It didn’t take very long to find out that conventional therapy has a pretty grim outlook on the potential for recovery from perinatal stroke. Makes sense, as 1 hour per week with a therapist, especially for a reserved baby who doesn’t particularly care for strangers (such as the therapist), is not going to accomplish a lot. With a bit of research, the first alternative (or cutting edge) therapy I encountered was constraint-induced movement therapy.
Constraint Induced Movement Therapy (CIMT)
Constraint induced movement therapy has its origins from Dr. Edward Taub’s work with monkeys in the early 1980’s. He showed that monkeys with neurological injuries could show some recovery when forced to use their impaired limb – which he termed constraint-induced movement therapy. After his work with monkeys, Dr. Taub moved to Birmingham, Alabama in the late 1980’s and began to focus on stroke recovery. Dr. Taub and his team made great gains in the field of neuroplasticity, and his therapy, shortened to CIMT, has been increasingly used on adult and pediatric stroke victims.
Ever since I read about Dr. Taub in The Brain That Changes Itself by Dr. Norman Doidge (a great read for neuroplasticity, btw), I wanted to take E to Alabama for CIMT.
In the meantime, however, we convinced E’s PT and OT to help us apply a splint and do some at home modified CIMT (mCIMT). Here is what we have done:
6 months – several hours a day for 3 weeks, then off and on to 12 months – we used a tensor bandage to wrap up E’s unaffected arm for eating and play. She tolerated this surprisingly well and retrospectively I wish we would have done WAY more. mCIMT helped her to be more aware of her right arm and hand, which she sometimes ignored.
9 months – 133 hours of splint-on time over 3 weeks (about 6.5 hours a day). We had E’s therapists make her a resting hand splint for her unaffected side, that we velcroed on and put a sock over. Again this was really well tolerated and I wish we would have done more. It is really scary, though, when you want to try something but the therapists and neurologists are saying “you have to be very careful that you don’t negatively affect the development of her other side…long term side effects are unknown…”. mCIMT helped her to be more aware of her right arm and hand again.
18 months – 84 hours of splint-on time over 3 weeks (average 4 hr/day) – E really started to fight the splint going back on this time. It was difficult to do any actual “therapeutic” activity and E would just refuse to eat, or play. This was a really tough stage and we didn’t do much therapy for a while. mCIMT did help with the right sided neglect, which had been worsening slowly over time.
22 months – 45 hours of splint-on time in 3 weeks (just over 2 hrs a day) – We decided to try modified CIMT again… Our OT kindly got special permission and organized a constraint camp. Only 2 other kids signed up, and one dropped out after the first day! Constraint therapy is not for the faint of heart I suppose. E liked the camp (1.75 hours with an OT and assistant twice a week for 3 weeks), but hated getting the splint put on, cried much of the time, and was pretty miserable with the loss of her “playing” hand… mCIMT didn’t do much for us at this time, as she was just too miserable….
3 years – It took a year for me to get enough courage to try CIMT again. This time, we went for the full meal deal – cast on 24/7 for 26 days. And…. it was AWESOME!!! The first day is a bit of a bummer when they realize you aren’t going to take the cast off, but then… acceptance! Yes, there were many of her favorite toys that she just didn’t play with because it was just too hard with Mr. Right Hand. But we were able to make some great gains in awareness and movement in E’s right arm and hand, which she had been neglecting a lot in the past year while she focusing her energies on learning to walk. The gains we saw were mostly from passive constraint, or “forced use” – E just went about her day and I assisted her to do what she wanted to do. One thing we did start was an hour of iPad time for Righty while lefty is casted, every single day. E was just barely able to use her pinky to play iPad games, the other fingers not at all. It was pretty frustrating, but she persisted.
3.5 years – We did another round of at home 24/7 constraint (forced use) for 22 days. Again, not too much actual “therapy”, but going around her day wearing a cast… We noticed a lot of carryover from July and again, after the first day, the cast was No Big Deal!!! By now, E was pretty good at doing iPad with her right pinky, so we started wrapping her other fingers down with stretchy wrap and forcing Pointer to do iPad. Again, this was very very difficult for her at first.
3.5 years – We did it! With some generous help from our family, we were able to go to Birmingham, Alabama for constraint therapy. This was 17 days of 24/7 long-arm casting, with intensive OT 3.5 hours a day, 4 days a week, for 3 weeks. (We did Children’s of Alabama program, headed by Dr. Taub. There is also an offshoot there that does 6 hours of OT, 5 days a week, for 4 weeks, called ACQUIREc.) The program was very…intense…and I can’t imagine E doing the longer program !?! at this age (and she has a long attention span!). It involved a lot of sitting at a desk and doing repetitive games with Tricky Mr. Right Hand. Towards the end of the therapy we saw the emergence of – Supination (turning her hand palm up)!!!! Pinching!!!! Wrist Extension!!!! Three extremely difficult movements for E. We stayed at the Ronald McDonald House, which was absolutely fantastic. We all got the Norwalk virus, bad sinus colds, and eye infections, which was not so fantastic.
Yes, Dr. Taub himself. How cool is that?!?
Since our return home, we have continued on with an hour a day of iPad for Rt Pointer, as well as trying to do shaping (supination, wrist extension, pinching) daily. We have seen some amazing progress, including just in the last two weeks – E is able to pinch and feed herself popcorn twists, and today, hold a lollipop to lick (all with the help of the wonderful stretchy wrap!).
Obviously, we are huge believers in CIMT.
IN HINDSIGHT: I’m not sure if you want my advice or not, but if you do here goes 🙂 In my opinion, the best opportunity for functional skill development in the affected side comes in the first 4-6 years of life. [Apparently in puberty there is another brain growth spurt which offers functional opportunities, but we haven’t gotten there quite yet :)]
I would personally do as much CIMT as possible from 3 months old (or diagnosis, if later) until age 6. Like, even half or 75% of awake time. As much as your child will tolerate. See how it goes, and you can always tone it down if concerns develop. Will your child delay the development of their less affected side? Maybe, but that wouldn’t be a concern for me unless it was a marked underdevelopment. Your child will be highly motivated to use that side so I believe it would still easily surpass the ability of the affected side by the age of 4-6. On the other hand, your child will become less and less motivated to use their affected side the more they become aware that it is “tricky”. It is *far* easier to wire things correctly the first time, to lay down correct / workable pathways, than to change or correct them later on. Focus on awareness and patterning correct movements as much as possible. Effort put in in these early years will pay off for your child’s entire lifetime.
I would also recommend to take it SLOW. I know it’s tempting to push the milestones, like skipping crawling for instance and aiming for walking, but each developmental step lays down a proper foundation. If you rush a step the foundation won’t be as solid, and this can backfire in the long run.
Around age 4-6 functional ability seems to plateau and small gains take an awful lot of time and effort. At around the same age, your child will likely become more self-conscious. This combination makes therapy more difficult. We found that choosing therapeutic “regular kid” things at this point made for a more well-balanced family life.
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.
“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)