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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 The Information Standard.

  • Updated May 2016
    To be reviewed May 2019

Comments: read the 18 comments or add yours

Comments

My baby has infantile spasm siche he was 3 months old. Now the situation is under control and he is on medications. Does these spasms lasts long? Is it 100% curable?

Submitted by Neeru on

Hi Neeru

That’s good news that your baby has responded well to treatment.

His progress will depend on exactly what’s happening for him.

But here is our information about infantile spams. I hope that’s helpful for you.

And if you are outside the UK you may want to see if there is an epilepsy organisation in your country.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My sisters son when he was one day old got seizures and treatment was given to him and right now no seizures were occurring but after giving treatment to him he became completely lean in such manner bones are able to see and skin became very loose and he his not at all crying not all playing with his hands and legs is there anything to worry about him his he is completely alright

Submitted by Manasa on

Dear Manasa

It sounds like you are really worried about your sister’s son.

It would be best for your sister take her son to a doctor so they can look for possible reasons for why this is happening. If it is related to his epilepsy medicine they may change him to a different one.

If we can be of any more help, please feel free to contact us again.

Regards

Diane

Epilepsy Action Helpline Team

 

Submitted by Diane-Epilepsy ... on

My son had seizures from the third day of his birth. He was put on medication but after a month he stopped responding to treatment. He was hospitalized twice by the age of four months and all possible tests including genetic and MRI were done. I had actually lost all hope of his being well again. But then I was directed to Dr R K Sabbharwal in delhi. After a comprehensive treatment of two years, my son became seizure free and medicine free. He is now 11 years old, in good health.. Good at studies and sports. I am sharing this story because I want to tell that there is hope of kids leading a normal life even after having severe seizures in infancy. A lot of effort is definitely required from our side as antiepilectic drugs slow them down in the initial stages of brain development... But with development clinics and constant monitoring the kids can be a part of mainstream... So dont loose hope

Submitted by Sheetal on

My 5 month old Grandson had a seizure 3 weeks ago he only had the 1 but was also having absence seizures (up to 11 a day)he was hospitalised for 5 days. The Doctors diagnosed Benign familial epilepsy in infancy and started him on Keppra. They did EEG and CT and lots of blood tests that showed nothing. After a week the absence seizures stopped for 5 days, his Keppra was increased to twice a day, then 2 days after the increase he started the absence seizures again. Only a couple a day but this morning he has had 2 proper fits and his now at the hospital waiting to be seen by the Doctor. Is this to be expected or could they be wrong with the diagnosis

Submitted by Terri Moore on

Hi Terri

 

You will probably have had a read of our information about epilepsy in babies: https://www.epilepsy.org.uk/info/children-young-adults/newborn

 

As you can see, it is really difficult to accurately diagnose a baby or young child with a particular type of epilepsy. This is because the brain is still forming.

 

But hopefully the doctors will be able to offer some reassurance now he is in hospital.

 

It must be a very upsetting time for you all. I hope things become clearer and more settled for your grandson very soon.

Regards

 

Cherry  

Epilepsy Action Helpline Tea

Submitted by rich on

My wife gave birth to a set of twins (boys). The first one weighed 2.5kg while the second weighed 2.1kg at birth. The first twin was admitted after 12 hours for seizure, he was immediately place on oxygen and also given glucose. He was not allowed to take breast milk instead he was taking baby milk. He never really cried all though his stay at the hospital and he was always looking at one direction he reduced in weight (2.2kg). He was not discharged until after 26 days. He was given an appointment a week later and by the he visited we were told by the hospital management that he is free from sizure that he had gained more weight (2.45kg against 2.2kg) we left with.

But here is 5 months plus he still as traces of seizure, he even cries a lot especially at night and he hardly sleeps even while his twin is sleeping or playing. He keeps to himself.

Kindly give us your advice.

Your sincerely
Awolusi Tolumi

Submitted by Awolusi Tolumi on

Hi Awolusi

That sounds like a distressing situation for you. We’re not medically trained so can’t offer you a diagnosis.

But as you can see from our web information it can be very difficult to diagnose exactly what is happening for such a  young child.

Hopefully you are able to talk with your health visitor or doctor about this. And that things settle down for him soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

I just wanted to know what kind of seizures I am having when I have them I don't even know when I have them I can be having a conversation with someone and then all of a sudden I will go into one I when I finally come to myself I just think I am asleep the only way I know is when I have a sore on my tongue and or when my pants is wet they say I just shake I have had fell off the bed on to the floor while having one and I don't have them all the time and there will be times I will have two to three at a time some times I would have one it's very can you please help me with that the doctors test me and can not figure out what kind I am having cause it's not epilepsy or grandma seizures is what I was told.

Submitted by denise conard on

And I never had seizures before but I was told by my mom that when I was a baby I had one then I never had one for the longest time on up to when I turned 21 sometime after I had my first born

Submitted by denise conard on

Hi Denise

If the doctors have decided you don’t have epilepsy but you’re still having seizures, then there is a possibility that you’re having non-epileptic or dissociative seizures.

The important thing is that you are given a diagnosis and that someone talks to you about what might help. For some people some kind of talking therapy can be useful in getting these seizures under control.

It’s possible what happened for you as a baby was a febrile seizure. These are not epileptic seizures but are very common in young children.

I do hope you get a clearer understanding of what is happening for you, and that you get some help soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

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

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