First the Trunk, Then the Ankle – Spasticity #5

There is a continuing debate about the use of ankle supports/braces in children with cerebral palsy. In my experience, where there are polarized opinions, it usually means that there are more opinions than science in play. In the last 5 to 10 years, I have heard of more and more therapists and proponents of various therapy programs state that braces and splints are not necessary in small children with cerebral palsy. Another common instruction is to wear the orthotic for 3 or 4 hours a day. I disagree with this course of inaction and have been unable to find any science to back up the “no braces” position. Fortunately, there is both science and experience available to back up the regular use of braces and splints to maintain body alignment during growth.

I am old enough to remember when there were no AFO’s and it was not a pretty sight! When I started working in the Neonatal Follow-up Clinic at the Hospital for Sick Children in Toronto, there was very little active therapy intervention for children with increased tone, diagnosed early. There was only one home-based intervention program for the birth to 3 years population that provided some guidance on handling and stimulation. The cerebral palsy clinic at the Ontario Crippled Children’s Center…now the Holland Bloorview Center…only started to see children at age 3 to 4 years. By this age, a large number of children had already developed significant biomechanical distortions. Orthopedic surgery was booked and the children were braced for a period post-operatively. After a few months of post-op therapy, most of the orthopedic surgeons felt that further therapy would not be helpful and the children should “just be kids”.

By the mid to late 1980’s, more therapists had been trained in the neurodevelopmental approach (NDT/Bobath) and the NICU clinic occupational therapist, Sarah Forsyth, was the first in Toronto to receive further training at a “Baby Bobath” course. The attitudes were starting to change from watchful waiting to a more active intervention strategy. About this time, Tema Stein, PT arrived from Vancouver with a new tool. She introduced TRAFO’s or Tone Reducing Ankle Foot Orthoses to the therapy community. I remember the heated discussions about the concept of putting these “boots” on babies. It was a new approach and initially met with some resistance. The truth of it was that they worked and their use spread rapidly. The introduction of custom moulded AFO’s changed the field and now AFO’s represent 26% of all custom orthotics.

Why do I feel all children with increased tone should have properly fitted supports? It is simple. Whatever you do, your body and brain learn to do it better. If the child is up on the toes, the muscles change in a predictable fashion and the amount of excess tone increases. (Spasticity is a Brain and Body Habit) Movement starts centrally and moves outwards. Trunk support systems tend to stabilize the hips and the TheraTogs system goes one step farther. The basic trunk garment comes with stabilizing straps that allow the therapist to gradually correct the trunk/hip alignment. (Core Support Options) In children with mild to moderate involvement in the legs, the next step is stabilizing the foot and ankle. There are some key points that parents should know about a custom fitted device.

  • It should fit – red marks, blisters, or other signs of wear and tear on the foot are not “custom” and should be repaired or replaced
  • The weight-bearing surface should be over the whole foot – Lie your child down on a bed, on the stomach, bend the knees to 90 degrees and look at the bottom of the feet. They should be growing symmetrically. If the weight is not distributed properly, the side bearing all the weight will grow more. This can be corrected by further growth as long as the brace is made properly.
  • Children’s feet should have arches and their braces should have a foot bed that allows for this.
  • The goal is to hold all the bones of the foot/ankle complex in good alignment. Once all of the components are in place, everyone has to remember to look at the knee and hip as well. A good stable base will transfer upwards to an improved posture. If the posture is worse with the brace on, go back to your therapist and orthotist to get it fixed.

The goal of any support option is to ensure that the child learns to walk in the best possible way. (When Will My Child Walk?) Weakness, spasticity and poor balance are the key problems that interfere with the development of walking skills. Muscle weakness is universal in children with early neurologic injuries and spasticity complicates the problems for many of them. (What About Spasticity?) Daily stretching and massage should start in infancy and continue throughout the growing period. IF the child’s muscles are always stiff, they will never learn to relax them. (Muscle Imbalance Hurts Growing Bodies) Once the baby starts to move against gravity, spasticity will increase. It also increases with every growth spurt. (Spasticity is a Brain and Body Habit) It is always easier to prevent a bad habit than it is to change an established one. Talk to your therapist and physician about core support and foot/ankle stability. Remember, whatever the body does, it learns to do better. Great alignment is the first step to keeping them from just “Learning to do Bad Better”. I look forward to your comments and/or questions.

 


6 Responses to “First the Trunk, Then the Ankle – Spasticity #5”
  1. I’m a big fan of AFO’s and enjoyed reading about their history here 🙂
    I have often heard the concern that wearing orthotics makes the muscles lazy. I say that in a foot with spasticity, the muscles “splint” the foot in a spastic pattern that continues to deform the foot, negatively affect the knee, ankle, spine and even the posture of the upper limbs. The foot muscles STILL don’t get any beneficial exercise. The custom orthotic splints the foot in a position that allows the parts of the body that can work better to do so.
    Still – some kids really battle to tolerate them and 3 – 4 hours a day is better than none. It gives the muscles a fair stretch out of the abnormal patterns and helps prevent contractures developing.

    • kpape says:

      Thank you for your comment. You make some excellent points. I have also heard the “lazy muscle” excuse and have to say that it is not based on any factual data. Please see my post http://www.karenpapemd.com/index.php/the-good-the-bad-the-ugly-facts-about-growth-and-recovery/ Outside the world of cerebral palsy, many children are braced, for long periods of time, without long-term sequellae. Every hour the child is up against gravity , the muscles and nerves are either learning movement in good alignment or in bad alignment. IF it was just a habit, I might not be so forceful. But, it affects the growth of the muscles and increases the spasticity loop. They learn “to do bad better” and it is harder to fix.There are lots of ways to mobilize and strengthen muscles out of gravity with progressive, resistive work and water exercise.The children I discuss in the above post wear their braces 23/24 because they have been told that is what is needed to get a good outcome. They tolerate their splints for far longer than is needed in cerebral palsy. Remember, there is no spasticity during sleep! I believe that it is time to raise our expectations and work for a better outcome. We know 3-4 hours does not work and somehow we collectively need to help parents understand this reality.

  2. HollyGarner says:

    What are thoughts on articulated versus solid ankle AFOs?

    • kpape says:

      Good question Holly. I am not a expert in orthotics, but I do have a few observations. The best results that I have seen are starting with a solid AFO and staying with it until the child is able to walk with the support. I look at articulated ones as a transition to help with walking skills once they are up and moving. But, the more expensive ones with a locking mechanism are useful at that stage. If the child is tired, she may need more support. If the terrain is rough, he may need more support. I like the “New Paradigm” ones the best as they seem to produce the best body posture and the under heel support can be slowly decreased to get muscle growth as the child starts to take his body weight through the heel. Hope this helps. Karen

  3. Tara says:

    My son is now 5 and we have struggled with AFOs. He has high tone and the AFOs often left him in pain and redness. He has had his first botox treatment and has just been fitted for a new pair of AFOs. One question I posed to his CO was is it better to have say one hour of proper standing with me assisting his standing in the AFOs, or several hours of just wearing the AFOs and allowing him to continued his learned posture and gait we’re trying to correct? I was wondering what your take is on this.

    • kpape says:

      Tara, Thank you for your question. Badly fitting AFO’s are not a help. Sometimes things are improved by Botox. In other cases, I advise seeing a good spasticity management team to discuss whether another approach may be needed. Selective Posterior Rhizotomy or a Baclofen pump can significantly reduce high tone and in other cases, orthopedic surgery may be needed to get the feet in a position where the AFO’s can help. Please read this post first http://www.karenpapemd.com/index.php/a-new-way-of-thinking-about-afos-spasticity-series-6/ and consult with Billi Cusick to see if there are trained orthotists in your area. Forcing the foot, at the cost of redness and pain is not, in my experience, an effective treatment.