Despite the best of intentions I have been plagued with the “Is he getting the placebo or the drug” question throughout the study. It’s so very hard to not stare intently at him each day trying to judge, is he whinier than usual? Is he more social? Is his language better? It’s enough to make a Mom nutty, assuming she isn’t already there!
For a long time I would have sworn he was on the placebo. We noticed nothing different. He was the same sweet, awesome kid. There were no moments where a light bulb suddenly popped on. I guess maybe, despite understanding that it takes time for things like this to build in your system, we didn’t really believe that we wouldn’t notice anything because it was so subtle. I mean, I KNOW my child. We are pretty darn focused on every thing he does or doesn’t do on a daily basis and have been for 8 1/2 years.
When I commented on it, I was told by other parents who’d been in the same position..”You will know once you start titrating down.” Mmmm, hmmm.
So, we’re titrating down now, we’re about 1/2 way off and O.M.F.G. Clearly, we were on something. Caleb is still sweet and awesome. He’s just sweet and awesome with a side of “holy emotional roller coaster” and a dash of “pleasepleaseplease stop whining!”
He is also capable of sitting and focusing on a toy appropriately for long periods of time while we visit with family. I thought it was a fluke on Christmas but he spent almost all of Saturday quietly entertaining himself while we visited with my grandfather. His attention has improved so much that I even floated the idea of removing his ADHD medication to see if the study drug alone can handle that. His overall improvement has also been commented on by the school and by family members this holiday season.
So, in conclusion…yeah, something was going on and now something more is going on…and January 11th cannot get here fast enough! There is zero question about that Open Label Trial now!
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Yay!! Isn’t it amazing the behaviors you get used to, then when the nicer ones start going away…it’s wtf?? There was a difference. Now I wish we would have done some before and after videos, that would have helped. Best wishes for the open label and fingers crossed!! Xoxo
The other question might be….is he being a “typical kid” or something else LOL. Just wanted to add one more to the pot 🙂
I was JUST wondering about how you guys were doing with the titrating down. I’m so glad you’re seeing changes! Exciting, though probably not at the exact moment…
Sometimes he is SUCH a typical kid and it makes me LOL. We get the sly looks, will they catch on or not? Oy.
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