It went exactly as I thought it would. Then again, in all honesty, I went in there knowing exactly what was going on, what she was going to say, and what medication changes I think would work best for Hannah.
She put Hannah back on the Keppra at twice a day dosing (1.5 mL) instead of originally her three times a day dosing. TCH docs originally put Hannah on the Keppra for seizure control, but it is also used as a third line of defense drug for movement disorders. For Hannah, who has no seizure disorder thankfully, it was a natural process to wean her from that drug last month. However, we noticed that her movement disorder really worsened once she was off the Keppra.
She kept Hannah’s Haldol and Klonopin doses the same. Daddy and I don’t believe she is getting any benefit from the Haldol, but we agree with our neurologist that we need to see how Hannah does with the addition of the Keppra before we remove the Haldol.
As far as Hannah’s left eye nystagmus…yep, that is what it is. Sadly, we learned that it will affect her vision in that eye because with the pupil shaking left-right, so does her vision. That must be so dang annoying for her. There is no treatment for nystagmus. And in true “Hannah fashion,” our neurologist has never seen nystagmus in just ONE eye before — it is always both eyes affected.
We are going to take a video of Hannah’s eye movements and send it to Dr. Fitzgibbons, Hannah’s neuroopthalmologist at the NIH, to get his opinion on it.
The Keppra has one other benefit that Daddy and I personally like. If we do get the trach out and Hannah has another one of her breath-holding spells when she throws a tantrum, at least she will have some line of defensive against having another seizure like she did back in May (that started the whole hospitalization, even though it turned out that was just a minor thing in retrospect!).
Friday is “Nakamura Day.” He’s our new pulmonologist. Talking about getting the trach out. Keeping my fingers crossed that Hannah is stable enough to get it removed! (Though it would not be tomorrow, but at least we could take the next steps!)
can i ask a question? Did they actually ever do a metabolic rate? I don’t mean with weighting her and math. I mean a red blood cell oxgen metabolic rate?
THe actual BEST doc in LV is Marietta Nelson. Really, the only one I think would be the best no matter where she lived. You might want to try to get in with her. She practices pediatric opthamology but she is also a board certified pediatrician.