Exhaustion is an everyday occurance for me!!

Well we had another EEG done in the hospital. He was in there from July 21-24Th. They found out that he is having focal seizures all over his brain. The "wonderful" doctors at Loma Linda put him on yet another medication called Topamax for his seizures. Well let me tell you that medication is awful. It made him a zombie. He did nothing but drool and cry. He lost speech and language abilities and the speech he has left is very mumbled and garbled. We have decided to slowly wean him off of this med. It isn't controlling his seizures and it is making him a zombie. We are also looking into the possibility of trying the GAPS diet. which may help him some. I feel as though no one is listening to me not one person in the medical community that something is so desperately wrong with my son. I know he has all of these labels but I feel like I am losing in bit by bit everyday. He started 1st grade today. This should be interesting, a full day with no aid. He was already just walking around the class and looking so out of place. I miss him.

Really?????

Well he had his MRI and EEG last month. We found out the the covering to his nerves on his brain shows changes which are consistent with the prenatal drug exposure. Then the EEG showed that he is indeed having seizures. We also had our IEP which did not go well. He has not met any of his goals since the beginning of the year. We used up half our retainer with the lawyers and we have to re do all his IEE's that we did last year. We still don't know where he will be going for next year and I am exhausted. It looks like the fight for his next school year is just starting. I have an appointment with his neurologist this Wed, so I can ask her questions directly. It gets very frustrating when you ask the nurse a question for the doctor, she relays it to the doctor and when you get the answer you have more questions than you started with. Well that is all for now I will update later in the week so that you all can know what is going on.

It's been a while

So here we are again ready for another IEP. This will be his first triennial. Which means it has been 3 years since we started with the school district. I am not looking forward to it as we have had to hire a lawyer because they did not want to offer us any other placement offers. You see they only offered us one placement. By law they have to offer multiple placements when it is special Ed. Everything else, we pretty much agree on. Sometimes I just get so tired of fighting for everything for him. He is so totally worth it but it just gets so darn exhausting. For once I would love for something, that he needs to come without a fight. Is that to much to ask for??? He is going to have an MRI next week and an EEG to follow under general anesthetic. To say I am a little scared about this is an understatement. The last time he had any thing done under any anesthia it was a disaster and he wound up with a pyschotic break.