Hi Kim,
My son Tai was developing normally until about 18 months of age, when
he developed some obsessive behaviour. We had just moved house and I
was expecting our second child, so we didn't think too much of it.
Our health visitor had said it was common in boys. As time went on,
his obsession with bins got worse, until he was sent for an
assessment in December 2003 at age 3 (I think autism was on the table
as a possibility). This concluded that he had a speech and language
delay, which surprised us, but nothing about the obsessive behaviour!
In March 2004, he deteriorated quite quickly and lost all receptive
and expressive language. He never had an outward seizure. It was
devastating. We thought that he must have suddenly become deaf, he
would no longer respond to any noise, his name, even environmental
sounds. A hearing test was normal.
To cut a long story short, I typed in loss of language on the
internet, and up popped LKS. When I read it, it described Tai;
obsessive behaviour, pickiness over food, loss of language, tantrums
etc etc. We were still 'on the books' of the local paediatrician
after his assessment, but things were moving really slowly. It was
hard to be taken seriously. I found another parent of an LKS child
online and she had taken her son to Paris for his diagnosis (we live
in England). I emailed the same specialist and we saw him 2 weeks
later, and Tai was diagnosed with LKS after a nap EEG.
Tai was without language for many, many months, and I think this
makes a lot of difference in the outcome. But, despite the length of
time he couldn't talk or understand he is doing amazingly well now
after a slow start. His EEG cleared quickly with Prednisolone, and
when that stopped working after weaning we switched to Hydrocortisone
He has had a clear EEG for 2 years now. At the age of 6 he has the
language of a 3 and a half to 4 year old. We are so pleased with this
because we previously used a photo board, then later sign language to
communicate. We have just started to wean him from Hydrocortisone, so
we are hoping the EEG remains clear. It will be a 2 and a half year
treatment by the time he finishes, so the chances of a relapse are
smaller than say, a 6 month treatment.
If you have any other qustions, don't hestitate to ask. I know how
tough this is.
By the way, I'm sure I read somewhere that if they are given
something to sleep this can suppress the activity.
Sorry for the essay!
Stay in touch
Sam