I know my title sounds utterly crazy. Beyond crazy. BUT stop and think for a second. Her little brain has had so much seizure activity for 6 1/2 years now. She was having an average of 4.5 events a day. If you counted her head drops as individual seizures instead of singular events that number shoots up to 50-100 seizures a day. Yes, you read that right. Those head drops have anywhere from a dozen or so seizures to upwards of 50. Thanks to this new medication they are GONE. Her other seizures are doing better as well. This means that her brain is no longer in the electrical firestorm of seizures all day long. Now that this has happened her brain is having to re-organize. Remember this is a child who has had seizures almost her entire life. Her brain doesn’t really know what it is like to not have this firestorm. Therefore we’ve been dealing with a firestorm of a different kind as a result.
Remember that manic laughing I mentioned in the last update? Things have gotten a bit more difficult. For one thing we can not keep her from chewing on her left hand (she will chew on her right hand, but not so much). This is more than sucking on her fingers – she is shoving her whole fist in her mouth at times. She has ended up getting little sores in that webbing space between the fingers. I went out and bought a kiddie rubber gardening glove to cover her hand. We had to have something to keep the area clean and dry so it can heal. We’ve TRIED behavior modification. She laughs when you tell her “No hand” or “stop”. When you take her hand out of her mouth, she waits a few moments and puts it right back in. Smack her hand? Ehh she lets out a noise of displeasure and goes right back to chewing. She HAS chewies. She is simply preferring the sensation she gets from her fingers right now. I don’t know why.
Then there is what I call the Becca body meld. She doesn’t just try to snuggle. She tries to physically become meld with you. Like she can’t get close enough. She has a highly annoying habit of reaching her left arm around your neck so incredibly tight. So imagine the child laying chest to chest with you. Her knees pulled up. She takes her left arm and wraps it around your neck so tightly that her little 6-year-old arm wraps ALL THE WAY AROUND and she can then shove it in her mouth. CHOKE! And heaven forbid you try to stop her as she is doing this. She is incredibly strong. And many times in her attempt to get her arm around you she is clawing you. So yeah, when I say my child is beating the crap out of me, this is what I mean. She will literally try to climb up me when I am walking into the other room.
I was so glad to drop her off at school yesterday. But much to my chagrin the report from her teacher was she was in a great mood and her behavior was great all day. Ohh gee thanks kid. Beat up on mommy and daddy all weekend and be nice to your teachers? I really feel the love!
BUT – we did start her on a new medication to help with these behaviors, that according to the neuro are OCD and “Autistic-like” (No one thinks Becca is autistic though). We’ve not been on it a week yet, so it’s too soon to tell. So far I think I am seeing some decrease in these behaviors.
Her PT appointment I mentioned last update went fine. We decided to go with getting her “real” high tops (not converse cloth ones). There would not be much difference between these and SMOs (supra-malleo orthosis – otherwise known as orthotics that are only ankle high). The shoes should give her that same support and input. If we don’t find that these help we will order her SMO’s. The PT doesn’t want to go with full AFO’s. For my non medical friends – the full ones would come nearly up to her knee. The thought is those would limit her mobility more. She is getting more used to her new shoes. Plain high tops, but of course they are heavy and cumbersome. I mean come on – how many of us can easily walk if someone slapped on a pair of hiking boots. It’s not much different for her little feet.
Well I think that is our update for now. Eye Doctor tomorrow.
Pray for us that her behaviors normalize. Pray that our miracle with Onfi continues. And of course lift up all of our other Epilepsy friends, those doing good now, and those who are having a hard time. It is a long hard battle.