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Babies and epilepsy

Contents

The causes of epilepsy in babies
Types of seizures
Diagnosis
Treatment
Long-term development
Further information

Introduction

This information relates to babies who are up to one month old.

The causes of epilepsy in babies

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

  • Being born more than two or three months early. If your baby is born so early, they are at risk of having bleeding inside their brain. This is called intracranial haemorrhage.
  • Being born on time but suffering 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 an abnormal brain. This is called cerebral dysplasia or dysgenesis. Cerebral means relating to the brain. Dysplasia or dysgenesis means abnormal development.
  • Inheriting a medical condition, such as benign neonatal convulsions.

Epilepsy Action has more information about inheriting epilepsy and benign neonatal convulsions

Types of seizures

Seizures in babies can be difficult to recognise. They are often brief and affect only some parts of the body. 

  • Your baby may have jerking or stiffening of an arm or leg that can switch from side to side. Or their whole upper body may suddenly jerk forward. Or both their legs may jerk up towards their stomach, with their knees bent. These are usually called myoclonic or, if the jerks happen repeatedly in clusters, clonic seizures.
  • Sometimes, only the baby’s face is involved. Their eyes twitch and their head turns to one side. These are usually called focal seizures.
  • If your baby’s body stiffens with or without eyelid flickering, these are usually called tonic seizures.
  • Your baby may go bright red in the face and their breathing and heart rate may change. They will be less alert than usual. You may notice that, for a short time, you can’t attract your baby’s attention. Or you might notice your baby’s eyes are not focusing. These are usually called subtle seizures.

Epilepsy Action has more information about types of seizures.

Diagnosis

It can be difficult to recognise seizures in babies.  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 you about:

  • any behaviour changes that are unusual for babies at that age
  • whether all the seizures look the same, and last the same length of timehether the seizures happen while your baby is awake or  asleep, or both
  • whether the seizures are caused by changes in your baby’s posture or when they are doing different things
  • whether the seizures interfere with, or stop, your baby’s activities such as feeding
  • whether you can stop the seizures after they have started.

If you can record any behaviour changes (maybe on a mobile phone) to show the specialist what happens, this might be very important. 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)

Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity. This intense electrical activity causes a brief disruption to the way the brain normally works, meaning that the brain’s messages become mixed up. The result is an epileptic seizure.

An EEG gives information about the electrical activity that is happening in your baby’s brain at the time of the test. The electrical activity shows on the EEG as a particular brainwave pattern. EEGs can be very useful in older children and adults, but are less valuable in helping to diagnose epilepsy in babies. This is because the brains of babies are immature, and can’t usually show the changes in brainwave patterns that are seen in older children. This means that even during an epileptic seizure the EEG may not show anything abnormal.

However, if the EEG is very abnormal, it will tell the doctors more about your baby’s epilepsy.

Epilepsy Action has more information about EEGs.

CT scans (computed tomography)

A CT scan is a type of X-ray that shows the physical structure of the brain. It doesn’t show if your baby has epilepsy. However, it may show if there is anything in your baby’s 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. An MRI scanner is more powerful than a CT scanner. An MRI scan has a higher chance than a CT scan of showing something in your baby’s brain that could cause 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 your 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 the individual baby, whether they have any other medical issues, and their family history. The referral will  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, sodium valproate, levetiracetam, and vigabatrin. Pyridoxine, (vitamin B6) is also sometimes used.

Epilepsy Action has more information about treating epilepsy.

Long-term development

  • If a baby’s seizures are caused by bleeding in their brain or severe lack of oxygen at birth, they will often start having infantile spasms (West syndrome) in their first year of life. They may carry on having seizures that are difficult to treat throughout their childhood. They will also have learning disabilities and many will have cerebral palsy.
  • If a baby’s seizures are caused by meningitis, they may have seizures during childhood and develop learning disabilities and cerebral palsy.
  • Babies who have a low level of glucose in their blood have seizures during childhood and are likely to have learning disabilities. They may also have impairment of their sight.
  • If a baby has seizures caused by cerebral dysplasia or dysgenesis, they are likely to have difficult to control epilepsy. Cerebral dysplasia or dysgenesis means abnormal development of the brain. Most of these infants will also have learning disabilities. These are usually moderate or severe. The outlook for babies who have a genetic abnormality will depend on their particular genetic abnormality.

Epilepsy Action had more information about West syndrome and learning disabilities.

Further information

Your health visitor, epilepsy nurse, or epilepsy specialist may be to give your information about your baby’s condition. 

The UK organisation Contact a Family freephone 0808 808 3555 (UK) or cafamily.org.uk may be able to provide information and details of self-help groups for children with specific conditions, including the less common types of epilepsy.

 

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

Code: 
F009.01

Epilepsy Action would like to thank Dr Richard Appleton, consultant paediatric neurologist at Alder Hey Children’s Hospital, Liverpool, UK. He has worked with Epilepsy Action to provide the background information for this page. It is based on his own research, experience and expertise.

This information has been produced under the terms of The Information Standard.

  • Updated January 2013
    To be reviewed January 2015

Comments: read the 18 comments or add yours

Comments

Thank you so much this information had been brilliant for me, I had a little boy named Sidney who stared having seizures at 5days old & is now 13 weeks old today. sidney has been put on phenobarbital & has had this increased 2 and a half weeks ago,after being sent home by manor hospital to deal with (sid going bright red,eyes twitching,breathing & heart rate changing) till the medication kicks in,in the last 24 hours he's had 6 seizure. The hospital has given us no information what so ever, so thank you this is very informative.

Submitted by emma vickers on

What are metabolic causes of seizures in babies? Thanks

Submitted by maddie on

Our baby daughter called Agnes started having frequent generalised tonic clonic seizures at ten and half months. She is now 15 months and the seizures seem to be under control with Sodium Valporate and Clobozam. I would like to know what happens physiologically during a seizure. Agnes goes blue and looks like she doesn't breathe. Our peadiatrician said that she probably doesn't breathe. I am not sure of how worried to be about this as Agnes' seizures have lasted up to five minutes.

Submitted by Lucy Grant on

Hi Lucy

It can be distressing seeing someone have a seizure. But hopefully this information will help reassure you.  

During a tonic clonic seizure Agnes’ breathing patterns change (she hasn’t stopped breathing), so there is less oxygen than normal in her lungs. Because of this, the blood circulating in her body is less red than usual. This causes her skin (particularly around her mouth and under her finger nails) to appear blue in colour. This is called ‘cyanosis’. But once her seizure has stopped, her colour should slowly return. It’s not unusual for a person’s seizure to last for around five minutes. As long as Agnes seizure isn’t going on for more than five minutes this should not cause any problems.

Heres a link to our information on how to deal with a tonic clonic seiuzre.

http://www.epilepsy.org.uk/info/firstaid

Submitted by Diane@Epilepsy ... on

hi my little boy startedhaving seizures at 2 days old and was treated with phenabarbital, we had to start reducing his dose his week 4 weeks ago to see if it effected him, wednesday night my poor little boy had a seizure lasting 32 mintues as the diazapam the ambuance gave wasnt working. the hospital he is in arnt verygood and i was wondering if anyone knows the costs of private treatment so i can get him the care he really needs.

Submitted by kirsty on

Hi Kirsty

What a terrible thing to happen. That must have been so frightening for you.

We don’t know how much private treatment costs, but if you are unhappy with your little boy’s treatment, you could ask to be referred for a second opinion. This is information from NHS Choices about asking for a second opinion

If you are in the UK and would like to talk to us about where your nearest specialist epilepsy centres are based, please contact us on the Epilepsy Helpline freephone 0808 800 5050 during office hours. Alternatively, you could email: helpline@epilepsy.org.uk, telling us where you live, and we will get back to you.

Kathy

Advice and Information Team

Submitted by Kathy on

My daughter had a number of seizures when she was seven weeks old. She stopped breathing and needed to be resuscitated. She spent 10 days in ICU and her seizures are now controlled with Epilim 3 x a day. She has a nappy clip which work like an Apnea mat and sounds an alarm if she stops breathing at any point which hasn't happened since she's been on the Epilim. She is now 4 months old. I'm writing to ask how other parents are coping after their experiences. I have awful nightmares, cry when I see an ambulance and battle to sleep. I worry constantly about my daughter and check on her all through the night. I found it very traumatic watching my baby go through sedation for the MRI. Is anyone in a similar boat to me?

Submitted by Lindsay on

Hi Lindsay

I am sorry to hear about the difficult time your daughter had. But glad that things are a little easier now. It sounds like it could be really useful for you to talk with other parents. But you are unlikely to get much of a response in the web comment section. There are a couple of ways of talking to other parents of children with epilepsy. You could join our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation. Or you could go to our Facebook page. I really hope one of these works for you.

Cherry

Advice and Information Officer

Forum4e: https://www.forum4e.com/

Epilepsy Action on Facebook: https://www.facebook.com/epilepsyaction

Submitted by Cherry on

Hi Lindsay,
I too have a baby with epilepsy, Im currently not sleeping at all. My daughter was diagnosed at 10 weeks old, but has shown symptoms from birth. I have been repeatedly told it was reflux. Although I knew all along it wasn't and that something was not right. I feel like my world has just fallen apart.All I want to do is just make her better. As she is so young I cant tell if she is having seizures or not, but it looks like she is having them constantly. The hospital weve attended havnt told me anything and I just feel so helpless. She has been on meds for 4 days now as this is when she was diagnosed. No change yet.

Submitted by fernand on

my four months old baby stiffens up with the knees drawn up and staring eyes for 4-5 seconds right after waking up or in the middle of sleep which makes him wake up...and then cries. This started around 15 days back, sometimes occur 2-3 tmes in aday etc.... he still cannot hold his head up very steadyly or bring his hands together... he also drools a lot and sticks his tongue out just recently

Submitted by Amen on

My son nelson was diagnosed with jaundiced. He is 4 weeks old. In his second week when he was being treated with jaundiced he started jerking his hands and later his head. Pls I want to know what's wrong with him?

Submitted by Abel on

Hi Abel

It must be a worry for you at this time. I can also appreciate why you would ask us what is wrong with your son. However, the fact that parts of his body were jerking doesn’t necessarily mean he has epilepsy. So, it’s important for you to talk to your son’s doctor. They can then decide if any tests and treatment are necessary, and also if the jerking may be due to his jaundice.

If your son does turn out to have epilepsy, we would be more than happy to try and help you.

Rosanna

Advice and Information Team

Submitted by Rosanna on

Hi I wanted to ask could my baby have spoiled he sometime want have sesziers for about a week and all of a sundeny it starts again why could it be he turns blue in the face and then after he wants to go to sleep like hes really tired doctors told me its an ear infection can someone help me hes only 14months

Submitted by saprina on

My son is 10mnths plus,he just started to stiffen himself while he is sleeping,for like 3mins minutes,immidiately that happens he starts to cry.dnt rlly understand cos his my first baby.

Submitted by jenny on

Hi

It would be advisable to talk to your son’s family doctor about what happens to him. It may not be anything to worry about, but it’s always best to get these things checked out. If they feel it’s epilepsy related they can refer him to see a paediatrician. You can then discuss his symptoms and any thoughts or worries you have with them.

I hope this helps.

Rosanna

Advice and Information Team


Submitted by Rosanna on

I found this website to be very informative and helpful. keep up the good work!

Submitted by Rebecca on

Please can you help? My grandson was admitted to hospital in November 2013, whilst having a seizure. Following two days of investigations, it was discovered that he had been subjected to Shaken Baby Syndrome, on two separate occasions within the preceding fortnight. He spent 2 weeks on HDU and suffered further seizures, one which lasted for nearly an hour. He has since been discharged from hospital. He has been prescribed Phenytoin, which he takes twice a day. My question is this, As his brain recovers, (the petechial haemorrhaging is diminishing), can he recover from having seizures? or will they be with him forever? Many thanks.

Submitted by Julie on

Hi Julie

I am so sorry to hear about your grandson. And I am also sorry that I’m not in a position to be able to answer your question. We aren’t medically trained. And the answer would depend on what sort of damage was done to his brain, and how that is healing.

Epilepsy can happen because the passage of electrical activity around the brain is interrupted in some way. So if there is remaining damage in the brain that would do this, then it is possible he would continue to have seizures. But even if this is what happens, there is every possibility that his seizures can be controlled by epilepsy medicine.

I hope this information is of some help to you.

Cherry

Advice and Information Team

Submitted by Cherry on

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