Last week was hard. We found out about yet another diagnosis for our little saint, and turns out, that was the proverbial "straw" that broke this momma's back. He isn't making the neurotransmitter Dopamine, and if that wasn't enough, the part of his brain that produces this substance is being selectively killed off. As the neurologist said, this is "very interesting." Not a good thing to hear from a guy that smart. Allow me to translate. You could equate the term "interesting" coming from a doctor of his intelligence with "puzzling," "mind boggling," "fascinating," "un-ordinary." Shall I continue? All in all, "interesting" isn't what you want to hear from the brain doctor. It doesn't exude confidence, or even a firm recognition of why this is happening. But don't misread me, I still LOVE his neurologist. Why? Because he genuinely cares (and he is one smart, nerdy fella).
Apparently my work/school mind has been turned off for a while, so I had to do some light reading to remember what dopamine was and what it did in your brain. Let me give you the Cliff notes. Dopamine is a neurotransmitter that allows neurons to communicate within the brain. This little chemical apparently is pretty darn important in the brains ability to get information form one part to another, especially in motor functions, or how we move. A lack of dopamine causes Parkinson's disease (not what Dominic has), a condition usually obtained in late adulthood that causes the affected person to loose control of their movements (think of the Parkinson's shuffle... those little small steps they take, uncontrollable shaking, Michael J Fox, etc). Dopamine also is responsible for the coordination and initiation of movement (along with other parts of the brain). This is a very simplified version obviously, but it's enough to get the picture of why this little chemical is so important. On an interesting side note, dopamine levels are high in drug addicts, and according to some of the studies I read, lead to the cycle of addictive behavior. On the contrary, it is low in children with ADHD and is now being attributed to a cause in this diagnosis. .... AND I'm done nerding out.... [[Respond in the comments section if I have something wrong here.]]
The neurologist said the lack of this chemical may in fact be the cause to at least some of Dominic's visual and hearing loss, lack of movement, and lack of coordination, as the information might get "stuck" once it enters the brain. His eyes are healthy, they work. I haven't had an actual doctor say his ears were unhealthy, seems to me the diagnosis of why he has hearing loss is a best-guess, what typically is wrong with kids with this sort of hearing loss. In case you haven't gotten the memo, Dominic is not ordinary. He does not follow the classic pathway in any of his conditions, so a best guess just isn't cutting it here. It seems to me, the buck stops at the brain. The information is getting there, it's just not being moved along within the brain as it should.
So there you go, another diagnosis to add to the list. We have started a 2 week trial of Sinemet, an artificial dopamine replacement drug, to see if we notice any effects in his movement or attention. Only two weeks are recommended because you typically see results in this time period, if you are going to at all, and apparently the risk of this medication is greater than the potential good it may do if you stay on it past the two weeks without clear improvement from the patient. Awesome.
What do we do now? Same thing we have been doing: love this little ball of chubby-bubby with all we have and thank God every day for the good and bad. Teach the other kids what self-gift REALLY looks like. Show them parents who do hard things everyday for the betterment of others. Do our best to hold it together. Try to remember Dominic's great purpose in this life and try not to get in the way of that. Get over myself and so I can let him do his work of preaching. Accept the cross God has given us and try to remain standing as best we're able. If we fall, get back up. Easier said than done, but we're trying. Here's to our "lousy best."