Baby spasms. Epilepsy / West Syndrome?
Discussion
For the past week, my otherwise healthy and happy 8 month old has been demonstrating some worrying behaviour.
She will occasionally suffer an odd spasm which forces her head backwards quite quickly. These spasms only last around 1-2 seconds, but she has been having perhaps 15 spasms a day.
We phoned NHS direct on Tuesday (doctors had no slots available) who arranged an ambulance for us. We spent all day in the hospital having her blood, heart, ears and urine tested but everything comes back healthy.
The doctors stated the next step would be an EEG to see if there is any unusual brain activity, but they don't consider it serious enough to go ahead with this at the moment. We've just been asked to monitor the situation and try and get more video evidence if possible.
As you do, I went ahead and Googled her symptoms, and can't help but think it looks like Infant Spasms / West Syndrome. It's not a nice read and I couldn't bare to see my daughters development start to suffer.
Has anyone had a similar experience? The doctors have said that she may just grow out of it, but i'm feeling I should be pushing harder for an EEG.
Spasms 1
Spasms 2
She will occasionally suffer an odd spasm which forces her head backwards quite quickly. These spasms only last around 1-2 seconds, but she has been having perhaps 15 spasms a day.
We phoned NHS direct on Tuesday (doctors had no slots available) who arranged an ambulance for us. We spent all day in the hospital having her blood, heart, ears and urine tested but everything comes back healthy.
The doctors stated the next step would be an EEG to see if there is any unusual brain activity, but they don't consider it serious enough to go ahead with this at the moment. We've just been asked to monitor the situation and try and get more video evidence if possible.
As you do, I went ahead and Googled her symptoms, and can't help but think it looks like Infant Spasms / West Syndrome. It's not a nice read and I couldn't bare to see my daughters development start to suffer.
Has anyone had a similar experience? The doctors have said that she may just grow out of it, but i'm feeling I should be pushing harder for an EEG.
Spasms 1
Spasms 2
Edited by IanCress on Thursday 16th February 11:03
Edited by IanCress on Friday 17th February 22:15
That's exactly what we did on Tuesday. Spent the whole day in hospital, and showed the video to the neurologist. She didn't think it looked serious enough to warrant an EEG so sent us home to monitor the situation.
I'm going to get in touch with her again on Monday with more videos and a log of every time we've witnessed it.
I realise it's a rare condition and there are other possible causes, but everything I have read about West syndrome states that it needs to be identified as soon as possible.
I'm going to get in touch with her again on Monday with more videos and a log of every time we've witnessed it.
I realise it's a rare condition and there are other possible causes, but everything I have read about West syndrome states that it needs to be identified as soon as possible.
I've added a couple of videos to my original post to give an idea of what she's doing.
I can't help but feel nobody is taking this as seriously as I am. Spent another few hours at the hospital, and i've been told we need to write to the epilepsy specialists who will hopefully give us a referral for an EEG. My worry is that this could be weeks away yet, when everything i've read about West Syndrome says this needs to be identified ASAP.
The doctors, having seen these videos, don't think it's too concerning. She is otherwise a very happy healthy baby. I'm just worried that they have no experience of diagnosing a baby with WS, as it's so rare to come in to contact with a baby presenting these symptoms.
To the parents of WS babies - Was your child showing a slowdown in development or any other symptom before the spasms started, or were they perfectly on track until the spasms started?
I can't help but feel nobody is taking this as seriously as I am. Spent another few hours at the hospital, and i've been told we need to write to the epilepsy specialists who will hopefully give us a referral for an EEG. My worry is that this could be weeks away yet, when everything i've read about West Syndrome says this needs to be identified ASAP.
The doctors, having seen these videos, don't think it's too concerning. She is otherwise a very happy healthy baby. I'm just worried that they have no experience of diagnosing a baby with WS, as it's so rare to come in to contact with a baby presenting these symptoms.
To the parents of WS babies - Was your child showing a slowdown in development or any other symptom before the spasms started, or were they perfectly on track until the spasms started?
Again the doctors aren't overly concerned about her. As you say it doesn't look like the classic infant spasms and it's having no effect on her development and well being, so i'm hoping we can start to rule that out. Sympathy goes out to the posters above who are dealing with West syndrome.
I am waiting on a referral for an EEG. The hospital we have been visiting doesn't do EEG's so we need a referral to Alder Hey childrens hospital. Hopefully this will come through today.
Since Friday it has calmed down a lot, we're back to around 10 instances a day, from the 40-50 instances we saw last Thursday. I've been told that this does occasionally happen as babies develop and it's just a symptom of a developing nervous system, and that it may just fade away. I'm not letting this drop though until we know exactly what's going on.
I am waiting on a referral for an EEG. The hospital we have been visiting doesn't do EEG's so we need a referral to Alder Hey childrens hospital. Hopefully this will come through today.
Since Friday it has calmed down a lot, we're back to around 10 instances a day, from the 40-50 instances we saw last Thursday. I've been told that this does occasionally happen as babies develop and it's just a symptom of a developing nervous system, and that it may just fade away. I'm not letting this drop though until we know exactly what's going on.
Just to finish this off, the epilepsy specialists have had a look at her and they're very confident that these are not epileptic spasms of any kind. And strangely, despite not being able to understand the doctors, my daughter has stopped doing these movements.
We've not had a single occurrence for a week now.
Conclusion? Babies are odd sometimes.
We've not had a single occurrence for a week now.
Conclusion? Babies are odd sometimes.
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