He is now on Vigabatrin (Sabril) for the infantile spasms, Nitrazepam (a type of benzodiazepine) for his tonic seizures, and Omeprazole for reflux/throwing up. We are currently weaning him off Trileptal. Oh, and we give him Restoralax since the other meds tend to constipate the poor guy. Just got a call from his Neuro nurse, we're adding on Topamax now too...sigh.
Now the challenge really comes in coordinating all these drugs. Today I have to give him medication six times (sabril twice/day). But just a few days ago he was also getting trileptal and nitrazepam twice a day, so with tummy meds, that's medication eight times a day! Luckily none interact with each other, except perhaps omeprazole slowing the uptake of other meds. However we to be careful to wait half an hour between meds, and often between meds and feedings, because Braxton had a habit of throwing up. Half an hour after meds have been administered we don't have to redo them if he throws up as its assumed they are into his system. I can't tell you how frustrating it is to get all Braxton's meds down and him have a good nurse, just to have it all come up all over you. In fact that's the one thing that makes me want to cry. I can't explain how much effort it takes to get the needed meds and milk onto him. Yesterday he threw up five times, day before four, day before that three time. And although my milk is a renewable resource, it's not like I can just pop him back on the boob after he just emptied me. Many nights we are up past midnight just to make sure he has got all of his medication in.
The next stage is to try steroids and that scares me. Although the meds are a pain, I have learned how to administer them orally, which can be mixed with his milk in a bottle, which to use a syringe, how to mix up the ones that are a powder, and which compounds need to be refrigerated. Injecting steroids is a whole new ball game. Let the games begin.