One page summary: Epilepsy after a birth injury

In two sentences

Epilepsy means repeated seizures that are not caused by a short-term problem such as low blood sugar or a fever. After a birth injury, epilepsy can appear months or years later, once the injured area of brain becomes a source of abnormal electrical activity. ¹

The most urgent thing on this page is infantile spasms. They usually begin between 3 and 12 months, they look like brief clusters of the body folding forward or the arms flinging out, and they are frequently mistaken for colic or startle. They need urgent assessment because early treatment matters. ¹

The numbers, with their sources

• Who is at risk. Children with brain injury from HIE, stroke, bleeding, infection or malformation are at higher risk of epilepsy than the general population ¹
• When it appears. It can appear at any age. Infantile spasms typically begin between 3 and 12 months of age ¹
• The urgent pattern. Infantile spasms come in clusters, often on waking, with the body folding forward or the arms flinging out. They need urgent assessment ¹
• The main test. EEG, which records the electrical activity of the brain. A specific chaotic pattern called hypsarrhythmia is associated with infantile spasms ¹
• Treatment. Antiseizure medicines are the first line. Where medicines fail, options include dietary therapy, nerve stimulation and in selected children surgery ¹
• How often medicines work. Many people with epilepsy achieve seizure control on medication, and those whose seizures continue after two well-chosen medicines are described as having drug-resistant epilepsy and should be referred to a specialist center ¹

What to do this week

1. If you see clusters of the body folding forward or arms flinging out in a baby under 12 months, film it and seek assessment urgently.
2. Ask for the seizure type and epilepsy type in writing.
3. Ask what the EEG and MRI showed.
4. Get a written seizure action plan for home and school.
5. Ask what the plan is if the first medicine does not work, and at what point you would be referred to a specialist center.
6. Ask whether genetic testing is indicated.
7. Ask whether epilepsy surgery might ever be an option, if the injury is in one area.

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 type of seizures, and what type of epilepsy?
• What did the EEG show, and was it a routine, sleep or prolonged recording?
• If this medicine does not work, what is next, and when would you refer to an epilepsy center?
• Is my child a possible candidate for epilepsy surgery?
• Should we do genetic testing?
• What are the side effects we should watch for, especially on learning and attention?

For the epilepsy nurse or clinic

• What exactly do I do during a seizure, and at what point do I call an ambulance?
• What rescue medicine, and can you show me how to give it?
• What do I do if a dose is missed?
• What should the school have in writing?

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 Epilepsy after a birth injury

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.