Scopolamine - to drool or not to drool

Timing wouldn't have been more accurate...exactly one year and 5 days since the last blog post...written for the same reason - to report after seeing Dr. Fung..with a new prescription.

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).

The above seems to explain what may have happened.  The benefit of a dry chin, smart looking Jason seems to be defeated by the cost of these side effects. What works for other kids work quite differently in Jason's system.  Once again, pharmacology is like the angel with devil horns...do good with the best of intentions, yet not without cost.

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

The prescription

Here is the prescription :
Madopr Dispersible 0.2 tablet to start x 2 and gradually increase to 0.6 x 3
Calciumfolinat 15mg x 2

Day 1: Oct 28 Tuesday
No nasty side effect
Strangely enough, Jason's wrists are totally relaxed when going to sleep.

Feeling hopeful.

Big leap of faith

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!

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.

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.

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!

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.

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. 

Cerebral atrophy and Stem Cells

It has been such a long time since my last update.
To recap, Jason's latest MRI in October 2012 shows not just a smaller cerebellum, but a shrinking brain. According to medical definition: "Cerebral atrophy refers to the loss of brain cells over time. Atrophy refers to a decreased size or wasting away of any part of the body".

There is still no known diagnosis, no treatment, nothing we can do to stop the atrophy.
But since Jason has been a happy camper at school and we're not expecting any progress anyway...so there's no pressure....we are just counting blessings a day at a time.

But we are still trying in all possible ways to slow it down.
ABR, cold laser therapy, meridian scrapping, supplements, etc...

Over the last week, we are seeing sudden signs of deterioration. Daddy and Bella our helper all noticed Jason's hands twitching more and his fists go on a spasm even as he falls asleep. His alert time seems to be shorter and shorter and gets tired all the time.  He talks a little less and his spoon-feeding is getting hard as his fist closes so tightly on the spoon. I also notice pressure sores on his sacrum, a sign that blood circulation is poor over his sitting area because he is moving less and less by himself.  His knees are flexed (bent) at a bigger angle now and the orthpedic doctor is suggesting a non-invasive surgery called Guided Growth to help him straighten his knees over time.  While we are still waiting for anaesthetic assessment for the surgery, we are also thinking about stem cell therapy in China.

A few ABR parents from USA and Canada have been brave enough to fly all over from N.Am to China and did it a few years ago and they've been recommending to me for a long time.  But being a Chinese, I know enough not to trust the Chinese.  I was suspicious about this even though I know there is a potential yet I really like to wait till it's more mature and regulated. I've met many new friends in Hong Kong who have children with special needs. Many of them have taken their children for stem cell therapy. They all have good experience with it though the change is not miraculous.  I am trying to get in touch with other parents and gather as much information as I can to seriously think about its possibility.

I have been praying for guidance on this....and these signs of deterioriation may be an answer?  I don't know.
I pray that God will protect Jason from harm, keep him safe from further deterioration, and to keep him smiling and loving for every breath he takes, and to give us strength to protect him and take care of him and love him for what he is to become. Amen.

BioEQ gel

BioEQ is a natural cream developed by ABR (Asia). It is a natural gel with leech extract. It was introduced to us by Sarah when she visited us in Hong Kong this past September. The fact that leech (the blood-sucking wormy thingy that's black) is one of the major ingredients gave me goosebumps in the beginning . But after I saw the  pictures of before/after comparison of over 30 individuals (grown-ups and youngsters, normal intelligence and the special needs), I have to give it a try.

Today is the first day of trial.  I just apply it over Jason's face and neck. It has no fragrance and it's not sticky.  It feels a little cool and Jason doesn't mind it.  In fact, I'd like to try it on my face too and see if it will slow down aging and remove those wrinkles that start to creep on my face. Stay tuned for miraculous comparison pictures (I hope).

Jason's MRI update

Finally.....

The year-long investigation that was initiated since we relocated from Canada to Hong Kong is getting closer to an end....Or put it this way, there would be no more invasive investigation like MRIs or lumbar puncture to be done.  The neurologist Dr. Fung suspected earlier that Jason may have iron deposits in the brain and requested another MRI to zoom in the suspicious area. If there is, he would be one of ten cases in the world. Thankfully, the latest report says NO iron deposit is found.   I consider this a relief because that means Jason does not need to go on drug trial and be a guinea pig of any kind.  However, it was confirmed that both the cerebral and the cerebellar are shrinking suggesting Jason's disability is a progressive case......Not the most beautiful picture...but he is still doing fine as of now!  Other than his droopy head that refuses to come up, he is an alert young man...giggling when we talked about his "girlfriend" in the school bus.  We are also enjoying our daily piano "practice" and Jason would be banging on the piano joining me as a duet.  His "bangs" used to be weak in the beginning, but now they are strong and purposeful.  Talk about improvement!

Since the investigations in Hong Kong have brought us back to square one, with no formal diagnosis for Jason, Dr. Fung suggested we get in contact with Dr. William Dobyns in U of Chicago again (whom we've corresponded a few years back) and see if he has any new information from his research.

I have since then written Dr. Dobyns an email and hopefully will get a reply soon.

Meanwhile....there are more "imminent" things to deal with.  Jason's pimples!

Puberty has arrived and today I had to buy a cleansing gel for his pimples....have yet to perform a "facial treatment" on my son.  Would be fun.

Oh....if you want to know more about cerebral atrophy...here is what I got from the NIND website.

What is Cerebral Atrophy?

Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls. If the cerebral hemispheres (the two lobes of the brain that form the cerebrum) are affected, conscious thought and voluntary processes may be impaired.

Alex Sutton in Hong Kong

The idea started budding in June when my colleagues were curious about the mineral salts that I was taking.  I brought up the idea to Alex and asked if he would consider coming to Hong Kong to see some patients. Not knowing how many families I would get, Alex agreed to stop by Hong Kong after he visited Singapore.  After all, we have been talking about meeting each other for a long time since 2007 - the year he first evaluated Jason online.

Alex is a little older than I thought.  But that does not affect the way we communicate. I enjoy having conversations with him as there is so much wisdom and so much to learn.  He is also very humble asking me not to introduce him as Dr. Sutton, but just call him Alex.  He is super observant and his comments are often humorously pungent when he talks about the Americans and the people from the "other China" who were flocking over the TsimShaTsui area.  (He definitely has picked a wrong hotel - right where the China-Hong Kong Ferry Terminal is).

His two-day stay here was fully booked with appointments. I was there all day to help him (in fact, more to lend support to my friends and family) but I truly appreciate the fact that he was showing me how to do facial diagnosis.  We managed to have 16 families booked and they all were pleased to have met him.
This therapy is still very new and unheard of in Hong Kong and I am sure when people start to benefit from it, words will start to spread out.

My new helper was curious about what Alex did to Jason so I showed her some pictures of Jason's eczema.  The change was so amazing and she asked why I didn't share them online.  So here they are...Jason's eczema before and after.  All I did was give him the prescribed minerals and remove whole eggs from his diet as per Alex's suggestion. No nasty steroidal cream.  Pretty amazing eh?

Feb 4, 2008

April 5, 2008

   

Old Videos of Jason

I was organizing some old VHS videos and their digitized version yesterday and had so much fun looking at baby Jason. In this video, I was asking him to let go of his hands and stand up tall.  And he did it....just like that. He was such an adorable kid by all standard and even though he was considered developmentally delayed at that time (2 1/2 years old), his alertness and responsiveness made it quite hard to associate that with "mental retardation".
When I watched these videos two years ago, I'd feel quite sad as if he has "lost" some of his skills.  But today when I watched them again, I didn't have quite the same feeling. I feel so blessed that I was able to capture those precious moments for memory, just like any parents would enjoy watching the toddler videos of their grown-up kids while commenting on how they have changed for the worse as they grew up.

Next week, he'll be having another MRI and we may be closer in finding a diagnosis for him. No matter what  happens, Jason is a blessed kid in a blessed family and that will not change.

Jason's vision

Never have I imagined that I'd be searching for iPad apps for children with CVI (Cortical Visual Impairment) - that is, visual problems caused by the brain rather than the eyes.  We were suspecting (including the optometrist) whether he has optic nerve atrophy just a few months ago, but today we are seeing the impact of ONA already.

March 2011

July 2012

It's getting almost impossible to take a nice picture with Jason as he doesn't seem to be able to locate the camera and his pupils are not responding to light at a normal speed. His smile seems to go with the vision too.  It's sad....but we will not let this defeat us.  We will continue to live life to the fullest as long as there is love.  I am still hopeful that this could also be a teenage thing and that I will be able to show off his adorable smiles again.

Meanwhile, I have a prayer request for my little boy (correction: Big Boy):  that he will be able to maintain or even regain his vision so he can continue to learn and experience this beautiful world around him and that he will continue to be surrounded by people who care about him and nurture him everywhere he goes.

Love can move mountains. Nothing is impossible.
Miracles are still in progress....

Wheelchair assessment

We took Jason to the orthopedic dr at Duchess of Kent who thought Jason's back and neck is bending too low. It looks almost like a hunch but the difference is that his spine is not stiff and he actually has the ability to hold up straight .... but only if he wants to. The Dr. refers us to the OT at Duchess of Kent Hospital for a wheelchair assessment. She is of the opinion that we should get him a new wheelchair that can tilt in space allowing him to half-lie on the chair at an angle.  We went there to try a couple of "tilt" wheelchairs but the more it tilts, the more Jason bends his head/neck to resist the gravity.  That tells me his head-bending is his choice. Yet the OT still thinks this is the only solution (other than fixing his head position with a head band that is attached to the headrest)  and this solution would cost us $24000 HKD. Cost aside, both Dad and I are quite unhappy by her non-professionalism. The fact that a tilt wheelchair is not gonna help is quite obvious yet she still recommends us doing so.

I know Jason is a tough case and I don't expect anyone to have a quick solution to any aspect of his well-being but I expect a responsible opinion or at least an honest one admitting that there is nothing we can do to help. I know she may feel frustrated  because whatever she suggested (including the body brace, and a chest band she made - and she took the wrong measurement in the first fitting) didn't seem to work for Jason.  And I am sorry.  I want so much to tell them about ABR Therapy, the primary curve, etc... but I know it's a waste of my time and she will think I am crazy.  So now she is transferring our case to another OT, calling it quit I guess.

Fortunately, Jason's PT and OT at school are very nice and they are giving us the advice we need.  Since they know Jason so much better, they agree with us that a tilt wheelchair won't help. So we will take that off the agenda for now. Hopefully his neck will get strengthened enough through ABR to hold up again soon.

How to heal from Gastroenteritis and Fever with no drugs

Jason was said to vomit in the summer centre last Wednesday.  Daddy went to pick him up and Jason vomitted a few more times at home, and developed fever.  I just recovered from gastroenteritis so I am thinking maybe he got the same virus. I told Daddy to give him Sodium Sulphate (Hyland's #11) every 4 hours as advised by Alex Sutton.  As I went home after work, he has stopped vomitting and seemed to have calmed down. He was just tired with zero appetite.  We tried light congee and he refused.  I gave him a little cracker and apple sauce and he ate some without vomitting.  At least, something got down in his stomach.  Then I gave him some homeopathic remedies for the fever, ice packs, and lukewarm towels on forehead.

Thursday morning, he still had fever so I did meridian scrapping for him at the inner side of the elbow, the two tendons behind the knees, then the two meridians on the outer thigh.  By the evening, I can tell his fever is coming down.  Friday morning he woke up with no more fever and he wants to eat rice! Saturday night, he was having pizza with us! I am so glad  we handled another illness without seeing a doctor or taking any pharmaceutical drugs. Dr. Mom wins again.

A relaxing night

Tonight, Daddy wasn't at home so for a change, I have control of the TV remote.  Jason and I were doing nothing but lying on the sofa fiddling with the remote control. We were watching Americas Funniest Videos for a bit and surprisingly, Jason was laughing. Especially when I laughed, he even laughed harder.

Then we were sharing an apple together.  He also seemed to enjoy his bites from my apple.... not spoon-fed apple chunks nor mushy applesauce  but a grown-up bite straight from the apple.  He got some pretty strong gulp there too! Wonder why he is still drooling w such oral motor skills.

Oh God, I love every moment with my very disabled boy, who is very able to make me a proud mom.

Jason had a blood work and urine test done last week. The samples will be sent off to Belgium and Australia to test for a couple of metabolic markers.  Lysosomal enzymes, oligosaccharides and CDG.  I don't know in details what each entails, but I clearly remember CDG is a disorder that has been ruled out in Jason's first blood work in Toronto. A brief research on CDG syndrome bears no resemblance at all to Jason's conditions.  There is a chance the neurologist is collecting samples for research purpose only.  But I didn't want to question him as I trust he has his legitimate thoughts. While hoping the tests will give us some more information, at the end of the day, they may just tell us "yes this is what he has" but there isn't anything we can do.  

This is the dilemma parents like us have to face. To test or not to test...that's the question. But as long as we are not putting Jason through any undue suffering, we thought it's at least something we can do to take a step forward.

Happy Friday
I had a great day today.
I came home elated with joy because of some innocently sweet comments from my students.  A primary 3 boy said a matter-of-factly that he likes me because I am beautiful, the other said she likes me because she learns a lot from me.  Then another class of kindergartenders hoorayed because they got to have a 2-hour class with me.  Two hours of phonics? Even university students found it hard to concentrate for 2 hours.  But these kids were still pumped up all the way till the end. 

Oh...last but not least, (this happened the other day), as I stepped into the classroom with these four little girls sitting there, one of this girl named Sarah, suddenly clapped her hands in excitement.  That makes me feel really important...ha. What a great day to see motivated kids like this.  This more than makes up for the other annoying moments of my teaching life.