Wednesday, September 5, 2012

Phenobarbital or Lyrica?

Sleep wasn't great again for Reagan last night. She was fighting it and would get very vocal and kick and roll around. She got some sleep, but not much. I had no idea what to expect this morning for our 9am doctors appt...but I was pleasantly surprised. Reagan and Ryan both fell asleep on our ride in and both were good for the whole appt (of course the nurse practitioner that came in with the doctor played with Ryan the whole time, so that's the only reason he stayed quiet). We talked a lot about Reagan's bad days and what we could possibly do to either stop or make them more bearable. One route to go is try something neurological. The cycling of good/bad days really started up just as Reagan became seizure free, so it's possible that her brain is still trying to misfire...but this is what's coming out instead of seizures. The meds we could try for that are phenobarbital or lyrica. We've never tried either of if anyone has any experience with them, I'd love to hear (although Reagan has tried neurontin, an older derivative of lyrica, and it didn't do a thing for her) . The other route to go would be more pain meds. Higher doses of hydrocodone, things stronger than hydrocodone, opiods (fentanyl patch, morphine, or methadone). I'm leaning toward trying one of the two seizure meds first. All of these things are potentially sedating, but the idea is to try a low dose and go from there (Reagan is notoriously resistant to sedation anyway). After our appt we picked up Reagan's AFOs (which were being adjusted AGAIN) and headed home for speech. Reagan's therapist was waiting for us and got started on therapy right away. The rest of the afternoon was pretty laid back. Reagan was still vocalizing a lot today but she sounded a little less stressed than the past couple days (less stressed=more happy). Tonight she did have a big throw up (maybe I jumped the gun feeding her this afternoon). It kinda came out of no where (although she was having wet burps all day) and then I hooked a drain up to her g-tube and a good amount of drained fluid from her tummy. It was a horrible sort of throw up...usually she'll just cough and out comes the throw up...there was a lot of retching with this one (reminded me of someone with a stomach virus). Hopefully it was nothing. I'm praying she sleeps tonight and wakes up without any nausea and happy tomorrow. (Ryan had his 6month follow up today...the doctor said he's about the size of a 1yr old! Just short of 23lbs, he's more than a handful!)


Diane said...

Sounds like it was a good visit for Reagan with the new Dr- nice to have some options to try to handle these cycles.. Fingers crossed which ever one you pick will work on the first try!

Sounds like a future football player on your hands! :-) Abby was quite the plump one at that age too, I love how nice and squishy babies that nurse get at that age.. soon enough he will be crawling all over and lose that delightful baby squishy! :-)
So glad you guys had a calm and good outing!

The VW's said...

Gavin was on Phenobarbitol for about a year, and he was very sedated on it. (He also has a history of sedation issues.....but usually the opposite effect.....he is hard to keep sedated.) We thought his sedated behavior was due to his hypoxic brain injury, but once he was weaned off the med, he became much more alert. In fact, Gavin almost never smiled when he was on that drug, so we were very happy when he was able to come off of it. I hope you find the right solution for Reagan! Love, Hugs and Prayers!

Sarah said...

My daughter has been on Lyrica for almost 5yrs. It has given us partial sz control but her main side effect has been significant weight gain ... as in 27lbs over the last 2 years. When she was on it alone we struggled with some significant irritability (it's unlikely, in my mind, that her discontent was caused by the Lyrica) so we added clorazepate (tranxene). It helped her immeasurably. We are now in the midst of weaning her off the cloraz/tranxene and trying ONFI/clobazam. If it's successful we will likely try to wean off the lyrica as well (tho I'm not too hopeful that will be a success). Her weight is a significant issue at this point ... not one we would trade for increased sz but we will see what happens.

Engstrom Family Of 5 said...

Nolan has tried both. Lyrica was not a god drug for him in general, and did not stop the seizures or cycles.

He has been on Phenobarbital for almost three years now. It has been one of the more effective drugs for seizure control (although he is not controlled completely even with it and three other AED's). We also use it as a rescue drug - i.e. we load when we see his cycles starting. Using it in this way has been very effective in keeping us out of the ER, because when he cycles, his seizures get out of control.

I will say it is very sedating and that has it's pro's and con's - we only give him daily dose at bedtime and through the night and take advantage of the side effect.

It also causes what we call the "Phenobarb Feist" because he can get very irritable with it....but, we would still rather have that than the cycles getting out of hand.

Lastly, Nolan has been on dozens of drugs -- we have weaned him off of alot of them. I would say that Phenobarbital is probably one of the hardest ones we have ever encountered to wean.

Best of luck


Maggie said...

About a year ago, we finally gave in a saw a pain specialist for Camille due to her intense irritability. She recommended Methadone, which I was VERY hesitant about, but it ended up being the best thing we have ever done for her. Camille had always seemed like she was highly uncomfortable and feeling pain, and Methadone has completely turned things around for her. She still has some bad days, but they are rare. Just something to think about! Hope you can find something for your sweet girl that will help her feel better!