My heart goes out to you C.. I understand the pain, uncertanty, worry, confusion and guilt you are probably feeling. We as moms always find a way to blame ourselves and second guess every move we have ever made.Was it what we did do or not do that caused the problem. Was it during the pregnancy? or something we gave them or they were exposed to after they were born? I woiuld like to tell you that feeling will go away, but if you are like me, even with answers, I worry it is my fault.
My story started a little over a year ago when my 4 1/2 month old son started having atonic seizures. After the 5 day hospital stay (CHLA), and all the tests your son had, they had no reason for the seizure activity and put him on Keppra at the maximum dose, but he continued to have seizures. He was then put on Phenoparbitol also. That was increased to a high dose until after 2 months on both meds he didn't appear to have any more seizures. It felt like they were never going to stop, but eventually we seemed to get it right.
The best thing that has helped me is to be as educated as possible. My best resource that your Neurologist probably told you about is http://www.epilepsy.com. It is packed full of information on anything you can think of relating to seizures and medications. Everything you click on has drop down menues and leads to others and so on and so on. It answered so many questions the doctors had no time for and gave me an idea what I should expect for his future treatment and prognosis. Yes, it also scared me with worst case scenerios, but I also saw how lucky we were that it wasn't something much, much worse. It helped put things in perspective and give me a plan.
There are many epilepsy groups (depending on where you are) that you can find on the internet and also major yearly conferences with the newest breakthroughs and info from docs. Information is for newly diagnosed and established alike. The docs actually answer completely all the questions asked and I learned a lot from questions from the other participants. If you live in southern California there is also another site http://theepilepsycenter.org. Just check around.
You should contact your regional center for your son. Having even one seizure automatically entitles him to services in the Early Start Program. Seizures and, in particular, the medications for seizures can interfere with normal development, especially speech and motor skills. The regional center will evaluate him and decide if he need preventative services or just monitoring. Either way it is free (your tax dollars at work) and very comforting to know professionals are watching your child for any sign of developmental problems.
My son's story is turning out to be one of the more complicated ones. He still has not had seizures for almost a year, but he was showing other weird signs (that I noticed because of the website information). After lots of ongoing tests, we have a preliminary diagnosis of a mitochindrial disorder causing his seizures. They don't have specifics yet, so no prognosis. Very frustrating, but I understand the process and that goes a long was to calm my fears of the unknown future. Everything can still turn out just fine and that is what I am praying for and believe will happen.
As an aside, I was very hung up on the term "Epilepsy". No one on either side of the family has ever had seizures and to me it meant he was doomed to have seizures for the rest of his life. But in reality, it is a very generic term for anyone who has had more than one seizure in their life (excluding tumors etc.). It does not describe which seizure type it is, the cause or the prognosis. It took me while to get used to using that word.
As for the vaccination issue. It is a controversial and explosive topic. My son had only very few selective ones before his seizures started. There was months between his last one and his 1st seizure. So, no correlation I could find. He didn't even get shots in the hospital at birth. We chose to stop all vaccinations after his seizures because some cause seizures and without a diagnosis, I personally didn't feel comfortable with them. We have recently begun to slowly give him some vaccinations again at the advice of both his Neurologist and Geneticist. The H1N1 virus was causing specific neurologic symptoms, so anyone with prior seizures was advised to be vaccinated. In his case the benefits outweighed the inherent risks. Both my son and his older sister(3 yrs) got 2 flu shots and 2 H1N1 shots this past fall. We spaced them out one at a time and with NO other shots at all. We had no problems at all. No seizures.
I know this is a lot of information, but I know my head was swimmings a year ago and needed someone to point me in the direction of help. I hope you find comfort and hope in sharing our experiences. You are not alone. Feel free for contact me directly if you have any questions or just need to talk. Good luck to you all.
Best regards,
K.