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.
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