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.

Best of luck to you, you must be worried sick.

Thank you all - MRI, lumbar puncture and an extensive round of DNA blood testing tomorrow. All under general anaesthetic.

Neurologist thinks most likely dystonia (well done to the PPS who mentioned this), but critical to rule out tumours and all the scariest of things.

It’s very difficult as I don’t want to discuss with friends as 1) no diagnosis yet 2) I’ve told a few but actually the whole “he will be fine” attitude is not even remotely helpful and 3), and I know how this sounds so hope people understand what I mean, I don’t want people to think there is something “wrong” with my son. He’s hitting all verbal milestones of a 3 year old despite not being 2 and I’m
So proud of him! I don’t want for example if he has dystonia, which is labelled as a disability, people to misunderstand.

Although at the moment I just want to know he’s going to be alright, nevermind anything else.

He sounds like a very able little boy. Totally get what you are saying about being labelled due to a potential disability. Think all you can do is take one day at a time. Nothing set in stone at this moment. Hugs to you. There is nothing worse than worrying about your child.

He sounds amazing, good luck today! I hope it’s as easy a procedure as possible for the little man.

Good luck for today. You don't have to tell anyone until you're ready, and good friends won't judge him. They'll see him for the amazing little boy he is.

Big hugs

how was it for you all? x

How is your DS now @Hopefullynoneedtoworry? Hope you are all okay.