I didn't put a punctuation on the title on purpose because I am debating. Would it be more appropriate to use a question mark cuz I am not sure if he really has it? Or should I use an exclamation mark to express my devastation? But I certainly don't want to use a full stop because its not confirmed, or is it?
Last week was a tough week. We took Jason to three hospitals on four separate days for different tests and checkups. Tuesday to Yan Chai ER; Wednesday to Duchess of Kent for seating; Thursday: Yan Chai Pediatrics; Friday: Prince Margaret for EEG. All these stem from the recent development of muscle spasms in his hands/arms. I thought I got it under control (I still think so) with immense help from Alex Sutton (the minerals doctor) and coconut oil, but school teachers and neurologists alike think further tests are necessary. So an EEG was ordered to read the brain waves during his spasms. Just like a haunting ghost, you can't find it when you want it. During the full 90-minute section, (this I must give credit to the very nice and patient technologist), the spasms did not occur. He was sitting quite calmly and cooperatively with just minor twitches on one hand. But the technologist said the graph is undoubtedly showing abnormal brain activities, with or without seeing the spasm. I wasn't sure what he meant. The last EEG for Jason back when he was 7 was not normal as well but Jason was fine. The neuro then said there's no need to treat the graph if Jason is fine. But this time the Pediatric neuro at PMH said Jason has epilepsy and prescribed him Epilim200 a first line drug for seizures.
I saw the list of side effects and I was appalled by them. Fatigue, lack of attention, tremor....aren't those exactly what we are trying to treat? When asked what improvement in Jason would I expect from the medication, she didn't answer directly. She just said the EEG would be better. But thats not what I want! I want JASON to be better!
Back home, we put the prescription aside and continued w Alex's minerals. (Mag Phos and Cal Phos 5 each dissolved in water, 4-5 times a day. Plus coconut oil 2 teaspoons two times a day, and a powdered coconut with MCT oil mixed in his snack drinks). Adding everyone's fervent prayers into the protocol, Jason has been spasm-free for four days and counting.
Meanwhile, I finally got back in touch with Dr. Dobyns. Thanks to the Facebook Cerebellum Group. Turns out he has moved to Seattle so he didnt receive the old emails. In less than two days, he did reply and he reviewed scans back when Jason was 6 years old. He says Jason's case started as a complex one, with the new EEG indicating seizures, it's got even more complicated. He is the leading expert on brain malformation in kids. If he doesn't have an answer I don't know who will (except God). He now asked our neurologist Dr Fung to send him his updated scans and reports. They will connect w each other and see what other tests need to be done to enable us to learn a bit more of his condition. I will see Dr. Fung in two weeks.
Alex (now doing his Hong Kong clinic) saw Jason today. Jason was very excited to see him and reached out his hands several times for him. He also said thank you to Alex many times and laughed at Alex's jokes. I cannot believe we didnt take a pic or a video for the moment!
Nonetheless, Alex did tell me with the new development, even though spasms are controlled, I should not have any false hope to expect Jason will get "better". In fact he said to expect the worst. Nobody knows when "the worst" would happen and he said that may not be a bad thing for him.... and us.
I just wish I could turn back the clock to when he's 5 or 6 when there were so much hopes and room for improvement. But I know God has His will. It's not going to be easy but He will guide us in every step and I have all of my family, my dear friends and my churchmates walking with me.
In the news today: bombs in Boston Marathon killed an 8-year-old who was waiting for his dad on the finish line.
No comments:
Post a Comment