One page summary: Dyskinetic cerebral palsy

In two sentences

Dyskinetic cerebral palsy is the type where a child makes movements they do not mean to make. Tone swings between floppy and stiff, often within the same minute. ¹

It comes from injury to the basal ganglia and the thalamus, deep structures that smooth out movement. Two events are most often behind it: a sudden severe loss of oxygen at term, and very high bilirubin that was not treated. ²

The numbers, with their sources

• Where the injury is. The basal ganglia and thalamus, deep brain structures that use a large amount of oxygen and are hurt early when oxygen drops suddenly ²
• The two movement patterns. Dystonia means sustained twisting and abnormal posture. Athetosis means slow, writhing, continuous movement. Many children have both ¹
• The jaundice link. Very high bilirubin can damage the basal ganglia and cause kernicterus, which produces a specific dyskinetic cerebral palsy often paired with hearing loss ³
• Intelligence. Many children with dyskinetic cerebral palsy have typical intelligence, and movement of the mouth and face can make speech very hard, which leads to their ability being underestimated ¹
• The treatable cause. Guidelines set bilirubin treatment thresholds by hour of age, gestational age and risk factors, precisely so this outcome can be prevented ³

What to do this week

1. If jaundice was part of this, request every bilirubin result with the exact time and the baby's age in hours.
2. Ask for a full audiology assessment, including testing for auditory neuropathy, not just the newborn screen.
3. Ask for an AAC evaluation. Do not wait for speech to develop.
4. Ask for a seating assessment. Trunk support changes what the hands can do.
5. Ask what the MRI showed in the basal ganglia and thalamus.
6. Refer to early intervention today.

Questions to take with you

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

For the neurologist

• What did the MRI show in the basal ganglia and thalamus?
• Is this dystonia, athetosis, or both, and which is causing the most trouble?
• Which medicine would you try first, and how will we know if it is working?
• Should we do genetic or metabolic testing?
• Was hearing fully assessed, including auditory neuropathy?

For the therapy and AAC team

• What communication system should we start with, and how do we get it funded?
• How do we set up seating so the hands are freer?
• What do we do when movements get worse with excitement?

For the neonatologist or pediatrician, if jaundice was involved

• What were all the bilirubin values, and at what hour of age was each drawn?
• What was the treatment threshold for my baby at each of those times?
• When was phototherapy started, and was exchange transfusion considered?
• What was the discharge plan for rechecking bilirubin?

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

Where to read more

The full page on this condition covers how it happens, causes split into what happens even with perfect care and what is associated with gaps in care, signs by age, diagnosis, treatment, outlook, daily life and lifetime cost.

Read the full page on Dyskinetic cerebral palsy

Related pages are listed at the bottom of it, including the events that can lead to this condition and the guides that cover therapy, school and money.