For parents with cerebral palsied children
Frequent remarks to parents with children diagnosed with cerebral palsy:
His / her muscles are only a little stiff. The physiotherapist will assist him/her with that.
The fact:
Neuro-developmental therapy (NDT) by a physiotherapist is the MAINSTAY management for your child from the time of diagnosis. Early intervention will guarantee the best possible prognosis for your childs’ specific level of affection. This means the socalled GMFCS: Gross Motor Function Classification System, with groups 1 to 5.
He/she will never walk so why bother to see the Orthopaedic Surgeon?
The fact:
Management by an orthopaedic surgeon is NOT about walking! Yes, level 1, 2 and even 3, children will be able to walk, be it only household walking with aids, as in level 3 children, BUT the most important reasons to see the orthopaedic surgeon are the following:
MOST IMPORTANT!
My child’s hip joints. This is the single area that causes most of the eventual debilitating complications due to dislocation of one or both hips.
Why does this happen?
Cerebral palsy causes increased muscle tone. Some muscle groups are better supplied as far as muscle volume is concerned, for the way we are suppose to walk and work with our hands.
Examples:
Your thumb is richly supplied with small so called intrinsic muscle for fine pinch actions, grasping objects etc. When the muscles have increased tone, the thumb moves into the palm and eventually causes severe problems.
The Hips:
Every cerebral palsied child needs an initial pelvic x-ray as a baseline for a failure management program. It can be stated that it is negligent for any doctor or therapist NOT to inform parents about this important action.
Managing any child for any neurological condition is equivalent to preventive medicine in so far as the ability to foresee future problems due to the underlying condition (e.g. cerebral palsy, muscle dystrophy, spina bifida, poliomyelitis etc.) that can be diagnosed EARLY and MANAGED properly.
No child with cerebral palsy should develop hip dislocation.
Your medical aid supports this view as it saves huge amounts of costly and often useless operations when the hips have dislocated.
There is a specific hip surveillance program for every child with cerebral palsy.
Your physiotherapist should refer you to an orthopaedic surgeon for the correct clinical assessment, x-ray and 6-12 monthly follow-up x-rays depending the initial assessment and the GMFCS group he/she falls under.
The damage is in the brain, how could the doctor suggest limb surgery?
The fact:
The damage is in the brain. This is the primary FACT. BUT: The outflow of the increased muscle tone with certain muscle groups overpowering their opponents causes the gradual development of deformities.
We sit and sleep with flexed knees.
It is logical that our hamstrings which are responsible for flexing our knees, will be one of the major areas causing problems with either standing up straight with extended knees, or causing a wheelchair-ridden child, to slip out of his/her chair at the slightest noise or ‘jerk’.
Physiotherapists do wonderful work to manage and postpone deformities of joints, but it should be stated that physiotherapy cannot prevent or ‘cure’ a dysplastic hip (shallow socket) or dislocated hip. Forceful well-intended abduction stretches may even cause further damage to the femoral heads cartilage and your child will cry with every nappy change, be unable to sit up straight in a wheelchair with eventual development of scoliosis.
The hamstrings:
These muscles are not only knee flexors, but importantly also hip extensors (= straightening your hip into extension). They are the main reason why a wheelchair seated child slips out of a wheelchair when there is increased muscle tone.
Babies’ first milestone of sitting allows them to sit upright with straight (extended) knees.
This allows for core muscle strengthening and for the spine to progress from the infantile C-curve to a straight spine at walking age.
With spastic and dynamically short hamstrings, the milestones of independent or propped sitting cannot be obtained and the core muscle remain extremely weak.
The damage in the brain is static (non progressive). BUT: The muscle imbalances are progressive.
Ask your physiotherapist to refer you to an orthopaedic surgeon as these doctors are trained to assess hip joints in detail, joint deformities and muscle imbalances.
The damage is in the brain, how could the doctor suggest limb surgery?
The fact:
Advice to place your child in a special care centre should not exclude the need for yearly surveillance by an orthopaedic surgeon. Institutionalised children are often the most severe groups 4 and 5 and are more prone to hip and spine problems.
A proper centre will have physiotherapists and occupational therapists attending to your child/adult patient and should be aware of the necessity for regular orthopaedic assessments.
Surgical interventions vs Botox injections
The fact:
There is NO one-size-fits-all. In a young child classified under any group of cerebral palsy (1-5), Botox is a useful management option to temporarily lenghten the shortened muscles and assist the physiotherapist with obtaining better ranges of motion and development of expected milestones for the specific groups.
Prolonged sequential episodes of Botox injections in children with a prognosis for independent or assisted walking, is not advised.
A maximum of 3 sessions of Botox in the lower limbs of spastic diplegic children is advised.
Parents will usually notice that further Botox sessions are not as successful as the initial session. This is a good indicator that surgery might now be indicated.
Splints
The fact:
The largest waste of funds to the medical aids and private funding, is due to incorrect decision making for splints.
A qualified orthotist should provide splints to cerebral palsy patients only when prescribed by a Neuro-developmental Therapy (NDT) physiotherapist or an orthopaedic surgeon.
Children with high grade spasticity (grades 3+4) are prone to problems with ankle-foot-orthoses. The reason for this is constant stimulation of the stretch reflex with the patient’s foot “fighting” the splint that is moving in the opposite direction as the planned correction.
This may cause extreme discomfort and even blisters or pressure sores.
In these patients Botox and/or fractional lengthening of overpowering muscle at the ankle joints, will assist with proper fitting of these devices and improved shoe-wear for support on the foot plates of a wheelchair and standing.