Wednesday, June 20, 2012

Praise Science!

After 5 months of hauling the boy to sessions twice a week for a total of 40 sessions, we are done with neurofeedback. And let me tell you that it was worth every second of travel, worth the disruptions to his routine,  and worth the thousands of dollars spent.
Prior to training, Perrin was all over the place all of the time. Having a conversation with him was excruciatingly difficult most of the time because he had so many things going on at once and couldn't sustain his attention on you long enough to respond. Schoolwork was very challenging because we had to medicate the hell out of him to get him to sit still long enough to do even a few minutes of work, which caused his tics to increase so substantially that it doubled the amount of time any task would take. He'd read a sentence and tic for two minutes straight. Often those tics became self-harming, and he became very frustrated with them, telling me he hated them and wished he could stop ticcing by third grade. You could almost see him trying to suppress them, but he doesn't have the kind of control needed to do that yet. Plus, we are definitely not encouraging tic suppression, since that just causes them to come back twice as strong later on when he should be relaxing and just being a kid. If we tried to do a school day without the stimulants, it was damn near impossible to get him to do anything. He'd laugh uncontrollably and respond to every little bit of stimuli around him to the point of exhaustion for both of us. I would have to sit by him and redirect his focus constantly, and he was incapable of any independent work at all since he'd simply get up and walk away after a minute or so when something caught his eye or he had a project of his own choosing to complete. Having a conversation usually consisted of continuing his scripted dialogue from TV or movies. He didn't seem to be able to come up with spontaneous speech that had nothing to do with his obsessions with superheroes. His brain and body just never slowed down.
I didn't know what to expect going into this experiment. I knew it was a gamble, a huge one. But watching Perrin struggle with even simple tasks like getting dressed or putting on shoes was something I couldn't continue to watch without exhausting every possible avenue of treatment.
So, here we are. We didn't honestly start seeing improvements until around the 25-30th session, and our first glimpse that it was changing him was that he stopped scripting. His speech became more meaningful and understandable. He started pronouncing words correctly and was able to make the "th" sounds, which he had never done before. When we asked him a question, he answered appropriately almost every single time. The second thing we noticed was that giving him his usual 15 mg dosage of stimulants was now turning him into a zombie. Whereas before it just slowed him down enough to be able to sit in a chair for more than a few minutes, he would space out completely and become very tired about an hour after we gave him the meds. This was what Ann had told us would happen, and I was elated to be able to start decreasing that dosage. Little by little, I was seeing the same amount of focus from him on smaller dosages that we were seeing at the highest dosage. Eventually, I stopped giving it to him altogether, which was the ultimate goal.
Does he have consistent and sustainable focus? Not entirely. He has great days and less than great days. But what he can do is sit and read a book with very little redirection or correction without staring out the window or stopping to tell me about what the Power Rangers are doing every five seconds. He can follow a multiple step direction fairly consistently without constant reminders. He still occasionally walks to the top of the stairs only to shout down to me that he doesn't remember what he's doing up there, but hell, I do that too.
He still has frequent tics, and they are always strongest when he needs to direct his focus, but we knew that the neurofeedback would have little to no effect on the tics. Our aim was to improve his ADHD symptoms to the point of being able to take him off those meds, and we have done that. His mood has improved, and his confidence is growing. He feels pride in himself for the first time in his life and is a much more engaged member of our family.
I feel so grateful that he was born in a time when technology has advanced to a point where these kinds of treatments are possible. I'm grateful that there are people out there that devote their lives to helping our kids develop and thrive. I feel so optimistic for his future, and I can't wait to see what he can do.


  1. this is awesome news Amanda.We are so happy for Perrin.He has wonderful parents:)

  2. Tucker, tell Perrin hi for me, and that, as a cousin, I'm incredibly proud of him.