Neurologist Appointment - a good one

We went to see the neurologist at Duchess of Kent Children's Hospital (DKCH) on May 3rd.  It started out as a sunny morning and since we were a little early, we stopped by the Rehab Centre nearby to grab lunch. Just when we were finished and just 5 minutes to the scheduled appointment, it started to pour.  We were running late so we had no choice but to be creative.  I asked the cleaning lady for those big black garbage bags and she immediately knew what I was up to.  She asked me how many people we had.  Wasn't she smart? I'm sure I wasn't the first one asking her on that day, ha. The rain was very heavy indeed and poor Jason in his wheelchair was covered all over by two big garbage bags. He was resisting it (thinking it may ruin his good looks??? ) Anyway, we managed to get there on time even though our pants were all soaked.

Dr. CW Fung, our neurologist, was looking carefully at all the videos I've taken of Jason's spasms.  He was of the opinion that those are not "seizures" because the movements would have been more rhythmic. He said this is not the same as those seen in Parkinson's either but is more "dystonic".  He looked at the EEG and agreed it's quite "horrifying" (恐怖 is the word he used) but since, as I reported, Jason was quite calm during those spikes, he said he would not prescribe drugs only to "treat the EEG".  I was so thankful he said that because that was exactly what I thought about the doctor from the other hospital (who prescribed Epilim for Jason, and not only that, he ordered the WRONG formulation!).  He was inclined to see this as muscle spasm which is related to calcium deficiency. That explains why it has improved after administration of Cal Phosphate and Mag Phosphate.  (As per my previous post, this new prescription was given to us by our dearly respected Alex Sutton in accordance with the fundamental rules of biochemistry (Dr. Schuessler), and the minerals we used were the Schuessler Salts by DHU in Germany).    Dr. Fung also suggested if I would consider stopping the minerals for two weeks and observed if the spasms return and hence may possibly guide us to finding a cause.  I was reluctant to do this "experiment" on Jason and he quickly said he'd respect our decision.

After a physical examination he agreed that Jason seems to be louder and more alert than all the previous appointments.  I told him many people were praying for Jason and it's like a miracle to us.  Turned out he is also a Christian and he said "yes it is a miracle, but with God's wisdom, He must be trying to tell us something important through this" so we can all learn from it.

I also told him about coconut oil.  He asked me respectfully what's in coconut oil that I think has helped. I told him about ketones and the medium chain fatty acids that it contained and he said he will look into it. (For those who are interested, here is a good start http://www.coconutketones.com/. ) I really appreciate the way he treated me like an equal and we discussed what can be done medically to help Jason.  His plan is to do another spot EEG first, then decide if an overnight EEG is called for. He doesn't think Jason has what's called Electrical status epilepticus in sleep (ESES) but if he does, anti-epileptic drugs will need to be considered.  He will also be cooperating with Dr. Dobyns from Seattle Children's Hospital and provide him with all necessary scans and reports from here.

I'm so glad we have Dr. Fung on our case.  He is a good doctor....which is a rare gem nowadays.

(oh......a side track: God once again showed us His amazing power that day.  We had arranged rehab bus pickup at 3pm but since doctor arrived late, we didn't get to see him till 2:50. While we were panicking what to do, rehab bus call centre told us apologetically that they had some confusion with the dispatch so no bus was available at 3. They could only send us another bus at 4:45pm.  My jaws were dropped when I heard that.  (ARE YOU KIDDING ME? THAT'S EXACTLY WHAT WE WANT!!!)    When we finished our appointment and stepped out of the doctor's office, it was 4:38pm.  That's how POWERFUL our Lord is.  Not only does He know what we need, He knows it BEFORE us!)

Last but not least, we caught him looking out the window to see the traffic/the rain. He hasn't done this for a long time as well since his head was bent down most of the time!