Jason went thru a test today called VEP. He was put to sleep after a dose of hydro chlorate. Then electrodes were adhered to his scalp. The flash stimuli were used this time as opposed to the checker patterns done many years ago in Toronto.
It's supposed to measure the time (latency) it took for a stimulus (flash) to travel from the eye to the back of the brain where the visual cortex lies. Jason's result is like this;
P100 latency: 120ms (same for left and right eye)
Amplitude: 4.72uV for the right, 0.89uV for the left
The optometrist said the norm was 110ms so he was not far from the norm. And the fact that there is a recordable amplitude means he doesn't have a strong case of optic atrophy. So he said....
Of course, the inquiring mind of me as usual would search for more info on Google. What I find is that this result is typical of someone with optic dysfunction and not what the optometrist said as "within normal limit" unless there is a different norm in his lab. He did mention that the amplitude for the left eye could be interpreted by some as insignificant. In other words, the response is so weak that it could be considered as negligible. Now that is a concern cuz does that mean Jason doesn't show visual response even to light? He then said some people would repeat this test and may show a different reading. In fact he had to do it three times today to obtain a proper reading. So what does that tell us of Jason's vision? I really have no clue.
By the way, we were supposed to do a similar test for hearing but he woke up so that has to be rescheduled. But I am debating again as to the value of doing it.
First, this is not exact science as there can be factors affecting accuracy of reading. Second, what is this "science" reslly telling us? I know jason's vision is not "normal" per se. Does this quantify anything? Does that tell me how much his visual cortex "receives" and what is being processed? Not at all. The optometrist seems to tell me jason's optic nerve is not too bad (referring to previous observation that it's slightly pale), but the result says it is not "fine". Shall I repeat the test for the purpose of scientific inquiry? Unlikely. Now that I know this optometrist a little more. I guess he is the "half-cup full" type of person who is reluctant to be the bearer of bad news. While I remain "cautiously optimistic" about jason's development, I guess I will wait to see what the neurologist and the paedietric opthalmologist would say in the next appointments.
Thursday, March 29, 2012
Tuesday, March 27, 2012
Efforts won't be wasted. Jason's coming back.....again!
Efforts won't be wasted, so true. Over the past few days, we've noticed some noticeable changes in Jason.
In the previous post, I was mentioning things we used to do to help him. So this past week, I have been digging mentally into my "medicine box" and see what else can be done to help my boy.
I used some of Svea's neurodevelopmental exercise for vision such as pleoptics, pupil stimulation etc... I used Bonnie Brandon's Reflex Integration Protocol with Cold Laser Light Therapy. ABR is finally a routine now for Jason, both intense ball and supercharged ball rolling. On the nutritional support side, I also gave him Methylcobalamin (B12) which seems to boost his energy up. On top of that is the regular administration of Alex Sutton's cell salts, fish oil, Magnesium Citrate, and probiotics. I am still looking for a supplement for his eyes to hopefully slow down the atrophy.
In a nutshell, the observations over the past 4 days are noticeable and more than just subtle.
- He held a bun in his left hand while we pushed him on his pushchair. he was able to feed himself while the chair is in motion, and he did it marvellously clean and the eye-hand-mouth are amazingly well-coordinated.
- Instead of bending his head and upper trunk, he was able to prop up in a nice position and keep his head up.
- When we went home in a taxi at night, he was sitting up tall and looked outside the window paying attention to the night views
- He said bye bye to me without me asking for it. (Usually I had to ask and wait for more than 30 sec to get a response and sometimes I won't even get a response.)
- He was helping actively when we put on his jacket. I asked him to sit up straighter and he responded by propping his trunk up.
- He was rolling over the bed for one roll...something he hasn't done for months.
- Daddy saw him propping up in a 4-point crawling position in bed....the day after I did the Landau reflex and the STNR with laser ....coincidence?
Anyway, I am grateful to God that I feel we're back in the driver's seat, that we can still do something about Jason's progress. But that means we can never stop. As the name of our blog says it right. After all, it's a miracle.........in progress.
In the previous post, I was mentioning things we used to do to help him. So this past week, I have been digging mentally into my "medicine box" and see what else can be done to help my boy.
I used some of Svea's neurodevelopmental exercise for vision such as pleoptics, pupil stimulation etc... I used Bonnie Brandon's Reflex Integration Protocol with Cold Laser Light Therapy. ABR is finally a routine now for Jason, both intense ball and supercharged ball rolling. On the nutritional support side, I also gave him Methylcobalamin (B12) which seems to boost his energy up. On top of that is the regular administration of Alex Sutton's cell salts, fish oil, Magnesium Citrate, and probiotics. I am still looking for a supplement for his eyes to hopefully slow down the atrophy.
In a nutshell, the observations over the past 4 days are noticeable and more than just subtle.
- He held a bun in his left hand while we pushed him on his pushchair. he was able to feed himself while the chair is in motion, and he did it marvellously clean and the eye-hand-mouth are amazingly well-coordinated.
- Instead of bending his head and upper trunk, he was able to prop up in a nice position and keep his head up.
- When we went home in a taxi at night, he was sitting up tall and looked outside the window paying attention to the night views
- He said bye bye to me without me asking for it. (Usually I had to ask and wait for more than 30 sec to get a response and sometimes I won't even get a response.)
- He was helping actively when we put on his jacket. I asked him to sit up straighter and he responded by propping his trunk up.
- He was rolling over the bed for one roll...something he hasn't done for months.
- Daddy saw him propping up in a 4-point crawling position in bed....the day after I did the Landau reflex and the STNR with laser ....coincidence?
Anyway, I am grateful to God that I feel we're back in the driver's seat, that we can still do something about Jason's progress. But that means we can never stop. As the name of our blog says it right. After all, it's a miracle.........in progress.
Monday, March 19, 2012
Optic nerve atrophy
Atrophy - an ominous word that every patient hates most. It is defined as the "decrease in size or wasting away of a body part or tissue". Jason's condition was never given an official diagnosis other than the fact that his cerebellum has stopped developing during conception for some unknown reasons. But luckily we were given the assurance that it will not shrink, i.e. it is not a case of atrophy.
When he was around four years old we took him to Sick Kids Hospital in Toronto to have his eyes checked. The then retiring opthalmalogist told us his optic nerve looks pale.... an indication of mild optic nerve atrophy. But then he corrected himself after a couple of months in the next check...saying maybe his eyes need some checkup. Having ruled that out, we still noticed his vision wasn't 100%. He has mild strabismus and focus issues. When he looks at you, it's like he is looking through you. Then, when he was around seven, his eyes became more "normal". No surgery, no glasses, strabismus is gone. I attributed this to the things we've done such as crawling to help with his convergence, vision therapy, ABR machine application on the occiputal area, g-therapy, etc....
Having said that, there were still moments when I suspected problems. I would cover one of his eyes, and he would be fine. But if I switched to cover the other eye, leaving what must be the "bad eye", he would be irritated and seems to get scared. Then there was the observation that he would use his fingers to "feel" the cheerios on the table in front of him, instead of looking for them. He would also close his thumb and index fingers into a pincer thinking he got the cheerio, when in fact he did not. We've always known that cerebellum affects vision and the judgment of distance so we thought that can be explained by that.
Now...the term optic nerve atrophy comes back to haunt us again. This time it's coming from the opthamalogist at Queen Mary Hospital. Meanwhile, the optometrist at Duchess of Kent says it's only very mild. In any case, this is a good reminder that atrophy is not a static condition. We need to constantly watch out for it and combat it should it gets worse sooner than you thought. I am definitely revisiting all the therapies we have done before and there is one thing I haven't done....nutritional therapy for eyes in particular. I already got some ideas. Omega 3, lutein, zeaxanthin, B12 methylcobalamin etc....will be studying more in the coming days.
Yes...every problem should have a solution. Don't let it come at you. Fight with your greatest might especially when God is behind you, nothing should stop you.
When he was around four years old we took him to Sick Kids Hospital in Toronto to have his eyes checked. The then retiring opthalmalogist told us his optic nerve looks pale.... an indication of mild optic nerve atrophy. But then he corrected himself after a couple of months in the next check...saying maybe his eyes need some checkup. Having ruled that out, we still noticed his vision wasn't 100%. He has mild strabismus and focus issues. When he looks at you, it's like he is looking through you. Then, when he was around seven, his eyes became more "normal". No surgery, no glasses, strabismus is gone. I attributed this to the things we've done such as crawling to help with his convergence, vision therapy, ABR machine application on the occiputal area, g-therapy, etc....
Having said that, there were still moments when I suspected problems. I would cover one of his eyes, and he would be fine. But if I switched to cover the other eye, leaving what must be the "bad eye", he would be irritated and seems to get scared. Then there was the observation that he would use his fingers to "feel" the cheerios on the table in front of him, instead of looking for them. He would also close his thumb and index fingers into a pincer thinking he got the cheerio, when in fact he did not. We've always known that cerebellum affects vision and the judgment of distance so we thought that can be explained by that.
Now...the term optic nerve atrophy comes back to haunt us again. This time it's coming from the opthamalogist at Queen Mary Hospital. Meanwhile, the optometrist at Duchess of Kent says it's only very mild. In any case, this is a good reminder that atrophy is not a static condition. We need to constantly watch out for it and combat it should it gets worse sooner than you thought. I am definitely revisiting all the therapies we have done before and there is one thing I haven't done....nutritional therapy for eyes in particular. I already got some ideas. Omega 3, lutein, zeaxanthin, B12 methylcobalamin etc....will be studying more in the coming days.
Yes...every problem should have a solution. Don't let it come at you. Fight with your greatest might especially when God is behind you, nothing should stop you.
Tuesday, March 13, 2012
Flu is like Fate....
Flu is like Fate. You know it's coming, but no matter what you do, you simply can't stop it from coming at you. In it's face, you'll lose power, you'll lose strength, you will even lose your say cuz you can't even decide if you can go out because it will stop you. You lose confidence because you look awful and you can't talk. You disappoint your boss, your co-workers, your friends and your kids cuz you'll be breaking promises and failing commitments. Forget all about your plans, now you just want to go back to "normal".
But there is one good thing : your husband will love you more because he treasures these rare moments of silence when you are finally not talking ; )
Furthermore, you will appreciate the time you were forced to stay in bed with a brain so fogged up that can't even think. Ancient Chinese wisdom said it right "小病昰福＂。("Minor ailment is a fortune".) Good luck to you who had the FLU!
But there is one good thing : your husband will love you more because he treasures these rare moments of silence when you are finally not talking ; )
Furthermore, you will appreciate the time you were forced to stay in bed with a brain so fogged up that can't even think. Ancient Chinese wisdom said it right "小病昰福＂。("Minor ailment is a fortune".) Good luck to you who had the FLU!
Saturday, March 3, 2012
Human Cloning? What do you think?
I was asked to express opinions about human cloning on one occasion. I started off differentiating between cloning the entire body (reproductive cloning) vs cloning certain cells/tissues/organs of the body as potential cures or treatments for originally incurable diseases (therapeutic cloning). My opinion was one of outright objection for reproductive cloning as it poses serious threats to family structure and the human race. Imagine cloning technology falling in evil hands for malicious intentions, the potential damage is not unlike what we saw in Science fictions and movies, where horrific giants brought about massive destruction of the world.
When it comes to therapeutic cloning. Organ cloning for medical purposes seem to have great potential. Imagine a patient with a failing kidney would not need to wait for a donor nor would he need to worry about side effects after the transplant. However it touches a very sensitive and controversial boundary of bioethics. For example, I can foresee people using cloning to prevent aging even death. If this is the case, what is to become of our human race? Is it all good that nobody ages and nobody dies? How about population control? How about food and resource scarcity? Do we then rely on genetically engineered foods and eat vegetables that never grow in soil?
But I am throwing a question here as food for thoughts. To all parents out there with children who are disabled in one way or another: If someone offered to clone a good brain out of the not-so-good brain of your child and put it back into your kid's head, would you say yes?
Due to my own religious belief, I had no hesitation to that answer and would definitely say NO. I believe everything happens for a reason and we are who we are under God's master plan of our lives . Cloning is human attempt to play God and would only bring about more disasters than good.
Welcome to share with me your thoughts.
When it comes to therapeutic cloning. Organ cloning for medical purposes seem to have great potential. Imagine a patient with a failing kidney would not need to wait for a donor nor would he need to worry about side effects after the transplant. However it touches a very sensitive and controversial boundary of bioethics. For example, I can foresee people using cloning to prevent aging even death. If this is the case, what is to become of our human race? Is it all good that nobody ages and nobody dies? How about population control? How about food and resource scarcity? Do we then rely on genetically engineered foods and eat vegetables that never grow in soil?
But I am throwing a question here as food for thoughts. To all parents out there with children who are disabled in one way or another: If someone offered to clone a good brain out of the not-so-good brain of your child and put it back into your kid's head, would you say yes?
Due to my own religious belief, I had no hesitation to that answer and would definitely say NO. I believe everything happens for a reason and we are who we are under God's master plan of our lives . Cloning is human attempt to play God and would only bring about more disasters than good.
Welcome to share with me your thoughts.
Wednesday, February 15, 2012
To do or not to do, that's the question
Can't believe I haven't touched the blog for more than a year - the year when we returned the whole family from Toronto to Hong Kong. So many great things happened and so much to share, but too little time. I began to work again after being a stay-home mom for ten years, and that's a big adjustment for me and Jason.
But what's most unbelievable is that, ABR came to Hong Kong with me! What kind of good luck is that? We had our first satellite session last week and it felt great to be able to do that. No more long-distance driving, no more snow-covered roads. Just a relatively easy subway ride. Then Sarah reminded me of this blog, so here I am again.
Just as we are learning the new ABR techniques, we saw the neurologist in Hong Kong to open a file for Jason. Here in HK, the neurology team is divided into the neuro-motor/rehab team and the diagnostic team. This doctor we saw yesterday is responsible for the diagnostic team. He suggested that we do a lumbar puncture to help give us more information about his condition. he also mentioned dystonia. This is the first time a Dr. used "dystonia" to describe Jason's movement disorders. At the time he said it, I wasn't sure I agreed with his observation. But after some research, I can see where he's coming from. He also suggested possible administration of dopa drug. On the other hand, he said the chance we yield any conclusive dx is less than 5%.
Here the decision is ours to make. To do or not to do? That's the question.
But what's most unbelievable is that, ABR came to Hong Kong with me! What kind of good luck is that? We had our first satellite session last week and it felt great to be able to do that. No more long-distance driving, no more snow-covered roads. Just a relatively easy subway ride. Then Sarah reminded me of this blog, so here I am again.
Just as we are learning the new ABR techniques, we saw the neurologist in Hong Kong to open a file for Jason. Here in HK, the neurology team is divided into the neuro-motor/rehab team and the diagnostic team. This doctor we saw yesterday is responsible for the diagnostic team. He suggested that we do a lumbar puncture to help give us more information about his condition. he also mentioned dystonia. This is the first time a Dr. used "dystonia" to describe Jason's movement disorders. At the time he said it, I wasn't sure I agreed with his observation. But after some research, I can see where he's coming from. He also suggested possible administration of dopa drug. On the other hand, he said the chance we yield any conclusive dx is less than 5%.
Here the decision is ours to make. To do or not to do? That's the question.
Tuesday, January 18, 2011
ChoiceBoard Maker is live on App Store!!!!!!
After months of hard work by my nephew Andy, the app I have always wanted for Jason is now available for everyone using iPad! We decided to call it "ChoiceBoard Maker" to highlight the fact that it is more a tool for customizing choice boards than an app with everything ready made. I have only had to tell him what I want, and I let him figure out the technical part. Of course, I had to at least contribute by writing up the app features for the official launch. Initially he was not quite ready for the launch. But the beta version that I had expired and he had to reload to my iPad again. Adding to the fact that I will be leaving Canada, I urged him to speed up the launch so I don't have to worry about another expiry. So with my relentless pressure, he finished some final details of the app last week. It was only 2 days after the launch and we were quite surprised to see more than 1500 downloads already. This is a pleasant surprise to both me and Andy, who often doubt the potential of this app. There are many features that I want to see added of course, but since he is still busy with his school work, (he is 4-year engineering student) I will spare him for until later. There are some darn good review too and I am so happy his hard work does finally get rewarded. Of course, his insistence to make this a free app (in its current version, at least) in order to help other children like Jason also warms my heart.
Jason looooves using his iPad now. Whenever I give him the choice to do something vs iPad, he will say iPad for sure with a big smile. I use ChoiceBoard Maker to let him choose his favorite music, motivate his visual skills by touching at the requested object (e.g. Find the duck) etc... I'd also use a doodle app which allows me to type a word and save it in the iPad image library. Then I present Jason with whatever sight words I happen to need at that moment, and he will choose between those words. This is done either in context (e.g. choosing which activity to do: piano vs computer) or as a stand-alone activity (e.g. word recognition).
Jason enjoys everything done with this app and he now knows what is expected from him - touching and pointing! Who needs a mouse? It's so difficult to control! Who needs dual-switches for step-scanning? It's more complicated than setting a VCR program! Fingers are all we need! Thanks to Apple, Thanks to iPad, and Thanks to Andy. You all together have opened up more possibilities for Jason, that I have never thought of. Even though he is not 100% solid with his pointer skill, just that fact that he thinks it's fun makes it a great learning tool.
Jason looooves using his iPad now. Whenever I give him the choice to do something vs iPad, he will say iPad for sure with a big smile. I use ChoiceBoard Maker to let him choose his favorite music, motivate his visual skills by touching at the requested object (e.g. Find the duck) etc... I'd also use a doodle app which allows me to type a word and save it in the iPad image library. Then I present Jason with whatever sight words I happen to need at that moment, and he will choose between those words. This is done either in context (e.g. choosing which activity to do: piano vs computer) or as a stand-alone activity (e.g. word recognition).
Jason enjoys everything done with this app and he now knows what is expected from him - touching and pointing! Who needs a mouse? It's so difficult to control! Who needs dual-switches for step-scanning? It's more complicated than setting a VCR program! Fingers are all we need! Thanks to Apple, Thanks to iPad, and Thanks to Andy. You all together have opened up more possibilities for Jason, that I have never thought of. Even though he is not 100% solid with his pointer skill, just that fact that he thinks it's fun makes it a great learning tool.
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