Doing Well

Melanie has been doing very well lately. The rest of us have been suffering from long-lasting colds and sinusitis and bronchitis.  Through it all, Melanie was 100% and still is! We got sick while she was still on antibiotics, which really worked to get her well again.

We have been slowly tapering one of her meds since February. The drug is keppra, and she went on it a couple years ago when she was having tons of myoclonic jerks every day. These are the same type of jerk that most people experience at times when falling asleep, except for Melanie most of them were seizures. They're actually the type that her syndrome was formally named after: SMEI = Severe Myoclonic Epilepsy in Infancy.  When Melanie started keppra, these myoclonics nearly disappeared. Because of that, we don't know if that drug is still protecting her against those seizures, so we don't want to wean it completely. The reason for the taper is because she's simply on too many medications, and my mama gut tells me she doesn't need them. Plus, we have some side effects to try and resolve. Keppra is notorious for mood and behavior issues. Since starting the taper, we've seen Melanie become sweeter. The tantrums she would throw were apparently keppra tantrums-- we haven't seen those in a while. We're also seeing her talk more and repeat/attempt more words (often successfully). She seems brighter in mood and cognition, as seen in her language development and better understanding and interaction. I'd say she's grown up a few months in just the last month.  This of course is GREAT news!  It would be tough, though, if we saw these improvements in her well-being but a decrease in seizure control. Well... I have not seen any change on that front!  She still has small "seizurey" eye things going on multiple times a day, especially due to her pattern and photo sensitivity: I think some of that activity might be myoclonic.  So I have been watching that especially closely, but I see no increase-- in fact, possibly even a decrease.  If this taper continues to go so well, we will stay at a lower dose while we try tapering her depakote. That one is bad for the liver, and we suspect it may be affecting her appetite. Please pray both of these tapers go smoothly, so more of Melanie can come out and she can learn and grow even more!

We just completed our second intensive week of ABM. I see a pattern now in the way she handles these weeks: Day 1 is novel, Day 2 is awful b/c she just wants to be done, Day 3 is a bit better but still not in the groove, Day 4 is when it clicks... we didn't do a Day 5 this time, but that would have gone well too. So, now we will be going once a week for a few weeks, then another intensive week w/ a modified schedule to fit Melanie's pattern: 3 days of 1-a-day, then 2 days of 2-a-day. Save her energy and our time and money. ;-)  I feel more comfrotable with the whole ABM thing now, and with her teacher (who has a very different personality and lifestyle than I do). And now I have more things to do with her and ways to encourage her to move at home.

This coming Monday, March 26 is Global Purple Day for Epilepsy. Remember to wear PURPLE for Melanie and any other loved ones of yours with epilepsy. And wear your Melanie button if you have one.