Epilepsy in Babies and Infants: A Parent's First Guide

19 January 2026

If your baby has had a seizure, or you're worried about unusual movements or behaviours that might be seizures, this guide is written especially for you. It's designed to give clear, reassuring, and up-to-date information from trusted UK sources like the NHS (last reviewed March 2025), NICE guidelines on epilepsies in children (updated January 2025), Epilepsy Action, and Young Epilepsy.

We'll walk you through what epilepsy means for very young children, the different ways seizures can look in babies (often subtle rather than dramatic), possible causes, how diagnosis works, treatment choices, day-to-day care at home, and where to find extra support. The focus is on helping you feel more confident and prepared, because early understanding and action really can make a positive difference to your baby's development.

You're not alone—many families in the UK go through this, and with the right information and medical support, the majority of children do very well. If you're concerned right now, please contact your GP, health visitor, paediatrician, or NHS 111 without delay (call 999 if a seizure is happening and lasts longer than five minutes, or if your baby isn't recovering).

Understanding Epilepsy

It's completely understandable if the term "epilepsy" feels scary or overwhelming when it's first mentioned in connection with your baby. You're probably wondering exactly what it involves, why it might happen to such a tiny person, and what it means for their future. Let's take this gently and clearly: epilepsy is a condition of the brain where its normal electrical signals get temporarily disrupted, leading to what we call seizures. In babies and infants—from newborns right up to around two years old—the brain is developing incredibly fast, with billions of connections forming every day. This rapid growth and change can sometimes make the electrical activity more prone to going off track, which is why seizures can appear in very young children, often in ways that look quite different from those in older kids or grown-ups.

Importantly, having one seizure doesn't automatically mean your baby has epilepsy. According to the latest guidance from the NHS and NICE (with updates as recent as January 2025), epilepsy is usually diagnosed only after two or more unprovoked seizures—meaning ones that aren't caused by something obvious like a very high fever (febrile convulsions are common in little ones but separate from epilepsy). Or, in some cases, if tests show there's a strong chance of more seizures happening in the future. Doctors always look at the full picture for babies: your detailed description of what happened, any patterns you've noticed, your baby's overall development, and any tests they might need. Sometimes a single event turns out to be something else entirely, like a harmless reflex or a one-off reaction.

Different Types of Seizures in Babies and Infants

One of the trickiest things for parents is that seizures in very young babies rarely look like the classic full-body shaking (tonic-clonic seizures) you might picture. In fact, those dramatic convulsions are uncommon in newborns and very young infants because their nervous system is still maturing. Instead, seizures tend to be shorter, subtler, and sometimes easy to miss or mistake for normal baby behaviours like stretching, hiccups, or daydreaming. Here's a rundown of the main types you might come across, based on trusted UK sources like Epilepsy Action, Young Epilepsy, and the NHS:

Infantile spasms (also called West syndrome or infantile epileptic spasms syndrome): These are particularly important to spot quickly. They usually start between three and twelve months, most often around four to eight months. Your baby might suddenly stiffen, bend forward at the waist (like doing a sudden crunch), fling their arms out or pull them in, or nod their head briefly. Each spasm lasts just one or two seconds, but they often come in clusters—several in a row, sometimes dozens over a few minutes—especially soon after waking up or coming out of a nap. They can look a bit like colic, reflux, or even startle reflexes, which is why parents' sharp observations are so valuable. Prompt recognition and treatment are crucial because early action can greatly improve outcomes for development.
Focal seizures (starting in one area of the brain): These might affect just one side of the body or face. You could see twitching on one cheek, one arm jerking, chewing or lip-smacking movements, staring blankly to one side, unusual eye rolling, or your baby seeming "switched off" for a moment. Sometimes these can spread and become more widespread, but they often stay limited.
Absence seizures: Your baby might suddenly pause, stare vacantly for a few seconds (as if zoning out), and then carry on as normal. These are brief—usually under ten seconds—and easy to overlook, especially if they're short and infrequent.
Tonic or clonic seizures: Less common in the very youngest babies, but possible. Tonic means sudden stiffening of the body or limbs, while clonic involves rhythmic jerking. In newborns and early infants, these might be more subtle or one-sided due to the immature brain.

Some seizures happen mainly during sleep, so you might only notice odd sounds (like grunting or unusual breathing), sudden jerks, or your baby waking up suddenly upset or confused. Keeping a simple note or video (if safe) of anything unusual can be incredibly helpful for doctors—your phone footage often shows things the eye misses in the moment.

Why Getting to Grips with This Early Really Matters

A baby's brain has amazing adaptability, known as plasticity. This means that with the right support and seizure control at an early stage, many children can catch up on milestones, continue developing well, and go on to lead happy, healthy lives. Research from Young Epilepsy and others shows that when seizures are managed promptly, the chances of good developmental progress are much higher. On the flip side, repeated or uncontrolled seizures over time can sometimes impact learning, movement skills, behaviour, or other areas of development—but the key message is that help is available, and specialists (like paediatric neurologists) work hand-in-hand with families to find the most effective approach for each child.

You're already taking a huge positive step by reading and learning. Many parents feel less frightened once they understand the basics and know what to watch for. In the next sections, we'll cover signs to look out for, how diagnosis happens, treatment choices, and practical day-to-day support. If anything you've seen in your baby matches these descriptions, or if you're still worried, please don't hesitate—contact your GP, health visitor, paediatrician, or NHS 111 today. For suspected infantile spasms especially, early specialist input makes all the difference.

Signs and Symptoms

As a parent, you're the person who knows your baby's everyday rhythms, moods, and little quirks better than anyone else. If something feels off—even if it's just a subtle change in how they move, look, or behave—trust that instinct. Your observations are often the first and most important clue that leads to the right help. Seizures in babies can be tricky because they don't always look dramatic; many are brief and gentle, sometimes lasting only seconds, and they can easily be mistaken for normal newborn or infant behaviours like stretching, hiccups, feeding reflexes, or tiredness.

What Seizures Might Look Like in Newborns (First Few Weeks to a Month or So)

In the very early weeks, a baby's nervous system is still maturing, so seizures often appear as "subtle" ones. These are the most common type in newborns and can include:

Eyes fluttering rapidly, rolling upwards, or staring fixedly to one side.
Small, repetitive twitching or jerking of the face (like one cheek or eyelid), one arm, one leg, or fingers/toes.
Lip smacking, chewing motions, sucking, or tongue movements as if feeding when they're not.
Cycling or pedalling-like movements with the legs.
Changes in breathing—brief pauses (apnoea), very fast breathing, irregular patterns, or grunting sounds.
Sudden stiffening of the body or arching of the back.
Moments where your baby seems less responsive, with eyes not focusing properly or seeming "switched off".

These episodes might happen in clusters (several close together), often during sleep or quiet moments, and your baby may not cry or wake fully. Because they're so subtle, parents sometimes worry they might be overreacting—but if they repeat or follow a pattern, it's worth getting checked.

Signs in Older Infants (A Few Months Up to Around Two Years)

As your baby grows and their brain develops further, seizure types can evolve, though they often remain quite different from the full-body convulsions seen in older children or adults. Common signs include:

Infantile spasms (also known as infantile epileptic spasms syndrome or formerly West syndrome): These usually start between 3 and 12 months (most commonly 4–8 months) and are especially important to recognise quickly. Your baby might suddenly bend forward at the waist (like a brief crunch or "jackknife" movement), with the head dropping, arms flinging outwards or pulling in towards the chest, legs scrunching up, or the whole body stiffening. Each spasm lasts 1–3 seconds, but they typically come in clusters—several to dozens in a row—often right after waking from a nap or sleep. They can look like a big startle, colic, reflux arching, or even tummy pain, but the repetitive pattern is a key giveaway. Early treatment following NICE guidelines (updated January 2025) can make a significant difference to development.
Focal (partial) seizures: Twitching or jerking on one side of the face or body, chewing/lip-smacking, staring blankly to one side, unusual eye rolling, or automatic movements like hand fumbling.
Absence seizures: Brief (usually 5–10 seconds) staring spells where your baby suddenly pauses, looks vacant, stops responding, and then carries on as if nothing happened—no falling or jerking.
Brief stiffening (tonic) or quick jerks (myoclonic) of arms, legs, or body—sometimes like repeated startles.
Sudden floppy moments (atonic) where muscle tone is lost briefly, perhaps causing a head drop or slump.

After an episode, many babies are sleepy, irritable, confused, clingy, or want extra comfort. Some might cry briefly or seem a bit "out of sorts" for minutes to hours.

Keeping Track of What You See

Writing things down or, better still, filming a short, safe video on your phone (without risking your baby's safety—e.g., don't move them if they're in a cot) can be a game-changer. Doctors often say that seeing the episode themselves helps enormously with diagnosis. Useful details to note include:

Exact time of day and how long each episode lasted.
What your baby was doing before (e.g., just waking, feeding, asleep).
A description of the movements (or the video itself).
What happened immediately after—did they recover quickly, seem drowsy, cry, or go back to normal straight away?

When It Might Not Be a Seizure

Lots of normal baby things can mimic seizures: the Moro (startle) reflex, reflux arching, sleepy twitches (hypnic jerks), benign myoclonus, or even wind causing grimacing. The main differences are that true seizures tend to be repetitive, follow the same pattern each time, and don't usually stop if you pick up, comfort, or distract your baby. Normal behaviours are more random and responsive to soothing.

If you notice any of these signs—especially if they happen more than once, in clusters, or seem to be increasing—please don't wait. Contact your GP, health visitor, or paediatrician right away, or ring NHS 111 for advice (they're particularly helpful for under-fives). For anything that sounds like infantile spasms, guidelines stress urgent referral to a paediatric neurologist for quick assessment and EEG. If a seizure is happening now and lasts longer than five minutes, your baby isn't breathing normally, or they don't recover afterwards, call 999 immediately.

Causes and Risk Factors

It's one of the first and most heart-wrenching questions that comes to mind when your baby is diagnosed with epilepsy: "Why did this happen to my little one?" As a parent, you want answers, and it's completely normal to feel a mix of worry, guilt, or even anger while searching for them. The honest truth is that in many cases doctors can identify a likely cause, but in others—sometimes up to half of all childhood epilepsies—the exact reason stays unclear even after thorough investigations. This is called idiopathic or cryptogenic epilepsy, and the good news is that it can still be very well managed with treatment, often with excellent outcomes.

Common Causes of Epilepsy in Babies and Infants

The causes fall into a few main groups, and understanding them can help make sense of what tests your specialist might suggest. These are drawn from the latest NHS information, NICE guidelines (updated January 2025), and advice from Epilepsy Action and Young Epilepsy:

Genetic factors: Some babies have changes (mutations) in genes that affect how brain cells communicate or handle electrical signals. These can be passed down in families or happen as a new change in the baby (de novo). Certain genetic epilepsies are well known, such as Dravet syndrome (often linked to changes in the SCN1A gene), which can start in the first year with prolonged seizures. Other syndromes like some forms of early infantile epileptic encephalopathy also have a genetic basis. Genetic testing is becoming more routine and can sometimes give clear answers and guide treatment.
Problems around the time of birth: Events that affect the baby's brain during labour or shortly after can lead to seizures. The most common is hypoxic ischaemic encephalopathy (HIE), where the baby experiences a shortage of oxygen and blood flow to the brain during a difficult delivery. Other issues include significant brain bleeds (intracranial haemorrhage), very low blood sugar at birth, or severe jaundice. These are more likely in complicated births, emergency caesareans, or when babies need resuscitation at delivery.
Infections: Infections that reach or inflame the brain can cause lasting changes. These include meningitis or encephalitis (inflammation of the brain itself) in the newborn period, or serious infections the mother had during pregnancy (such as cytomegalovirus, rubella, or toxoplasmosis) that affect brain development in the womb.
Brain development issues (structural abnormalities): Sometimes the brain doesn't form quite as expected while the baby is growing in the womb. This can include malformations like focal cortical dysplasia (abnormal clusters of brain cells), tuberous sclerosis (where small benign growths form in the brain and other organs), or other rare structural differences. These are often picked up on detailed brain scans (MRI).
Metabolic disorders: A small number of cases are linked to rare conditions where the body can't properly process certain chemicals, vitamins, or nutrients, leading to build-up that affects brain function. Examples include some amino acid disorders or mitochondrial conditions. These are usually tested for if seizures start very early or are hard to control.

Premature babies (born before 37 weeks) and those with very low birth weight are at higher risk overall because their brains are still extremely immature and more vulnerable to disruption.

Risk Factors That Increase the Chance of Epilepsy

Having one or more of these doesn't mean your baby will definitely develop epilepsy—it simply means the likelihood is a bit higher, so doctors will keep a closer eye:

A close family history of epilepsy or febrile seizures (especially if more than one family member is affected).
Prematurity, low birth weight, or known complications during pregnancy or delivery.
Previous serious infections, or febrile seizures that were prolonged or unusual.
A known genetic condition in the family (even if not epilepsy itself, such as certain neurodevelopmental syndromes).

Many parents feel guilty when they hear about birth complications or family history, but please know this: most of these events are not something you could have prevented, and they don't reflect anything you did or didn't do. You're already giving your baby the best possible start by being so attentive now.

What If No Clear Cause Is Found?

In a large number of babies—especially those whose seizures start after the newborn period and respond well to treatment—no specific cause is ever identified. This is called idiopathic epilepsy, and it's often one of the more hopeful categories because many children in this group outgrow their seizures completely or have them very well controlled with medication. The focus then shifts to effective treatment and supporting your baby's development.

Your paediatrician or paediatric neurologist will discuss which tests (like an EEG, MRI scan, blood tests, or genetic screening) might be helpful in your baby's case. Not every baby needs every test—it's tailored to what the history and examination suggest.

If you're feeling overwhelmed by the "why" question, it's okay to talk it through with your child's specialist, a genetic counsellor (if genetics are being explored), or a support organisation like Young Epilepsy. You're asking these questions because you love your baby deeply, and that matters more than anything. The next sections will cover how diagnosis happens and the treatment options available to help keep seizures under control and protect your little one's future.

Diagnosis Process

Hearing that your baby might have epilepsy can leave you feeling anxious and unsure about what comes next. The good news is that in the UK, the NHS and specialists are very experienced at getting to the bottom of things quickly and carefully for young children. Diagnosis is all about building a clear picture of what’s happening, and your account of what you’ve seen is the single most important starting point. Doctors really do take parents’ descriptions seriously—often more than any test result at first—because you’re the one who’s there every day and notices the tiny details.

First Steps After You Seek Help

If you’ve noticed something worrying—like a possible seizure or repeated unusual movements—the usual path starts with your GP, health visitor, or NHS 111. They will listen carefully to your story, ask about your baby’s overall health, development, and any family history, and then arrange a referral. According to the latest NICE guidelines on epilepsies in children, young people and adults (updated January 2025), babies and infants who have had a first suspected unprovoked seizure should be seen urgently by a paediatrician or, ideally, a paediatric neurologist (a doctor who specialises in children’s brain conditions). This is especially true for children under two, and even more so if the episodes sound like infantile spasms—many areas aim to see these babies within days or a couple of weeks at most.

You might be asked to bring any videos you’ve taken (these are gold dust for specialists), and the doctor will do a full examination. Sometimes, if the seizure has just happened or is ongoing, you’ll go straight to A&E or the paediatric assessment unit for immediate review.

Common Tests That Might Be Carried Out

Once referred, the team will decide which tests are needed to confirm whether it’s epilepsy, identify the type, and rule out other causes (such as low blood sugar, heart rhythm issues, reflux, or temporary reactions). Not every baby needs every test—the choice depends on age, what you’ve described, and what the doctor finds on examination. Here’s what’s commonly involved:

EEG (electroencephalogram): This is the key test for epilepsy. Small, sticky sensors are placed on your baby’s scalp to record the brain’s electrical activity. It’s completely painless, takes about 30–60 minutes (sometimes longer if they fall asleep naturally), and your baby can usually feed, cuddle, or play during it. The EEG might show unusual patterns—such as the characteristic chaotic “hypsarrhythmia” waves seen in infantile spasms—or it might be normal between seizures (which is common, so a normal EEG doesn’t always rule things out). If needed, they can do a longer or sleep-deprived EEG to increase the chance of capturing useful information.
Video EEG telemetry: If the first EEG is inconclusive, or to catch an episode on camera, your baby might be admitted for a video EEG. This combines continuous EEG recording with video monitoring, usually over a few days in hospital. It’s very helpful because the specialist can see exactly what the movements look like at the same time as the brain waves. Parents often stay with their baby throughout.
Blood tests: These check for infections, electrolyte imbalances (like low sodium or calcium), blood sugar problems, liver or kidney function, and sometimes metabolic disorders. In newborns, they might also test for vitamin deficiencies or rare inherited conditions.
Brain imaging: An MRI scan gives the clearest picture of the brain’s structure and can spot malformations, scars from birth injury, bleeds, or other changes. For very young or premature babies, an ultrasound scan through the fontanelle (soft spot) is sometimes used first as it’s quick and doesn’t require sedation. MRI usually needs sedation or a general anaesthetic for babies who can’t stay still, but the team will explain everything and support you through it.
Genetic testing: If the history or tests suggest a genetic cause (e.g., a syndrome with specific features, or if there’s a family history), a blood sample might be sent for genetic analysis. This can include targeted gene panels or broader whole-exome sequencing. Results can take weeks to months, but they sometimes give a precise diagnosis and guide treatment choices.

The whole process can feel drawn out because doctors want to be thorough and exclude other explanations before labelling it epilepsy. Your detailed notes, videos, and answers to questions help speed things along enormously.

What Happens Once a Diagnosis Is Made

When the team has enough information, they’ll explain the findings: whether it’s epilepsy, what type of seizures it is, any identified cause (if known), and the recommended treatment plan. You’ll have the chance to ask questions, and they’ll usually give you written information, contact details for the epilepsy nurse specialist (many hospitals have dedicated ones), and advice on what to do if another seizure happens. Follow-up appointments are arranged to monitor progress, adjust treatment if needed, and support your baby’s development.

Throughout, the focus is on working with you as a team—parents are central to the care plan. Many families say that once they have a name for what’s happening and a clear path forward, the anxiety starts to ease, even if it’s still a lot to take in.

If you’re waiting for an appointment or have new concerns in the meantime, don’t hesitate to ring your GP, the paediatric team, or NHS 111. For suspected infantile spasms especially, the advice is to push for prompt specialist review—early treatment can make a real difference. You’re advocating brilliantly for your baby by staying on top of this.

The next section will cover the treatment options, so you’ll have a sense of what might come next.

Treatment Options

The main goal of treating epilepsy in babies and infants is to stop or greatly reduce seizures as quickly and safely as possible, while protecting your little one's development and keeping any side effects to a minimum. Every baby's situation is unique, so the paediatric neurologist (or epilepsy specialist) will choose treatments based on your baby's age, the exact type of seizures, any underlying cause (if known), and their overall health. Decisions are always made together with you, and you'll be given clear information about benefits, possible side effects, and monitoring.

Treatment follows the most up-to-date UK guidelines, including NICE recommendations for epilepsies in children (last updated January 2025), which stress urgent, specialist-led care—especially for conditions like infantile spasms where starting effective treatment early can make a significant difference to long-term outcomes.

First-Line Medicines (Anti-Seizure Medications)

For most babies, the first step is starting one or more anti-seizure medicines (also called anti-epileptic drugs or ASMs). These are usually given as liquids that are easy to administer.

For infantile spasms (a common and important type in babies 3–12 months old):

The standard first-line approach, per NICE guidelines (updated January 2025), is combination therapy with high-dose oral prednisolone (a steroid) and vigabatrin. This combination is recommended for most cases not caused by tuberous sclerosis, as it stops spasms quickly in many babies.
If your baby is at higher risk of steroid side effects (e.g., due to other health issues), vigabatrin alone might be used first.
For infantile spasms linked to tuberous sclerosis, vigabatrin alone is the first choice, with prednisolone added if needed after a week.
These treatments are started rapidly—often within days of diagnosis—because prompt control helps protect brain development. The specialist team will monitor closely (with weekly checks, repeat EEGs, and blood pressure/glucose tests) and adjust doses as needed. Prednisolone can cause temporary side effects like increased appetite, irritability, or higher infection risk, so you'll get a steroid card, advice on when to seek help, and support to manage them.

For other seizure types (such as focal, absence, or myoclonic seizures):

Common first-line options include levetiracetam (often well-tolerated with fewer side effects) or other medicines like sodium valproate (with careful safety considerations).
The choice depends on the seizure pattern—your specialist will explain why a particular medicine is best for your baby and start at a low dose, increasing gradually while watching for how well it works and any side effects.

Medicines are usually very effective—many babies achieve good seizure control or even become seizure-free. The epilepsy specialist or paediatric epilepsy nurse will guide you on giving doses, what to watch for (like drowsiness or changes in behaviour), and regular follow-ups to check progress, growth, and development.

If the First Medicines Aren't Enough (Drug-Resistant Epilepsy)

If seizures continue despite trying appropriate medicines (this happens in a minority of cases), the team might suggest additional or alternative options:

Ketogenic diet: This is a carefully planned, high-fat, low-carbohydrate diet that can dramatically reduce seizures in some children who don't respond well to medicines. It's supervised by a specialist dietitian who tailors it to your baby (often as pureed foods or special formulas for infants). It can be very effective for certain syndromes, and many families find it manageable with support. The dietitian team will teach you how to prepare it safely and monitor for side effects like constipation or kidney stones.
Other advanced treatments: In rare situations where seizures come from a specific, identifiable area of the brain (found on scans), surgery to remove or disconnect that area might be considered. This is only after thorough evaluation at a specialist centre. Other options include devices like vagus nerve stimulation (VNS), where a small device is implanted to send electrical signals that help reduce seizures.

Newer medicines have also become available on the NHS in recent years. For example, fenfluramine (Fintepla) is now funded for certain severe syndromes like Dravet syndrome (since 2022) and Lennox-Gastaut syndrome (from February 2025 onwards) in children aged 2 and over, as an add-on therapy. If your baby's epilepsy fits one of these, your specialist will discuss whether it's suitable.

Important Things to Know About Treatment

Never stop, change, or miss doses of medicines without specialist advice—sudden changes can trigger seizures or worse.
Regular check-ups (often with an epilepsy nurse specialist) help ensure the treatment is working, side effects are managed, and your baby is reaching milestones. They'll also support your baby's overall development through therapies if needed.
Many babies respond really well—some outgrow seizures completely as they grow older, especially with early, effective treatment.

You're part of the team every step of the way, and specialists are there to answer your questions, adjust plans, and provide reassurance. If treatment starts or changes feel overwhelming, talk to your paediatric epilepsy nurse or organisations like Young Epilepsy—they're brilliant at helping parents feel supported.

The next section covers daily management and practical tips for home, so you'll feel more equipped day to day.

Daily Management and Support

Once treatment begins and seizures are better controlled (or even stop for a while), many families find that life starts to settle into a new, manageable routine. It won't always feel easy—there will be ups and downs—but with practical steps, good support, and time, you can help your baby thrive while keeping them as safe as possible. The focus here is on everyday things you can do at home, ways to stay on top of medicines, supporting your little one's development, and—very importantly—looking after yourself and the rest of the family too.

Creating a Safe Home Environment

Babies with epilepsy are often at slightly higher risk of injury during a seizure, especially if they happen unexpectedly, so small changes around the house can make a big difference. You don't need to turn your home into a fortress—just thoughtful adjustments:

Fit soft corner protectors on sharp furniture edges and low tables.
Use safety gates at the top and bottom of stairs once your baby starts moving around more.
During bath time, always stay right there—never leave your baby alone in the water, even for a second. Many parents find a bath seat or supportive ring helpful, but supervision is the key thing.
For sleep, consider a movement or breathing monitor if seizures tend to happen at night (your epilepsy nurse can advise on reliable ones). Some families lower the cot mattress or remove bumpers to reduce any risk.
Keep floors clear of small toys or hazards, and think about soft play mats in play areas.

These are the same safety steps many parents take anyway, but they're especially useful when seizures are part of the picture.

Managing Medicines and Spotting Triggers

Consistency with medicines is one of the most important things for good seizure control.

Give doses at exactly the same times each day—some parents set phone reminders or use apps like Medisafe or the NHS app to help.
If your baby is on liquid medicines, use an oral syringe for accurate dosing (your pharmacist will show you how).
Common triggers that can make seizures more likely include being overtired, getting ill (especially with a fever), missing even one dose, or sometimes flashing lights (though this is rare in very young babies).
Keeping a simple seizure diary helps spot patterns—note the date, time, what happened before, how long it lasted, and how your baby was afterwards. Apps like Epilepsy Tracker or a basic notebook work well. Sharing this diary with your specialist team is incredibly helpful at appointments.

If you ever struggle with giving medicines (e.g., your baby spits them out), talk to your epilepsy nurse—they often have tips or can suggest alternatives like different flavours or forms.

Supporting Your Baby's Development

Seizures and some medicines can sometimes affect development, but early support makes a huge difference. Babies' brains are wonderfully plastic, meaning they can adapt and learn with the right help.

Watch milestones closely (rolling, sitting, reaching, babbling, smiling). If anything seems delayed, your health visitor, paediatrician, or epilepsy team can refer to early intervention services.
Therapies such as physiotherapy (for movement), occupational therapy (for play and hand skills), or speech and language support (for communication) are often available through the NHS—many start as home visits.
Everyday things matter most: plenty of tummy time, singing, reading, cuddles, and interactive play all help brain connections grow. If your baby has infantile spasms or another syndrome where development can be affected, specialists might suggest specific developmental programmes.

Regular reviews with your paediatrician or neurologist will include checking growth, development, and any extra support needed.

Looking After Yourself and Your Family

Caring for a baby with epilepsy can be emotionally and physically tiring—you might feel constantly on alert, or worry about what the future holds. It's okay to admit that. Looking after your own wellbeing helps you be there for your baby.

Connect with other parents: Groups like Young Epilepsy's online forums, Epilepsy Action's family support network, or local parent coffee mornings can be a lifeline. Hearing from others who've been through the same thing often reduces the feeling of isolation.
Build a clear emergency plan with your specialist team: Know exactly what to do if a seizure happens (stay calm, time it, place your baby safely on their side once it stops if they're not already, don't put anything in their mouth). Call 999 if it lasts longer than five minutes, if another starts straight after, if breathing is difficult, or if your baby doesn't recover properly.
Share basic first-aid info with family, childminders, or nursery staff: A simple one-page summary from your epilepsy nurse (including when to call for help) gives everyone confidence.
Make time for yourself—even short breaks, talking to a friend, or accessing counselling through your GP if you're feeling overwhelmed.

Many parents say that after the initial shock, they find strength in the routine, the support networks, and seeing their baby smile, grow, and respond to love and care.

You're already doing so much by being informed and proactive. The final section will point you to reliable resources and when to reach out for more help. Remember, thousands of UK families manage epilepsy every day, and with time and the right team around you, most children do really well.

Resources and When to Seek Help

As a parent navigating epilepsy with your baby, knowing exactly when and where to turn for help can bring huge peace of mind. This section covers the key situations that need urgent action, everyday support options, and the most reliable UK resources available. The information is based on current NHS guidance, NICE recommendations (updated January 2025), and advice from Epilepsy Action and Young Epilepsy.

Emergency Situations — Call 999 Immediately If:

These are the times when quick action is essential to keep your baby safe:

It’s the first seizure your baby has ever had (even if it seems short or mild—doctors need to assess it urgently).
A seizure lasts longer than five minutes (this is called status epilepticus and requires immediate treatment).
One seizure ends but another starts before your baby has fully recovered (no return to normal alertness or behaviour).
Your baby has difficulty breathing during or after the seizure, turns blue, or isn’t breathing normally.
Your baby doesn’t recover properly afterwards (e.g., remains very drowsy, confused, floppy, or unresponsive).

While waiting for help, stay calm, time the seizure (use your phone), place your baby safely on their side if possible once the jerking stops (to protect their airway), and don’t put anything in their mouth. If you’ve been trained in rescue medication (like buccal midazolam), use it as prescribed if the seizure reaches the time limit.

For Non-Emergency Advice or Concerns

If it’s not an emergency but you’re worried—perhaps a seizure was shorter but unusual, you have questions about medicines, or your baby seems off—reach out sooner rather than later:

Call NHS 111 (free, 24/7) for advice, especially helpful for children under five—they can guide you on whether to see a GP, go to urgent care, or wait.
Contact your GP, health visitor, or the paediatric team for routine queries or if something feels different.
If your baby has an epilepsy specialist nurse (most specialist centres have one), they’re often the quickest and most supportive point of contact—many offer phone or email advice.

Trusted UK Resources for Parents

These organisations are dedicated to supporting families and provide accurate, parent-friendly information:

Epilepsy Action

Helpline: 0808 800 5050 (free, open Monday–Friday 9am–5pm, plus online chat)
Website: epilepsy.org.uk
They have excellent resources specifically for parents of babies and young children, including factsheets on seizures, medicines, first aid, and emotional support.

Young Epilepsy

Specialises in children and young people with epilepsy
Website: youngepilepsy.org.uk
They offer a free downloadable handbook for parents of infants and young children, plus guides on development, daily life, and family support. They also run online forums and parent support groups.

NHS Website

nhs.uk — search “epilepsy in children” or “infantile spasms” for clear, evidence-based guides written in plain language, including what to expect from tests and treatment.

Your Specialist Team

Your paediatrician, paediatric neurologist, or epilepsy specialist nurse are your main ongoing contacts. They know your baby’s specific situation and can answer questions, adjust plans, or refer for extra help (e.g., therapy or counselling).

Many parents find joining online communities (through Young Epilepsy or Epilepsy Action) helps them feel less alone—sharing tips and stories with others in the same position can be really reassuring.

You are doing an incredible job caring for your baby through what can feel like a daunting time. With the right information, support, and medical team, many families see seizures become well controlled, and children go on to develop and thrive. Things often get easier with time, especially as you build confidence and routines. Reach out whenever you need to—you don’t have to manage this alone. Take care of yourself too, and know that help is always just a call or click away.