The scary thing about starting a new drug is that you never know what your going to get as far as how well its going to work and the side effects of it. Dawson started Zonegran a few days ago and were watching him closely to see if its having any effects. I know, I know, its WAY to early in the ball game and his starting dose is very low to tell any difference.. But were watching him closely anyway.. Were weird like that I guess.
So far, no change in seizures. Still having a cluster at some point in time during night time sleep and the rest of the day he has a fussy clingy period followed by a single spasms like seizure. He is having about 6-10 daytime seizures. I am so tired of these things. The seizure itself is very brief but all the crap leading up to the seizure can last 30 min to an hour. If you do that math, that leaves little time for him to be down running around playing and just being a kid. It seems like this month we are loosing more and more of that precious time with him to fussy seizure/med stuff.
I can tell already that the Zonegran seems to be making him sleepy, which in turn, also makes him fussy. He is napping more and longer than usual and I'm sure that once we get titrated up and he gets used to it,that will subside right??? somebody please tell me it will... Lie to me if you have to because we hate seeing Dawson this way. We have a few days left before we make the first decrease in his Keppra ( which hopefully will help some too)
Hopefully tomorrow will be a little better than today was.
Thank you for your many prayers!
Jeff and Allison
Subscribe to:
Post Comments (Atom)
2 comments:
Seems like,in my experience,with all medication that has the potential side effect of fatigue and drowsiness,that they adjust right before having to go up to the next dosage.Followed by more of the same until they reach the desired dosage.Nasty part of the process I'm afraid.
So sorry you guys continue to battle this.So sorry for Dawson.Between Dawson and Reagan,my heart is heavy and just wants these kids to catch a break.
Prayers continue here in California.
Hey Jeff...just curious what time of day Dawson gets the zonisamide?
Hudson gets it at night, once a day, 225mg. I suggest, if you are not, to give it to him at bedtime.
I start the "new drug" (lamictil) for Hudson tonight. I picked up the script today and will give it to him tonight. I give him one every other day for 2 weeks, then once a day. We'll see...today has been a tiny bit better seizure wise...altho he threw up this morning choking on a big cough/mucous....ggrrrr!
I will be praying you have good results with your new drug, and yes it will take time...wouldn't it be nice to know how a drug is going to work after one day? Oh, I wish it were so!
Always in thought and prayer!
Post a Comment