Goodbye Haldol

It has now been almost two weeks since we finished the Haldol taper, and she has been Haldol free.

We have noticed some definite changes in Hannah, mostly positive.

The good is that she hardly twitches when she sleeps now, so we are hoping that means we are getting her subclinical seizures under control with the removal of the Haldol and the upping of her Keppra.  Haldol is known to lessen seizure thresholds, so we are hoping that is the case and now that it is gone, whatever seizure activity she has been having is under control.

The bad is that her movement disorder has worsened to some degree.  Where once she used to hold on to toys and keep them in her grasp, she does not seem to be able to do that as well anymore.  I feel like we are having to put things in her hand and help her get the grasp going now.  She still loves to play with her toys, but it is more of a press-button cause-effect type of thing.  We got her Megablocks for the holidays, and she loves knocking them down.  But I think we are going to have to focus on her grasping and using her hands for fine motor toys again.

You can see this movement disorder most prominently in her face and her hand/arm movements.

Another good is that she is no longer taking two 2-1/2 to 3 hour naps each day.  Even better, she seems to be trending towards sleeping through the night again!  She still takes 1 long nap each day and maybe a second  power nap, but she definitely seems much less sleepy during the day (even though she still seems exhausted much of the time).

But the plan stays the same for now.  We wait until late January to start working on fine tuning her meds for her movement disorder.  We need to get the keppra therapeutic as well as make sure the Haldol is completely out of her system.

I know they say that this movement disorder is not a Gaucher thing.  But I can’t help but think that the oversedation and polypharmacy during her hospitalization this summer created a firestorm neurologically that may not be able to be reversed.