For 7.5 years I have taken Sabril. It is the go to drug for Infantile Spasms/West Syndrome. I had decent control on Sabril. At one point in time in my life I was taking 4 different seizure medications. We are down to two now and the Cannabis oil. When we were in San Jose donating the chairs to the Children’s Hospital I saw my neurologist. He suggested that we try and take me off Sabril. We had told him how my ophthalmologist had noticed that my optic nerve was much paler than before. It used to be pink and now it is white. The Ophtalmologist suggested that I stop taking Sabril as it has a bad reputation for causing blindness. I surely do not want to go blind. I am very alert and love looking at the people I love.
We decided to wean me off the drug very very slow. At this given time I was taking 1000mg a day. We would start reducing 250mg every two weeks. I had no idea that it was going to be so hard to get this drug out of my system. The first week of lowering the drug I reacted with more seizures. They were longer, harder, more intense. The second week was better and we all felt more positive about the wean. We decided on December 15th, to make the second reduction. The next reduction was awful. I began to have gran mal seizures. If you don’t know what a gran mal seizure is well lets just say that it features a loss of consciousness and violent muscle contractions. They don’t last long maybe 15 seconds but they take every little ounce of energy out of me. My eyes roll back into my head and my body convulses. It is so scary for my parents to watch. I know how afraid these make them.
My mom is keeping a report of all my seizures and sending to my neuro weekly. Since the reduction of Sabril my seizures have definitely increased. On January 30th we were supposed to go down again but we decided to wait and see if I leveled out. There has been a very slight improvement. The Neuro suggested to my mom putting me back on the original dosis of Sabril and trying again at a later date to take me off the drug. My said why in the world would we do that???? Do I want to risk losing my eye sight? Would I want to suffer through the weaning process all over again. No I would not. So what do we do? Seizures VS Eye Sight. Well we are all being tough (especially me) and decided eye sight more important. We have yet to do the third reduction but it is coming up soon.
My mom wrote to our support group and many moms have experienced the same thing with cutting out the Sabril. It is a mean nasty drug and I really don’t want to take it anymore. I am hoping that my next reduction won’t be so bad. I have come so far with my seizures and I just keep praying that I once I get Sabril out of my system things will go back to the way they were before. Any extra prayers out there would be greatly appreciated!
Love Malia xo