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[Illuminist]

Hey all, wondering if someone can help me.
My 4 month old son has his 16 week injections on Friday. Saturday night he has a 37.c fever, then Sunday morning I notice he was having spasms, I thought it was reflux at first but as it got to night time I noticed he was repeatedly scrunching up, head forward, knees up for 2 seconds, then after a few seconds he would do it again and repeat.
I Googled it and was confronted by west Syndrome. I read about it and cried. Booked an appointment at the doctors for the morning on Monday.
Told the doctor about it and she said there could be many reasons why he is doing this, did I have any video?.I said no, she booked us in for Thursday. Tomorrow.
My wife is in complete denial and keeps saying, it's gas, it's reflux, it's his teeth. But I have been watching him have these spasms everytime he wakes up, and periodically throughout the day.
Tonight he woke himself up with them and proceeded to scream for 30 minutes having little spasms through out. I called 111 and a doctor will be calling me back very soon.
Does anyone else have any insight or advice, or what will come next. I have loads of video footage for tomorrow. And I'm scared. Please, anyone?

 

[Spammeh]

@Illuminist We can't give medical advice on this forum unfortunately. I can't imagine how scared you may well be, but speak to the doctor / medical professionals, they are far better placed than a bunch of people here

 

[Illuminist]

@Illuminist We can't give medical advice on this forum unfortunately. I can't imagine how scared you may well be, but speak to the doctor / medical professionals, they are far better placed than a bunch of people here

At the hospital now. I meant anyone here that has a child with west syndrome, infantile spasms that has been through this already , and what it means and if it's a bad as I think

 

[AhhBisto]

At the hospital now. I meant anyone here that has a child with west syndrome, infantile spasms that has been through this already , and what it means and if it's a bad as I think

Sorry to hear what you and your child are going through. Hopefully the hospital will give you answers quickly don't worry yourself with what the internet says.

 

[Tonyabrhm]

Hey all, wondering if someone can help me.
My 4 month old son has his 16 week injections on Friday. Saturday night he has a 37.c fever, then Sunday morning I notice he was having spasms, I thought it was reflux at first but as it got to night time I noticed he was repeatedly scrunching up, head forward, knees up for 2 seconds, then after a few seconds he would do it again and repeat.
I Googled it and was confronted by west Syndrome. I read about it and cried. Booked an appointment at the doctors for the morning on Monday.
Told the doctor about it and she said there could be many reasons why he is doing this, did I have any video?.I said no, she booked us in for Thursday. Tomorrow.
My wife is in complete denial and keeps saying, it's gas, it's reflux, it's his teeth. But I have been watching him have these spasms everytime he wakes up, and periodically throughout the day.
Tonight he woke himself up with them and proceeded to scream for 30 minutes having little spasms through out. I called 111 and a doctor will be calling me back very soon.
Does anyone else have any insight or advice, or what will come next. I have loads of video footage for tomorrow. And I'm scared. Please, anyone?

Personally if it was me i'd be in A&E straight away. My daughter had a fever after injections and started shaking as it was quite high so I took her into A&E straight away.

Hopefully its nothing serious!

 

[ci_newman]

When a child (especially a young child) is suffering from a fever, it can often manifest in seizures

Google is the worst thing for researching symptoms, you can find almost anything to fit any given situation.

Listen to the hospital and trust their guidance.

 

[Illuminist]

Sorry I was in a panic when I typed.
What I should have said was.
Does anyone here have a child diagnosed with I. S or infant epilepsy? How are you coping and what is it like after diagnosis.
I appreciate the answers although not what I was asking.


The thing with Google is, if I hadn't used it, we would still be at home wondering what it was and thinking it would pass. Until it got bad enough that we took action. I'm not stupid so what googling actually did was catch it very early, which is really good for this illness. Not condoning Google, but I guess if you aren't silly about it, it can be a saviour.

We are in a and e awaiting a brain scan

 

[Tonyabrhm]

You are still panicking and jumping to conclusions!

Like we have said, seek medical guidance (which you have) and wait for diagnosis.

You don't need google to know when to go to hospital, just go without hesitation if you have any doubt whatsoever.

Fingers crossed for your little one mate! Keep us updated.

 

[Illuminist]

You are still panicking and jumping to conclusions!

Like we have said, seek medical guidance (which you have) and wait for diagnosis.

You don't need google to know when to go to hospital, just go without hesitation if you have any doubt whatsoever.

Fingers crossed for your little one mate! Keep us updated.

I really don't know why I bother ever coming in here.
I just want to know if anyone has experience with this illness, not consultant neurological reports.

 

[Bhoya]

Sorry I was in a panic when I typed.
What I should have said was.
Does anyone here have a child diagnosed with I. S or infant epilepsy? How are you coping and what is it like after diagnosis.
I appreciate the answers although not what I was asking.


The thing with Google is, if I hadn't used it, we would still be at home wondering what it was and thinking it would pass. Until it got bad enough that we took action. I'm not stupid so what googling actually did was catch it very early, which is really good for this illness. Not condoning Google, but I guess if you aren't silly about it, it can be a saviour.

We are in a and e awaiting a brain scan

Just to add a note of encouragement, when my daughter was about 6 to 8 months she went through a period where she would have spasms in her face, neck and shoulder. It worried the bejesus out of my wife and I and we had her at the hospital repeatedly when they seemed to be ramping up. You look online and there are some things which sound terrifying and life impacting. In the end after an ECG and other tests, and showing the consultant at Addenbrooks the videos of it happening - it was put down as 'benign infant spasms' and they were absolutely right that she grew out of them.

His explanation was that there are a lot of unexplained reasons why spasms can happen, but not all of them are actually to worry about. Keep taking recordings of them happening because half of the time, by the time you see someone they will have just stopped and you will be panicked and unable to show why you are there. Fingers crossed for you all that it is a similar panic about nothing.

Edit - EEG I meant. They also did an ECG to rule out it being heart-related but the main test that helped with the diagnosis was the EEG.

 

[Illuminist]

Just to add a note of encouragement, when my daughter was about 6 to 8 months she went through a period where she would have spasms in her face, neck and shoulder. It worried the bejesus out of my wife and I and we had her at the hospital repeatedly when they seemed to be ramping up. You look online and there are some things which sound terrifying and life impacting. In the end after an ECG and other tests, and showing the consultant at Addenbrooks the videos of it happening - it was put down as 'benign infant spasms' and they were absolutely right that she grew out of them.

His explanation was that there are a lot of unexplained reasons why spasms can happen, but not all of them are actually to worry about. Keep taking recordings of them happening because half of the time, by the time you see someone they will have just stopped and you will be panicked and unable to show why you are there. Fingers crossed for you all that it is a similar panic about nothing.

Edit - EEG I meant. They also did an ECG to rule out it being heart-related but the main test that helped with the diagnosis was the EEG.

Thank you

 

[gonda]

I hope all went ok Illuminist, I can only imagine it makes you feel very scared and helpless when something like that is happening to your child, sounds like you've done exactly the right thing though.

 

[Illuminist]

I hope all went ok Illuminist, I can only imagine it makes you feel very scared and helpless when something like that is happening to your child, sounds like you've done exactly the right thing though.

Been here for 2 nights so far, still spasms, he is constantly being monitored and blood tests happening. EEG results tonight, so it's going to be a long horrible time. Worried as it's taking time when I just want to know and treat him not keep watching him doing them all the time...

Thank you for the kind words gonda.
They said 1 in 200 children can have these spasms, I wrongly assumed there was that many people in this thread to find someone else with this experience

 

[V_R]

Just catching up on this thread. Jeez, that sounds horrible, I feel for you. Hope the results are good news.

 

[eddie101]

Went to our first NCT class last night, had no idea what to expect before hand but really learned a lot. Met some other expectant parents our age and quite local to us which was nice.

@Illuminist I hope you get some good news buddy, can't imagine the worry.

 

[Illuminist]

Went to our first NCT class last night, had no idea what to expect before hand but really learned a lot. Met some other expectant parents our age and quite local to us which was nice.

@Illuminist I hope you get some good news buddy, can't imagine the worry.

So.... Its exactly what I thought it was the very first day I saw it. Infantile spasms or child epilepsy.
Thanks Google, on this occasion with careful reading I actually may have actually saved my son from brain damage by getting him to hospital way earlier than if I had listened to the doctor.
They have started him on steroids in a hope that it will be treated within a fortnight.
Its possible it won't work but I'm pushing for the best.
Is a relief and a horrible result at the same time. Just gotta hope the little man recovers now.

Thanks for those that gave me positivity

 

[Kill_Phil]

@Illuminist sorry to hear about your son, can't imagine the stress and worry you'll be going through having a lil un myself. I find it hard to trust GPs being a jack of all trades n all that.

At least you're in the right place! All the best to you and your family.

 

[NiCkNaMe]

Sending positive thoughts mate, and well done for pushing forward with getting him seen and onto treatment. That's half thet battle. TheyreT strong little buggers and I'm sure he'll bat this off

 

[gonda]

Yeah all the best @Illuminist, really hope the treatment does the trick. My sister in law's gone into labour in the last 24 hours, will be my first nephew so at least I'll get a little practice in looking after one of these baby things before ours arrives later in the year!

 

[subbytna]

Potty training twin boys is going to be the death of me

Week 4 and minimal progress made. When I potty trained my daughter, she was done in a week!