Tags: Education, HopeforHH.org, hypothalamic hamartoma, Living with Hypothalamic Hamartoma, medication changes
I had hoped to have had Ezri's neurology appointment earlier this afternoon as it was originally scheduled and to be sharing the details in this blog post, but they called Monday morning wanting to reschedule. Just when I was about to be upset, because the last time our appointment was postponed, it was pushed out a month. This time the secretary offered this Friday which actually turns out better, as Ezri won't be missing school. I want to talk about scheduling an EEG at some point in the coming months as I'm curious if and how the epileptic activity is progressing. I also hope that our neurologist will offer a new medication to try adding to the Keppra and Lexapro. We are in the last days of the weaning process off of Tegretol (not seeing any sort of change good or bad) and have also tried one called Onfi (clobazam). This Onfi, a fairly new drug, was suggested as something to give Ezri if she was having a really bad day, just 'as needed', and the first time we administered it there was no change. At the last appointment our neurologist said to try again on a bad day at double that dose, and we did so with mixed results. We could tell that Ezri was 'chilled out' by it and so fewer things bothered her, but when something DID bother her, all hell broke loose and the reaction was twice as much as it would have been otherwise. So this was not a miracle drug for Ezri.
Some positive progress we've seen lately with Ezri (which I hope continues) is that she finally seems to be crossing over/through the 'upset barrier' she has about getting her tennis shoes on every morning for school. What I mean by this is that when you ask Ezri to get her shoes on, she immediately goes into that totally irrational crying of "I can't do it! I don't know which shoe goes on which foot" etc. etc. Every morning we go through this - its just one of our 'routines' to get through (and little sister Kes is such a dear, trying to help and telling Ezri for the umpteenth time "this shoes goes here..."). I don't know how to describe it except it's the HH talking and Ezri's negative, seizure-y, feelings being triggered by a task that is borderline difficult for her and her apprehension about it (on rare, really good days - shoes are no problem). But, this past week when we've told Ezri to get her shoes on, she is doing it without a fuss and I think that finally she is becoming comfortable enough with the task she doesn't have the apprehension and fear about it being 'too difficult.' I am also very happy to say that Ezri is truly learning to read some words these days. She takes many more repetitions to learn her 'sight words' but her teacher has sent home some books to practice her reading and she's been able to read about 95% herself - very exciting.