Well that certainly was a short experiment. The Clobazam run didn't last very long at all. The fact is, is that since we introduced what was our best hope at a miracle drug, seizures have gotten worse while on it. Since the start a few weeks ago, Dawson's seizures have been on the increase with intensity. He is not having more seizures so to speak, but the ones he is having are getting lengthy and they are affecting him more. On average he is having anywhere from 2 or 3 a day up to 12-15 a day.
In the past, his seizures for the most part have lasted only seconds, we have watched them over the past couple of weeks get longer and longer and longer. We recently did an increase of the Clobazam as scheduled and they have gotten even worse. He had one today that lasted around a minute and they have been wiping him out afterwards as well. Hell have a big one and then immediately fall asleep. They are also leaving him dazed and literally knocking him off his feet when he is playing as well. So we called his Neurologist this afternoon and as we already suspected, we are to discontinue use of the Clobazam.... Another failed drug!!! Not only did it not help, it made things worse.
ACTH.. failed
Keppra.. failed
Topamax... failed
Zonegran.. failed
Banzel... failed
B6 Therapy... failed
Lamictal...failed
Vigabatrin.. failed
Clobazam.. failed
I have no idea whats next.. whats it gonna take?? Needless to say, this evening were feeling a little deflated about this beautiful little boy who is attacked relentlessly by the seizure monster on a daily basis.
Tomorrow our hero turns 3. Were having a family get together over here and since the weather is supposed to be absolutely awesome tomorrow, we plan to be outdoors ( Dawson's favorite place)
Pray for us as we work with his Doctors to try to figure out whats next..
Happy birthday little buddy!!!
Jeff
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5 comments:
Happy Birthday Dawson!!!! I hope you have a great day :)Maybe oneday we will find a miracle drug to stop us from having seizures. Sorry the clobazam didn't work. I know the feeling :(
I'm so sorry, guys. We'll be praying for direction and peace over your family.
...danielle
HAPPY BIRTHDAY DAWSON!!! Sounds like a fun day (although I couldn't participate--heat and 'morning sickness' don't mix!! I am seriously crossing my fingers that it'll ease up soon!) Praying peace for you guys!:) Love you!:)
I am so sorry for you and your little super-hero...I do know your frustration, and helpless wondering.
Praying Dawson has a fabulous day with no seizures and an even greater 3rd year.
in thought and prayer...Deb
Have you thought about the ketogenic diet? It's helped my daughter not have a seizure since mid June and her brain is more open to learning. It's like she came alive overnight. She is five months older than Dawson and had IS and partial seizures. The IS was resolved by surgery but she started having partials two months later and they got worse and her EEG background got worse until we started the diet.
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