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West syndrome (infantile spasms)

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an electroencephalogram (EEG) are also used to help identify epilepsy syndromes.

Epilepsy Action has more information about seizure types, learning disabilities, and the EEG.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact Epilepsy Action.

West syndrome (infantile spasms)

Infantile spasms are a type of epilepsy with a characteristic age of onset (typical age when seizures start), pattern of seizures and electroencephalogram (EEG). This means that it is an ‘electroclinical epileptic syndrome’. The syndrome is called ‘West syndrome’ after Dr West, who first described the condition in his 4-month-old son in 1841. This type of epilepsy occurs in about one in 2,500-3,000 children. Every year in the UK about 350-400 children will develop West syndrome.

Symptoms

In 9 out of 10 children with the condition, infantile spasms occur in the first year of life, typically between 3 and 8 months old. To begin with, the attacks are usually brief and infrequent and do not occur in clusters. Therefore it is quite common for the diagnosis to be made late. The parents may initially be told their infant has colic because of the pattern of the attacks and the cry that a child gives during or after an attack.

The typical pattern is of a sudden flexion (bending forward) in a tonic (stiffening) fashion of the body, arms and legs. Sometimes, the episodes are different, with the arms and legs being flung outwards (these are called ‘extensor’ spasms). Usually, they affect both sides of the body equally.

Typically, each episode lasts just 1 or 2 seconds, there is then a pause for a few seconds followed by a further spasm. While single spasms may happen, infantile spasms usually happen in ‘runs’ or ‘clusters’ of several in a row. It is common for babies who have infantile spasms to become irritable and for their development to slow up or even to go backwards until the spasms are controlled. These babies can also behave as if they cannot see. These problems can improve if the spasms can be controlled and the EEG improves.

Diagnosis

The diagnosis of infantile spasms is made by a combination of the typical features with a typical EEG. The EEG shows a very disorganised pattern called ‘hypsarrhythmia’. The EEG is always abnormal in children with West syndrome but sometimes this abnormality is seen only during sleep. Infantile spasms, like many other ‘electroclinical syndromes’, have lots of different causes. A particular cause will be found in 7 or 8 out of every 10 children with West syndrome. A video of the spasms is also very helpful.

Most children with infantile spasms will need a number of tests apart from the EEG. These include brain scans, blood tests, urine tests and, sometimes, spinal fluid and other tests in order to try to identify the underlying cause. The most important brain scan is the magnetic resonance imaging (MRI) scan.

Treatment

The main treatments used are corticosteroids or vigabatrin (Sabril). Nitrazepam and sodium valproate (Epilim) may also be used. There are different types of steroid that can be used. These are prednisolone (given by mouth), hydrocortisone (given by mouth or sometimes by injection) or tetracosactide (given by an intramuscular injection). Steroids must be used carefully as this treatment may cause some unpleasant side-effects. Vigabatrin may also be associated with some side-effects. Ketogenic dietary therapy (often called the ketogenic diet) may also be helpful for some infants.

There may be research studies open that are relevant to this epilepsy syndrome. Your child’s doctor will be able to discuss this with you.

If your child has this syndrome they may have prolonged or repeated seizures. Your child’s doctor will discuss a ‘rescue’ or emergency care plan with you to treat any prolonged or repeated seizures.

Information about treatments for children can be found on the Medicines for Children website.

Outlook

In some children, infantile spasms respond easily to treatment, whereas in others they keep on happening. Most children unfortunately go on to have other kinds of seizures in later childhood including an epilepsy syndrome called Lennox-Gastaut syndrome. Most children also have learning difficulties and these may be mild or severe. The long-term outlook for West syndrome, for both the spasms stopping and the child’s development and learning, depends mainly on the cause of the syndrome.

Support

Contact a Family
Helpline: 0808 808 3555
Website: cafamily.org.uk
Email: info@cafamily.org.uk

Code: 
S004.03

Epilepsy Action would like to thank Drs Richard Appleton and Rachel Kneen (at Alder Hey Children’s Hospital, Liverpool) and Stewart Macleod (at Yorkhill Children’s Hospital, Glasgow), consultants who specialise in children’s epilepsy, who have updated this fact sheet.

 

This information is exempt under the terms of The Information Standard.

  • Updated June 2016
    To be reviewed June 2019

Comments: read the 16 comments or add yours

Comments

Dear all,
my baby is suffering from West syndrome which was confirmed by EEG(hypsarrythmia) and visual symptoms. He is now 7 months old. It all started when he was 6

months and we took him for immunisation. After the Vaccine he had

fever and was crying incessantly. though the fever was gone in 1-2 days but these infantile seizures started. He is taking Sabril 500mg ( Vigabatrin) ,

valparin and Blong (B vitamin).

since last 3-4 weeks but not much relief as yet. Your suggestions and feedback awaited.

Rupesh

Submitted by Rupesh on

Dear Rupesh
Many thanks for your message. It sounds like this has been a tough time for you.

We do not have any information linking West Syndrome with the vaccines. In West Syndrome, infantile spasms usually happen in infants during their first year of life. Typically these spasms begin between three to eight months old, and an infant receives a diagnosis around this time. This period happens to overlap with the time at which many infants get vaccinated, but to our knowledge is not linked to their vaccinations.

Some families tell us that they have found it useful to talk to other families who are in a similar situation to them. You may like to get in touch with Contact a Family who have a support group run by parents of children who have West Syndrome. They can also offer support, advice and information about a wide range of day to day topics.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

Yours Sincerely
Karen
Epilepsy Action Advice and Information Team

Submitted by Karen, Epilepsy... on

Hellow all my son tyler was diagnosed it 8 mouths old he tryd steroid,s sabril, and reancently started o colbazam tyler is now 35 mouth s old and has been having spasms since being diagnosed , he nas learning disabilities but is such a happy boy hope he gets betta

Submitted by Nathan cleasby_jones on

Hi Nathan
We also hope things go well for Tyler.

For some parents contacting other people who understand what they are experiencing can help. If you think this could help you, you may find some of our other services helpful:

Local meetings ­ epilepsy.org.uk/near-me?from=main-nav

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyadvice

Online community forum.epilepsy.org.uk/

Near Me events epilepsy.org.uk/near-me

We also have a membership scheme, which keeps people up to date with information through our magazine Epilepsy Today.

epilepsy.org.uk/involved/join.

If we can be of any more help, please feel free to contact our helpline team directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

My son had hypoglycemia attack on second day of his birth after one month MRI done..it showed bilateral occipital. .doctor said it may effect on motorskill or in eye any development and time will say..from one month he is on valprin...through seven month he was k got head holding proper..but he dont have direct eye contact (follow the light only not faces)..not at all grapping any toy...in eight month he drooping his head ...doctor said he is suffering now west syndrom...from one month his treatment started his nodding keep increasing..
his treatment startef with omecortaile then switch to acth..now in vagabtrine still no improvement. ..now I am really woory about his development and future..by health is good ...pls help

Submitted by Neema on

Hi a wonder if anyone can help, my grandson is 12 weeks old and appears to be having seizures, when he was born he was very blue and and had one that lasted 50 minutes, we spent 10 days in hospital with him and all appeared fine, we got home and he had another, he's been having them weekly since then, he seems to be jumpy the day before it happens then no warning within 24 hours his whole body stiffness he turns blue an it looks like he's not breathing thankfully it only last 2,3 minutes then sleeps for hours after, they have done all the tests but they were clear, it's very upsetting an my daughter is doing an amazing job, just wondered if anyone else had experienced this an what the outcome was. Thanks in advance

Submitted by Lorna on

Dear Lorna
It must be really hard watching someone you care about and who is so small having all this happen for him.

It is really difficult to diagnose a very young child. I have linked you to further information about this. I really hope you get some clearer information about what is happening for him soon.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Is there any link between infantile spasms and agent Orange? ??????

Submitted by Jeremy on

Hi Jeremy
Thanks for your message. We are not aware of any research linking infantile spasms and Agent Orange.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hello, I have 8 months old son, he's born with trisomy 21, with complication duodenal atresia , cardiac problems . He's having spasm from 4 month and is getting worse . I told nurse , health visitor , they think it's reflux , I changed his milk and he's on renitidine , isn't changed at all, more spasm even he's stop smiling . I made a video of him and read all about west syndrome , sallaam syndrome , seems to me , my sons spasm exactly the same . Made an appointment with paediatric team on 2nd Feb , long to wait . Mean time , he's getting stif and crying more , miserable . Please, any advice ? Thanks

Submitted by Zama hill on

Hi,

My son is 18 months old, last night he had sudden spasms, it started around 12 last night and last for a second each one and then a a scared cry straight aferwards, we rang 111 and they wanted to send an ambulance but he seemed to pick up at about 1am, so i cancelled the ambulance. he seemed fine in the night afterwards but im unsure of what this could be. After reading articles i wouldnt know if this is west-syndrome or not. could i have some advise please

Submitted by CLouise on

Hi there, my daughter is now 7 months old and has been diagnosed with infantile spasms. She has been on prednisolone and Sabril and since has been seizure free for 5 1/2 weeks :-) it's still scary and we are only at the start of the journey as the outcome is still unknown.
I was wondering if there was anyone local to me who has been through something similar? I have been on groups on social media but a lot seem to be in America. Just looking to chat through things with someone who knows how we feel. Thanks, Jen

Submitted by Jen on

Hi Jen
Thanks for your message. Finding out your child has a form of epilepsy can be very frightening. Talking to other families going through a similar thing is a really good idea. We don’t have contact details for other parents, but there is a West syndrome support group who may be able to help. West syndrome is another name for infantile spasms. You can contact them on 01252 654057 or email kimdenise44@gmail.com. You may also find our information about help and support for parents and carers useful.

I hope this helps and that you are able to find some other parents to talk to. If there’s anything else we can help with please feel free to contact the Epilepsy Action Helpline.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Just to say that there is hope! I had West Syndrome when I was 8 months old and took Epilim. Because I was initially diagnosed abroad (when my family took me on holiday), I was taken off the treatment when I returned to the UK where I was diagnosed again put back onto the Epilim. This meant that I lost 2 years of my development but have otherwise have had no ill effects. Scans and EEGs until the age of 5 showed that I had no brain damage and I developed normally. In fact, I am now a 35 year old Psychology Teacher.

Submitted by Lyn on

Lyn, that's very positive. My baby had menencepalitis at 4 months, he's now 7 months. At 6months he started having infantile spasms and has been diagnosed with West Syndrome. I'm so worried about him, I don't know how to help him. I feel so alone.

Submitted by Racheal on

Hello Racheal

Being a parent can be tough, even without the extra challenges that epilepsy can bring.

Some people tell us that connecting with other parents in a similar situation has helped them to feel less alone. Maybe you could get in touch with Contact a Family to see if they can put you in touch with other parents facing similar challenges.

If you want to talk about this, or if we can be of any more help, please feel free to get in touch

Karen
Epilepsy Action Advice & Information Team

Submitted by todd at Epileps... on