as it comes. I
really hope to keep in touch with you and learn about others
expierences.

Best of wishes~

Jessie W.