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
My son who is now 19 had Wests Syndrome/infantile Spasms.
If you feel you have something that makes you suspicious you need to get in front of a paediatric neurologist as fast as possible. If the frequency of her moments is such you can video them do it. Theres nothing better than having something to show at that first meeting. An EEG will give a much clearer picture ultimately but a video will help
Good luck.
If you feel you have something that makes you suspicious you need to get in front of a paediatric neurologist as fast as possible. If the frequency of her moments is such you can video them do it. Theres nothing better than having something to show at that first meeting. An EEG will give a much clearer picture ultimately but a video will help
Good luck.
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.
Don't mean to cause undue worry but this is extremely serious. The spasms themselves are an outward sign of hypsarrhythmia brain patterns i.e. a chaotic brainwave. This is causing damage by the time it gets to spams stage and must be stopped with urgency for the babies future.
You need to get down to a children's hospital with a good neurology department this morning and tell them you suspect infantile spasms and want an eeg. Even if its a long drive. If they really wont give you one, pay for a private one. Tbh it is ridiculous if they wont.
Our baby (6 months old) took a cluster of spasms on new years eve, we took her to hospital and the next day she had another set in the hospital in front of the consultant paediatrician who basically said go home it is probably reflux and all babies cry. By the grace of God we were checked the next day by a doc who knew what she was doing and sent us down for an emergency eeg where i.s./west syndrome was diagnosed. We were very lucky to be diagnosed so quickly and this is absolutely vital for the childs chances. The problem is the spasms don't look bad at all. You could actually miss them as a typical baby jerk. Hence the phrase little spasms big consequences on the i.s. website.
By 4pm that day we had our first steroid injection. We were put on AC/TH, which has the best success rate, but some hospitals wont prescribe it as it's very expensive, I believe $125k in America for a 2 week dose. I'll not lie it is rough. Injection every other day, insane appetite, weight gain, no immune system etc etc, but it stopped the spasms from the first shot.
I'll not go on about further treatments etc now as you may be lucky and have a normal eeg but my wife and I have become somewhat experts as most doctors have never come across it, but keep the thread updated and pm me at any time. If your on Facebook search infantile spasms uk as the group is fantastic. Only 70 people on it but they have come thru most things and have been extremely helpful and knowledgeable for us.
You need to get down to a children's hospital with a good neurology department this morning and tell them you suspect infantile spasms and want an eeg. Even if its a long drive. If they really wont give you one, pay for a private one. Tbh it is ridiculous if they wont.
Our baby (6 months old) took a cluster of spasms on new years eve, we took her to hospital and the next day she had another set in the hospital in front of the consultant paediatrician who basically said go home it is probably reflux and all babies cry. By the grace of God we were checked the next day by a doc who knew what she was doing and sent us down for an emergency eeg where i.s./west syndrome was diagnosed. We were very lucky to be diagnosed so quickly and this is absolutely vital for the childs chances. The problem is the spasms don't look bad at all. You could actually miss them as a typical baby jerk. Hence the phrase little spasms big consequences on the i.s. website.
By 4pm that day we had our first steroid injection. We were put on AC/TH, which has the best success rate, but some hospitals wont prescribe it as it's very expensive, I believe $125k in America for a 2 week dose. I'll not lie it is rough. Injection every other day, insane appetite, weight gain, no immune system etc etc, but it stopped the spasms from the first shot.
I'll not go on about further treatments etc now as you may be lucky and have a normal eeg but my wife and I have become somewhat experts as most doctors have never come across it, but keep the thread updated and pm me at any time. If your on Facebook search infantile spasms uk as the group is fantastic. Only 70 people on it but they have come thru most things and have been extremely helpful and knowledgeable for us.
Edited by irish boy on Friday 17th February 09:32
Edited by irish boy on Friday 17th February 09:34
Edited by irish boy on Friday 17th February 09:34
We had to use a private paediatrician to get a diagnosis and initial EEG all those years ago. It's frustrating and infuriating but you are up against the clock.
I agree with the urgency stressed in the last post. The problem is most quacks will only have seen it present in patients with associated problems. But it can present as idiopathic and in what looks like a perfectly normal infant.
We used a private paediatrician neurologist as a professional witness some years ago, ii still have her details if you need them.
Good luck.
I agree with the urgency stressed in the last post. The problem is most quacks will only have seen it present in patients with associated problems. But it can present as idiopathic and in what looks like a perfectly normal infant.
We used a private paediatrician neurologist as a professional witness some years ago, ii still have her details if you need them.
Good luck.
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?
I'm no expert, get on the Facebook page and post up the vids. Much more knowledgeable people on there. Yes early diagnosis is key. We had our first treatment within 5 days of the first movement. We had no developmental delays but that is often down to the underlying condition that causes the spasms.
https://m.youtube.com/watch?v=PoWjBspeoQM
https://m.youtube.com/watch?v=PoWjBspeoQM
Our son Theo had a perfect birth with no trauma whatsoever and appeared to be perfectly normal for the first 3-4 months. By Month 5-6 he wasn't sitting up or showing as much interest as his older brother had, he was also suffering at the time the health visitor said from bad attacks of colic which made him double up in pain. We took him to the GP to express concern about both the colic attacks and the developmental issues.By 8-9 months he was becoming withdrawn and we were extremely concerns and kept going back and forth trying to get an explanation. We were told to book in to see a paediatrician but it would take 3-4 months to get an appointment, At this point we were referred to a private paediatrician. Theo was almost at 12 months old, his attacks were more severe and he had become so withdrawn he was almost catatonic.
When we met with the Paediatrician I remember going through all the developmental issues..as at that time that was our major concern. I also described the colic attacks. I remember this like it was yesterday as I demonstrated the way he pitched forward and his arms raised I watched the blood drain out of the doctors face and turn ashen grey. I knew right then we had a serious problem. I now know why they are called Salam attacks. Theo would crease up with his head going forward and his arms would raise to the side, he looked like he was praying at a mosque. He was by then having clusters of up to 40 a day.
He was immediately referred for a MRI scan and an EEG to try and get a formal diagnosis. He had atypical wests syndrome/Infantile spasms as the EEG wasn't typical. There was a lot of activity in the background and periods of normality. This was almost 20 years ago and the more recent EEG's he had had 5 years ago or so are so much more sophisticated, In those days he just pulled the nodes off his head anyway. He did have steroid treatment but its wasn't again as sophisticated as it is today.
Theo was 19 in December. He went on to develop Lennox Gastaut Syndrome, He looks like a perfectly normal teenager, however he is non-verbal, still in nappies, completely dependant and has a learning age of around 8-9 months, roughly when his seizures really took hold. He still has multiple complex seizures on a daily basis. In spite of all of this he is a very happy young man.
I can't even begin to tell you how our lives have been affected. I thought I no longer thought about what might have been if we had seen someone earlier, rather than being fobbed off for those precious months, or did I try hard enough.. If it might have made a difference? But it still hurts and I'm struggling as I write this almost 20 years on..
My advice is simple. if you think something is not right.. then kick the doors down until you get the answer.
When we met with the Paediatrician I remember going through all the developmental issues..as at that time that was our major concern. I also described the colic attacks. I remember this like it was yesterday as I demonstrated the way he pitched forward and his arms raised I watched the blood drain out of the doctors face and turn ashen grey. I knew right then we had a serious problem. I now know why they are called Salam attacks. Theo would crease up with his head going forward and his arms would raise to the side, he looked like he was praying at a mosque. He was by then having clusters of up to 40 a day.
He was immediately referred for a MRI scan and an EEG to try and get a formal diagnosis. He had atypical wests syndrome/Infantile spasms as the EEG wasn't typical. There was a lot of activity in the background and periods of normality. This was almost 20 years ago and the more recent EEG's he had had 5 years ago or so are so much more sophisticated, In those days he just pulled the nodes off his head anyway. He did have steroid treatment but its wasn't again as sophisticated as it is today.
Theo was 19 in December. He went on to develop Lennox Gastaut Syndrome, He looks like a perfectly normal teenager, however he is non-verbal, still in nappies, completely dependant and has a learning age of around 8-9 months, roughly when his seizures really took hold. He still has multiple complex seizures on a daily basis. In spite of all of this he is a very happy young man.
I can't even begin to tell you how our lives have been affected. I thought I no longer thought about what might have been if we had seen someone earlier, rather than being fobbed off for those precious months, or did I try hard enough.. If it might have made a difference? But it still hurts and I'm struggling as I write this almost 20 years on..
My advice is simple. if you think something is not right.. then kick the doors down until you get the answer.
Any update, OP?
A friend's daughter has just had a 24 hour EEG to investigate something similar but she wasn't having the whatever-they-ares as much as your littlun is. Are the 15 a day spread out evenly or do they cluster around times when she's upset, tired, excited? Has a medic actually seen her do it, or seen your videos?
The 'classic' movement seen in infantile spasms doesn't look like what your daughter is doing. I have no idea if that means that whatever she has going on cannot be that, but that may explain why you haven't had a mega strong response from the paeds.
All the very best. My daughter had occasional seizure-like things on a background of profound and complex impairment - it never became a pressing enough issue for the medics to pursue diagnosis/confirmation.
A friend's daughter has just had a 24 hour EEG to investigate something similar but she wasn't having the whatever-they-ares as much as your littlun is. Are the 15 a day spread out evenly or do they cluster around times when she's upset, tired, excited? Has a medic actually seen her do it, or seen your videos?
The 'classic' movement seen in infantile spasms doesn't look like what your daughter is doing. I have no idea if that means that whatever she has going on cannot be that, but that may explain why you haven't had a mega strong response from the paeds.
All the very best. My daughter had occasional seizure-like things on a background of profound and complex impairment - it never became a pressing enough issue for the medics to pursue diagnosis/confirmation.
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.
Has she recently had Flu, Pertussis or combo 5-in-1 vaccine?
Apparently it is very rare but there is an increased risk of febrile seizure post-vaccination.
If you're following the recommended schedule, there is usually nothing given at the 8 month mark so it does seem unlikely.
The side effects are always listed in the product insert which outlines these risks but no-one usually bothers to inform themselves.
https://www.cdc.gov/flu/protect/vaccine/febrile.ht...
Apparently it is very rare but there is an increased risk of febrile seizure post-vaccination.
If you're following the recommended schedule, there is usually nothing given at the 8 month mark so it does seem unlikely.
The side effects are always listed in the product insert which outlines these risks but no-one usually bothers to inform themselves.
https://www.cdc.gov/flu/protect/vaccine/febrile.ht...
AvonM said:
Has she recently had Flu, Pertussis or combo 5-in-1 vaccine?
Apparently it is very rare but there is an increased risk of febrile seizure post-vaccination.
If you're following the recommended schedule, there is usually nothing given at the 8 month mark so it does seem unlikely.
The side effects are always listed in the product insert which outlines these risks but no-one usually bothers to inform themselves.
https://www.cdc.gov/flu/protect/vaccine/febrile.ht...
The video clips linked by OP are not febrile convulsions. They're not super classic for infantile spasms either, but OP, you're on the right track insisting for an EEG with those features and your concerns.Apparently it is very rare but there is an increased risk of febrile seizure post-vaccination.
If you're following the recommended schedule, there is usually nothing given at the 8 month mark so it does seem unlikely.
The side effects are always listed in the product insert which outlines these risks but no-one usually bothers to inform themselves.
https://www.cdc.gov/flu/protect/vaccine/febrile.ht...
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.
IanCress said:
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.
Great news Ian, cheers for the update. We've not had a single occurrence for a week now.
Conclusion? Babies are odd sometimes.
Babies are completely bizarre.
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