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.