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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’. They can also be called ‘salaam spasms’, because the appearance of the seizures is like a bowing forwards or backwards movement. The syndrome is called ‘West syndrome’ after Dr West, who first described the condition in his own four 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 nine out of 10 children with the condition, infantile spasms occur in the first year of life, typically between three and eight 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 first diagnosis is often 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 one or two 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 infants can also behave as if they cannot see. This improves once the spasms are controlled and the EEG has improved.

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 seven or eight out of every 10 children with West syndrome.

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 steroids 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.

Prognosis (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 prognosis for West syndrome, for both the spasms stopping and the child’s development and learning, depends mainly on the cause of the syndrome.

Support organisation

Contact a Family
209-211 City Road
London EC1V 1JN
Phone: 0808 808 3555

Website: www.cafamily.org.uk

Because Epilepsy Action has not written this information, it is not produced under the terms of the Information Standard. Details of the Information Standard are available from www.theinformationstandard.org

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Code: 
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Our thanks

Epilepsy Action would like to thank

  • Dr Richard Appleton, and Dr Rachel Kneen, consultant paediatric neurologists at Alder Hey Children’s Hospital,Liverpool,UK and
  • Dr Stewart Macleod, consultant paediatric neurologist atRoyalHospitalfor Sick Children,Glasgow,UK.

They have kindly prepared the information on this page. It is based on their own research, experience and expertise.

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

  • Updated November 2012
    To be reviewed November 2015

Comments: read the 27 comments or add yours

Comments

Is it possible that onset is not until a child is 20 months. My daughter had a seizure/spasm this morning when waking up they were about a second or two long and lasted almost 10 min with about 10 to 20 seconds in between. We called 911 and since she was fine when they arrived they just told her to take her in.We went to her Dr right after and should be receiving a call for an EEG by Monday. My daughter was born at 25wks and spent 5 months in the hospital before coming home. Besides chronic lung disease and feeding issues (gtube) We have been really blessed. She has meet almost all milestones. She is walking well running now, talking and even doing sign language. She loves interacting with others and is quit the little dancer.This morning was the first time something like this has ever happened. Well that I have seen. I have looked everywhere online but everything leads me back to infantile spasm.

Submitted by Jessica on

Hi Jessica

Children can develop epilepsy at any time. And doesn’t automatically start at birth, even if there have been complications.

Hopefully as well as being called for an EEG, you will be able to talk to a paediatrician. I am sorry but as we aren’t medically trained, we’re not able to say what exactly could be happening for your daughter. But I do hope you get some answers soon.

Cherry

Advice and Information Team

Submitted by Cherry on

Is it not true that newborns neo nates (ie - less than 3 months old) typically have spasms because their nervous system connections are still not full formed, and these spasms may go away as the connections form. This is why newborns less than 3 months old are not considered for this condition because it is a relatively common in newborns - correct me if I am wrong.

Submitted by Mike Darco on

Hi Mike

If a baby is having infantile spasms as opposed to any other type of spasm, this can be identified in particular results of an EEG called hypsarrythmia.

Cherry

Advice and Information Team

Submitted by Cherry on

Hi

My son who is nearly 7 months been having spasms for a few weeks now. Just been docs this week and they have referred me to hospital but the doc I saw at the surgery is passing it off as colic or reflux and I am almost positive it is not that as my daughter had reflux and this nothing like this. How do i go about making them believe me as when I was there he never did it. How do I get them to hurry up? How can I make them test my son for it so im not bing passed off as reflux which I no it's not. Please help.

Submitted by Angela Stapleton on

Hi Angela

Thank you for your question. It can be a worry waiting for appointments to come through. Most children will be referred to a paediatrician. The paediatrician should listen to what your concerns are and look at any evidence you have of your son’s episodes. Therefore, if possible keep a diary of his symptoms and see if you can record what you think are seizures.  If needed, the paediatrician will refer your son to a colleague with a special interest in epilepsy. Please view our information on how epilepsy is diagnosed.

You could contact your GP practice to ask what the expected waiting time is for his referral are. Or if you haven’t already, you could talk to your son’s Health Visitor. If necessary they could talk to your GP.

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

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

My youngest son had infantile spasms at 6months old and I am so lucky that here in the UK my doctor took it seriously. He was booked into hospital just three days from the onset. Full tests MRI/EEG etc within days and treatment started. From day two of treatment his seizures stopped completely. From start to finish was 12 days. The sooner the spasms can be stopped the less damage is done to the brain. We are so lucky that we now have a very healthy 13 year old! This seems like so long ago now but I am amazed that away from the UK treatment/diagnosis is still so slow! Speed is of the essence and luckily the UK believe that too.

Submitted by Tracy Willis on

Hi Tracy,

What specific treatment was your son given? As it seems that prognosis may vary accordingly; Vigabatrin sounds generally safer than steroids although possibly some steroids are safer than others; is Valproate an alternative for such a young child?

We're currently worried that the treatment we've been suggested is counterproductive so it would be good to hear that kind of detail

Submitted by Mark B on

Hi, for those of you with older kids, who became seizure free in early stages - what was your child's development like? Did they have an underlying condition? My daughter was diagnosed at 5months and has been seizure free for almost eight months now. Her underlying condition is genetic (chromosome 14 duplication -neither my husband or I have this though) She has around a four month delay and isn't sitting unaided yet. Hoping for some insight to development as it's rare. Most cases we looked at don't reflect early diagnosis. Thank you :)

Submitted by Lisa-Marie Wilson on

Hi Lisa-Marie

It is always hard to make a really accurate diagnosis  of such a young child. You may find our information on epilepsy and babies useful.

I’m not sure if you will get much of a response from other parents on this web page.

For contact with other parents you could either put a post on our Facebook page. Or you could join our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy.

You may also find it useful to be in touch with Contact a Family.  You may have seen the link at the bottom of the West Syndrome webpage. They do a variety of things including managing a network for parents of disabled children.

I hope things become clearer for you soon.

Cherry

Advice and Information services

Submitted by Cherry-Epilepsy... on

Hi,

I have read articles on west syndrome and also read comment from families who has a loved one with this condition.

Just wanted to know if any if any progress made on research.

Regards

Submitted by karen on

Hi Karen

When new research relating to epilepsy becomes available to us, we keep people up to date through our magazine Epilepsy Today. Please use this link to see how you can receive this information.

Regards

Diane
Epilepsy Action advice and information team

Submitted by Diane@Epilepsy ... on

Hello,
My daughter has been diagnosed with IS an is currently stsrting vigabatrin therapy (receiving for 3 days) . There was a heart, kindeys and vison test made and all were Ok. We are waiting for the blood\urine and MRI results to see if there is some damage made. I sincerely hope all will be fine and we do not discovered the illness too late. My question is how much time the vigabatrin needs to start taking effect. In this 3 days I have seen that my child is more aware from before the thretmant started and that the seizures went down to 2\3 per day
Thanks

Submitted by oliver on

Hello Oliver

Thanks for your message. The time it can take for vigabatrin, or any epilepsy medicine, to take effect varies greatly from person to person. The fact that you have already seen a difference after three days is hopeful. According to the British National Formulary (BNF), in the UK, when a child with infantile spasms (West Syndrome) is prescribed vigabatrin, the doctor adjusts the dosage according the child’s response to it over seven days.                                                                                                                                                           

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

Hello Sacha,

Frst of all thank you for your support in this timebof need. I am from the bslkans and in here is tough to find this kind of support and helpfull tips. We have been realised last wednesday from the hospital andcontinued with the vigabatrin therapy. She still has seasures but I am wondering why they only apear after she waking up from sleaping (this is hapening from the monday). Do you know something about this. We will visit the doctor next Friday. Also we are suspacting for the ideopatic west syndrome. We are waiting for the blood results to comfirm that is not genetic. Otherwise heart, kidneys and the mri did not revial any problems.

Submitted by oliver on

Hi Oliver

Thanks for getting back to us.  Seizures often follow a pattern, and can often be related to sleep. It is not unusual in West syndrome that seizures happen just before sleep or on awaking. It would be a good idea to talk about this with the doctor, as it could help with the diagnosis.

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

Hi,

One more question. As I understood a scream is also tipical for the seasure. Does the scream means that the seasure intensity is stronger when there is a scream or it is just the reaction of the child at that seasure in that moment
Thanks

Submitted by oliver on

Hi

It must be very distressing to see your daughter go through her seizures. We could not say for sure what is causing her screams. But, we do know when many adults have a seizure they can cry out because their muscles contract, forcing air out of their lungs.  

The cry that a child gives during a seizure in West Syndrome might have a similar cause. So the spasms could make the muscles of her lungs contract and force air out. If this is what is happening for your daughter the cry does not mean she is in pain. It is just a movement of air.

Your daughter's doctor would be a better person to determine what could be occurring in her case.

Sacha
Epilepsy Action Advice & Information Team

Submitted by Sacha@Epilepsy ... on

Hello,

We are on full dose vigabatrin now and we have noticed that my child is sliping a lot but with much more frequent wakeings. Every time she woke up she has a seasure. At the begining when she receive smaller dose of vigabatrin she was sleeping but without waking (3 hours during the day and 10 hours in the night with one wake for feeding). Is it posiible that biger dose of vigabatrin could cause this? We are due to our doctor in 2 weeks

Submitted by oliver on

Hello Oliver

Thank you for contacting us. We aren’t medically trained and couldn’t comment specifically about your daughter. But, vigabatrin has many possible side effects, one of which can be sleepiness. The fact that your daughter is now waking more could be a sign that the seizure activity is slowing down. In the UK, vigabatrin will only be prescribed if the benefits outweigh the risks. So, discussing this with her doctor would be a good idea.

Sacha

Advice & Information Team

 

Submitted by Sacha-Epilepsy ... on

my 5 week old grandaughter stiffens her neck and pushes her head up and to the side several times a day could this be epilepsy ?.

Submitted by lisers on

Hi

It can be very difficult to recognise a seizure in babies. What you describe might be epilepsy related, so it would be important that your granddaughter is referred to a doctor who has had specialist training in diagnosing and treating epilepsy. 

We have more information on the babies and epilepsy page of our website.

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

Hi
Great article. I have been reading a lot lately. There's so much useful information on the Web!
I have a daughter who fell unconscious when she was 6 months old and being looked after a carer. When rushed to the hospital we were told that she has suffered from Brain and retinal haemorrhage and was classified as Shaken baby syndrome. The carer till date claims that there was no such injury/event that could lead to this. My daughter now has development delays and continual seizures. She has her so called review every few months and I was very concerned about her seizures as Sodium Valproate doesn't help too much. She is now 1year and 9 months. About a couple of months ago we to doctors in India they claim that these are SPASMS. Now I am unsure whether she suffers from West Syndrome or was there actually something that happened to her. She has had Ayurvedic massage therapy in South India and there has been a significant improvement in her development. I am just confused and would like to ensure that her seizures/spasms can be eradicated.

Thank you for your suggestions in advance

Submitted by R B on

Hello

Thanks for your message.

The best thing to do would be to consult with an epilepsy specialist, to check the diagnosis for your daughter and find an effective treatment. We are not medically trained, so could not comment specifically about your daughter. But, many children do respond well to treatment. If you are in India, you could find epilepsy specialist through the Indian Epilepsy Association. We have details of other international epilepsy organisations on our website.

It’s good the Ayurvedic massage seems to be helping. I don’t know what kinds of oils are used in this massage, but some essential oils can increase the risk of seizures if you have epilepsy. You might want to check what they use, to be certain it is suitable for your daughter.

I hope your daughter improves soon.

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

Hi I'm not sure if my little girl has west syndrome but she has got Down's syndrome and was just wondering if I could ask a quick question.. My little one after her bottles sits up then starts to shake for a few seconds I was just wondering if it's to do with west syndrome?

Submitted by Sam on

Hi Sam

Sorry to hear you have concerns regarding your daughter. As trained epilepsy advisers, we can give you general information on epilepsy. But we’re not able to diagnose your daughter’s symptoms. There are a number of medical conditions that can cause symptoms similar to epilepsy. If you haven’t already, it would be advisable to talk to your family doctor or health visitor regarding your daughter’s symptoms. If they think it could be epilepsy, they should refer her to an epilepsy specialist for a diagnosis. In the meantime, it could be helpful for the diagnosis if you could keep a diary of your daughters symptoms and if possible video the event.

If you have any further question please do fee free to contact us again. You can contact the helpline team either by email helpline@epilepsy.org.uk or the Epilepsy Helpline freephone 0808 800 5050.

Regards

Diane Wallace

Advice and Information Team

Submitted by Sacha-Epilepsy ... on

My daughter was diagnosed at 5 months. She was prescribed prednisolone a high dose for 1 month then weaned off for another 2 months. Her seizures stopped in 48 hours. She made a full recovery and is now 9 years old. No cause was found. I know that we are very lucky.

Submitted by julie on