Wednesday, June 27, 2012

Regression and mania

Two weeks ago we had our last neurofeedback session. During the last month of sessions, we were beginning to see a lot of progress with attention and even speech. I was feeling very optimistic that this meant we had his ADHD under enough control for him to go without medication.
Here we are, two weeks later, and Perrin seems to be regressing rapidly. He has lost over 20 sight words that he had mastered, he's reversing his numbers again, and he's been mildly manic for over a week. I'm trying so hard not to be devastated, trying to convince myself that this may just be a minor setback, but this has been one of those weeks where it seemed like trying to teach Perrin was a waste of time, since he doesn't seem to be retaining anything or sustaining focus long enough to even be instructed. He was doing math on the computer this morning, a program where it will flash a very simple addition problem (2 +2), and he would type in the wrong answer. The computer corrects him, and he has to type in the correct answer before moving on. Then he would just retype that same number for the next problem without even looking at it.
His tics have become so frequent that every task takes twice as long. Reading a book has now become a 20 minute process of reading a sentence and then ticcing for almost a full minute before moving on. He's forgetting  words he used to know and becoming more and more frustrated by my corrections. He licks his lips to the point where they're cracking, he's walking on his toes and tapping them periodically. He makes almost constant loud explosion noises, which is exceptionally challenging during school work. He's so hyper and manic that it's difficult to carry on a conversation with him. He is currently giggling and babbling directly into my ear and refuses to talk about anything but Power Rangers. If we try to change the subject, he simply ignores anything we say and returns the conversation back to this new obsession.
He paces around the couch for up to 15 minutes at a time nonstop singing songs that he makes up on the spot. While quite adorable,it is exhausting. We are now back to repeating directions several times with little success.
He's happy, almost deliriously so. He laughs a lot during our school lessons, but he's not paying much attention at all to what we're doing. I now have the difficult decision of whether or not to put him back on the stimulants that will worsen his already frequent tics, that make him crabby and argumentative. Yes, he'll probably learn better. Yes, he'll likely be able to sit in a chair for a few more minutes. But he'll be unhappy and difficult to deal with.
I am angry that I have to make this decision for him. I hate that I have to choose between chemically altering his brain so that he can learn or allowing him to be a happy child. It's unfair that he can't have both. I'm holding on to a scrap of hope that this is a short lived setback and that soon we'll again see improvement. I'd love to have a coherent conversation with my son again. I'd love to see that spark in his eye from feeling he's doing well in his school work. I suppose only time will tell. Perhaps this is just a manic week, and he'll come down soon.

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.