What do you need to know to make the best choice(s)? I have both good news and bad news. The good news is that there are a wide variety of approaches that have positive research evidence and some enthusiastic advocates. The bad news is that there is no one magic bullet that will work for everyone.
This is the start of a new series about medical and surgical interventions in cerebral palsy. I believe that it is possible to sort through all the conflicting claims and approaches if you apply a few simple principles to the decision process. The Spasticity Series of blog posts listed below covers what I consider to be the basic requirements of care for all children with cerebral palsy from birth to age 4 years. In this early period, the goal is to inhibit spasticity and keep the body in alignment. This series is about what to do when you need more help controlling tone and/or help restoring alignment that has been lost through growth. Although many may argue with me, in my clinical experience, children with moderate to severe cerebral palsy all require medical and/or surgical interventions at some point to control spasticity. In reality, many of these children do not currently have the appropriate interventions and grow up with significant body mal-alignment. The long-term follow-up results of young adults with significant alignment issues include a high incidence of musculoskeletal pain and early joint replacement surgery as young adults. (Is Malalignment Malpractice)
The ideal candidate for a “no intervention” strategy is a small boned, female child with mild cerebral palsy, who grows slowly to maturity without a marked pubertal growth spurt. With the same level of mild cerebral palsy, a heavily muscled, large boned male who has a ballistic early pubertal growth spurt is almost sure to need one or more of these interventions. The individual body type and growth rate are one of the most important parameters. Spasticity increases as the baby starts to move up against gravity and it increases with every growth spurt. This graph is the growth velocity in boys over the first 18 years.
There is a very rapid rate of growth over the first four years of life. In fact, the baby achieves half of their adult growth by 2 to 3 years. Puberty generally comes two years earlier in girls than in boys and in both sexes it is associated with a growth spurt. This pubertal growth spurt causes difficulty for children who have muscle imbalance caused by spasticity. Ask your pediatrician for a growth chart plotted both for linear and velocity growth. It is an important part of the your child’s personal health record.
The graph is a set of smoothed curves. The individual child actually grows with a series of spurts – real children do not grow in a smooth line. When the clothes suddenly do not fit and the child seems to need more sleep, there is a pretty good chance that a growth spurt is starting. It is during a period of rapid growth that spastic tone can rapidly increase and a Botox injection may be considered. The best result requires some organization of all the key players. The person who is most likely to be able to get this accomplished is a parent. This is my checklist for this intervention. (The Checklist Manifesto)
Step 1: Is there a fixed contracture or just increased tone?
When an injection is suggested by your physician or surgeon, ask if there is a fixed contracture or any limitation in joint mobility.
Step 2: Mobilize the joint.
If there is, talk to your therapist about the available techniques to correct this mobility problem. If it is a fixed contracture, serial casting may help.
I will discuss the interaction of spasticity management techniques and orthopedic surgery in a later post. For this discussion, I will assume there is either no fixed limitation of movement or that it is responsive to an intervention like serial casting.
Step 3: Consult with therapist and/or orthotist re AFO’s and or Splints.
If there is reasonable joint mobility, a week to 10 days after the injection, there will be maximal relaxation of the spastic muscle. Make sure that the orthotic or splint is organized to be properly fitted and ready to go at this time. I can’t tell you how many times I’ve heard of patients who have had a Botox injection at the same time as their child’s splints are outgrown. Any delay for new splint fabrication and/or modification means you lose precious weeks when the spastic tone is lowered.
Step 4: Consider night splinting post injection.
The spastic reflex arc means that when the spastic muscle fires excessively, it inhibits the muscles on the opposite side. The spastic muscle gets progressively shorter and the non-spastic antagonist muscle gets progressively longer. These muscles have to realign and the best way to do it is to use 23/24 hour splinting. This means adding night splitting after the injection. It has been shown that a slow steady pull on a spastic muscle will help it grow and growth occurs at night. Equally if the non-spastic spastic muscle is held in a slightly shortened position, it will help with the realignment of growth.
Step 5: Strengthen the Non-Spastic Antagonist.
Post injection, in addition to your regular massage and stretching program, do strengthening exercises of the non-spastic antagonist, out of gravity. It is absolutely remarkable to me how few patients are given specific muscle strengthening exercises post injection. In my opinion, knocking out the spastic muscle, without strengthening it’s antagonist muscle, is frankly a waste of time. The exercises that work best are progressive, resistive and closed chain. Ask your therapist for instruction on this important component of post-injection management.
Step 6: Intensive therapy to teach new functional movement.
To readers of my blog, it’s quite apparent that I am a strong proponent of intensive bouts of therapy. It works in Constraint Induced Movement Therapy (CIMT) and it works in athletic training and it should work in children with cerebral palsy. Ten days to 2 weeks after an injection of Botox, I recommend starting a 2 to 3 week period of intensive therapy. The easiest way to do this is to follow the lead of CIMT and consolidate all the available hours of therapy into every other day or even daily PT. The goals are strengthening and teaching new functional movement. If you use 3 months of therapy time intensively over 2 to 3 weeks, the results can be far better.
I’m very disturbed by the growing practice of using repeated Botox injections as a stand-alone therapy for upper and/or lower limb tone. There is no doubt that if given in a proper dose, to the correct muscles, the tone in the injected muscles decreases. But, as the night follows the day, these injections, used alone, will not have a lasting effect. The tone will return. I prefer to think of Botox or any other injection to decrease spasticity as an addition to the basics of massage, stretching and proper bracing of the ankle or hand splints.
Botox injections are an extremely effective, short-term intervention. For some children, it may be sufficient. Next week, I will write about Posterior Rhizotomy and Baclofen Pumps for long-term spasticity management.
I welcome your questions and comments.
Spasticity Management Series
When Will My Child Walk?
What About Spasticity?
Muscle Imbalance Hurts Growing Bodies
Spasticity is a Body and Brain Habit
First the Trunk, Then the Ankle – Spasticity #5
A New Way Of Thinking About AFO’s – Spasticity Series #6