Friday Oct 30, 2015, we went for our 6-month checkup, the first one since Dr. Fung returned from the genetics exome lab in the Netherlands. Jason's blood sample is still "waiting"in line to be analyzed so nothing new to report there. However, what can be an exciting news is that Dr. Fung will be working on starting a Lab in Hong Kong with focus on mitrochondrial disease. The details are not out yet but Dr. Fung is hopeful that new drugs may be approved for human testing in a couple of years. The potential source of funding is from Joshua Hellman Foundation for rare disease research, one of the few in Hong Kong. If Anson's fund raising recital does materialize, it will be very meaningful if they can be the beneficiary of the event.
Talking about drugs, however, Jason didn't seem to have much luck. He seems to have all the share of side effects, but not the benefits.
When we were waiting in the hallway for our appointment, we overheard the parents ahead of us asking for a refill of "patch"for drooling. Out of curiosity, I asked Dr. Fung what it was and he generously prescribed to us. These are transdermal patch normally used for motion sickness with the active ingredients being scopolamine. One is supposed to put it on for 72 hours and what it is trying to achieve is to make use of the "side effect: dryness of the mouth" to reduce drooling on patients with neurological disorder. In the morning (18 hours) after the patch was placed, Jason woke up a different person. When he was still in bed, I noticed his eyeballs rolling and he was busy scanning the ceiling as if he saw something unusual (yes that's scary....not to mention it's the day after Halloween). He then gave a grin, sometimes a shout with excitement, then calmed down again. The impression he gave me was that his brain was very very busy...overwhelmed with strange thoughts and images that he couldn't possibly express. When we got ready to leave home for church, we took the dandiest video with him sitting straight up, with dry chin, no bib hanging around his neck. He even followed instruction to swallow the saliva. When we were out in the lift lobby, for the rarest moment, he could even lift his head up and look up as high as the horizontal panel. The excitement and hyper-alertness continued at church and he gave a little scream here and there during the sermon. Until that point, we were still thankful...thinking this was like a miraculous turning point?
It was in the evening after his nap that was most dreadful. He was totally out of control, shaking and roaring and agitative for no reason, adding to that a blank stare to the distance. The only thing that calmed him down was to be held in daddy's arms. He was tired, confused, and not in the mood for food. I usually played his favorite "Turkish March" at night to boost his energy up but that night, I had to avoid playing it lest he became overstimulated. Instead, I had to play baby cradle music to calm him down. But that didn't help putting him to a quiet mode. He remained hyper-alert overnight....rolling his eyes....grinning at times, frowning at times, screaming at times....until 4:30am. His poor body was exhausted, dark circles formed around his eyes, yet his eyes stayed open....I had to observe carefully to see if they actually blinked. The drama finally ended when we both fell asleep at 4:30am (I hope he did as I thought). When we woke up in the morning, his eyes were still half open and up to that point, I still didnt't know what's causing this....thinking it's the CoEnzymeQ10 supplement that's supposed to boost energy. But thanks to dr. Fung's prompt reply to my video-mail, he said the patch was more likely the culprit and asked that we carefully monitor for a few more days.
After some more googling, I found this on webmd and other medical sites:
- Remove the patch and tell your doctor right away if you have any serious side effects, including: mental/mood changes (such as confusion, agitation), difficulty urinating, fast/irregular heartbeat
- Get medical help right away if you have any very serious side effects, including: eye pain/swelling/redness, vision changes (such as seeing rainbows around lights at night).
We have removed the patch today. And guess what? I am using it on me to see what it will do to me.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.
2 Corinthians 4:16
