Great neuro appointment!

We just got back from Hannah’s neurologist follow up appointment.   It was our first appointment with him since we started decreasing the Klonopin in May.

He was very happy with seeing the change in Hannah’s attitude, balance, and her regaining of some of the skills she has lost (such as rolling over, trying to reach out, etc.).   She was sitting on my lap balancing while smiling, laughing, and just in a good mood, which is a huge difference from last time when she was “lethargic” and just laid in my arms.

What is even more unusual but exciting is that Hannah’s nystagmus (eye shaking) has significantly decreased!   The irony of this is that Klonopin is actually used to help treat nystagmus.

He commented how he was worried at the last visit that what we were seeing was progression of the Gaucher’s disease.  He even talked to Dr. Goker-Alpan at the NIH about her.

But the decrease from 3.0 mL three times a day to 2.0 mL three times a day has made a huge difference.

So we were both wondering… she has been on Klonopin since she started with the movement disorder back at Texas Children’s Hospital last June.  What if she doesn’t really need the Klonopin anymore, and she is having a “paradoxical” reaction to the medication since she seems to be doing better with the decrease on things that Klonopin is actually supposed to treat.

The plan is to wean Hannah off the Klonopin very slowly.   So we are going to go down 1 mL per day this month (down from 6 mL a day to 5 mL a day).

He is also going to work with Dr. Sanger at Children’s Hospital Los Angeles and implement whatever recommendations he may have (which may be a different wean schedule or even something else).   He knows Dr. Sanger very well, so it is great that they already have a working relationship established.

I walked away incredibly happy with this visit.   Hannah actually improved quite a bit over the past two months with this decrease in Klonopin.  It wasn’t her Gaucher’s disease, at least not this time.  It is so rare for us to have such an appointment where we actual get an improvement in something, and this being so important, it was just a wonderful, wonderful feeling!