Understanding an Epilepsy Diagnosis in My Baby
The short answer
Epilepsy is diagnosed when a child has two or more unprovoked seizures or one seizure with a high likelihood of recurrence (such as an abnormal EEG). The diagnostic process involves detailed history, EEG (brain wave test), and often MRI. Many childhood epilepsy syndromes have excellent prognoses, with many children outgrowing their epilepsy. Treatment with anti-seizure medication controls seizures in about 70% of children. A pediatric neurologist guides diagnosis and management.
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By Age
What to expect by age
Neonatal epilepsy syndromes include benign familial neonatal epilepsy and more serious conditions like Ohtahara syndrome. Diagnosis involves prolonged EEG monitoring and brain MRI. Treatment depends on the specific syndrome and underlying cause. Genetic testing may help identify the cause and guide treatment.
Infantile spasms (West syndrome) is diagnosed by the triad of spasms, developmental regression, and a chaotic EEG pattern (hypsarrhythmia). Prompt treatment with vigabatrin or ACTH is critical. Other epilepsy syndromes at this age include Dravet syndrome, often triggered by fever.
Several epilepsy syndromes can be identified at this age. Your neurologist will classify the type based on seizure description, EEG findings, and brain imaging. An accurate diagnosis is important because treatment and prognosis vary significantly between syndromes.
Childhood absence epilepsy may begin around this age, characterized by frequent brief staring spells. Self-limited epilepsy with centrotemporal spikes (formerly benign rolandic epilepsy) typically begins later. Many childhood epilepsies have a favorable prognosis with appropriate treatment.
Epilepsy management becomes well-established. Regular neurology follow-up monitors medication effectiveness and side effects. Many children achieve seizure freedom with medication. For those who do not respond to medication, options include ketogenic diet, vagus nerve stimulation, or epilepsy surgery evaluation.
What Should You Do?
When to take action
- Your child's seizures are well-controlled on medication
- Your child is developing normally despite the epilepsy diagnosis
- EEG shows improvement with treatment
- Seizure frequency or pattern changes despite medication
- You notice side effects from anti-seizure medication
- You want to discuss the long-term outlook and possibility of outgrowing epilepsy
- A seizure lasts more than 5 minutes or your child has a cluster of seizures
- Your child develops status epilepticus (prolonged or repeated seizures without recovery between them)
Sources
Related Resources
Trust your instincts. If something feels wrong, reach out to your pediatrician.
Worrying about your baby means you care. That is a good thing.
Related Medical Concerns
Types of Seizures in Babies and What They Look Like
Seizures in babies can look very different from seizures in adults. Types include subtle seizures (eye deviation, lip smacking, bicycling movements), tonic seizures (stiffening), clonic seizures (rhythmic jerking), myoclonic seizures (quick jerks), and infantile spasms (clusters of brief body flexion). Any suspected seizure in a baby needs medical evaluation. Video-recording the episode on your phone is extremely helpful for your doctor to determine if it was truly a seizure.
Concerns About Anti-Seizure Medication for My Baby
Anti-seizure medications (also called anticonvulsants or AEDs) are effective at controlling seizures in about 70% of children. Common medications for babies include levetiracetam (Keppra), phenobarbital, and oxcarbazepine. All medications have potential side effects, but uncontrolled seizures also carry risks. Your neurologist will choose the medication best suited to your baby's seizure type and monitor for side effects with regular check-ups and blood tests.
EEG Testing for My Baby - What to Expect
An EEG (electroencephalogram) is a painless test that measures electrical activity in the brain using small sensors (electrodes) placed on the scalp. It helps diagnose seizures and epilepsy. The test typically takes 30-60 minutes for a routine EEG, though some require overnight monitoring. Preparation may include sleep deprivation to encourage sleep during the test. The electrodes are attached with a washable paste and do not hurt your baby.
My Baby's Head Shape Looks Abnormal
Many babies develop temporary head shape irregularities that are completely normal. A cone-shaped head from vaginal delivery reshapes within days. Mild positional flattening (plagiocephaly) from sleeping on the back is very common and usually improves with repositioning and tummy time. However, head shape changes involving ridges, a persistently bulging fontanelle, or rapid head growth changes should be evaluated to rule out craniosynostosis.
Achondroplasia (Dwarfism) in Babies
Achondroplasia is the most common form of short-limbed dwarfism, affecting about 1 in 15,000 to 40,000 births. It is caused by a mutation in the FGFR3 gene and is usually apparent at birth with characteristic features including short limbs, a larger head, and a prominent forehead. Intelligence is normal. With monitoring for specific complications and supportive care, children with achondroplasia lead full, active, and independent lives.
Adenoid Hypertrophy and Breathing
Adenoids are lymphoid tissue located behind the nose that help fight infection in young children. When adenoids become enlarged (adenoid hypertrophy), they can block the nasal airway, causing chronic mouth breathing, snoring, nasal speech, and sleep-disordered breathing. Enlarged adenoids are most common between ages 2-7 and are a leading cause of obstructive sleep apnea in young children. Treatment ranges from watchful waiting and nasal steroids to surgical removal (adenoidectomy) if breathing or sleep is significantly affected.