July 09 new drug- Banzel
The year is officially half over. The seizures this year have been coming with regularity resulting in 4-6 large episodes per month, which ends up being one to two per week. On occasion he will go 2 weeks seizure free. Every other seizure goes into status requiring medication to stop. This year we have also seen a lot of twitching mostly in his hands, which I can assume is some kind of partial seizure activity.
This month Drake is trying a new drug called Banzel. It has been recently approved by the FDA as an adjunct medication for Lennox Gastaux Syndrome (LGS). We have been titrating the medication and he is currently on 200 mg a.m. and 200 mg. p.m. We are not seeing any immediate benefit. In the last two weeks while on Benzel he has actually had more hand tremor and a few episodes of myoclonic seizure activity lasting over 20 minutes (myoclonic episodes look like he is being electrocuted). It is too early to know if the drug is going to help Drake, but our neurologist has a couple children on her caseload that it has helped.
Banzel at 200 mg. two times a day is not causing Drake discomfort and is not changing his personality like drugs often can. He still has days when he is happy and for this I am grateful.
When Drake has a few days back to back with out seizures he can be lucid and chipper. These are some of my favorite times with Drake. Every new drug you try you think this could be the one. The one that could work. I do not like putting my child on new drugs. Over the years I have done it many times. It is not fun or easy and it can be very hard on him. Looking back and taking inventory on how I have managed Drake’s epilepsy I wish that I had tried more drugs in the first few years. I have taken that regret to heart and now continue to ask the neurologist for the next drug to try. I read somewhere that when the first 3 medications are not effective that you have reduced odds of ever finding an effective drug. The responsible thing is to do is continue fighting the good fight and have fun along the way. With that said cheer to Banzel and happy Independence Day to you all.
This entry was posted on Sun, 07/19/2009 - 02:25 and is filed under .
