Continued Blessings

I wish we had tried this medication (onfi) years ago. Maybe it was not meant to be our miracle then, but it certainly appears to be so now. We continue to see fewer seizures. Like other successful treatments we are also seeing that many of the seizures she does have are shorter. Which means the events I do see are often REALLY short. It means I may be deluding myself in how few seizures she is having, simply because some of them are so short that I don’t see them, or can’t determine them to be seizures. Alas if I can not determine it to be a seizure I can not record it as such (and that is nothing new!)
This medication has one odd side effect. Well not odd per-say. It is making her hyper. She has these manic giggle fits. These are NOT gelastic seizures for any of my curious Epi friends (she has had those). Nope, this is plain and simple hyper mania brought on my medications. The medication that the Onfi is replacing was very sedating. We never really thought it sedated Becca so much until we took it away. The same can be said about the Keppra. We never saw Keppra rage, until we took Keppra away and she was calmer. Oh well. It is still to be determined if the Onfi is causing some ataxia (gait problems). We have our PT appointment tomorrow morning to see if Becca might benefit from AFOs.
Yesterday Becca had her dentist appointment. Technically it was considered surgery. We went to Wake Med – where her dentist does procedures (their office is on that side of Raleigh). Becca was put under General Anesthesia and had a full set of x-rays, a full cleaning and had sealants put on her 6 year old molars. She has had a cleaning but it was not as thorough as this one, since she doesn’t cooperate well. The other two things could not have been done without putting her to sleep. The dentist determined that her two lateral incisors were a bit loose, so she went ahead and extracted those. So Becca is back to being the toothless wonder. I’m glad the dentist took care of that. I knew she was due for more loose teeth, and I have hated this stress.
Her babbling continues. Some days more than others. Our biggest hurdle right now is her near constant chewing on her hand. The left fist is almost always in her mouth. No matter what David and I do, she puts it right back in her mouth. She thinks it is a game. She starts laughing when we scold her about her hand in her mouth. Her personality of being born a sixteen year old continues.
I guess that is about all I have to update for now. Things are going well. We are riding this high while it lasts. Loving every second.

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One thought on “Continued Blessings

  1. I have been following Becca’s story for along time. I was just wondering where you all got her bed? I have been looking for my daughter,she really needs one of thos.

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