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of everyone affected by epilepsy

 

Epilepsy in babies

If a baby has epilepsy, it means they have had seizures. This information is about seizures in 2 groups of babies:

  • Babies under 1 month old (newborn or neonates)
  • Babies between the age of 1 month and 1 year (infants)

Seizures in babies under 1 month old (newborn or neonates)

The brains of newborn babies are sensitive to seizures in the first week of life. Some babies will continue to have seizures as they get older, but some babies will never have any more. It really depends on:

  • The type of seizures they have
  • Why they started
  • When they started

What types of seizures do newborn babies have?

Subtle seizures – In babies, seizures might not be obvious to an onlooker. Their seizures may show as changes in breathing patterns or movements of their eyelids or lips. They may have bicycling movements of their legs, brief jerks or episodes of stiffening of their body and limbs. They might be less alert than usual. It might be difficult to attract their attention and their eyes may not focus properly.

Clonic seizures - the baby may have jerking or stiffening of an arm or leg that can switch from side to side.

Myoclonic seizures – the baby’s whole upper body may suddenly jerk forward. Or both their legs may jerk up towards their stomach, with their knees bent.

Tonic seizures – the baby’s body will stiffen and their eyelids might flicker.

Seizures in babies between the age of 1 month and 1 year (infants)

What types of seizures do infants have?

Clonic seizures - the baby may have jerking or stiffening of an arm or leg that can switch from side to side.

Infantile spasms - the baby may bend forward and their body, arms and legs go stiff. Or their arms and legs might be flung outwards. These seizures usually affect both sides of the body equally.

Myoclonic seizures – the baby’s head may appear to be nodding, or their whole upper body may suddenly jerk forward. Sometimes babies’ legs jerk up towards their stomach, with their knees bent.

Tonic seizures – the baby’s body will stiffen and their eyelids might flicker.

Focal seizures - the baby will stop what they are doing, and they won’t be aware of what is going on around them. They may stare, or move their eyes or head to one side. One side of their body might jerk, and this could change from one side to the other. The baby might go on to have a tonic-clonic (convulsive) seizure.

What causes seizures in newborn babies and infants?

There are many causes of seizures in babies. In around 8 out of 10 babies with seizures, a cause will be found. These are the most common:

  • Being born very early, and having bleeding inside the brain. This is called intracranial haemorrhage
  • Being born on time but having a lack of oxygen to the brain. This is called perinatal hypoxia and can cause an injury to the brain called ‘hypoxic-ischaemic encephalopathy’
  • Having low levels of glucose, calcium or sodium in the blood
  • Having an infection such as meningitis or encephalitis
  • Being born with some damage to their brain. This is called cerebral dysplasia or dysgenesis. Cerebral means relating to the brain. Dysplasia or dysgenesis means unusual development
  • Inheriting a medical condition, such as benign neonatal convulsions or having a metabolic disorder such as GLUT 1 deficiency or a genetic disorder such as Dravet syndrome

For around 2 or 3 in 10 babies, no cause is found.

How are seizures diagnosed in newborn babies and infants?

It can be difficult to recognise seizures in babies and infants. That’s why it’s important that they are referred to a doctor who has had specialist training in diagnosing and treating epilepsy. The specialist will ask about:

  • The baby’s behaviour
  • Whether all the seizures look the same, and last the same length of time
  • Whether the seizures happen while the baby is awake or asleep, or both
  • Whether the seizures are caused by changes in the baby’s posture or when they are doing different things
  • Whether the seizures interfere with, or stop, the baby’s activities such as feeding
  • Whether you can stop the seizures after they have started

Recording any behaviour changes on a mobile phone could be very useful to show the specialist. It can help with making the diagnosis.

Epilepsy Action has more information about diagnosing epilepsy

The specialist may then arrange for some, or all, of the following tests.

Electroencephalogram (EEG)

The baby’s brain is constantly producing tiny electrical signals. During an EEG test, electrodes (flat metal discs) are placed on their head. The electrodes pick up the electrical signals from their brain and record them on an EEG machine.

The EEG can give information about the electrical activity that is happening in your baby’s brain at the time of the test. Sometimes, but not always, it can be very helpful in showing whether a baby is actually having seizures, rather than abnormal movements. This is because the brains of babies are very different to the brains of older children, and not all of their seizures show up on the EEG. However, if the EEG is very abnormal, it will tell the doctors more about the baby’s epilepsy.

Epilepsy Action has more information about EEGs

CT scans (computed tomography)

A CT scan is a type of X-ray that can show the physical structure of the brain. It doesn’t show if the baby has epilepsy. But it might show if there is anything in their brain, such as a scar, or damaged area, that could cause epilepsy. Not every baby will need to have a CT scan.

Epilepsy Action has more information about CT scans

MRI scans (magnetic resonance imaging)

An MRI scanner uses radio waves and a magnetic field to show the physical structure of the brain. It’s more powerful than a CT scanner and has a higher chance of showing whether there is a cause for the baby’s epilepsy. Not every baby will need to have an MRI scan.

Epilepsy Action has more information about MRI scans

Blood tests

Blood tests are used to check the baby’s general health, and to look for any medical conditions that might be causing their epilepsy. They can also be used to find out if the seizures are not caused by epilepsy, but another medical condition. An example would be low blood sugar (glucose) or low calcium levels. 

Some babies will be referred to a genetics department for further testing. This will depend on a number of things, such as whether they have any other medical issues, and their family history. The referral will usually be made by the paediatrician or the paediatric neurologist.

Treatment

There is a large range of epilepsy medicines used to treat seizures in babies. The choice of medicine will depend on:

  • The baby’s seizure type
  • The age when the epilepsy began
  • The cause of the epilepsy, if known
  • Whether the baby has any other medical conditions, or takes any other medicines
  • The likely outlook for their particular type of epilepsy

Some of the epilepsy medicines used in babies include phenobarbital, phenytoin, clonazepam, carbamazepine, stiripentol, sodium valproate, levetiracetam, and vigabatrin. Pyridoxine (vitamin B6) is also sometimes used. An epilepsy specialist might also prescribe other epilepsy medicines, depending on the baby’s condition.

Epilepsy Action has more information about treating epilepsy

Long-term development

The outlook for a baby’s long-term development depends on what type of epilepsy or epilepsy syndrome your baby has. Their epilepsy specialist will be in a better position to discuss your baby’s outlook once all the test results are available.

Further information

The health visitor, epilepsy nurse, or epilepsy specialist may be able to give you information about the baby’s condition. 

The organisation Contact may be able to provide information and details of self-help groups for parents of babies with specific conditions, including the less common types of epilepsy.
Tel: 0808 808 3555
Website: cafamily.org.uk

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact the Epilepsy Action Helpline on freephone 0808 800 5050.

Code: 
F009.02

Epilepsy Action would like to thank Dr Amanda Freeman, Consultant Paediatrician at Queen Alexandra Hospital, Portsmouth, UK for her contribution to this information.

Dr Amanda Freeman has no conflict of interest to declare.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated May 2016
    To be reviewed May 2019

Comments: read the 11 comments or add yours

Comments

Hello. My daughter had a seizure debut in three months. Now we are six months old. For three months we have changed a few drugs, but nothing has helped us, I give below a short outline of past therapy:
MRI 2x - clean, EEG in dynamics - without manifestation of foci. Clinical symptoms are frequent and severe seizures (attacks).

1. Depakin (Valproic Acid) syrup. the maximum value in the blood, did not help, was canceled.
2. Keppra (Levetiracetam). no changes have been made - was cansled.
3. Tegratol (Karambazepin). not digested in the blood, too, there was no improvement - was cansled.
4. Now Phenobarbital + phenytoin, there are no improvements, blood level of drug in referential interval, we are waiting for improvements.
the diagnosis is not put, because there is no reason.

But the worst thing is that nothing helps. What should we do?

Submitted by Vladimir on

Hi

It can often be difficult to make a firm diagnosis in a very young child. Here is our information about epilepsy in babies.

If you are in the UK hopefully your baby is being seen by a paediatric neurologist. If not you could talk to your GP about maybe getting a second opinion from someone more specialised.

If you are in another country then hopefully there is a local epilepsy organisation you can contact.

I do hope something will work for your daughter soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

How long do babies with complex partial epilepsy live for? My daughter has had seizures since she was 4 days old. She has global developmental delays and some sort of neurological blindness and is therefore registered severely sight impaired. She has general brain white matter immaturity. She is now 1 but functioning more at 3months level.

Submitted by Anjana Patel on

Hi Anjana

That does sound like things for your baby and you are very difficult. The answer to your question will depend on what overall diagnosis your daughter has, rather than what seizures she is having. Sorry we can’t help you more.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My son is 17 months old he just started carolling, he had a seizure last week this was his second seizure the first one was 6 months ago but after this seizure he had stop doing everything like carolling, rolling over, holding his bottle. I just want to know if this is normal or not?

Submitted by Hina on

Hi

That sounds distressing to see that your son is not doing the things he was.

It doesn’t sound like your son has a diagnosis at the moment? As you have probably seen from the information it can be really difficult to get a definite diagnosis in a very young child. And until you have a diagnosis it is not really possible to say what other behaviour might go with that diagnosis. Hopefully you are talking to the doctor about this. They should be doing some tests to see if they think he has epilepsy or not.

I do hope they are able to give you some useful information soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

What happens if continuous seizures are absorbed in 4 months old baby born with SWS. Even after medication.

Submitted by Ramprasad on

Hi Ramprasad

Thanks for your message. Unfortunately the seizures associated with Sturge-Weber syndrome can sometimes be difficult to control, even with epilepsy medicine. But if this is the case then doctors may consider epilepsy brain surgery as an alternative. And the outcome of surgery can be excellent. We have more information Sturge-Weber syndrome here that you may find helpful:

https://www.epilepsy.org.uk/info/syndromes/sturge-weber-syndrome

Regards

Jess

Epilepsy Action Helpline Team

Submitted by Jess-Epilepsy Action on

Hi

Our baby has been born prematurely 3 weeks ago and we have been in Nicu since then. He has been diagnosed with Early Infantile Epileptic Encephalopathy and they are giving him keppra levetiracetam. I am suspicious of the diagnosis and am wondering what would be the effect of giving an epileptic medication to a premature baby who is misdiagnosed.

Submitted by Mike Ridge on

Hi Mike,

This sounds like a difficult time for you and your family.  Levetiracetam can be used to treat early infantile epileptic encephalopathies. There is a link here to an abstract which explains a little more about this.

We aren’t medically trained however so we don’t know if there could be any long term effects of giving levetiracetam to a premature baby who is misdiagnosed. The epilepsy specialist who is treating your son should be able to tell you more about this.

It is important to get the right diagnosis for epilepsy so if you are concerned about your son’s diagnosis you can ask for a second opinion. If you find out anything more and think we can be of any help you would be welcome to contact us at the Helpline.

Kind Regards

Mags

Epilepsy Action Helpline Team 

Submitted by Mags - Epilepsy... on

My 1 year old daughter os diagnosed with epilepsy but the results of her ultrasound and EEG is normal.
She's taking maintenance Phenobarbital and Levetiracetam.

Sometimes she starts to stare blankly or sometimes chewing and sometimes shout very loud, and I'm afraid it will cause her seizure.

Is there any thibg i can do to stop or prevent it from happening?

Thank you very much!

Submitted by maicah manalaysay on

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