I’m at a crossroads, not sure what to believe anymore.
My online Bachelor’s degree in Epilepsy has left me dumbfounded on what is real and what to believe. I am reading as much information as I can to learn more about this but in the process, I am hearing from people who actually have epilepsy and parents of children with epilepsy that the side effects from the medicine is almost worse than the actual seizures.
I’m getting so much contradicting information that people suffering from the disease are self-medicating themselves and weaning themselves off of the multiple drugs that their trusted doctors have put them on because when on more than one anti-seizure drug, they have MORE seizures. I think these people would know since they are living with it every day of their lives—how many doctors out there are actually living with a personal bout with Epilepsy. I can speak from my own experience with the Doodle that this is definitely the case. It seems like the more prescriptions they put him on, the worse he is getting; both cognitively, behavior-wise, motor skills wise and seizure-wise. Apparently, these drugs were tested Stand Alone—they were not ever meant to be combined with other similar drugs. I also keep reading about how some anti-seizure medicines can cause seizures. There is no science to any of this—it all depends on which Doctor you go see and what their opinion is on the various drugs or maybe it’s their favorite.
I keep reading that once you have tried an anti-convulsant and it did not work, the chance of any working after that, no matter how many you try, is about 15%.
I have to ask myself why Dominic has been prescribed 7 different drugs in 4 months by 4 different doctors? I have to ask myself why these doctors cannot agree or come to a consensus on which anti-seizure medicine to use and why in the world they would even think to combine 4 different drugs at once for a 2 year old. Here is our absolutely insane list of Dominic’s medicine without explanation as to WHY they were chosen:
Dr. Jannean: Trileptal, Keppra, Depakote
Dr. Zembal: Phenobarbital
Dr. Griffith: Lamictal and Zonisimide
Dr. Olsen @ Stanford: Chlonazepam
All of these medicines have unbearable, potentially devastating side-effects that have completely changed the Doodle and not for the better. He was already a high strung, high maintenance baby with numerous quirks. He was already fussy and clingy. He was already OCD and ADHD. He already could not focus. Now, these drugs have magnified these behaviors and it’s not even like they are working stopping the seizures.
If I take just one Claritin D for my allergies, it totally changes my sunny disposition. I cannot imagine being on 4 serious medications such as these and I'm a grown woman; not a two year old child who weighs 33 pounds. I feel like I am poisoning my son.
Somebody out there must have answers. I’m anxiously awaiting our appointment at Sutter Neuro-Science in Sacramento with Dr. American (Amar Khan). Surely he will be able to save my baby, right? Or will we come home with another harmful prescription?
We listen to the doctors because they are doctors and know things we don’t know or understand but if I had a brain in my head or testicles between my legs, I would take Dominic off all of these drugs, see what happens and start over.