Thursday, October 6, 2011

Minimizing the Fog, Maximizing the Smiles


Ashley’s semiannual visit with her neurologist this week went very well. I was very excited to tell him about weaning Ashley off two of her meds – the two that in my opinion have the worst side effects.

She had been on Risperdal since early elementary school – about 11 years. Initially it was prescribed to help with self-injurious behaviors. I always believed that if she could develop a communication system, the behaviors would be significantly reduced or would disappear. But since things in the school system seldom move at the pace I would prefer, getting an appropriate communication system in place took a while. But I was correct – as her communication, both expressive and receptive, increased, the self-injurious behaviors decreased.

So ever so slowly I have been reducing her dose of Risperdal and this summer, ended it completely. The good news – no adverse effects. In fact, she seems happier all the time.

She had also been on Keppra, an anti-seizure medication, for about 8 years. As she approached and moved through the early stages of puberty, her seizures were out of control. At one point she was on four different medications trying to control the seizures, and all we could do was get them down to 5-7 a day. Two of the four medications she took for her seizures – Keppra and Topamax – have a tendency to increase aggressive behavior. Hence, we were tied to the Risperdal.

We ditched the Topamax after just a year because it truly was one of the worst medications I have ever seen, and I didn’t feel like it was making much of a difference with her seizures. This past summer, I decided to try weaning the Keppra also. And lo and behold – after just a small increase of seizures during the weaning process, Ashley is now down to 2-3 seizures a week, and those are usually very mild. And without those other meds in her body, she is so much happier.

Playing with medications for serious conditions likes seizures can be very daunting, but I do recommend that you constantly keep an open mind about them. I don’t regret having Ashley on the meds we have now removed – they helped when she needed the help. But, I am very glad that for the moment we have been able to stop them. She is still on several meds – Depakene and Trileptal for seizures, Clonidine for sleep, Strattera for ADHD (which in her case is very extreme), and Claritin and Nasonex for allergies. And in my dreams, we do reach a time when she won’t need any medications.

For now, though, I love having a less-foggy brained, very beautiful daughter!

3 comments:

Krystle said...

Way to go! So many people just stay on the meds forever, as if they are a life line, which yes they can be, but in today's society over-medication is a HUGE problem.
I was on topamax for migraine prevention and I ditched it after 2 weeks or so, it literally made me "feel stupid." I was forgetting everything...and I would go completely blank!

So glad she's happier without the medicine and not having negative effects from quitting them!

MMC said...

Way to go Ashley! (And Mom :)
Interesting, I had never heard about the connection btn aggressive behaviour and Keppra ... the Blue Jay has been on it for quite a few years now. It's the only drug that has ever stopped her seizures.

About the Topomax ... I always knew it had a nickname of Dopamax (because it makes you so stupid) among parents. But I was surprised when I heard our neuro call it Toxicmax. I think it's used more now as a weight loss drug than as a seizure med. And the saying there is that it works well for weight loss because it makes you stupid you forget to eat!

Hey, no one ever said meication jokes were out of bounds, did they? :D

MMC said...

Way to go Ashley! (And Mom :)
Interesting, I had never heard about the connection btn aggressive behaviour and Keppra ... the Blue Jay has been on it for quite a few years now. It's the only drug that has ever stopped her seizures.

About the Topomax ... I always knew it had a nickname of Dopamax (because it makes you so stupid) among parents. But I was surprised when I heard our neuro call it Toxicmax. I think it's used more now as a weight loss drug than as a seizure med. And the saying there is that it works well for weight loss because it makes you stupid you forget to eat!

Hey, no one ever said meication jokes were out of bounds, did they? :D