We met with Dr. Raja, Hannah’s new neurologist on Thursday. Like every other neuro office we have had to wait in this city, we were waiting for over an hour before we got into the room.
However, when he came into the room and sat down, there was just something different about his demeanor compared to the other neuro we have seen here. He was curious, attentive, asked a lot of relevant questions, and admitted that he didn’t know how Gaucher’s directly plays into her neuro issues. I love when doctors admit that they don’t know everything but are willing to work with me and “partner together” in Hannah’s care.
He asked me what my main concerns were neuro-wise, and we discussed her seizure disorder and her movement disorder.
I told him that I made the decision to up Hannah’s Klonopin slightly (up 0.5 mL t.i.d.) after we got her level back (it was 11, 30 being low-normal) even after her other neuro said she just wanted to sit and wait. Both Hannah’s nurse who was with me and I both shared that we have noticed better control of her movement disorder on this higher dose. Even Hannah’s infusion nurse noticed that Hannah’s hand movements were more controlled at her infusion on Monday, this without me telling her we had upped the dose first.
He made the comment to me that next time I feel that the dose needs to be upped to let him know. He knows that I am the one that knows her best, especially in light of her unique circumstances. Obviously I am not going to drug up my child on purpose, so this was reassuring to get that kind of support.
He also made an interesting observation which I need to look more into. He said that Hannah’s body was not spastic (which we knew), and that because spasticity isn’t one of her symptoms right now, with intensive PT and OT, she should be able to continue to build up muscle strength. Admittedly we had been slacking in that area, but not anymore.
We are going to do an overnight EEG in a couple of months (after flu and RSV season) to see what exactly is going on with Hannah at night…seizures, apnea, etc. We both don’t think it is a good idea to expose her at this time with an overnight stay in the hospital because she isn’t having any serious issues at this point. If things become more pressing, then we can move it up. Sounded like a great plan to me.
He seems like the kind of doctor I had been hoping for. Very compassionate, open, and willing to work with me in getting Hannah comfortable and under control. Of course, after getting disappointed after the two previous neuros, I’m going to wait before I get all excited. I’m keeping my fingers crossed!
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