I got a call last week from the Shape Supervisor that "everyone" wanted to have an IEP (Independent Education Plan) to discuss whether the Doodle still needs his nurse because he hasn't been having head drop seizures since the end of September...
I agreed and then immediately went to my handy, dandy Doodle Bug Binder. I pulled out the IEP and found where it clearly states that the Doodle have his one on one nurse at preschool until 6-2-10.
I was a little irritated at this impromptu IEP meeting, since he has the worst kind of epilepsy imaginable and has every kind of seizure you can have--just because he hasn't had a head drop seizure since the end of September does not make him seizure free. He still has a ton of seizure activity every single night and during the day when sleeping.
The fact is, his seizures just started last January. And, in one year's time they have progressed, regressed and improved. They've changed four times...in cycles. We have tried seven different anti seizure medicines and while I would love to be hopeful and be in a place where he didn't need a nurse or have to wear a helmet, we're not there yet. It's too soon and they are way jumping the gun. It hasn't even been six months.
So. Again. I will have to put my foot down and fight for what they already offered him and wrote into our legal binding agreement. It just means more work and stress for me. I have to now get a letter from his neurologist that this does not mean his seizures are over with or under control and that four months is not enough time to determine whether his seizures are under control.
We're supposed to be going in for another sleep study. They want to change his medication again. If that happens, who knows how he will respond. Every day I worry that the seizures will be back. That was a very dark time for the Doodle and our family and I don't even like to think about it. I get a little sick to my stomache.
I called back. Mentioned my position and what I am planning to bring with me so that there will be no surprises on January 19th. But what a waste of time. For everyone.