Really freaking out please help

[Hopefullynoneedtoworry]

Posting for traffic because I really need the hive mind/any doctors or nurses or medical professional/anyone with experience of this to tell me what the hell they think this is:

My son started today randomly crinking his neck, so that his ear touched his shoulder. Not a big deal, right? Except that at the same time his arm was pulling up and making a bit of a deformed claw with his hand. Every time. He is otherwise well but I emailed the paedatrician who has come back with quite an alarming email about needing to come in and see him ASAP. Not sure when he has availability waiting for an appointment but now DH and I are extremely worried about what this could be.

@Prontoe

Why would you assume that? I am indeed in the UK.

Paedatrician seeing him
Thursday. Will
Take him to the park later and see if it’s repeated again when he’s outside.

That’s great news!

Currently the NHS is quiet and paediatricians do run emergency clinics, also people have private paediatricians they can get into see quickly as well.

Yes, we have a private paedatrician due to his operation as a small baby

Actually not sure this is relevant
But DS has always had little shivering episodes. Just suddenly thought about it as he just did it. I just assumed it was normal as I get them sometimes

My DD used to get shivering moments. Kind of shaking. Saw a paediatrician and it got diagnosed as stereotypies which is involuntary movements that they usually grow out of

Thank you @twistyhair

I'm pleased you've got a prompt appointment Op and hope you can get to the bottom of this soon.
I think as previously advised, it would be very helpful to film an episode of ds involuntary movement on your phone to show the doctor.
Good luck.

My grandson used to do occasional shudders and I googled it and found it coincided with him wetting his nappy.
www.livescience.com/63197-why-pee-shivers.html

Hope it goes well today OP

@KingaRoo thank you for remembering.

Not really a huge update. Paedatrician did the basic checks - no obvious neck or wrist/hand injury. Neurological responses to light normal. Ears fine. Nothing obvious the matter enough to take testing any further at this time due to lack of repeated episodes.

But...

He was quite clear that this behaviour was abnormal and definitely not a toddler just mucking around or exploring his muscles. He said it could be a tic or some sort of muscle cramp, but it could also be seizures. The only thing to do is to continue monitoring and see if they reoccur. Obviously he gave me a list of things to look out for and when it’s a seizure which requires an ambulance, or when it just means we need to proceed with testing but in an non emergent way.

So reassuring, but not completely out of the woods. Basically what most people on here said anyway!

He does sound a little young for tics although it’s not impossible.
Does he ever do any throat clearing, squinting, scrunching his nose or anything like that? Sometimes when you start looking you discover tics that have been present for a while without you realising.
My son started quite suddenly at 6 and very quickly progressed from a little nose twitch to a very alarming neck stretching one.

I'm so glad you have seen the paediatrician and had some reassurance. It might never happen again - fingers crossed - but at least you've flagged it up as something to be concerned about and now know what to look for going forward.

You sound much calmer than earlier in the week Op! It sounds as though your paediatric consultant is taking you seriously and is happy to do more tests. It's just watch and wait now I suppose. Maybe keep an eye on his little "shivering" thing he does and see if they're connected?

He may be referred to a neurologist if you think he's had a mild seizure. There are tests they can do to rule that out.

Hope your little guy is ok. It's good that he's happy and well in himself.

Thank you everyone xx

I’m glad the paediatrician is taking it seriously and helping you keep it under active review

Did doc take bloods?

I know it’s been a month but I wanted to update everyone:

My son has been continuously doing the neck “thing” for a month now. 2 weeks ago he also developed an intermittent limp and funny walking. The Paedatrician is now extremely concerned re the possibility of neurological problems/a motor disorder. He has had some bloods which are fine, some ultrasounds which were fine and is due an MRI, potentially with lumbar puncture and more bloods whilst under the GA for those two this week or next.

It’s very scary and worrying. Speaking to neurologist tomorrow to weigh up the need for other tests and get her thoughts, but ideally want to limit the testing to this, rule out the worst and just monitor.

Anyway, that’s the update. Thanks for all of the previous advice.

I am sorry to hear that things have progressed; being a parent is so hard.

My son got very ill when he was little and it took it right out of me.

So glad that you are getting the help in these covid-19 times.

Have they mentioned pandas?

Oh OP. Not the update you’d hoped for I imagine. I hope the conversation tomorrow goes well

An obviously very worrying time for you, sending you a virtual hug. It sounds like you have a stressful few weeks ahead of you, try and look after yourself. Good luck tomorrow. 💐

Thank you for the support

@LordOftheRingz

Yes - the blood tests ruled this out

@LordOftheRingz

I’m sorry - I posted when tired and barely registered your post. What happened to your son? Is he alright? I hope so x

[quote Hopefullynoneedtoworry]@LordOftheRingz

I’m sorry - I posted when tired and barely registered your post. What happened to your son? Is he alright? I hope so x[/quote]
Oh he's fine. I was only alluding to how hard it is with a child with complex needs.

How worrying for you OP.

Hope he's ok