We are approaching the start date to getting Dawson on Clobazam. Of course I get online and read everything I can about it.. I have a way of "over educating" myself on this kind of stuff.. Out of all the drugs we have tried, this one seems to be the most inline, as far as treatment goes, for his seizure type right now. Buuttttttt... I keep reading things like this.
"We tried this medication for a short period of time. For us it was a disaster. Did nothing to help control seizures and on top of it Alex became very volatile with aggressive outbursts."
"Lauren was on this for 6 months when she was 3 1/2. It was a terrible drug for her too. She became really oppositional and aggressive on it to the point that we did not have much quality of life as a family. No one admitted that it would cause such problems (she was on a low dose 10mg/day), but as soon as we got her off, she became a much nicer child! Coincidence? I dont think so."
"Ana is currently on clobazam for the second time. Does she have seizure control - yes... at the cost of our family's quality of life. She screams, bites herself, hits, doesn't sleep, and on and on and on. I'm sorry, I know you were looking for some positive. I know some kids get sleepy on it, that wouldn't be so bad? Ana is up to 20mg a day but even at lower doses we had problems"
"We put our 3 yr old boy on 20mg per day and at first it worked well but after 3 months he worse than ever.His behavior has changed and he constantly dribbles,he struggles with his speech,and is totaly lethargic.We are now going to try to wean him off it.Looking at the long term effects had i known what i know now i wouldnt have gone near the drug.Desparation to find a solution sometimes make us oblivious to the risks which in a lot of cases means that the outcome of using a drug can be worse than the reason or illness that we are trying to prevent in the first place."
GRRRRRRR!!!
Ok so heres the thing. I realize that for every bad story, I can find one that says the drug caused no behavioral issues and worked perfectly. I know this. BUT ( and Im going on nearly 3 years of history here) If rage, aggressiveness, or behavioral issues are even mentioned as a side effect, then its trouble for Dawson. He seems to be very sensitive in this area. I mean currently we are on Keppra ( very low dose) Zonegran, Banzel, and B6 and we already have more issues in this area than we can stand. It really effects all of our quality of life. We don'd dare try to go out and eat, we just have to pick and choose where we take him right now. Short trip to the store...... OK for the most part. Running errands??? completely out of the question.
Sooooooooo.. Yeah, Im nervous about Clobazam.
( and excited because maybe, just maybe, this one will be the one)
Your prayers are so appreciated
Jeff
About Me
- Dawson
- Dawson was born Sept 4 2007 and was diagnosed as having Infantile Spasms when he was 2 months old. Infantile spasms are a rare seizure disorder. Our story is one of faith and hope. Dawson now has multiple seizure types as well as developmental delays. We are prayerful that we will be able to find a way to stop the seizure monster that lurks in his brain. Your prayers and support mean the world to us.
2 comments:
Prayers of peace for your nervous hearts.
I know your nervousness of starting a new med. Reagan's supposed to try a new med for her chorea movements but I'm too nervous and haven't given it to her yet. For the record, we never saw any negative side effects from Clobazam. Reagan has been on it for over a year now and although it didn't help her seizures...it helped her to sleep better at night (and who knows, maybe it's the combination of Banzel and Clobazam that stopped her seizures, either way we don't dare mess with it). I'll certainly keep you guys in my prayers!
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