I can't believe it's been over a year since my last blog post. But other than the length of time, I really didn't miss a thing as today's post turns out to be a direct continuation from the last one. My post from Aug 2013 talked about plans to investigate potential treatment with the use of drugs. Since then, Jason has had a lumbar puncture plus several bloodwork done and we just saw Dr. Fung - the neurologist yesterday with the results.
While not pointing to a particular type of metabolic disease, results suggest that Jason most likely has a mitochondria disorder. Blood samples show that he has below-norm level of dopamine and folic acid (in his brain). While this is different from the diagnosis of Jason's classmate which is directly caused by deficiency of dopa, Dr. Fung is interested in what dopamine administration would do for Jason should the level be elevated to normal level. Therapeutic dose of folic acid is also prescribed. Further blood test is scheduled next week to see if folate level is low throughout blood or just localized in the brain before making more informed conclusions. These blood samples will also be sent to the Netherlands for further genome mapping. It costs EUR2200 originally but Dr. Fung managed to obtain funding for us through the "system" and it's now free. In fact, Dr. Fung himself will go to the Netherlands next year for a 7-month training on DNA testing in their labs.
Dr. Fung is honest in that he doesn't expect a miraculous effect like what it does to Jason's classmate because in Jason's case, the low level of dopa is secondary to a still unknown condition as opposed to a primary diagnosis. We are also warned to expect some side effects including increased involuntary movement or some form of twitching, or even spasm.
People who know me knows that I am NOT a fan of drugs. But I am going to trust the Lord in giving Dr. Fung wisdom. This may open a door to Jason. I will try my best to keep a journal of the process, and to share with other families in other parts of world....Who knows? Maybe it will open doors for other children in need. After all, it's a rare disease and doctors can only learn by referencing other cases. God bless!
Tuesday, October 28, 2014
Friday, August 23, 2013
Neurologist Update
We went to Duchess of Kent today for a 3-month checkup on Jason after the scary episodes of spasm and epilepsy in April. The second EEG report in May says he does not, at the time of test, have an epilepsy attack but his brain patterns are "potentially epileptogenic". What a mouthful.
Dr. Fung, as investigative as always, tried to look at Jason's disease from another angle. While showing Jason's videos to the student dr next to him, he was of the opinion that the spasms look more like dystonic attacks than epilepsy. He mentioned there is new research and development with a team in Holland on rare mitochondrial disease, in which a drug may be used as trial for the qualified subjects. He said Jason does have some pointers that make him a potential candidate so he suggested to a continuous blood test of Jason to check the lactate level after drinking some sugary liquid. If lactate level is high, then it confirms the direction and warrants further tests including muscle and skin biopsy.
I trust his professionalism and his determination to find solutions for children with rare diseases. Even though he admits partially it is for the academic databank as Jason is the rarest of the rare neurological disorders, as long as it will not cause any unnecessary pain or risk with Jason, we will give the approval to go ahead. Despite the fact that we've done similar tests before in Toronto, medical research has so much progress in the last ten years that if God permits it may really come up with an answer that will help Jason.
I pray to the Lord that Jason and/or other children in his footsteps will benefit from the upcoming investigations and even if not, he will continue to thrive in God's grace and blessings.
Dr. Fung, as investigative as always, tried to look at Jason's disease from another angle. While showing Jason's videos to the student dr next to him, he was of the opinion that the spasms look more like dystonic attacks than epilepsy. He mentioned there is new research and development with a team in Holland on rare mitochondrial disease, in which a drug may be used as trial for the qualified subjects. He said Jason does have some pointers that make him a potential candidate so he suggested to a continuous blood test of Jason to check the lactate level after drinking some sugary liquid. If lactate level is high, then it confirms the direction and warrants further tests including muscle and skin biopsy.
I trust his professionalism and his determination to find solutions for children with rare diseases. Even though he admits partially it is for the academic databank as Jason is the rarest of the rare neurological disorders, as long as it will not cause any unnecessary pain or risk with Jason, we will give the approval to go ahead. Despite the fact that we've done similar tests before in Toronto, medical research has so much progress in the last ten years that if God permits it may really come up with an answer that will help Jason.
I pray to the Lord that Jason and/or other children in his footsteps will benefit from the upcoming investigations and even if not, he will continue to thrive in God's grace and blessings.
Thursday, May 23, 2013
A second EEG....much better!
A second EEG was scheduled on May 15 for Jason. One month after the first one at Queen Margaret's Hospital. This time we did it at Queen Mary's and it was more systematically done. We were placed in a room with a bed where Jason would lie down with his "cap" and electrodes gel'd on, and a camera shooting his sleep-wake patterns. In the beginning Jason was awake and when enough readings were taken, they want us to lure Jason to a sleep state. We won't get a formal report until August but looking at the spikes of the image (I secretly took a picture from my iPhone), they are quite different from the last one.
The technician asked if we'd given Jason any epileptic drugs and proud mama's answer is NO. Schuessler's salts (mineral salts) and coconut oil is what I had given and so far it's serving us well!
Happy 14th Birthday
I cannot believe my son is 14 years old now. A teenager he is but still a baby in everyone's heart.
On his birthday we take a day off to take him to Disney Hong Kong. Thank God for the recent improvement, his stamina actually allows him to stay up from noon till the closing fireworks. He had a great time from the beginning to the end and we had the privilege of taking many nice pictures with his head up...which is a rare thing in the past few months.
Sunday, May 5, 2013
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!
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!
Monday, April 29, 2013
Jason's Miracles!
It's been a roller-coaster ride over the past few weeks.
From the abyss to cloud 9.
I am still in disbelief.
Yes...it's a miracle.....No... it's a chain of miraculous events.
Towards the end of March, Jason was clearly deteriorating.....flexed knees, spastic hands, bedwetting, beginning of pressure sores, less talking, always sleepy with droopy heads. Then come the muscle spasms and epilepsy as revealed by the EEG which may indicate, as pointed by another very resourceful ABR mother, a rare condition called "Continuous Spike-Wave in Slow Wave Sleep Syndrome" (CSWS). I never heard about this before but it can be a new direction to look at. After I got in touch with Dr. William Dobyns from Seattle Children's Hospital, his assistant started to connect with me to collect DNA samples so they can do some genes matching, while trying to get all the udpated MRI and images from the neurologist in Hong Kong. Everyone's goal, at this point, is to try and understand a little more about Jason's condition. Nothing is mentioned about treatment, other than the vicious prescription given by the minimally-informed pediatrician on call.
On the other hand, we started giving Jason the cell salts (minerals) as per Alex's latest instruction on April 2, topped up with coconut oil-powder combo. I diarized his changes every day and starting April 13, his muscle spasm stopped....and until now, it has never come back. Not only that, he seems to be more alert and present. Today, he's "talking" to me. He was totally alert when I was talking and was exhilarated to know that I am "talking" to him.
Like Alex,we were at a loss of what was happening. We can't explain what we see. If his brain was truly shrinking, then there must be something we did right during the past few weeks that succeeded to arrest or even reverse that process. All I can think of were 1) Everyone's prayers.....right when we had almost lost our hopes and when we shouted to the Lord, He listened. 2) Cell salts to the rescue 3) Magic of coconut oil.
All of the above did not involve any drugs, nor surgery, nor forceful intervention and we witnessed the return of my dear son. This is nothing short of a miracle.
Adding to the above miraculous "healing"..... God has planned another miraculous encounter.
It was last Thursday when I met this lady on the MTR ride back to Tsuen Wan.
This lady bumped into an acquaintance on the train and she was telling what she was doing and that she was visiting old people with strokes and providing Tui Na (traditional Chinese manual therapy) and/or acupuncture service. Instinctively I extended the antennae on my head and listened to her attentively. When I heard her saying the ONLY criterion for service is that the recipient has to be physically handicapped, I told myself I HAD TO TALK TO THIS LADY.
When the train stopped at Tsuen Wan, I approached her directly and told her about Jason. I showed her Jason's picture and immediately told her Jason IS physically handicapped to catch her attention. We exchanged business cards and she turned out to be the General Secretary of "Leisure & Health LifeHouse" 樂健生活館 under the FTU Employment Development Service which is sponsored by one of the biggest political party in Hong Kong. I believe she is the trainer there as well and she agreed to visit Jason to see what she can do to help him.
Ever since Jason's deterioration began, we were looking for different ways to help Jason (including stem cell therapy) and acupuncture was back in our mind. But daddy thought the benefits may not worth the hassle of travelling back and forth so mommy was googling like crazy hoping to find a good one near where we live, to no avail. God knows what I want and He grants me MORE than what I asked for. She sent this lady to our door.
When this lady visited us last Saturday, she performed two full hours of tuina, focusing on important meridians to boost Jason's "qi" (energy) and to relax his muscles. After it's finished, Jason was so relaxed he fell asleep like a baby. Jason's auntie and cousin were there and their jaws were dropped when they saw Jason's usually tight legs relax with knees open outward. What's more miraculous is that, she charged me just a fraction of what's considered a "fair price" and she even gave us a box of Godiva chocolate as a gift.
Today is the second day following the massage session and Jason was not fatigued like before.
As I said earlier, Jason all "here" and was "talking" to me.
I am thankful.
God has once again shown His glory through our weaknesses, and through Jason.
Just did a quick google search for the meaning of the name "Jason", it says:
Meaning of Jason: "the Lord is salvation" or "healer".
I did not know that when I decided to use this name.
Was this coincidence or was it all in the divine plan of God?
God knows. I mean......God knows.
From the abyss to cloud 9.
I am still in disbelief.
Yes...it's a miracle.....No... it's a chain of miraculous events.
Towards the end of March, Jason was clearly deteriorating.....flexed knees, spastic hands, bedwetting, beginning of pressure sores, less talking, always sleepy with droopy heads. Then come the muscle spasms and epilepsy as revealed by the EEG which may indicate, as pointed by another very resourceful ABR mother, a rare condition called "Continuous Spike-Wave in Slow Wave Sleep Syndrome" (CSWS). I never heard about this before but it can be a new direction to look at. After I got in touch with Dr. William Dobyns from Seattle Children's Hospital, his assistant started to connect with me to collect DNA samples so they can do some genes matching, while trying to get all the udpated MRI and images from the neurologist in Hong Kong. Everyone's goal, at this point, is to try and understand a little more about Jason's condition. Nothing is mentioned about treatment, other than the vicious prescription given by the minimally-informed pediatrician on call.
On the other hand, we started giving Jason the cell salts (minerals) as per Alex's latest instruction on April 2, topped up with coconut oil-powder combo. I diarized his changes every day and starting April 13, his muscle spasm stopped....and until now, it has never come back. Not only that, he seems to be more alert and present. Today, he's "talking" to me. He was totally alert when I was talking and was exhilarated to know that I am "talking" to him.
Like Alex,we were at a loss of what was happening. We can't explain what we see. If his brain was truly shrinking, then there must be something we did right during the past few weeks that succeeded to arrest or even reverse that process. All I can think of were 1) Everyone's prayers.....right when we had almost lost our hopes and when we shouted to the Lord, He listened. 2) Cell salts to the rescue 3) Magic of coconut oil.
All of the above did not involve any drugs, nor surgery, nor forceful intervention and we witnessed the return of my dear son. This is nothing short of a miracle.
Adding to the above miraculous "healing"..... God has planned another miraculous encounter.
It was last Thursday when I met this lady on the MTR ride back to Tsuen Wan.
This lady bumped into an acquaintance on the train and she was telling what she was doing and that she was visiting old people with strokes and providing Tui Na (traditional Chinese manual therapy) and/or acupuncture service. Instinctively I extended the antennae on my head and listened to her attentively. When I heard her saying the ONLY criterion for service is that the recipient has to be physically handicapped, I told myself I HAD TO TALK TO THIS LADY.
When the train stopped at Tsuen Wan, I approached her directly and told her about Jason. I showed her Jason's picture and immediately told her Jason IS physically handicapped to catch her attention. We exchanged business cards and she turned out to be the General Secretary of "Leisure & Health LifeHouse" 樂健生活館 under the FTU Employment Development Service which is sponsored by one of the biggest political party in Hong Kong. I believe she is the trainer there as well and she agreed to visit Jason to see what she can do to help him.
Ever since Jason's deterioration began, we were looking for different ways to help Jason (including stem cell therapy) and acupuncture was back in our mind. But daddy thought the benefits may not worth the hassle of travelling back and forth so mommy was googling like crazy hoping to find a good one near where we live, to no avail. God knows what I want and He grants me MORE than what I asked for. She sent this lady to our door.
When this lady visited us last Saturday, she performed two full hours of tuina, focusing on important meridians to boost Jason's "qi" (energy) and to relax his muscles. After it's finished, Jason was so relaxed he fell asleep like a baby. Jason's auntie and cousin were there and their jaws were dropped when they saw Jason's usually tight legs relax with knees open outward. What's more miraculous is that, she charged me just a fraction of what's considered a "fair price" and she even gave us a box of Godiva chocolate as a gift.
Today is the second day following the massage session and Jason was not fatigued like before.
As I said earlier, Jason all "here" and was "talking" to me.
I am thankful.
God has once again shown His glory through our weaknesses, and through Jason.
Just did a quick google search for the meaning of the name "Jason", it says:
Meaning of Jason: "the Lord is salvation" or "healer".
I did not know that when I decided to use this name.
Was this coincidence or was it all in the divine plan of God?
God knows. I mean......God knows.
Tuesday, April 16, 2013
Jason has seizures
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.
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