Goal setting varies with the age and stage of brain and body growth and maturity. It is important to distinguish vision or long-term goals from short-term action goals. The best example that I know is walking. In my experience, this is one of the first questions parents ask when given a diagnosis of cerebral palsy. In nearly all cases the information they are given is incorrect.
Walking abilities in children with cerebral palsy
There is excellent information from cerebral palsy registries about the level of walking skills attained by children with cerebral palsy. Currently, 80+% of children score on the GMFCS at Level I to III. This means that they are able to walk and over 60% of them are walking independently. Once the exact type of cerebral palsy has been determined, we can be even more accurate about the prognosis. In children with hemiplegia, 99% walk and with diplegia, 98% walk. Even in those most severely involved with quadriplegia, over 25% also score at Level I to III. So walking is an achievable goal for the vast majority of children with cerebral palsy and parents should be told that early. Will My Child Walk? Are We Doing the Right Therapy?
Early walking tends to be abnormal walking
The question is how well will they walk? The period from birth to 2 to 4 years is key, as the child grows to half of their adult size and the potential for body growth interacting with increased tone is the greatest. The baby moves however they can and left to their own devices, up to 80% percent of children with cerebral palsy will have dominant spasticity.
In the early years, much of this spasticity is variable. We call it activity-dependent tone because it increases when the child tries to move. When they are well supported in a particular position, spasticity is not activated. These two blogs demonstrate activity-dependent tone in the upper and lower limbs of two infants. Good Enough Is Not Good Enough Any More – Function Follows Form In Cerebral Palsy
3 Steps To Hand Use: Alignment, Awareness and Activation
You can demonstrate this variable tone in your own child by watching them try to do a new task. The harder they try, the tighter they get. Your therapist can show you ways to diminish this variable tone with handling techniques, but it really has to be done all the time. Whatever they do they will learn to do better and that includes moving badly.
The overarching early goal is prevention of maladaptive movement habits and blocking activity-dependent increased tone.
Age-dependent goals for the child, teenager and adult
Once the child is over the age of 4 to 6 years, the tone tends to progress and bodily distortions are seen, particularly during growth spurts. Every parent of an older child can tell their own personal story of trying to control spastic tone with various types of AFOs or splints that are poorly tolerated and don’t work. At some point, Botox is added in which leads to a round of injections, again with less than perfect results. Then comes the dreaded orthopedic appointment when surgery is suggested. A lucky few get seen in an integrated spasticity management clinic and may be offered a Selective Posterior Rhizotomy (SDR) or a Baclofen pump.
This is fragmented care with the choice of interventions offered that are determined, at least in part, by the individual preferences and skills of the healthcare practitioner. This does not work well. I would argue that children deserve to be individually assessed to determine what they need. This will vary with their age, degree of spasticity, co-existing body distortions, body type and growth rate. The goal is to do the Right Thing(s) at the Right Time and most importantly in the Right Order. We all need to push for more integrated spasticity management assessments, with the goal of attaining normal body alignment.
One last word for the late teens and adults who have long left routine therapy behind – It is time to revisit that decision as most were not ever offered the therapies and treatments that are now available. This is an interesting blog from an adult in his 40’s with Spastic Diplegia. An Intensive Experience by Erik Zimmerman – Adults with CP can Improve
Next week, I will write more about age dependent goals in those with GMFCS Levels III to V.
Are you a proponent of early, permanent spasticity management though SDR at a young age (2-4 year old) as the best option to attain a normal alignment and gait pattern once the child learns to walk?
Dear Christine, Thank you for your question. If you read my book, you will learn that I am an advocate of personalized neurorehabilitation. There is no technique, therapy or surgery that is right for everyone at every stage. The individual child needs to be evaluated within the context of the family. One intervention at a time may be valid for a RCT, but children need an integrated plan.
Thanks for the reply Karen! I am currently reading your book 🙂
Who do you recommend as the best analyzer of an individual child. We have been to Dr. Nuzzo who recommends SPML, Dr. Anderson at Columbia and Dr. Parks at St. Louis both recommend SDR, spasticity management says SDR is a long road but probably the best one but is willing to try other things if we are not ready, pt feels we have been making good progress with Botox but also feels we are dealing with significant tone, orthopedic surgeon referred to Dr. Anderson but is also willing to do PERCS if we decide against SDR. So who should a parent trust when they are getting too many opinions?
Hi Michelle, Sorry, I wrote a reply and then it disappeared. Trying again. First let me say that I know and respect all the surgeons you have seen.Your orthopod also sounds reasonable and willing to work with you. Having different experts give you different advice is to be expected. As I discuss in my book, we all tend to see the world in light of our own knowledge and experience. As you already know, if you have tried Botox a few times, that it is a short term intervention. If your child has significant tone and body changes related to the tone, I disagree with the advice of your PT to just carry on. So, you are facing a decision. The best I can do is tell you how I think about the choices, but your doctors are the ones you have to trust as they have seen your child. I usually tried Botox first. If the child is young, PERCS would be the next step. But, if the child is older and has progressive tone and body distortion, then I used to send patients for a SDR.You may find this Blog interesting, written by an intelligent adult having an SDR.http://transcendingcp.blogspot.ca/2017/ Hope this helps.