We have known about Dean’s stroke since before birth. We are constantly taking him to appointments and therapies, stretching and working on things at home, doing swim lessons, and just about anything we think will help his hemiparesis. Even after all of this there are some days where I feel like we should be doing more. Luckily, I am part of a group called CHASA (Children’s Hemiplegia and Stroke Association), I get endless information and resources from their website and Facebook group. One afternoon, when I felt like we just weren’t doing enough, I came across a post about constraint induced movement therapy (CIMT). Now I’m pretty sure I had no idea what CIMT was but clearly if you read it on the internet it’s a good idea, right?
The idea behind CIMT is that it attempts to promote hand function by using intensive practice using the affected hand while restraining the less affected hand and arm. It’s used in neurological conditions such as stroke, traumatic brain injury, and multiple sclerosis. Ideally it will increase the child’s skills and everyday use of the impaired (weaker) upper extremity. Luckily for us The Ohio State University is offering a trial called Baby CHAMP (Children with Hemiparesis Arm and Movement Project). It is CIMT aimed at children 6 to 24 months old. The study lasts 4 weeks and includes 3 hours of therapy a day (Monday-Friday), plus 45 minutes of therapy a day with the parent. Because it is a trial there are 3 groups and you are assigned to one at random. The first group wears no constraint, the next wears a splint that is wrapped on just during therapy, and the final group wears an arm cast for all 4 weeks. The criteria for the study are 1) age 2) Cerebral Palsy 3) hemiparesis 4) can communicate basic needs and 5) have a parent who is willing to participate. It sounds cheesy but while reading I knew this was exactly the right program for Dean, he met all the criteria. Next step was getting accepted.
A month after reading we were driving the 2 hours to Columbus to meet with the director of the study, Amy. Ryan and I went in as a team, we were a bit apprehensive. How would we make this work for 4 weeks? Could I actually live alone with Dean that long? What about work? Is 3 hours of therapy too much for such a little guy? Would we even see any results? After speaking to Amy she made us feel completely comfortable. Dean would be able to rest, eat, and take breaks as necessary. The therapy would be “in home” so he would be comfortable. We could do it in June after school got out and before our planned vacation. She also mentioned staying at The Ronald McDonald House to help keep the cost down. Again, everything just felt right. It was a trial but every child got treatment, we decided Dean would benefit from the 3 hours of therapy a day. Our only worry was the casting group. No way did I want to live with a one year old whose best limb was in a permanent cast. But that was only 1 out of 3 groups, the odds were definitely in our favor.
The end of May we went in for Dean’s assessment. The first step was using an Ace bandage to constrain him to a chair while they monitored his arm movement, which was virtually nothing on his affected side. Next, he completed some basic tasks while sitting at a table, again to see how he used his affected side. Let’s just say Dean wasn’t a fan, of any of it. At this assessment I found out Dean was in the casting group. Not going to lie, I took it pretty bad, like crying in the parking lot bad. I was already leaving my husband and moving to a new city with a one year old. Deep down, or maybe it wasn’t so deep at this point, I was worried about me. Worried I wasn’t strong enough to do all this. I couldn’t picture putting a cast on him and it going smooth. I know how much he loves eating, scooting, using his walker, and playing with wheels. I just didn’t see any of that happening with a cast. I honestly thought about just quitting the study before it even started.
It took a few days but I remembered why I was doing this. I am trying to give my child every chance to succeed, even if that meant taking me out of my comfort zone. Mid June we left for Ronald McDonald House in Columbus (RMHC). Ryan was able to come the first night which made everything better. The next day we started therapy and Dean got his cast. Andy came and made the cast right in the room. I made Ryan hold Dean so I wouldn’t be the bad guy. It actually went really smooth. He watched a show while Any made the cast and start to finish it only took like 20 minutes. He had Dean hold a ping pong ball and casted around his fingers so he was not able to use them. It also went a couple inches past his elbow keeping his arm bent. The cast was made so we could remove it once a week and make sure it wasn’t rubbing or causing any pain.
Week 1 we tried to get into a routine. The therapist came to RMHC which was super nice for us. We woke up around 7:30 and she met us at breakfast at 8 am. Dean was feeding himself with his left hand so with it casted it was like having an infant again. We worked on setting the food on the top of his hand and him raising it to his mouth. Multiple therapist have described Dean as “food motivated,” I’m pretty sure he gets that from me. Other than eating all the therapist worked on was getting him to try and touch stuff with his right hand, this was exhausting for him. Dean is my binky boy, trying to sleep with a cast and not being able to grab his binky made for sleepless nights for both of us. It was a rough week without a lot of improvement. Week 2 started off about the same. We started giving him a fork and putting food on it. He was able to move it to his mouth, we were all pretty excited. We worked on him using his hand to pop bubbles and hold onto things. We also introduced some iPad games he was really into. It was nice to start seeing some results. By week 3 he was a master at popping bubbles. He started to really reach with his arm too. They introduced peg puzzles and he was able to pull off the pieces. He was playing with toys with his right hand and even trying to brush his teeth. Sleep still wasn’t the greatest but we really enjoyed seeing the week 3 results. The last 3 days of therapy the cast came off for bimanual therapy. When it came off he kept touching things, I don’t think he could fathom that he finally had his arm back. The therapist worked on activities using both hands. He would stack with his left hand and knock over blocks with his right. Pull off puzzle pieces with his right and put them back with the left. He loved playing in the sensory bin full of beans with both hands.
Throughout the process I was constantly being asked if Dean had broken his arm. At first I felt so empowered about spreading the message that he had a stroke. Seeing a little boy with an AFO and an arm cast is so out of the ordinary I understand why people have questions but it was exhausting and by the end I sometimes felt like just agreeing when they thought it was broken. I felt like people judged and thought of me as a bad parent for letting my 1 year old break his am. Plus, being a typical little boy he would bang it on everything, hard too. This makes for a pretty funny situation when everyone already thinks its broken.
When we started this it was black and white, Dean would either use or continue to not use his right hand. We were so wrong! Dean found a gray area, where his right hand could help him do certain things while his left hand remained dominant. We were excited for the results. He is opening his hand much more now and able to stretch his arm out. While he has regressed a bit since the cast came off, he can still do the things he practiced. It is almost like he is programmed to do certain things with his right hand. He plays on the iPad, turns book pages, pulls off puzzle pieces, and will generally try anything with his right hand if we say “let righty have a turn” or “righty do it.” It was a great program and I feel so lucky to have been a part of it. Cleveland Clinic offers almost an identical program for children ages 2 and older so we plan on doing it again next year, through our private insurance.
I want to take a second to talk about how great Ronald McDonald house was. There are many charities that donate their time and funds to feeding the guests 3 meals a day. The house is very clean with nice sized rooms. They have many common rooms that worked great for our therapy. There is a media room, toy rooms, gym, laundry, and a great back yard with a playground and splash pad. If you ever get a chance to donate time or supplies to your local RMHC please do. Following them on Facebook is a good way to see what they need. There is so much to do in Columbus which helped us passed time when Dean wasn’t sleeping or doing therapy. Our two favorites were the zoo and COSI museum. Both of which the RMHC gave us passes to. We were lucky enough to have my mom and friends come and between the visitors and the house we were able to get through the month.
I’ll share the link in case anyone is interested. I know University of Virginia and Virginia Tech also offer the study. We contacted Christopher Brown, his information is at the bottom of the link. Also, feel free to message me with any questions. I will also post some videos of his therapy on my Instagram @theabilitymom.