The last few months have been ridiculous...so many medication changes!
In fact, I've been monitoring our big guy's seizure activity 24/7 for the last 2 months. I slept in his room, and watched his every move so I could track EVERYTHING and know exactly what these drugs were doing, good or bad.
First off, our Big Guy was taking 5 different medications.
Good news, he is no longer taking Valproic Acid. I've talked before about the awful decline our son experienced as a result of this medication. We're done with it.
Next we weaned him off the Lamotrigine because it didn't seem to help, and actually seemed to increase seizures. Oh, it was awful. We were so very close to taking our poor boy to the hospital because we thought he was in Status.
One night I counted 7 Tonic Clonic seizures in his sleep and countless absence, it was extremely upsetting. What was even more frightening was the development of new seizures, which were probably Complex Partials. Our son would wake from sleeping and stare off into the distance, completely unresponsive and then look terrified of whatever he was staring at. A few times he screamed in fear. It was heartbreaking to watch and then hear him talk later about seeing something scary. He would ask, "When is this going to end"?
Since he's stopped taking the Lamotrigine, he's also stopped having his "scary" seizures. No one misses those ones.
Well, I was feeling pretty good that we were down 2 meds, but there was another that we were leery to begin in the first place...the hydrocortisone. Hello, it's a steroid in an 8 year olds body...not good. He gained probably 15 lbs within 6-8 weeks, his blood pressure was increasing along with mood swings. We were working with the assumption that he had an autoimmune condition, and a steroid should have cut seizures down drastically. It did not.
As much as these medications can do good, they can also do harm. It is a huge relief to not give them to our son any more. However, when so many medications are taken away there is usually another to take their place. Our newest, and possibly last medication option: Topiramate, otherwise known as Topamax.