Could Keppra be that bad?!

We have always been told that Keppra was a very safe drug, “benign” was even one of the words used to describe it by one of Hannah’s former neurologists.   She was put on it just days after her stay began at TCH well over a year ago after her initial tonic-clonic seizure brought on by her breath-holding spell.

When she was discharged last July, she was at 1.0 mL three times a day.   After her “seizure-filled” EEG last November, it was upped to 2.0 mL three times a day.   Hannah’s fine motor and balance problems started the end of December and spiraled from there.

It took a specialist who wasn’t familiar with Gaucher’s to make the connection for us.  Had Dr. Sanger not told us that he doesn’t like to use Keppra and that it shouldn’t be used for kids who are neuro-compromised…along with the fact that he didn’t believe what was seen on the EEG were actual seizures but corticol myoclonus….

It angers me that we didn’t make the connection sooner.

Here we are less than two weeks after started our wean off from Keppra.  We are now at 1.0 mL three times a day after a week of being at 1.5 mL three times a day.   Next Sunday, we will be down to 0.5 mL three times a day.   Our goal is to have her completely off Keppra by her next EEG at the end of September.   (Obviously if we see seizure activity, we will call her neuro immediately and look into another seizure-med).

SO…..We have seen some amazing changes in Hannah in just the past week or so.

One month ago, Hannah couldn’t balance at all when sitting on her knees (her W-sit).   Her balance was just bad that she would wobble and eventually fall over if we weren’t holding her.

NOW…She is able to sit on her knees BY HERSELF for almost 30 seconds!  Her balance has improved so well already!   Confidence wise, she needs to have us right there to fall on or lean on, but it is so wonderful seeing her sit on my lap without me having to hold her entire back and neck.  I just have to hold her around her waist, and she can sit up and support herself.

One month ago, Hannah’s fine motor skills were almost non-existant.   She could no longer grasp toys, reach out to touch anything, or even play the special needs apps on her iPad.   Because her movements and control were so bad, she was constantly holding her arms and couldn’t do anything else.

NOW…She can reach up and grab her new favorite toy, a ball with lots of grabbing areas, that is lifted a foot above her head!  She actually can locate it and put her arm, albeit slowly and with a lot of effort, up and open her fingers to grab at all!   She lays on her side and grabs it all the time as well.

Today she also was sitting her in Pink Rider (wheelchair stroller) and was able to touch the keys on her lighted musical piano for the first time in many MONTHS!   Again, it was kinda of sloppy and not a direct easy touch, but she worked hard to get her hand there and move it!

So my question is — WHAT THE HELL DID THE KEPPRA DO TO HER?!

If we are seeing this kind of improvement in less than just two weeks, what are we going to see in the next two months?!   Does she even have a seizure disorder at all (did the EEG tech that did that fateful November EEG know what cortical myoclonus even was and how it is NOT a seizure?)?

We haven’t even restarted the Klonopin wean yet!    We had seen a huge personality change when we dropped from 3.0 mL three times a day to 2.0 mL three times a day.   She was no longer lethargic, became her happy charming self again, and showed, most importantly, INTENT to want to do things.

Now with this Keppra and all these changes….UGH!!!!!     What if some of her current issues were just bad med choices and not all Gaucher progression?   Everyone just assumed it was progression (even us), but now seeing this dramatic (to us) improvement over just the past two weeks….UGH!!!!!