Baby head nod/twitch... sick with worry

[RubyFruitSunday]

I'm trying not to panic but I've been googling and getting Infantile Spasms for this with serious health implications.

Basically I've noticed my 7 month old sometimes does this little twitchy movement where she nods her head downwards for a second then back up. It really does look like a twitch. She only does it when she is sitting.

My mum doesnt think its anything to worry about and it's just because shes teething at the moment but I feel sick with worry.

Has anyone else ever experienced something like this with their child?

Thanks

Oh I so feel for you! Both my babies have done many many strange twitchy things (head nods, shoulder shrugs, ear-to-shoulder twitches etc) and I've panicked about IS every time! It was all fine of course. I think likely teething or onset of ear infections.

However saying that if you genuinely think it could be IS then you need to seek professional reassurance. It's vanishingly rare as a condition though so it's almost certainly fine.

So. If you think it is infantile spasms it is a medical emergency. You ideally need to get to a children's a&e (preferably a large centre where they have in house neurology).
It is imperative to try the catch then on video so make sure you have a few of those.
There is a Facebook group that can help you if you need more info.

www.facebook.com/groups/1600888383553097/?ref=share

Thank you both. I was so worried I ended up driving her to the children's hospital and we are being referred for an EEG to check nothing sinister. Am absolutely beside myself with worry.

All the best, OP. I’m sure you’re very anxious but it’s the right thing to get this checked out and hopefully the results of the tests will be reassuring.

Very pleased you did that. You'll be taken care of and it will give you the answer you need. Please look at that Fb link for support and hopefully it is nothing.
But you have done the right thing getting it checked out so quickly

Sounds really sensible. Am sure all will be fine but definitely worth ruling out x

I’m glad you went to A&E - when I read your OP I wanted to ask if this is recent or has always happened as my son had this all of a sudden and luckily it turned out to be febrile seizures. Harmless and can come and go. Fingers crossed it is something similarly harmless

Thank you all.

@MummytoCSJH yes recently just the past week that we have noticed. Hope your son is ok x

The other thing we have noticed is that she only really does it when there are no toys around, so when theres nothing else to do basically. If she is playing/eating/lying it doesn't seem to happen.

Yes get it checked until you are satisfied you got to the bottom of it.

Our situation ended up being in the super super rare category but rare as these things are, sometimes they do happen. My son had spasms/twitches at 11 months - had an EEG, all clear. Then it stopped. Some months later it came back as more of a head shake/nod. Progressively got worse. At 2.5 he was sent for an MRI... was given the all clear. Head shake got worse still, I went out of my mind with worry and kept going back to the drs. Got all sorts of BS explanations and brush offs from Drs ('he's quirky'/he's compensating for a very mild nystagmus/'common things happen commonly... fine print diagnoses rarely occur')

A few different specialists reviewed the MRI & a year later he was diagnosed with a brain tumour which on the first scan was missed because it was hiding in another brain structure). Of course, by that time, the tumour was bigger.

So investigate & keep track of how this progresses. If you're concerned - keep going back to the drs.

Oh @BlackSwan I'm so sorry that you were fobbed off and for your son and your family. I hope he is doing well now.

She hasn't really done it too much today but we are hoping to get a phone call from the neurologist tomorrow to get booked in for an EEG.

Its terrifying.

He's doing really well Ruby, we are so fortunate.

I almost didn't post because I can see you're very anxious, but I think it's important to know you have to trust your gut. That doesn't mean it's necessarily anything sinister, but things like this need investigation. Advocating for your child's health isn't always easy. You're doing entirely the right thing & hopefully the EEG will give you reassurance.

That is great to hear @BlackSwan.

An update for those of you that have been kind enough to respond to my thread - DD was seen today in hospital by 2 different pediatric neurologists who both said they are confident it isnt infantile spasms based on the videos of her doing it and the lack of any other symptoms. Most likely a behavioural/developmental thing but not a worry. However they are still going to do the EEG, hopefully in the next couple of days to rule it out for sure.

So I'm still holding my breath but feeling slightly more reassured x

Just another update in case anyone else happens to stumble across this.

Had the EEG just now; not had the full report as itll take a few days but man doing the test said unofficially it's not infantile spasms. So that's a relief and hoping the results come back ok.

I've been following Op, even though I haven't posted before.

That sounds really positive. Hoping for reassuring results too

Brilliant OP

That is really wonderful news. Breathe!