Tuesday, January 20, 2015
Welcome Back, Lyrica
We gave this a good run, but taking Mira off of Lyrica has been a complete disaster. This is a medication that she has been on for 7+ years and we decided back in November to wean her off it, as it appeared to have zero efficacy with seizure control. That still holds true. Lyrica does little to nothing for her seizures, but as we discovered over the past 6 weeks, it does a ton for her irritability.
After having another miserable day yesterday, wailing and crying for hours, we gave Mira trazodone. It took an hour to start working to calm her down, this after going for several hours just crying. This is the second time in the last few weeks that we had to resort to giving it to her, as she was having another awful day this week. We have gone to the trazodone more in the past month than the past 2-3 years combined. Mira is exhausted and we are exhausted from all of the inconsolable crying.
Thus, after talking with neurology, we collectively decided to put her back on a low dosage of Lyrica. It's safe to say that this medication change (we have been through a ton of them in the last 9 1/2 years) was an utter failure. Let's take a look at the equation:
Seizures + Irritability = Misery
Take your pick. Mira has uncontrollable seizures, which no medication, diet, or therapy can stop. Add extreme irritability to the mix and you get misery. By putting her back on Lyrica, hopefully at least one of those symptoms will diminish or even drop out of the equation completely. It feels as though you are picking the lesser of two evils sometimes. Ineffective pharmaceuticals or wailing or both.
We started her back on it this morning and by this evening, you could already notice a change in her mood. She wasn't screaming through her bath and her appetite has returned in full force, as she downed three bottles in 20 minutes. I also noticed her putting her hands in her mouth, repeatedly. I'm not sure this is a stimming ritual or what - many girls with Rett Syndrome tend to do this a lot. I hadn't seen her do this over the past few months and she was doing it non-stop after her bath. She was also laughing some while she was doing it.
We are still keeping her on the Vimpat as well. It's also a very low dosage. At this point, we have to just live with the seizures, as Mira always has. She had over 100 myoclonics the first hour she was awake this morning, which is why we are always searching for help to try and stop them. They just overwhelm her some days and she can't do anything. At least now, maybe her demeanor will improve.