Bye Bye Phenobarab!

I am so proud to announce that Truitt had his very LAST dose of Phenobarbital last night!!! Wooohoooooooo!!! We have been waiting years for this day to come. It feels just as great to lose that med as I always imagined it would. One less medication.

Truitt has been on Phenobarbital since he was 18 hours old and had his first seizures. It is a great med for babies, but studies show it is more harmful than beneficial to give to older kids. Long-term side-effects including drowsiness, behavior problems, and it has been known to lower a child's IQ if it isn't weaned within the first few years of childhood. Last year we began weaning from the 6 ml he started at and made it down to 3 ml when he started having seizures again. We were forced to halt the wean until his seizures were controlled for at least a month or two. When he finally reached that milestone in the Spring, it was on again with the wean.

This time around we were forwarned that the last few ml's are the hardest to get rid of. We prepared ourselves for the worst, seizures and extreme irritability. Specifically the last .5 ml. We dropped his dose by .25 ml weekly. To our surprise, week after week, he did fantastic. He made it down to .75 ml before we ever saw one seizure and he had no irritability, until then. But the very day we went down to .75 ml he began having very tiny 5 second seizures and showed some irritability. He would cry for no reason, and nothing could calm him down. He would only cry like that every couple of days, but when he did it was so hard for me. When I can't do anything in this world to calm down my very distraught little boy, it is heart breaking and more than anything very frustrating. I hate to think of how he must have been feeling during those moments of crying. He has been on this med his whole life, so his little body had to go through crazy withdraw, especially since this med in particular has alcohol in it.

I'm anxious to see how the next few days go when he doesn't get a dose at all. Even though his last dose was just a measely .25 ml, which is hardly a drop, the body still responds to it being gone. Hopefully he will only get better from here, and these teeny tiny seizures will disappear on their own with having to increase one of his other meds.

Truitt is currently on Keppra and Topamax for his seizures. I would LOVE to get rid of Topamax too. In time, hopefully. A momma can dream :)