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.
Tuesday, October 28, 2014
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!
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!
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