Hi A., my daughter, Emma, who is now 6 and a half has a seizure disorder, plus PVL (perventriuclar leukomalacia, which means she deosn't have all the white matter in her brain that she need for her gross motor) and has been diagnod at being on the AUtistm spectrum. We went to WA when she was about 18 month, as we couldn't get Tripler to do anything. Went through a series of peds, proably 5, which is a lot on an island. I'm now in Seattle agan, and as a fluke caught with an old friend whose mom used to owna special school. Turn out her mom had just retired, but instead of selling the scholl ank making zillions, she turned it into a non profit. What an angel. A couple days later, I got a call from my friend again, which surprised me as we had gotten all caught up and I thought she was in DC. (We met in Politics both in Oly and Seattle and she's been a foreign service ageint for almost 17 years0. Anyway, she said her mom had made some calls and wanted us to get to SEattle ASAP. WE were already in Eastern WA, visiting from Hawaii, where the schools are awful, at least for emma they have been. My best friend from middle school wanted us to cat/house sit while she had a funeral for her mother in Idaho, so, an hour after Melissa called , we were flying, literally to the plane and got the last two seats. Melissa, the agent even paid for our tickets, and I felt so himilated. (My Navy hubby has been in CA for six months 'studying' a new girlfriend which he spent about $12,000 on, which was Emma's therapy money and pool money. Anyway, I really like our military neuro, but he just monitors on Tegretol and does and EEG when I force him. The nero pysch we met with FOUR times this week, for three hours a day, except for today which was the parent meeting, is just fantastic. She said there's thee school that would probaby accept Emma. Since we were suppposed to fly out last Monday and she was supposed to start a new school on Thursday, looks like we are committing to moving over here. The neuro, Dr. Gayle Faye is her name, is very professional, asks all the right questions and you can even fill our oall the paperwork on line. She wants us to go to LA to a seizure clinic they work closely with, as we all feel the seizures are causing the erractic behvior, forgetfulness and all the things that go with us. I think the whole thing will turn into a lawsuit, as that's what every doctor, Ot, PT, SP, and pysch has asked if i'm going to do. The thought of a lawsuit is overhwelming at this stage, as they'll put me on trial as I have spinal cord injru and she was 32 premature. Anyway, i am rambling bad, as it is 2:20am and we got home from the docs and a festival not al that long ago. Hard to keep on the schedule, eating, sleeping ,med, when you're traveling. By the way, 'they', whoever they are, said that almost 30 percent of the kids on teh Autism scale evn just a tiny bit get them. I'm not sure if Ive helped you in any way, I do know the Mayo clincic has a seizure clinic of some kind with the 'Ketogenic' diet that has helped thousands of kids. Something you might want to check out. Email me if my ramblng di make sence.
