Optimizing Outcomes
      Breakthrough to a Cure  
Sign Up For News & Updates!   Click Here
Home | Donate |About Us | Discussion Group | Treatments and Research | Current Treatments | The Bright Project | Advocacy and Education | For the Professional | News | Case Studies | Contact Us | Advisory Panel | Search
Case Study - Corbyn

This is the story of a parents quest to help their daughter.  We hope to create a discussion about what has worked and what has failed.  Our goal is to help others and give us new ideas for helping.   Professional opinions welcome. 

We are formally seeking professional input to this case study.   We would be glad to provide more information to anyone interested in conversing.  We can be reached c/o the bright foundation maplg@ourpostbox.com  

Discuss this case study:

Below is a great article written on Corbyn in the Tampa Tribune. It is a good summary of Corbyn's story.  It is a good place to start.   The pictures were taken on Dec. 7, 2001 when Corbyn carried the Olympic Torch.  

Corbyn's Story


Below is the text from a recent post to the Hemi-Kids e-mail group.  It was in response to another mother's question about Constraint Induced movement therapy, otherwise known as CI.  CI was largely developed by researcher Dr. Ed Taub.  Dr. Taub is a member of the BRIGHT Foundation's Scientific Advisory Board.  More can be learned about Dr. Taub's work and CI in the "Treatments and Research" section of the website.  


I think that Corbyn, my 13 yo daughter, is the only child on the list to have "true" constraint induced movement therapy as created by Ed Taub in Alabama. There are others out there doing "modified" CI therapy but there are fundamental differences. The others are primarily restraining the unaffected limb and calling it "CI." There is nothing wrong with the restraint treatment, however it is not really CI movement therapy which requires massed practice (6 hours of treatment per day and use of the restraint for 90% of all waking hours) and the use of shaping as a behavioral modification technique.

CIMT has 2 basic premises: 1) learned non-use and 2) cortical reorganization. Taub states that following a brain injury, the individual learns that the unaffected limb is much better at performing tasks than the hemiparetic limb. And that attempts to use the affected limb are usually met with failure or embarrassment or other negative feeling/emotion/event.

As a result, the person gradually stops using the impaired limb and relies on the intact limb. = learned non-use. Side note...This non-use becomes a self-fulfilling prophecy as the less you use it, the worse it gets. Taub also believes that the brain can be rewired so that it can learn to move the affected limb again, but that this takes a great deal of repetition. There are numerous research studies out there that validate this cortical reorganization theory. Of course, how much repetition is required to create a change and then MAINTAIN the change, has not been documented. We know that Taub's way works with adults. However, there haven't been studies completed on children. There are 3 published studies on various types of "restraint" therapy with kids, all case studies. They indicate an improvement in affected limb use in the short run, but none of the studies did any follow-up.

Based on my research, a 2-day course on CIMT, and email communication with CIMT experts around the world, we were convinced that CIMT was well worth trying with Corbyn. I am not one to jump on every bandwagon or to do stuff just b/c one person said it was good. It took me over 6-months of aggressive investigation before we decided to go forward with this.

Long story short...we took Corbyn to Germany for 5 wks in Feb 2001 to receive CIMT. CIMT is not available in it's true form in the US except for research studies, which would have gladly participated in, but Corbyn was not eligible for one reason or another (e.g., not running subjects her age, inability to have fMRI due to aneurysm clip). So, I found a clinic in Germany that would take cash for the treatment. The therapist was trained by Ed Taub in the US and came highly recommended. I think you can find the daily emails we sent while we were in Germany (I forwarded them to Nancy who then posted them to the list) in the archives. If you can't find them and are interested in reading them, please feel free to email me privately and I'll dig them up for you.

Again, long story short...Corbyn made outstanding progress. She was able to move her arm/hand/fingers in ways she was never able to do....not even with 9 1/2 years of biweekly or triweekly OT (she got PT too but of course OT focused on the upper extremity). Not only did the function improve, but Corbyn began using the arm and hand during every day activities...something she NEVER did prior to the treatment. More importantly, Corbyn's attitude about herself, her abilities, and her body changed immensely too...for the better!

Sounds great??? Well it was...but that's not the whole story. It has almost been about 10-months since the treatment ended and Corbyn is NOT using her hand the same way as she was when she first returned from treatment. She has kept the movements she gained...the supination, thumb abduction, deliberate finger grasp and release, etc. Corbyn has also continued to think positively of herself and her arm (great benefit).

However, she does not use the hand as much as she did when we first came back. I have retested her at 3-months post treatment and again at 9-months post treatment. Her hand use (quantity and quality of movement) is no longer statistically different from pretreatment on the measures used.

Why is this?? Why is she so different from the reported follow-up data on the adults?? I give you my theory (currently in the process of being written up for publication)...it is one of "regression to the mean." I'll try to explain what that means (no pun intended)......The adults, over time, went back to their "old" or "normal" way of doing things...which is using BOTH hands to do things. The adults had 18-60 years of NORMAL bilateral hand use prior to their strokes. When the learned non-use was reduced and the cortical reorganization allowed for improved use of the limb, the adults were excited and motivated to get back to "how they were." So, over time, they continued to use the arm and with use, it continued to get better.

This is regression to the mean.

Our children do not follow this pattern... Most of our kids, and I apologize to those of who whose children had use and then lost it, NEVER had "normal" bilateral hand use. Most of our kids suffered their strokes/brain injuries prenatally or very early in their lives. As a result, their brains NEVER learned bilateral use. So, when a child undergoes CIMT, yes, the learned non-use is reduced, yes, the cortical reorganization occurs ...BUT over time, they regress to the mean (as the adults do). BUT..the child's "mean" is unilateral hand use, so they regress to that. The children do not have the motor programs for bilateral use, they don't have the previous knowledge to draw upon (unlike the adults). So it is different...very different.

I propose that it is particularly different for children, like Corbyn, who are functional with only one hand. There is NO motivation, no reason, no previously learned knowledge to draw upon. Corbyn does everything independently...with one hand. She is extremely talented with that hand...does things with her hand that my dominant hand would never be able to accomplish independently (without massed practice :) ). So it is different.

Why the long story (I apologize...this is my passion now...I am starting a CIMT program at the hospital I work in, I am writing the article for publication, etc.)??

I write the long story because I want you all to be aware that our kids are not miniature adults. What works for the adult population may not be appropriate for our kids (granted a case study is NOT a randomized blind research study...but no one else has published data with CIMT and kids to date....at least my most recent literary search still turns up nothing...if anyone knows something I don't...please let me know!!!).

Just be cautious. If your child likes playing a game with the restraint (PB&J game...great idea..what a creative therapist!!!), then go for it! It certainly can't hurt, but I would be willing to bet that it won't make significant long-term improvements in day-to-day hand use. That's not to say that it won't cause an improvement in some area of hand/arm use...b/c it should...just like traditional OT. I do wonder if this is done at a young age...and is continued over the child's early life and on...would that make a difference in long-term outcome????

If, on the other hand, your child is upset with the restraint, or a child is old enough to make a choice and says, "no," then I'd listen to the child.

There is no research to support the technique with kids like ours. It's not worth pushing the issue. Corbyn wanted to go to Germany and try the therapy. She was all for it. It was a TON of work for her. She was exhausted at the end of the day. Corbyn says it was worth it. I believe it was worth it. But it is NOT a miracle cure.



Day By Day Account of Our CI Treatment in  Germany:

The link for the pictures is: . http://photos.yahoo.com/rpping

The days will correspond to days we spent receiving some type of treatment.

Day 1 (the day we arrived after the overnight flight):

After the tour, we went back to the apartment to unpack and sleep. I kept getting this really dizzy, weird feeling and had to sleep. After a 1 ½ hour nap, we woke up, ate, and went back to the clinic for Corbyn’s first "day."

Sabine checked her arm and hand movement (active), had her do a few things (staple, pull in a chair, peel and eat an orange) using her R hand and/or both hands. Corbyn did a great job. She never said NO or I can’t..she just did as she was asked and was smiling and having a good time. I was surprised when she was able to peel the orange (see pictures). She did a wunderbar (wonderful) job!! At one point, we had to go to the children’s house to get a helmet (one of Corbyn’s goals..fastening it with both hands). All of the children were friendly and interested in talking to Corbyn. Again, though…we understood nothing.

Day 2

Today we had our first day of formal treatment (pictures were added to "therapy" link). We started at 9am. Sabine first gave Corbyn a test called the Motor Activity Log (essentially a questionnaire that documents the amount of use of the affected limb and has the person rate its difficulty level). When the test was finished, we went to see Dr. med. Arne Voss, the head physician at the clinic. He did a complete case history and physical. It was funny b/c I told him that Corbyn’s hearing was fine and she reported difficulty hearing in the R ear…then it occurred to me that she was still blocked from the plane ride as the ear was infected when we flew. The Dr. was really nice and spoke English well (although he didn’t think so). When we finished with the Dr., we went to see the PT (head of the PT department-Ms. Susanna Freivogel). She completed some motor testing and rated Corbyn on the Ashworth scale. She was quite impressed with the difference in Corbyn’s gait with the AFO in place (just an aside).

Then, it was lunchtime. We headed off to the cafeteria at the clinic and had our first experience with a German salad bar and ordering food…without Sauerkraut and stuff we don’t like. Aaron and Ryan ate brats (nice familiar WI food) and Corbyn ate cannelloni. I opted to eat Corbyn’s salad (no dressing) and her left over cannelloni. Sabine came with us to eat so we felt a bit more comfortable. Now when we walk around, we hear the patients (mostly teenagers) saying *****Amerikaner****. Of course, we don’t understand most of what the say, but we understand the American/English statements. Most of the ppl at the clinic are friendly, though.

After lunch, we continued with testing. Aaron and Ryan decided to stay in the other "house" and play tische kiker (foosball) and tische tenis (ping-pong) while Corb and I headed off to do the Wolf Motor Function Test. This test is done with both the left and right arms and measures speed and quality of movement during various tasks (e.g., sliding a weight off the table, lifting a weighted basket, picking up a paperclip, flipping over cards, stacking checkers, etc.). Of course, Corbyn had no problem doing any of the tasks with her L arm and as rated as 5 (perfect/normal movement) on all tasks. On the R side though, there were a few things she couldn’t do (stack checkers and pick up a full soda can and place it on top of a box) but she really did quite well. I was thrilled when she picked up the paperclip and when she successfully flipped 3 playing cards over.

The final test we did was a finger-tapping test. This was a test that measured how many times Corbyn could use an isolated finger/thumb to press the space bar on the computer. With her L hand, Corbyn tapped the bar 75-87 times depending on finger (pinky (D5) < index (D2)). With the R hand, Corbyn only successfully used her pointer and middle finger on the first try (20 taps). But, on the 2nd attempt, she was able to do all of the fingers and thumb. This was a difficult task for Corbyn and for us (Sabine and me) as we had to try to prevent any movement in her shoulder or arm (normal compensatory movements for Corbyn) and try to position the key board and Corbyn’s hand so that she could hit the space bar with the target finger only.

By the time this was done, everyone was exhausted…except the boys who were off playing checkers and other games. Sabine took us to the administration building so we could pay for our treatment. This took nearly 45-mins as we had to sign WAY TOO MANY travelers cheques. They were laughing at us..but we brought the largest denominations the bank had! It wasn’t our fault!

Day 3 2/13/01 (pictures were added to the therapy album on the link)

Today we began therapy at 9:00. Corbyn did an absolutely incredible job. She worked and worked and worked and didn’t complain. She willingly attempted every task and tried to better her score (the number of pegs she removed in 30 seconds). Corbyn surprised the therapist, me, and even herself with the stuff that she was able to do with her right hand.

Lunch took 1 hour and 10 minutes to eat, but Corbyn did it with her right hand. Today she was able to hold the fork/spoon without dropping it as it reached her mouth. She still needed assist to turn her wrist to stab the food and get it into her mouth after she lifted it to the level of her chin. Drinking posed a greater challenge. The cortical representation for the control of her R hand is clearly smeared with the motor control of other body parts. In other words, when Corbyn goes to do something with another body part, her R hand does the same thing. For example, when trying to drink, Corbyn would open her mouth as the glass neared her face and the hand would immediately open as well. We had to train her to keep her hand closed even when she opened her mouth…very interesting!! (A great example of the cortical reorganization that has been proven with this treatment technique).

Corbyn’s attitude is amazing as well. For the behavioral contract, she had to say things she WOULD do with her R hand at home…she kept saying, "of course I can do that" or something similar to that. She is very cooperative ..even with me. I couldn’t have hoped for a better performance. Even Sabine was thrilled with the progress she made in one day. Eating dinner only took 45-minutes (so a significant improvement in completion time).

At home, she is still required to wear the sling (scarf for today as the splint and real sling won’t be ready until tomorrow) 80-90% of all waking hours. She is permitted to remove it when a) water is involved (e.g., showering, going to the bathroom, etc), b) in dangerous situations (e.g.. walking on the side of a mountain), and c) when she is doing things that REQUIRE bilateral arm use (e.g., dressing, carrying large objects, writing, drawing, playing GameBoy, etc.). Corbyn is encouraged to use both hands equally during these tasks and we are trying to limit the amt of time spent doing any bilateral tasks. L handed tasks and bilateral tasks promote the cortical smearing that we are trying to eliminate.

After dinner we all played the board game "Sorry." Corbyn turned over the playing cards and moved her pieces using the R hand. It certainly took a lot longer, but she was very proud of herself for being able to do it. I must also give Aaron some congratulations as he encourages Corbyn to use her R hand and doesn’t get upset over the extra time or the funny positioning of her fingers…he just tells her "wow, you did it" or "I didn’t think you’d get that..that was great." I was shocked at his supportive behavior at first but am very thankful that he is helping instead of trying to tease or be a typical 7 yr. old irritating his sister.

If Corbyn continues at the rate at which she worked today, we will be more successful than I could have imagined. Keep us in your thoughts!

Day 4

Today we started tx at 8am. Corbyn and I left the boys at home, asleep. We walked to the clinic as we always do but it was colder as we left an hour earlier.

Today was a day of firsts:

At 8:45am, Corbyn turned her wrist independently for the first time in her life.

At 8:50am, Corbyn grabbed a small object with her thumb and pointer finger (pinscher grasp) for the first time in her life.

At 9:30 am, Corbyn held the small medicine glass independently and drank from it without assistance (after holding the glass in the air for her to grab).

At 9:35 am, Corbyn moved her forearm without moving her elbow or other parts of her body.

the afternoon, she wrote her name, cut paper, and stapled using her R hand. All of these things she would never have even attempted prior to this training. Now the writing was a bit messy, but she was able to hold on to the pencil and made legible letters. For cutting, she used a regular scissors but had to have them supported a bit by the therapist. But…her fingers opened and closed WHEN she wanted them to and moved independent of her other hand. Also they moved quickly…a movement necessary for many every day tasks. For the stapling, at first she had great difficulty getting enough force to staple. In only 1-minute of practice, she was able to staple with ease! She put some 20 staples in a piece of paper in less than 20-seconds.

As I type, Corbyn is sitting on the bed brushing her hair with her R hand. She is watching cartoons (an American show dubbed in German) and periodically she raises her R hand and takes a few more passes at her hair. She has held the brush in that hand for at least 10-mins now.

Kinda a first….Corbyn ate lunch today in 35 minutes instead of the 65 minutes it took her yesterday.

I asked the therapist if Corbyn’s progress was typical as I thought she was doing far better than I expected. As I thought, Sabine said that Corbyn was making outstanding progress and that most ppl don’t do this well this quickly. Sabine felt that it was Corbyn’s wonderful attitude, the intrinsic motivation she derived from her successes, and her willingness to work and try new things.

I asked Corbyn what she thought about her hand…she said, "WOW!!!" I guess that says it all!

Corbyn still has not complained. She smiles during therapy and loves it when she can do something new. At dinner tonight, she still needed help but did not get irritated or upset when the food fell off of the fork. I am amazed at my daughter. She is braver than brave and the hardest working kid I’ve ever seen.

I must say that Sabine has a lot to do with Corbyn’s happiness in therapy. Sabine is wonderful …a thinking, brilliant clinician who thoroughly understands the treatment, but more importantly understands children and how to get them to work in a fun, yet therapeutic fashion (and age appropriate). Other patients have come up to us in the dining room (TBI at that) to tell us how much they miss Sabine working with them (Sabine is not treating anyone else but Corbyn these 3 weeks). Others have told Sabine they are angry with her for not seeing them…obviously they love working with her too.

The last thing on this topic for today…a warning/heads-up for anyone thinking about doing this treatment...this is also very hard work for the family members of the person undergoing CI therapy. Corbyn is now dependent on others (mostly me) for help with …well…really everything (except going to the bathroom as she can take off the splint). I am exhausted by the time I come home from watching her struggle, helping her eat, and worrying about her. Then when we get home, it is more of the same…helping her get out her notebook and helping her turn the pages…helping her play board games… helping her eat/drink…helping her get ready for bed…etc…You have to be available all of the time…and I am more than happy to do so. I just didn’t realize in advance how draining it would be. Ryan and Aaron are also helping. Aaron helps her play games on the computer and they also spent time looking up German words (found on a Pokemon sticker) to translate them into English.

Day 5

Today tx started at 8am again so we were done by 3pm.

Today was not nearly as exciting as yesterday…but everyday can’t be a day of firsts/making tremendous gains. She maintained all that she learned yesterday, but became frustrated (I shouldn’t have said anything yesterday…LOL) when the hand/arm didn’t do EXACTLY AS SHE WANTED. Of course, the stakes have been raised and the quality of Corbyn’s movement is being targeted now. In other words, when she picks up a block, it can’t just be picked up and put where it goes, it has to be with her wrist straight, without body movement, lifting just her arm (or lower arm if that is the goal), etc. Obviously, this is much harder to do. Corbyn is always asking about her % correct or what "grade" she got on the task. Hmmmm she sounds like some other ppl I know really well.

She also had a lot of difficulty prevent her mouth/L hand from moving when she was trying to work the R. Unfortunately, the undifferentiated control in her brain caused her to open her hand again when she opened her mouth. Of course, this happened towards the end of tx. I should say that Corbyn really begins tx at 7am when she’s required to be splinted and brush her hair and eat. Although she doesn’t have tx at 12 noon due to lunch, Sabine eats with us and Corbyn is required to do all the eating and drinking with her R hand (sounds like more tx to me). Then when tx is over, Corbyn still has to do everything with her R hand. So at this point, I think Corbyn is over the "novelty" of the R hand doing things and would rather go back to the easy way. Luckily, she is a hard worker and won’t give up.

I do hope tomorrow has some big thrill for her…

Day 6

Today tx started at 9am … we started to walk to the clinic but the ice on the sidewalks seemed a bit dangerous for Corbyn so we got a ride in.

Thank goodness today was exciting for Corbyn. She was able to use a tripod grasp (thumb and pointer and middle fingers) to pick up things. She needed a little help initially getting into position (slight pressure on her palm), but was able to maintain the position long enough for Sabine to thread through a string. Corbyn actually had to continue holding the block and move it along the length of the string without dropping it. Eventually she also got the pincer grasp and did the same thing. Corbyn was thrilled with the progress.

Corbyn was also able to volitionally abduct her thumb to a neutral position. For those not familiar with spasticity patterns…typically, the thumb is held in towards the palm and can not be brought out to the side of the hand (abduction) volitionally (and actually it hardly ever occurs even accidentally). Today Corb was able to move the thumb into the proper position multiple times. It is not 100% of the time yet, but it is pretty consistent. Corb can also bring her wrist to neutral 70% of the time now too.


Day 7

What a great Monday! Corbyn rated it a 9 on her 1-10 scale. That’s the best ever. And the reason for her excitement and enthusiasm?? Well, I think it had a lot to do with her consistent ability to abduct her thumb..well really to do a ton of movement with her thumb. She was also consistently able to keep her wrist in a neutral position and able to supinate half way. Corb was so thrilled with her hand she was actually kissing it!!!!!

Corbyn practiced keeping her arm straight (going against the spastic pattern) while on a trampoline..she loved that. She also had the chance to practice keeping her hand on a bar (gymnastic goal).

Check the picture of Corb carrying the spoon..on the way to haus A (one of the tx houses), Corbyn dropped the checker 10 times. On the way back to haus D, she only dropped it 4 times. I have to add that while doing this activity, Corbyn’s gait was PERFECT. No limp, no leg swing, no hip hike…very interesting!

Day 8

Corbyn did really well again today…

She was able to externally rotate her shoulder and still hang on to objects. Her supination improved…her thumb control remained excellent…she was able to climb a ladder…it now only takes her 30-minutes to eat (vs. over an hour initially) with her R hand. She continues to have a great attitude and is a wonderful worker.

Day 9

Well this morning wasn’t so hot... Stuff that was easy for her yesterday was really hard today. And the harder she tried, the worse it got and the more frustrated she became. But the afternoon went a lot better.

The most exciting thing that happened today was that she ate lunch with only 20% assistance (making sure the food didn’t fall off the plate) AND very quickly too…not sure on the exact time but Ryan and Sabine were still eating so it must have been within "normal" limits. We are going to try a scoop dish next time. Normally she needs some help grasping the fork, stabbing or scooping the food, or something. But today she did it by herself…I am sure she could have done it without any assistance if she had the modified plate.

She was also able to put on a bike helmet (she used both hands), and fasten it without pinching her skin (she couldn’t do this consistently before). She is happy about that b/c now she doesn’t have to ask for help anymore. Actually, she was able to do it as quickly as her brother can do his..so she’s pretty fast.

Corbyn was also able to drink from a cup (sm. plastic with a handle..like a tea-cup) with appropriate finger and wrist position. She learned to do this first with an empty cup, then a single marble was added…then additional marbles were added to increase the weight of the cup (like there was a drink in it)…when that was easy, beans replaced the marbles. Beans tend to fall out easier as there are many more of them and they are lighter. Once this was easy, Corbyn practiced with water. She did great! Not only does Sabine require her to lift it properly and drink from it with good positioning, but Corbyn is also required to take it from her mouth and place it on the table with control and then remove her fingers from the handle. All of this we take for granted, but it requires much thought on Corbyn’s part to complete all of the steps without tipping over the cup or slamming it down so that the contents spray up at her.

Some more exciting news…from this evening…Corbyn ate her dinner independently (spilled a little water but who cares)!!! Corbyn also spent about an hour typing part of her story (a story that she’s writing that’s based on Star Fox64 a Nintendo game) with her R hand. She was actually having a good time and even managed to hit the shift key AND the quotation marks by herself. That required her to hold down the shift key with her ring finger and pushed the quotation marks key with her middle finger. She was also able to use the "mouse" (I can’t remember what this type of mouse is called…you use your finger to direct the cursor on the touch pad) to get to the SAVE symbol to save her work!! OH MY GOSH! I can’t believe the control she’s gaining over her fingers…she’s so awesome!!!!!!!

Day 10

As far as therapy specifics go…she didn’t have any huge gains but she did everything very well. The supination and pronation are coming along.

After watching Corbyn and seeing the other children at the clinic who underwent CI tx vs. reading the reports on CI therapy, I’ve come to a few conclusions….

  1. Both children and adults with hemi-paresis will make measurable gains during tx that will be verified on post-testing. I am positive that Corbyn will have made significant progress based on the testing.
  2. According to the literature, the adults maintain these gains for up to 2-years post-tx and it is assumed that this will be maintained past this point, it just hasn’t been measured past this point. There are no studies with children or with those injured prenatally so we don’t know the longevity of the tx effects.
  3. Children with prenatal strokes or anoxic damage that leads to hemi-paresis (often termed CP) are very different from later onset stroke/BI.
    1. Children, such as Corbyn, do not have a "LOSS" of function whereas older children/young adults/adults DO experience a loss…So, the adult has a greater motivation to regain independence and use of the impaired limb (particularly if it was the dominant hand). Corbyn experiences failures due to the hemi-paresis but it is not her dominant hand (who knows whether she would have been a righty or a lefty..it doesn’t matter now) and she has not known life any other way. She is very motivated to fix her hand…but I am doubtful that she will use her R hand or both hands for the tasks that she has already mastered (like dressing). I think she will use the hand to help WHEN she must but I don’t think that her functional use will change remarkably.
    1. The cortical smearing/reorganization in the CP kids is different (Sabine explained this to me at length) and needs to be treated differently. For example, Taub (CI "father") and David Morris (the head PT working with Taub) stress the need to prevent any bilateral tasks during CI tx. This is to facilitate reorganization of the hand and fingers to adjacent non-damaged brain tissue and/or associated cortical area on the opposite side of the brain (i.e., ipsilateral control) and to undo/prevent cortical smearing. HOWEVER, in children with the prenatal damage, there was NEVER any individual control of the impaired hand (they were too young to have learned to do anything with it). So these children tend to develop motor patterns that make use of "spill-over" motor movements from other body parts (sometimes a mirroring of the other hand or in Corbyn’s case, she always had to activate her L hand prior to being able to initiate with her R hand). So what does all this mean…well, Corbyn has to practice doing things with 2 hands in addition to the R handed tasks in order to allow the R hand to do something different from the L hand. Sabine says this is normal in these early insult kids.

Well that’s quite enough of that I think…all in all, Corbyn has made more progress with her R hand in 2 weeks than she learned in 9 years of OT and PT treatment. She now knows that the hand CAN move and do things she asks it to do. She now knows that she can control the individual fingers during some tasks. She now knows that her hand can learn to do things if she tries hard enough. And I am satisfied that I have provided my daughter with every opportunity to improve her functionality and quality of life…even if she never uses the hand again. We are all happy that we came. The experience has been unbelievable.

I know, I sound as if it’s over…it is not…it’s just I realized a few things today while watching Corbyn without the splint on and then with just the splint but no sling…the less restricted her L arm is, the more she uses it…that is not surprising but it is amazing to me how automatic it is for her to use the L hand even after HOURS and HOURS of positive reinforcement for R hand use. So, I just wonder if in the long run any of this training will have mattered….I guess only time will tell. And as I said before, I am glad that we tried…no matter what happens.

Day 11

Well Corbyn slept from 8pm until 845am and woke up in a much better mood. We had tx from 10-5 and that was a little tough with so much tx in the afternoon. Today Corbyn had more success controlling her fingers individually. She was also able to pronate easier while using internal shoulder rotation to help. Pronation without shoulder rotation was VERY difficult. Corbyn’s wrist is also under her control MOST of the time.

A funny thing…when we first started therapy, she could fit her R hand through a red ring without any difficulty. Now, she has a tough time getting her hand through there. Why…b/c her thumb stays at the side of her hand now instead of being in the flexed position inside of her palm…interesting!

Oh..Corbyn now moves her arm independent of her body. Initially, trunk movement of some sort accompanied all arm movement. Now she can move the arm in many directions without any body movement at all.

I discussed my concerns about the carryover and functional use of her hand with Susanna F. the head PT at the clinic. She agreed that these kids with the early brain damage…those without a sense of "loss of function"… will never really use the impaired hand UNTIL it becomes quicker and easier to do so. So…the recommendation… continue to do the CI therapy at home until the hand becomes more agile and its use more automatized. Corbyn is OK with that as long as I don’t go to school with her!

Day 12

Today we started therapy at 9:00. The walk to the clinic was sooooo cold! We could hardly feel our legs by the time we arrived. Sabine told us it was –8 degrees (Celsius of course). BRRRRRRRRRRRRRRRRR

Corbyn did really well with her wrist today. Lots of movement (past 0 degrees)…very controlled. She ate lunch with set-up and some min. assist (repositioning fork or plate). The supination is also really improving. So is grasping…Corbyn was able to pick up tennis balls without difficulty today. Why is that a big deal?? When therapy started, she couldn’t even come close to picking up a ball. Now she can pick up 7 tennis balls and place them in a basket in 15 seconds. That is accomplished with good thumb and wrist position too!

I didn’t get to see the afternoon therapy…I had Aaron with me so we could work on his Germany project for school. Aaron still has a lot of homework to do…I sure hope we can get it done! Ryan spent the time running errands.

Day 13

Corbyn’s morning was pretty much status quo. However, in the afternoon, I decided to ask Sabine about modifying Corbyn’s treatment approach. I wasn’t sure how she’d feel about this but thought I’d try anyway. My idea…go against Taub’s treatment approach and train bilateral tasks. I would never have thought to oppose his ideas but given that all of his work and research has been with adults (those who had function then lost it) and not with kids who relied upon 1 hand for their entire lives…I figured it was "OK." Anyway, as I’ve mentioned before, as soon as we take off the splint, Corbyn was going right back to doing everything with her L hand…so I thought we should focus on training JUST those things that she CAN’T do WITHOUT using BOTH hands. By doing this, we would give Corbyn the opportunity to practice the movements (using the shaping principals) and gain the positive experiences that come from being successful with the activity. I think that this approach has a much higher likelihood of being able to be generalized to her real world activities.

I do not think that Corbyn will realistically pick stuff up with her R hand (unless her L is busy)…so continuing to train it…now that she has gained the functioning of the hand and arm…seemed useless. (Don’t hear me wrong..I am NOT saying that all of the training to date was useless…I think it was extremely necessary in order to obtain the muscle movements…she would NEVER have learned to move her thumb volitionally or to straighten her wrist…or any of the other fine motor movements she’s learned without the traditional CI tx she completed). Now, I just think it is time to switch gears a bit and go for the things that will really require BOTH hands to work together.

Some of the things we tried today were: carrying a full laundry basket, opening jars, spreading butter on bread, pouring drinks, putting on a coat AND zipping it up, holding onto reins, etc.

Corbyn was never able to carry her clothesbasket more than a few steps without the R hand letting go. Today she carried a very heavy basket much farther than she would need to at home. She was even able to run carrying the basket…you know…very impt for those laundry emergencies! So, even though we didn’t have to train the task…it was nice to see that the benefits from the other training activities applied to this functional task (OK cog. Team members…don’t die).

She was able to do the other tasks as well. All of these things were difficult for Corbyn previously and she tended to give up and ask for help. Regarding the zipping…she was able to consistently zip her jacket independently. She has never been able to do this!

So tomorrow, Sabine and Corbyn are going to work on holding on to reins while on top of a saddle (on a swinging "horse" in the PT gym), folding clothes, carrying things and opening doors at the same time, more jar opening (depending on the size, this was difficult), more pouring, dressing with R hand assist, opening ketchup packets…umm that’s all I can remember. So, I hope that this approach will lead to continued gains and gains that will be more likely to be carried over when we come home. Additional treatment activities will include going to the store (again cog. Team…I know ) getting the items, paying, carrying the bags, etc. Sabine said Corbyn would go in and get one item, pay, leave the store, then go back in for a different item..and do it over and over and over (again the massed practice/shaping procedures)…just with highly functional things.

I told Sabine that was should write our own protocol for how to tx the kids with impairments from birth/infancy…she laughed…but who knows..maybe this will work better! I guess only time will tell.

Any of the other therapists (PT, ST, NP…whoever) out there who have anything to add or would like to comment, PLEASE feel free to do so. I’d love to hear your thoughts.

Day 14

Corbyn went to therapy from 10-5..but I wasn’t there…so no pictures or updates…except that Sabine told me Corbyn was able to carry a heavy laundry basket up 2 flights of stairs, into the next Haus, across the courtyard in the clinic, and sideways around obstacles…I guess that goal is met…LOL

She was also able to lift her arm above her head while holding objects and then release them into a container (above her head). Sabine had to go catch her bus so she wasn’t able to tell me anything else.

Corbyn ate dinner independently (after setup). She also typed more of her story with her R hand. She is still making noticeable improvements in her hand functioning.

As such, we have planned to extend our stay at the clinic.

Day 15

Corbyn had another good day at therapy. She demonstrated further improvements in her hand strength, ability to pick things up with just the tops of her fingers, and to maintain her hand and wrist neutral position, even during movement. She’s having a great time on this "make shift" horse in the PT gym. She was able to maintain excellent posture while on top of the horse and keep her hands on the "reins" in perfect form. She didn’t have any problems holding on..the reins never accidently dropped from her hand regardless of the speed or direction of the horse’s movement. Her accuracy for placing objects has also really improved.

Most importantly…Corbyn is now using both hands more consistently (when she doesn’t know she’s being watched). She is also correcting herself when she goes to use the left instead of the right. For example, she has always gone up/down stairs on the L side of the staircase in order to hold on to the rail with her L hand. Today she went to the L side, then said, "Ooops!" and went over to the R.

I think the extra week of therapy will really make a difference in Corbyn’s behavior.

Day 16 (Fri we left for Paris that night…so I didn't write the email until Monday…)

Well…where to start…after a hectic Friday afternoon (oh..therapy went well too…can’t remember any specifics though),

Day 17

While we were getting ready, Corbyn realized that tying her shoes is much easier now. She was also thrilled that she could hold a regular pencil and write with it without a build-up. Corbyn independently brushed her hair and got all of the knots out, too!

Corbyn had another wonderful day in treatment. She was able to maintain good body positioning and only move her arm during various tasks. Her supination continues to improve (less shoulder movement). She is now able to carry a saddle for a long time and place it on a bar (a task that she’s had difficulty with at home) independently. She can also carry a VERY heavy laundry basket over and around obstacles of various heights (trying to simulate the dog gates and/or dogs in our house). Corbyn was able to carry a lunch tray with both hands (not propped on the R as she did previously). Initially, the tray had to be light, but by the end of the day, she was carrying weighted trays with wobbly objects and going long distances without breaks. Grasping single objects also improved…as I said…everything continues to improve.

Now, Corbyn talks about her "bad" hand in the PAST tense and says things like, "well before my hand was working, I couldn’t do that." She now believes that with practice, her R hand can learn to do anything. She’s probably right…if she couldn’t learn to supinate after 9 ½ years of OT but learned in 1 wk of CI therapy…then I’m willing to bet we’ll get isolated finger movement if she continues to work at it.

Day 18

Corbyn made more progress in treatment today. Check out the pictures to see a great example of the "shaping" component of the CI treatment. At the beginning of tx, Corbyn was unable to pick up tennis balls. Then she was able to grasp them, but it took 15 seconds to put 3 balls into a basket. With practice, she could pick up and release 8 tennis balls into the basket. So today, she was required to place the ball on top of a small jar (on the mouth of the jar). At first, Sabine had to hold the jar so Corbyn didn’t knock it over. As expected, the number of tennis balls she could place in the 15 secs decreased (5 on the jar). Soon Corbyn was able to place the balls on the jar without any assistance. And she was up to 7 in the 15 seconds. So, then task difficulty increased again, and Corbyn was required to place the tennis balls on top of the cone.

Putting on the helmet can be done in 9 seconds now and taking it off takes 6 seconds.

She is able to pick up and place small puzzle pieces (regular size) together. Sabine has to hold the other pieces, though, so they don’t move around. Corbyn can also put on her coat without any contortion and it only takes 18 seconds. Zipping is easy now too. She also carried her lunch tray (with food on it) to the table and had to navigate in a small area without any problems.

Now for the very interesting (may only be interesting for the therapists out there…but who knows)…Today we had Corbyn eat using both hands. In other words, she used the fork with her R hand and held a knife in her left to help prevent the food from falling off the plate. Her L hand was also allowed to reposition the fork as needed and turn the plate. At first, Corbyn COULD NOT do this. Every time her R hand went to do something, the L couldn’t do a different task. So if she was trying to stab the food with her R hand, then her L hand started to move and couldn’t stabilize the target. It was extremely frustrating for Corbyn at first b/c the hands seemed very confused as to what to do and couldn’t do different things. With practice and max. effort, Corbyn was able to control the hands separately. Of course, eating time went from 20-30 mins (depending on food) to 65-mins today. I really wish I had my video camera rolling to show the tremendous coordination problems when trying to use 2 hands in different roles on the same task. It makes sense that this would be difficult for Corbyn seeing that she never did 2 different things with her hands before. But, even so, it was amazing to watch.

Day 19

Well, today Corbyn got the bilateral eating down to 30-minutes! She is doing much better doing 2 different things with the hands. Sabine had Corbyn holding a bag in her R hand and doing a shape-sorting task as quickly as possible with her L hand. Corb had no problems holding on (except as the hand fatigued due to the amt. of weight in the bag). Corbyn carried her lunch tray (all items on it) to the table without difficulty. Without some assistance, she would have spilled the tray as she put it into the rack at the end of the meal.

With the splint off, Corbyn is still having difficulty controlling herself to stop the L hand from doing all of the work/taking over when things get hard for the R hand. She doesn’t like to slow down and give the R hand as much time as it needs to do the task.

Corbyn is really a very good kid. She has tried so hard to do what’s asked of her. She doesn’t really complain. I can’t imagine how she sticks with it. Sometimes I get bored watching her dress and undress for the 10th time. But somehow she keeps going. I can’t even imagine how she must feel!

Just one more in-clinic day! Half of the day will be treatment and the other half will be post-testing. I can’t believe the other week is already about done. I am glad that Sabine agreed to do the tx on Saturday especially since we are losing half a day on the testing. I am very curious to see how she does.

Day 20

Well the formal clinic treatment is over. No more walks to Hegau-Jugendwerk.

Corbyn was really tired today. She stuck with it though.

All of the post-testing is done. Some of the numbers are not as good as I would have liked..but as we all know…standardized testing is only one moment in time and doesn’t tell the whole story. I don’t know what I expected…she did well…

Here is a brief review of the results:

On the Wolf Motor Function Test (a test that measures the speed and quality of various movements), Corbyn’s median time went from 5.87 secs down to 4.67 seconds (Sabine said this was a significant change). Her mean time overall went from 28.41 seconds to 26.36 seconds. Sabine says they don’t normally use this b/c it includes items that were really easy (completed in less than 1 second) and items that were really hard (unable to be completed in the 2-mins allotted). More significant was the quality of movement that changed from 2.46 to 3.07 (on a 0-5 point scale; 5 being normal).

The Frenchay Arm test was really a bust. I must say that I did not see pre-test administration, but post-test administration was highly lacking. What I mean is that the OT did NOT give Corbyn explicit instruction in what to do. For example, she said, "Make a 10cm line." She didn’t give any other direction as to what she could or couldn’t do. Part of this must have been the OT’s limited English…I don’t know. Anyway Corbyn got 0 on pre-test and 0 on post-test. I am sure that Corbyn could have stabilized the ruler for the measuring test had she been given even a little more instruction.

On the peg test, Corbyn was able to pick up (from the table) and place one peg into a pegboard today. She picked up 6 more pegs but was unable to pronate or supinate sufficiently to get the peg into the hole. For pre-testing, she couldn’t even pick up one peg.

On the Ashworth Scale, Corbyn’s tone decreased in her elbow only. The others (shoulder, hand, fingers) remained unchanged.

On the finger-tapping test, Corbyn pressed the space bar 10 times in 60 seconds with her thumb on the pre-test. Post-test score was 34 times. With her pointer, pre-test was 21 and post-test was 29. Middle finger was 26 pre and 31 post. Ring finger was 9 pre and 27 post! Pinky was 5 pre and 31 post!! So we gained a lot of individual finger movement.

On the Dynamometer, Corbyn squeezed her hand with 3 kg of force pre-test and 6 kg of force on post-test! That’s pretty good improvement in strength! As a reference though, her L hand can exert 16 kg.

Active thumb abduction went from 7 cm to 9 cm as measured from the top of the pointer to the top of the thumb.

Overall strength in the R side improved in the following areas: shoulder extension, elbow flexion, pronation, wrist flexion, wrist extension, radial abduction, and finger flexion. The other areas remained unchanged.

On the Motor Activity Log, a test which measures amount of use and quality/difficulty of the movement, Corbyn made the most dramatic changes. On the 12 items, 5 items can be completed with one hand and the remaining are bilateral tasks. Pre-testing, Corbyn received an amount of use score of 0.4 for the unilateral tasks (again 0-5 scale with 0 being not used at all and 5 being all the time) and a quality rating of 1.3. Post-testing scores were 4.0 (it should be noted that Corbyn received scores of 5 on 4/5 items and a 0 on the remaining item as she did not do it in the last 2 days (pick up/dial a telephone)) with a quality rating of 3.1 (again a 0 was factored in b/c she didn’t do it).

For the bilateral tasks…pre-testing use was 1.43 with a quality score of 1.29. Post-testing scores were 4.57 with a quality rating of 3.79!

The Actual Amount of Use Test is not administered in the traditional way: patient is in a room and is unknowingly (consent was received prior to videotape anything and everything…LOL) videotaped doing various tasks in a room (functional things like turning pages in a book, writing/holding paper, giving someone something, looking through the newspaper, etc). The tape is then rated to see which extremity was used during the task. This is supposed to be a fairly reliable measure, as the client does not know that they are being watched. Sabine can’t administer the test in this fashion so she observes Corbyn doing those things (if they come up) and sees how she does it...no cueing. On pre-testing, Corbyn did not do anything spontaneously with her R hand. Sabine hasn’t filled out the testing form for the post-test results…but here are my observations based on what she does at the apartment…

Grabbing and pulling out chair is now done with R only or both depending on size of chair. Opening doors is always with the R hand. Turning on/off lights is always with the R hand. Grabbing things depends on size of object…she clears the table with her R only, but will use both hands if the object is large. Eating is bilateral…uses fork/spoon with her R hand and uses the L to hold/position the plate/bowl. Drinking is bilateral..puts the cup in her R hand with the L then drinks with her R. Pouring is bilateral..holds her cup with the R and pours from the pitcher with her L. Buttering bread is bilateral…holds the plate/bread with the R and butters with the L. Dressing is bilateral. Brushing teeth is bilateral. Playing Game-Boy is bilateral (able to use the thumb on the R hand consistently). Shoe tying is bilateral (always was but Corbyn reports it’s much easier now). Carrying things depends on the size but she will always give her R hand something to carry…she trusts it much more now.

I have to say that I’ve observed these things when Corbyn didn’t know I was watching or when I’d just pop in quickly and she couldn’t switch hands quickly enough..so I know she was doing with the R hand prior to my arrival. At the beginning of last week, she’d try with her R and if it didn’t work on the 1st try, she’d immediately switch to her L. Now she sticks with it until it’s done.

So…she’s much better. Quality wise…speed wise…automaticity wise…but will it stick??? The previous research (again wrong population) says it will stay…WE"LL SEE!!!

Day 21

Can't find the email….

Day 22

I didn’t write much yesterday as I was disappointed with Corbyn’s level of participation in the home treatment. One of the main premises of the treatment is the behavior change that is required. I think Corbyn is a great example of the clinic phenomenon that we all know so well (An article I read, "He can but does he?" does a wonderful job of describing it). Although she can use her R hand to do SO many things now…I fear that she won’t do anything with it all. Until she decides that it is important FOR HER and not for me or for Sabine or for her Grandfather or other family members, it just won’t matter.

The only thing I can say is that it is truly amazing that without EVER having function in her hand her brain was able to reorganize and find a way to make the arm, elbow, wrist, and fingers work! So, now she knows that she can do it if she tries hard enough. Maybe when she’s older, she’ll want it more. She’ll have the self-control and discipline that only comes with maturity and an ability to delay gratification.

I can also say that I will not have to feel guilty. For those of who are parents or work with families of children that are impaired (phys/mentally), you are aware of the "mommy" guilt that is associated with any problem the child experiences (particularly in those cases when the defect was congenital). I can say that I have done EVERYTHING in my power to help this child. She had 9 ½ years of OT, 10 ½ years of PT (and is still ongoing once a week), 2 years of ST (plus 7 years (ongoing) of ST in the schools), numerous tutors, and lots of assistance and support from other teachers and from her family. In addition, she has now completed a very comprehensive, time consuming, not to mention expensive, treatment protocol over the last month. She is equipped with the knowledge, the strategies, and the ability…only SHE can do the rest. It is not my guilt anymore…it is hers.

If it sounds like I don’t believe in CI therapy anymore…that is NOT THE CASE. It is a wonderful treatment that has been clinically proven to provide substantial improvement to the impaired limb (and it did in Corbyn’s case too). I do think more research is needed with kids who’ve been impaired since birth..so not a loss of function…but a NEVER had function to see what happens in their case. I will be keeping careful records of Corbyn’s progress over the next 3 months, 6 months, 12 months and then 24 months with the intentions of writing up the case study. Sabine seemed marginally interested in doing with me…if she won’t do it, I’ll do it alone.

It would be interesting to do a study on younger children, affected since birth, to see if you can PREVENT the learned non-use. I would suspect you CAN! In Corbyn’s case, she is functional for so many things with ONE hand only. At this point, that behavior is hard to change b/c the R hand is still MUCH slower than the L. Although using 2 hands WOULD make the task faster (pulling up pants) it will take more practice to get the R hand fast enough that she’d do it spontaneously. We’ll see what’ll happen.



Well…there you have it…It was a wonderful experience!

Let me know what you think!


Home | Donate |About Us | Discussion Group | Treatments and Research | Current Treatments | The Bright Project | Advocacy and Education | For the Professional | News | Case Studies | Contact Us | Advisory Panel | Search