We have been slowly weaning Mira off of clorazepate (Tranxene) for a few weeks now and we are not quite half way through it. Benzodiazepines are very sedating and will not only cause the body to build up a tolerance to these types of medication, but weaning can cause significant and severe withdrawal symptoms if someone has been on it for a long time, thus the very slow wean for Mira.
On the direction of her neurologist, we are dropping her a quarter tab every week, which will (fingers crossed) get her completely rid of it in 6 weeks. This comes after dropping her a full tab over the past 6 weeks. We have been seeing an increase in larger tonic-clonic seizures and a ton of twitching/myoclonic type seizures the day after a decrease in her dosage. For instance, we dropped her dosage last night and this morning she had two big seizures almost back to back, then several hours of twitching, which was making her pretty irritable. It seemed to wear off over the day.
We hope to get her off of this medication altogether, but we are taking it slow. Mira added clorazepate to her seizure medication regiment about 2 1/2 years ago, only because we were dealing with some serious irritability with her. So far, we haven't seen too much change in her demeanor. Her seizure activity is questionable right now.
On a high note, we received a letter back from Mira's insurance on her new chair and it was approved! Phase one complete. Now, if we can only get the seating company moving forward, we might be in a good position to have her chair in 4-6 weeks.
5 comments:
I have a question about Lyrica. Reagan's doctor wants us to try it to help with her pain issues (her seizures have been controlled with Banzel/Clobazam for almost 3yrs now). I know Mira has been on this for a while and I was just curious what your thoughts were. I know you mentioned weight gain...is that because she eats more when on it (I'm assuming she's not tube fed)? What about any other side effects or reasons we'd want to avoid it??
Lyrica was the miracle med for Mira for a while and it stopped all seizure activity for almost 6 months. We don't know if it was necessarily helping with nerve pain (assuming she was having nerve pain and that is what pregabalin is marketed for helping with) but it helped with her seizures. We found that after being on it for five years, she has grown exponentially. We could attribute her weight gain to Lyrica or her protein powder/rice milk diet (you are correct she does not have a g-tube). I think it is a combination of both. We are working with a dietician to help with her weight, which seems to be helping already. We haven't noticed any other side effects with Lyrica and in fact, that last time we tried to wean her off Lyrica, we saw a huge increase in seizures. We hope it won't happen again if we try to wean her. We added clobazam and she seems to be tolerating it well. Hope this helps!
My only concern in adding other seizure meds is disrupting her seizure freedom...that's the last thing we want to do!!! Although Lyrica isn't what you would think of as a traditional seizure med...so I'm still not sure...
I can understand that - you definitely don't want to rock the boat. Our first neuro told us, that in terms of finding a medication that works, that we were basically just throwing darts at the map and seeing what sticks. I feel like that every time we even start thinking about changing her meds. It is a tough decision.......
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