Spastic cerebral palsy

How does this happen?

Movement commands travel from the outer layer of the brain down a set of nerve pathways to the spinal cord. Along the way, other signals tell muscles when to relax. When those pathways are damaged, the "relax" message is weakened and the muscle stays switched on. ²

The pattern of the body affected follows the location of the injury.

Spastic diplegia

Both legs are affected more than the arms. The usual finding on imaging is periventricular leukomalacia, injury to the white matter beside the ventricles. The nerve fibers going to the legs pass closest to that area, which is why the legs take the brunt. This is the pattern most often seen after very preterm birth. ²

Spastic hemiplegia

One side of the body is affected, arm usually more than leg. The common cause is a perinatal stroke or a one-sided bleed. ⁴ Early hand preference is often the first thing a parent notices.

Spastic quadriplegia

All four limbs are involved, and usually the trunk, the mouth and the face too. It follows more widespread brain injury. It carries the highest rates of epilepsy, feeding difficulty and learning differences. ¹

What causes it?

Two different questions get mixed together here. The first is what leads to this injury in the body. The second is whether anyone could have prevented it. They are not the same question, and the answer to the first does not settle the second.

Happens even with perfect care

• Very preterm birth, which is the leading risk factor for spastic diplegia. ⁵
• Bleeding in the brain of a baby born early, which can happen despite good care. ⁶
• A perinatal stroke, which usually has no identified cause. ⁴
• Infection during pregnancy affecting the developing white matter. ⁷
• Genetic conditions that produce a spastic picture. ¹

Associated with gaps in care

These are situations where published standards say what the care team should watch for and do. A gap here does not prove anyone caused your child's injury. It points to where the medical records will have an answer.

• Magnesium sulphate not given before 32 weeks. Given to a mother in preterm labor for neuroprotection, magnesium reduces the risk of cerebral palsy in the baby. ⁸
• Antenatal corticosteroids not given when preterm birth was expected. ^{9 10}
• A prolonged loss of oxygen during labor that was not acted on. ¹¹
• Severe untreated jaundice, which more often produces the dyskinetic type but can contribute here. ¹²
• Untreated maternal infection. ¹³

Whether a gap here caused a particular child's injury is a question for a physician expert reading the whole record, not for a website.

What are the signs, by age?

Signs change as a child grows. A newborn cannot show you a walking problem. Some children look fine at first and show differences months later.

At birth and the first hours

Nothing specific at birth. Risk factors may be present: preterm birth, a difficult resuscitation, or an abnormal head ultrasound.

The first week

• An abnormal cranial ultrasound or MRI in a baby born early.
• Very stiff or very floppy tone. Early floppiness often becomes stiffness later, which surprises families.

Around 3 months

• Legs that stiffen and cross when the baby is held upright.
• Fisted hands past 3 months.
• Poor head control.
• Arching backward.

Around 6 months

• Not rolling. ¹⁴
• Using one hand and ignoring the other. This is the classic early sign of hemiplegia and it should be raised with a doctor. ¹⁵
• Stiff, hard-to-bend legs during diaper changes.

Around 12 months

• Not sitting independently. ¹⁴
• Crawling with the arms while the legs trail, sometimes called commando crawling.
• Toe pointing when held upright.
• Clear asymmetry in reaching or kicking.

Toddler years

• Walking late, on toes, or with knees turning in toward each other.
• Frequent falls and quick fatigue.
• A hand held in a fisted or flexed position during activity.

School age

• Gait that becomes more effortful as the child grows and gets heavier.
• Hip or back pain, and contractures at the ankle, knee and hip.
• Orthopedic surgery is most often considered in this period.
• Learning and attention differences, which are common and often overlooked.

How is it diagnosed?

Diagnosis is clinical, supported by MRI, a standardized motor assessment and a neurological examination, and it can be made or a high-risk designation given before 6 months corrected age. ¹⁵

For spastic cerebral palsy specifically, the examination looks for increased tone that gets stronger with faster stretch, brisk reflexes, and sometimes a sustained beating at the ankle called clonus. Scales such as the Modified Ashworth Scale are used to record how tight a muscle is, so change over time can be measured. ¹

An MRI often shows the specific pattern: periventricular leukomalacia in diplegia, a one-sided injury in hemiplegia, widespread injury in quadriplegia. ²

Ask for the GMFCS level in writing. It is the number that predicts function better than the type does. ¹⁶

What is the treatment?

Stretching, positioning and bracing

Daily stretching and good positioning slow the process by which tight muscles pull joints out of line. Ankle-foot orthoses hold the foot in a usable position for standing and walking.

Reducing tightness

• Botulinum toxin into a specific tight muscle, lasting a few months, usually paired with a burst of therapy or a new brace so the window is used.
• Oral baclofen or diazepam for more widespread tightness.
• An intrathecal baclofen pump for severe generalized spasticity.
• selective dorsal rhizotomy, surgery cutting selected sensory nerve roots, for carefully selected children with spastic diplegia who already walk.

Therapy

Goal-directed training, where practice is aimed at a goal the family chose, has better evidence than general handling. ¹⁷ For children with one-sided involvement, constraint-induced movement therapy improves use of the affected arm. ³

Orthopedic surgery

Tendon lengthening and bone realignment, often several procedures done in one operation in later childhood. The goal is usually to keep walking comfortable, or to keep sitting and hygiene manageable in children who do not walk.

Hip surveillance

Hips can drift out of joint slowly and painlessly, and a dislocated hip is painful and much harder to fix than a drifting one. Ask when X-ray surveillance starts for your child's GMFCS level and how often it repeats. ¹

What is the long-term outlook?

The GMFCS level predicts function far better than the type. ¹⁶

• Hemiplegia usually means walking independently. The hand is often the bigger long-term limit, which is why early hand therapy matters.
• Diplegia ranges widely. Many children walk, some with a walker or crutches, and walking often takes more energy than it does for other children.
• Quadriplegia usually means using a wheelchair, with a higher rate of epilepsy, feeding difficulty and learning differences. Powered mobility and communication devices are often what change a child's world.

Pain and fatigue rise into adolescence and adulthood, and both are under-treated. Raise them at every visit even if nobody asks. ¹

What does daily life look like?

Stretching most days. Braces on and off. Therapy visits, orthopedic visits, X-rays.

Bathrooms and stairs shape where a family can live. Home modification is expensive and is sometimes covered by a Medicaid waiver. See equipment and home modifications.

School is generally about access and fatigue: getting between classes, carrying things, and having enough energy left to learn. Both belong in the IEP.

What does care cost over a lifetime?

The CDC estimate of about $921,000 in 2003 dollars for a lifetime with cerebral palsy is an average across all types and severities. ¹⁸ A child with hemiplegia who walks independently and a child with spastic quadriplegia who uses a wheelchair and a feeding tube are at opposite ends of that average.

Use the cost of care estimator for ranges by severity with sources attached.

What can you do this week?

1. Ask for the type, distribution and GMFCS level in writing.
2. Ask when hip surveillance starts and how often X-rays repeat.
3. Ask whether constraint-induced movement therapy is appropriate if one side is more affected.
4. Ask what the brace is for and what it should be doing, because "wear the brace" without a goal rarely lasts.
5. Refer to early intervention or the school district today.
6. Apply for your state's Medicaid waiver, because of the waiting lists.

What should you ask each specialist?

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the physiatrist or neurologist

• Which muscles are the biggest problem right now, and what is the plan for each?
• Is botulinum toxin appropriate, and what will we pair it with?
• Is my child a candidate for selective dorsal rhizotomy, and what is the evidence in a child like mine?
• How do we track whether tightness is getting worse?

For the orthopedic surgeon

• What do the hip X-rays show, and what number are you watching?
• If we do nothing, what happens over the next two years?
• What is the goal of surgery: walking, comfort, sitting, or care?
• How many procedures, and what does recovery ask of us?

For the therapy team

• What is the one goal we are working on this quarter?
• How long should the brace be worn each day, and how do we know it fits?
• What should we do at home, and can you watch me do it once?

You can also build a printable list with the question generator.