We brought Hazel to Mount E to consult the neuro doctor yesterday morning. Since vigabatrin is not working anymore, and her spasm came back fiercely at twice a day now, we are at wits end and very very demoralized. The doctor told us Hazel might be having seizures and that triggers her spasm, which means now we have to find a medicine that treats both. Every medicine he mentioned made my heart sank. Non of the side effects are on the milder side. One of them affects the liver, the other one causes kidney stones. The one that we wanted to let her try, the only one that side effects are only sleepiness and more secretions, he said that med might not be useful on seizures though it might work on spasm.
After Mount E, we went to see a Chinese physician at Pek Kio. Long queue. However, upon hearing that we came because our daughter is having seizures, they gave us priority and we only waited for an hour. I considered that as very very lucky. The female physician is very kind. After hearing what we told her, she gave us many encouragements and told us not to give up. The one thing that made a very deep impression is that she told us Hazel will be well again. She might be slightly slower than a normal child, but she will catch up and be able to take care of herself in future.
Apart from the seizures episodes, Hazel is very much her active usual self. Very talkative these days, babble non stop, really seems like she is trying to communicate with us. In between her babbles she will laugh, and that is really cute and funny.
She is enjoying her swimming sessions more and more. Swam for 40 mins and had no intention of getting out from the tub. I remembered last time I still had to coax her to let her stay awhile more in the tub.
Having a follow up with KKH neuro on Thursday. Shall see what is the outcome.
She really loves playing with my essential oil bags. It is like a dumbbell to her.
Or probably she knows that’s some goodies inside the bags!