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....