We increased Hannah’s Klonopin last week.
After getting her bloodwork back showing that her therapeutic level was still below the low end of normal, Hannah’s neuro agreed that we can do an increase to see how she tolerates it. She was at 2.0 mL twice a day and 3.0 mL at night. So he changed her to 3.0 mL three times a day.
I would like to think that it is helping. She has started to be able to keep a grasp on certain toys again (like her thick crayon – three larger crayons put together by a rubber band) as well as her swim stick that she got last year during hydrotherapy. She is not yet able to grab them on her own, but if we put them in her hand, she will keep a grip on them.
I’m so glad to see some sort of positive progress. What is so confusing to me is why did she lose this basic skill?
A few months after her hospitalization last summer, she was back to holding toys and being able to pick up her pacifier and other toys with ease. Then I noticed during Christmastime that she had lost this skill. Her movement disorder did worsen, and perhaps this is part of the reason? Why is her movement disorder worsening…and worsening so quickly? We were at the point that it was only slightly noticeable a few months after her hospitalization and then started getting worse. Could the few months she was on Haldol have caused more harm than we realized?
So friggin’ frustrating. Frustrating because there doesn’t seem to have anyone who has answers for us. Frustrating because we don’t know what we can do to help her. Just so dang frustrating because she is losing her quality of life because she can’t play with her toys like she was able to just 5 or 6 months ago.
It IS frustrating. I think we talked about this but it took me a long time to realize that somethings you can’t change. Its not that you need a better doctor or that you need to try harder. They just can’t be changed. That said, changing meds alters all the other meds. You may just see a huge difference in her from the slight increase in dose. We recently added 2 more ML’s of Kepra to V’s diet and the change in seizure activity is noticable. Not sure I like it, but its noticable at least. Get a couple of toys that do not require grabbing. That desk toy with the balls that swing perpetually or V has a new toy from target that you just barely have to squeeze its hand to get it singing.