Sunday, 17 June 2007

About time I did an update

New Zealand seems to be making the headlines with Tourette Syndrome check it out here.
Enough said!!!

Ok what have we been up to, well surprise surprise no contact from GSE (Group Special Education) yet, I feel 10 weeks is plenty long enough so am now going to start putting the pressure on, first with a phone call this week. School is going ok, well the 3 hours he goes to school, he has actually been attending tech class by himself, so that is a biggie. Just a shame we only have about 2 weeks of tech left for ICT and then he goes to cooking, well he wont be going thanks to the OCD monster..... for Chris food, and cooking utensils and cutlery and crockery are his OCD issues, he was freaking out about it and nearly vomiting of the thought of having to touch other dishes people have touched. He wont even touch our plates hence why he has his own. Anyway am going to talk to the psychologist about it on Tuesday and see if he has any options on how we could possibly do it, then after cooking they have drama or whatever they call it now days, and for that they have to do a singing solo act so another tough one when you have Tourettes.
His tics have increased again and he has this lovely back one, where he arches his back and it keeps clicking and wonders why he has a sore back..... also another latest is clicking his jaw all the time..... GGGRRRRR. Vocal tics are still certainly there as well.

Well onto my daughter, have been having a good chat with the teacher and we think she has all the classic symptoms of Epilepsy especially Absence Seizures these seem to be getting worse over the last few months, the teacher has noticed and this will explain the dropping things, the stopping midway in conversations for a short amount of time, then either carrying on a conversation, or forgetting what she was saying the "daydreaming" she is having in school, falling further and further behind in school when she was a kid 18 months ago, that never struggled. It answers so many questions, have contacted the Epilepsy Society here in NZ and she said it is all the classic symptoms so is coming out to see me tomorrow to talk to me as it could be 6 months before we get to see the neurologist and get an EEG and any other tests done etc......... This will explain why she can sometimes be carrying food to the table and just drop her plate and not know why.... I am now wondering if what I thought was tics may be a seizure. We will still go to CAMHS in 3 weeks, and get them to do a referral to a paediatrician and a paediatric neurologist.

Oh well thats about it from us for now catch you soon.

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