22-25 April 10

22-25 April 10

After 2 days where the frequency was at 4 and 5, all of a sudden, it shot up to 9. And the last 3 days were really bad. It had hit double digits. The episodes almost certainly happened when Charlene is soundly asleep. Sometimes she is frightened by sudden loud sound, sudden movement (when we feed her or change her diaper) and would almost immediately go into it.

I called her neurologist on Fri and all he said was revert the dosage of the med, as if I don't know. Well, we increased sodium valproate back to 3 times a day but it doesn't seem to be working.

3 of our cell group members came to visit Charlene and us. Cos one of them is a physiotherapist, we did some exercises on Charlene. She was obviously irritated. And we were waiting for her to cry. After they left, she went into the episode.

It suddenly struck us. Charlene seems to have forgotten how to cry and her feelings (angry, irritated, scared etc) are expressed by the episodes. Then we realised that she hasn't been crying at all these few days. Previously, everytime we dumped her down on the bed, within 5 mins she would start crying and want to be picked up. And she would definitely cry halfway through her bath. She also cried loudly at the previous 2 physio sessions. Yet yesterday when we took 20 mins to bathe her, she didn't cry at all.

And we recalled that back in the hospital, there were 2 instances when she cried for very long hours and there were no episodes at all. It seems like crying and the episodes are almost mutually exclusive.

We have no idea what is happening to Charlene but having so many episodes (once every 2 hrs) is making her tired and disrupting her sleep. Her lack of sleep will in turn trigger more episodes. Also, she is obviously more lethargic and not keen to play.

We dunno what we can do besides praying. There isn't even anything the doc can do. They will just pump her with more med and knock her out and then say that it's all under control.