Sunday, November 23, 2014

This Is Asher's Brain on Drugs

Remember those commercials (in the 80s?) of an egg "This is your brain" and then a fried egg "This is your brain on drugs", trying to illustrate the point that drugs fry your brain? Please tell me someone remembers those?! Well if in the original commercial it's an egg vs. a fried egg then in Asher's case it's an egg vs. a cute little fluffy chicken hatching from an egg. That's how good those drugs are.

No that's not it at all. I don't know what I'm talking about. Ignore that weirdly misguided metaphor. All of that said, Asher's on drugs. I think I have alluded to him trying drug therapy here and there, but I've never elaborated on it. Basically it's been in the works for months (almost a year actually) and now it's finally underway. So let me explain.

Back when we went to Shriner's last January, our orthopedic surgeon there floated the idea of putting Asher on medication - specifically Baclofen. Baclofen is traditionally used in children with spastic CP, which Asher does not have; however, they've also tended to see results in children with athetoid/dyskinetic/dystonic/hypotonic (whatever we're calling Asher's type of CP these days). They sent us home with a ton of literature and some thinking to do.

Fast forward then to the summer. We had another Shriner's visit on the horizon, as well as check-ins with our orthopedic surgeon and neurologist in Victoria. We saw the neurologist here first and while she was totally on board with Baclofen at first, the more she started talking the more she thought Asher might benefit from Sinemet - or levodopa/carbidopa - used in Parkinson's patients. We left her with even more thinking to do because now another drug had been introduced into the equation.

So back to Shriner's we went. We met a new neurologist there, and while she respected our Victoria neuro's opinion, she personally didn't have a lot of experience with Sinemet so she was suggesting Baclofen. Definitely Baclofen.

So now we've got two votes Baclofen, one vote Sinemet, with the all-important parents' vote undecided. Oy.

Enter our orthopedic surgeon here in town. Can you guess what he suggested? Of course Sinemet because why wouldn't we have 2 doctors' votes per side? So now we lucky parents are left to be the tie breakers. Talk about a decision.

So we discussed, and researched, and wavered, and discussed some more. We saw the benefits of Baclofen and were able to get concrete data on how it has worked numerous times on kids with CP - but not necessarily Asher's type of CP. We also saw the potential benefits of Sinemet, although there was little to no research on the usage of the drug on anyone but adults with Parkinsons. Where to go now?

Well I have an awesome circle of parents whose kids have CP and I turned to them for advice. And then I consulted my life long friend who happens to be a pharmacist.  We had a very in-depth, thoughtful conversation that included pros, cons, side effects, and our overall rationale for putting Asher on meds to begin with.

Which I guess I should pause to explain. The theory behind putting Asher on medication is to get some of his movements under control. Not to expect a miracle and suddenly have him jumping out of his chair and walking, but to help improve the quality of his movement. He is not in pain and there is no real need for any drug - all we're looking for is quality here. So in that respect it made that part of the decision making easy: If the drug works, he stays on it; if it doesn't work, or there's side effects, he goes off. No question.

Anyway back to the story at hand. Armed with a ton of research, we decided for a multitude of reasons to try Sinemet first, even though there was far less evidence aside from anecdotal. I've already bored you for long enough so I'll spare you those details, but once our decision was made we felt good about it. Well as good as you possibly can knowing you are putting your small child on drugs that alter the chemicals in his brain.

So it was a slow introduction. A very small dose the first week followed by increasing increments over four weeks, watching for both benefits and side effects. I'll start first by saying the side effects have been negligible, if at all, so we've felt confident to continue. The benefits however, were not quite as obvious to spot at first.

If you asked me what I saw at home in the way of changes, I'd say very little. His self feeding was always pretty good and in terms of other self care and mobility, he still needs a lot of help. Because we have been so busy at home lately I haven't done a lot of fine motor stuff with him so have had no real measuring stick for improvement. His EA however, had a different story from school. She has been updating me all along, but when I saw it in print (I requested an email to show the neurologist her findings) I was pretty stunned to see it all laid out:

"He has less uncontrolled jerky movements than when we first started kindergarten. With almost all fine motor activities I have noticed that he has far more control. So when writing or tracing letters he can now complete a full letter or tracing before his arm jerks away. At the beginning of the year I would support his elbow and restrict allowable movement but I am able to stabilize the paper only and he is doing this independently with only his arm straps. He is also able to keep his tracing within two lines without assistance for the width of a sheet of paper. Coloring and drawing has also improved.

His right hand also seems far more flexible with reduced contractions. He is now able to bring it across his body and forward to push desired objects for his left hand to reach. At first his right hand was often contracted backwards when he was engaged in any activities. He can also reach his right hand into the sink for hand washing with little or no assistance.

I have noticed more core stability than before meds. I find that I can provide minimal support while sitting at the carpet, criss cross, and he is able to stabilize for far longer than he did before the meds. Today, it was about 20 secs. after yoga in the afternoon which I felt was great as it is end of week and afternoon. He seems far less "wobbly" and able to maintain a more typical sitting position. Also when we are doing any standing in the classroom I have found that I need to support his upper torso less than before. He is better able to support his upper torso with only hip and leg (straightening) support.

He is also able to receive and hold onto objects better in his left hand. From peers during play activities as well as holding work while heading to a table for completion."

So I'd say there's no arguing that she sees some substantial changes in him??! And if her words weren't enough - how about some photographic evidence from school:

Exhibit A: Pre-printing

At the start of the year with his EA holding his arm at the elbow

On medication, with no support besides neoprene armstraps and his EA holding his paper still

Exhibit B - Printing letters

At the start of the year, with his EA holding his arm at the elbow

On medication, with no support besides neoprene armstraps and his EA holding his paper still

Isn't that remarkable?! I am so proud of him and amazed by the improvements!! Now truth be told, I really wish we could see more practical changes at home too (although I did just see him complete a puzzle completely on his own (no one holding the puzzle, supporting his arm, and no arm straps on) which he's never been able to do before).  Buuuut, and this is an important but, if the quality of his school work improves that is a big and important gain. Not because I am remotely concerned about how he is fairing at school - but because I am concerned about how much physical effort it takes him to complete tasks. If medication can help him to exude less effort while creating the same, or ideally improved, output, then that is a HUGE win.

We saw the neurologist Friday and we now have a three month prescription for a slightly higher dose. As from the beginning, if we see side effects we will cut the dose or take him off it all together but at this point there is no reason to think that's going to happen. And at every appointment we will re-evaluate how we want to go forward.

But for now, these small changes are really big. Huge in fact. 

Next up botox. But that's a whole other post. 


  1. Awesome. So did you end up going with the Baclofen or the Sinemet? I've heard of Baclofen being used in people with CP, but never Sinemet...fascinating! I guess it makes sense that Sinemet might be effective because of his dystonia.

    I loved seeing the before/after pictures....the difference is like night and day! Here's hoping that you continue to see positive changes and that you start seeing more improvements at home. :)

    Always rooting for you and your family! x

  2. Holy smokes Tracey. That is fantastic news!

    So cool that you were able to actually document his progress with the fine motor stuff at school. Wouldn't it be great to get the Victoria Neurologist and maybe your OT / PT to help you track a few outcome measures too and actually be able to add to the anecdotal medical research evidence out there? They might have some functional measures to help you track changes at home too :)

    Thanks so much for sharing your story and THANK YOU ASHER for your courage and perseverence in "going for it"!


  3. I can really empathise with what a huge decision it is. Xxx his hand control seems much better from what you have shown xx Coop as you know was taking artane which is similar and I remember him suddenly being able to press a button in one hit rather than swiping five times. One thing I think is that with more control new skills can be learnt and cemented if that makes sense? It made Coops standing so much more stable and six months later he's up to 50 independent steps. Xx much love you you all xxx