Banzel has been a nightmare. We thought Sophie was regressing. We saw quite a bit of decrease in her verbal speech and ability to focus. Broke my heart. Scared me to pieces. But as we weaned Banzel, we saw things start to pick up again. What a relief!!! As of this morning we are completely off Banzel.
On the other hand, Sophie's seizures have been a little scary lately. She mostly has tonic seizures (quick seizures in which her head will drop and her arms will fly out...each seizure only last a second but they come in clusters). But lately she has been having more atonic seizures (head will slightly decrease and arms will fly out but she freezes in this position for 5 to 10 seconds while her body slightly shakes). Usually, she will only have one of these at a time. But on 2 separate occassions, she had 4 atonic seizures in a row. Completely wiped her out. She will immediately cuddle up in my arms and fall asleep for 15 to 30 minutes. Breaks my heart.
So is this because of the weaning of the Banzel or increasing of the Felbatol? She always has withdrawal seizures. Even if the med did absolutely nothing for her seizures!!! ABSOLUTELY SUCKS!!! How can a med that does absolutely nothing for seizures cause them to get worse during the wean??? Luckily, her seizures eventually stabilize.
So for Felbatol...we are currently at 2.5ml/day (1ml in AM, .5ml at 2pm, 1ml in PM).
On the other hand, Sophie's seizures have been a little scary lately. She mostly has tonic seizures (quick seizures in which her head will drop and her arms will fly out...each seizure only last a second but they come in clusters). But lately she has been having more atonic seizures (head will slightly decrease and arms will fly out but she freezes in this position for 5 to 10 seconds while her body slightly shakes). Usually, she will only have one of these at a time. But on 2 separate occassions, she had 4 atonic seizures in a row. Completely wiped her out. She will immediately cuddle up in my arms and fall asleep for 15 to 30 minutes. Breaks my heart.
So is this because of the weaning of the Banzel or increasing of the Felbatol? She always has withdrawal seizures. Even if the med did absolutely nothing for her seizures!!! ABSOLUTELY SUCKS!!! How can a med that does absolutely nothing for seizures cause them to get worse during the wean??? Luckily, her seizures eventually stabilize.
So for Felbatol...we are currently at 2.5ml/day (1ml in AM, .5ml at 2pm, 1ml in PM).
7 comments:
It is mind-boggling how these meds screw with us. Really is.
But at least you got her off the Banzel.
Sorry to hear that Banzel did nothing to help Sophie. I'm still trying to figure out what it's doing for Aidan. It seemed great when we first started it, but then when we lowered his Lyrica everything went downhill. He's currently on the doses he was on when he was seizure free for 3 weeks, but we're still seeing 1-3 head drops a day. I think I'm going to try to increase his Clobazam some and see if that helps since he's on a low dose. I hate this med game we're forced to play with trying to figure out which ones work and which ones don't.
Our Banzel experience has been quite a nightmare too. I don't know if it's a coincidence or not, but Austin's seizures have actually gone up since we started. Our epi is trying to convince me to give it more time, but I'm getting more impatient with every cluster! He'll have 2-3clusters back to back...and he's NEVER done that. In fact, clusters were almost non-existent for a while.
I hope everything gets straightened back out soon. It's heartbreaking to keep seeing seizures over and over as it is...even worse to see different, more dramatic seizures on top of that.
Good luck...
We're still giving Banzel some time...but since we introduced it the first few seizures per cluster are more atonic. Trevor's arms fly up...and hold for a few seconds. When the seizure releases him...he laughs like a mad man. It's very bizarre. Then he proceeds to have a few more atonic-ish seizures...before our "normal" IS-ish cluster seizures resume. I hate it.
I'm glad to hear you say that as you weaned the Banzel Sophie picked up her "forgotten" skills. We've been secretly freaked out. Although Jonathan vocalized it the other night..asking me if I thought Trev was regressing. I'm hoping it's a drug factor...
Ugh...
and if I knew it was related to Banzel we'd be coming off it RIGHT now.
We're the same...the drugs don't help...but always cause major seizures during the wean. That truly sucks...
((((hugs))))
...danielle
You and sweet Sophie are in our thoughts and prayers.
I am so sorry to hear that the Banzel has not worked...Colby seems to be doing pretty well so far (knock on wood)...He actually has not FALLEN with a seizure since Monday...We are up to 400mg AM/500 mg PM...(This is in addition to his four other sz. meds)...We have a long ways to go to reach the full adult dose...So we shall see...It seems that the majority of you whose children have I.S. are not responding well to the Banzel...Maybe we are having more success because I.S. is NOT his diagnosis...???...Who knows?? We will continue to go up on it until we see there is problem...We see our Dr. Neuro Tuesday (also cardiologist and tests), so it will be an interesting appt. I, too, HATE medication changes!!!!
Another drug that has been mentioned that we MIGHT try as a last resort is Frisium...It is not approved here in the US, so we would have to get it from Canada...Our neuro has many kids on it and do fine...It is actually a 30+ year old drug that is as safe as other sz. drugs...It is very similar to Clonipin...I guess we will go that route if the Banzel fails...
Hope you have a good Mother's Day...I know these are hard times...Keep the faith! You'll get through this!
Wow, this scares me, my daughters dr. just suggested banzel and we are fighting with insurance to cover it now. She said there weren't many side effects. But as I researched it seems like there is. That is how I found your blog. Kylee, my daughter, is 12 and has been on 8 different meds. since she was 8, none seem to help!
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