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Epilepsy in babies

The risk of seizures in babies is highest in the first year after birth and particularly within the first month of life. This is especially so for babies born too early. This information is about seizures in the 3 groups of babies:

It describes some of the most common seizures these babies have, as well as some of the causes.

Information about febrile seizures, which are seizures triggered by a high temperature are not included here.

Seizures in pre-term or premature babies

What causes seizures in pre-term or premature babies?

Babies born prematurely are highly vulnerable to brain injury and susceptible to seizures in the first weeks of life.

The most common causes of seizures in pre-term babies are brain haemorrhages and infections, although the cause is not known for all babies. Babies with a low birth weight seem to be especially at risk of seizures. 

What types of seizure do pre-term or premature babies have?

Seizures in these very young children can be difficult to spot, as they are often subtle, with very few outward signs. But they may be spotted if the baby is given an electroencephalogram (EEG).

Seizures in new-born babies

What causes seizures in new-born babies?

  • Structural causes - 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’ Or 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
  • Metabolic causes - Having low levels of glucose, calcium or magnesium in the blood
  • Infectious causes - Having an infection such as meningitis or encephalitis
  • Genetic causes - Inheriting a medical condition, such as self-limiting familial infantile seizures, or having a  disorder such as
  • GLUT 1 deficiency, or a genetic disorder, such as Ohtahara syndrome.

What types of seizure do new-born babies have?

  • Subtle seizures – Their seizures might not be obvious to an onlooker. They 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. Subtle seizures are the most common seizure types in new-born babies.
  • 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 eyes or head might turn to one side

Seizures in infants

What causes seizures in infants?

  • Structural causes - 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’ Or 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
  • Metabolic causes - Having low levels of glucose, calcium or magnesium in the blood
  • Infectious causes - Having an infection such as meningitis or encephalitis
  • Genetic causes - Inheriting a medical condition, such as self-limiting familial infantile seizures or having a disorder such as GLUT 1 deficiency, or a genetic disorder, such as Dravet syndrome

What types of seizure do infants have?

These are more varied than in new-born babies and include:

  • Clonic seizures - the baby may have jerking or stiffening of an arm or leg, which 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 eyes or head might turn to one side
  • Focal seizures – The baby will stop what they are doing and may not 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
  • Infantile spasms - The baby’s arms fling outward as their knees pull up and their body bends forward. Each spasm lasts for 1-2 seconds but they can also happen in clusters. This can be quite distressing for the baby

Diagnosing epilepsy in new-born babies and infants

If it’s suspected that your baby might have epilepsy, it’s important they are referred to a specialist. This should be a doctor who has specialist training in diagnosing and treating epilepsy in this age group. The specialist will ask whether:

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

 You could help the specialist by recording any behaviour changes on your mobile phone. The specialist may arrange for some, or all of, the following tests:

  • Blood and urine tests. These are to check the baby’s general health, and to look for any medical conditions that might be causing their seizures. 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
  • An electroencephalogram (EEG)
  • MRI scan

Epilepsy Action has more information about diagnosing epilepsy

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 seizures started
  • The cause of the epilepsy, if known
  • Whether the baby has any other medical condition, or takes any other medicine
  • The likely outlook for their particular type of epilepsy

Some of the epilepsy medicines used in babies include carbamazepine, clonazepam, levetiracetam, phenobarbital, phenytoin, sodium valproate, stiripentol 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

Outlook for babies who develop epilepsy when they are less than a year old

Some babies will continue to have seizures as they get older, but some babies will never have any more. It really depends on when the seizures began, and what type of seizures they have.

Your baby’s specialist should be able to tell you what the outlook is for your baby. They will use all the information about your baby’s seizures, development and any other medical conditions they have to help them with this.

Disability Living Allowance (DLA)

Your baby might qualify for DLA, and you don't need to wait for a formal diagnosis to make a claim. But you will need to show that your baby needs substantially more care or supervision than other children of the same age who don't have a disability or health condition.

DLA can be claimed from the age of three months, or from birth if your child has a terminal illness.

Contact can tell you more about claiming DLA and other welfare benefits.
Website: contact.org.uk
Email: info@contact.org.uk
Phone: 0808 808 3555

SCOPE can offer advice and information about welfare benefits and many aspects of looking after a child with epilepsy and disabilities.
Website:scope.org.uk
Email: helpline@scope.org.uk
Phone: 0808 800 3333

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: 
F009.03

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 November 2019
    To be reviewed November 2022

Comments: read the 10 comments or add yours

Comments

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

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...

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

My baby of 1year is still yet to sit properly and regconiz things also those not move her right hand and leg often like the way she moves left side, the dr said she is having brain seizure but did not specify the type,
she was place on only sodium valproat two months ago, I want to know what her chances of recovery fully

Submitted by Gloria

Hello
My 6 months old baby Becomes bluishgreen suddenly, he doesnot move for abt 2 to 3 minutes, his eyes becomes teary and afterwards becomes lethergic and sleep. It happens 5 to 6 times a day.

Submitted by Deki Wangmo

Dear Deki

Thank you for your post regarding your son. 

It would be best to talk to your doctor about your son’s symptoms. As trained epilepsy advisers, we can give general information on epilepsy and related issues. But we’re not able to make a diagnose. There are a number of medical conditions can cause symptoms similar to epilepsy.

If the doctors thinks it could be epilepsy, we have information on epilepsy and how epilepsy is diagnosed.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps...

Hi

I'm a mother of 2 boys and I'm epileptic. I often worry about my kids since the the second one was premature born at 36 weeks. He often jerk his left leg when he's asleep for 2 seconds. Should I be worried?

Submitted by Mini

Hi there,

Thank you for your message.

It is possible that the jerking movements your son makes in his sleep could be seizure related. But lots of children experience jerks or unusual movements while they’re asleep which are perfectly normal.

It would be a good idea to talk to your son’s GP about this if you’re worried. If it’s possible to get a video of these movements, it could be helpful to show them what the jerks look like. If his GP is concerned about the jerks, they will likely refer him to a specialist, probably a paediatrician.

You may also find out information about inheriting epilepsy useful.

If we can be of any more help, please feel free to contact the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

Submitted by Jess - Epilepsy...

Hi my son has seizures at 8 days after birth. How ever in EEG and MRI are normal. Doctor suggested to use levipil and Pyrodoxine and still he is getting seizures. Dr are saying this is abnormal and epilepsy daily 4 times it was attacking could u pls help on this

Submitted by Sandeep

Hi Sandeep       

I’m sorry to hear about your baby. Sometimes a baby can have seizures but have a clear MRI and EEG. This might be because there is nothing abnormal in their brain, but they could be having seizures for other reasons, such as a pyridoxine deficiency, or some other metabolic disorder.  As you baby has only been given a low dose of pyridoxine, that level might need to be increased, to see if it stops the seizures. We are not medical people, so can’t give you any more specific information, but you could talk to your baby’s doctors about this information.

Regards

Kathy  

Epilepsy Action Helpline Team

Submitted by Kathy - Epileps...

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