This morning we saw Darus’ neurologist, who also manages his medication. In addition to discussing his overall well-being, I also mentioned that the Standard of Care, published in October 2014, suggests an MRI and asked for her thoughts on this. She told me that it’s possible that Darus might have some malformations/anomalies of the brain, but even if he did, there’s nothing they would do about it and his course of treatment would not change. She further stated that because Darus has a mutation, not a deletion, she doubts anything is anatomically wrong with his brain and believes if there were anything glaring (tumor or growth) that the EEG we did in October 2014 would have clued us into it. She reminded me that even neurotypical people can have differences in their brain, so the test is unlikely to yield us any practical results. For now, I believe, we will put this test on hold, but it is something that I think we will eventually need to tackle.
Darus is 4.75 years old. He’s 48 inches tall and 55 pounds. He has been taking 2 milligrams of guanfacine, one in the morning, and one in the evening, for the past 6 months (prior to that it was 1.5 mgs/day). Additionally, in April of 2015, he started taking 0.5 milligram of Abilify/daily, in the morning. The doctor requested that we increase his Abilify does to 1 mg/day. We started today by giving him 0.5 in the morning and 0.5 in the evening.