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.

The doctor still hasn’t come back
To me with an appt. I will have to call first thing in the morning to chase. DS Sleeping peacefully. Usually he wakes up at 21.00 and if he doesn’t I will bring him down Into our bed as would rather he sleep with us

I haven't relayed any info.
I've simply told you what happened to me.

As advised, seek immediate help if his condition worsens or he develops new symptoms. I hope you can relax a little Op and rest while he's sleeping.
Don't hesitate to contact your paediatric doctor again. Due to the pandemic consultants are actually less busy and able to triage virtually and arrange swift appointments over the phone.

As an aside, no one should feel nervous about visiting hospitals due to CV risk. The departments are well managed and all areas segregated.

Hopefully nothing wrong.

Note. I am in no way medically qualified or anyone know well.

I watched this programme last week
www.bbc.co.uk/programmes/articles/5KRm8Yw1w6lmkTKbdPvTnBB/what-is-pandas-and-how-do-i-spot-it-in-my-child

Was very informative and quite scary about tics. Advice from doctors to help parents. hope it's nothing serious.

Episode here.

Trust Me, I'm a Doctor, Series 9, Episode 4

Even if it's not an emergency per se (as in, you go to A&E and they sort the problem out) I would start keeping a log of such instances if they happen again. I got epilepsy age 11 but didn't go straight to full seizures. During the onset I had instances similar to what you describe which we didn't think much of at the time but which made sense in retrospect. Try not to worry, you've got an eye on it and can get to hospital if needed.

If epilepsy/seizure is something you’re worried about, I have a small bit of advice that may help if he does it again. My daughter had epilepsy from 6 months until about aged 3.

It’s quite hard to tell some seizures from just normal weird small kid behaviour as they do odd stuff all the time. He may, for example, have just pulled a small muscle in his neck and was just stretching it out in a way that instinctively felt good but looks weird to adults and is nothing to worry about, or maybe he found a new way to tense his muscles that feels funny to him. Kids are really weird and do weird stuff.

One way I was advised by our neurologist to tell If something was epileptic or not was to gently (unexpectedly) touch the cheek, near the eye. If the movement is epileptic in origin the affected part won’t react as they are not in control of the movement and can’t release it. If it’s caused by something else then they would typically flinch, jump, move away, release the tension etc. It doesn’t help you identify what else it could be but may help rule out or in epilepsy.

If they don’t react make a note of everything you can - direction of gaze of eyes and which way the head turns, and film it if possible, it will help the neurologists a lot.

Good luck op, and remember you’ve already spoken to his very highly qualified and experienced doctor who rightly wants to check him out but isn’t panicking that it’s an emergency so don’t panic yourself. X

Hope your DS is OK OP. I just want to add that when my DS suddenly developed apparent tics and twitches having never had them before, 111 sent an ambulance immediately.

It wasn't life-threatening, but checking whether it was was considered an emergency.

Thank you for all the advice - this is all great information to have. I really appreciate the input

Hope he’s ok and you can relax a bit. let us know how he gets on.

Hope you're ok Op. It really is awful as a parent when you have concerns about your child's health and have to wait for answers You're in a good position that you can access help if you need to and have direct communications with your paediatrician.

@smileyclare

You are right - we are lucky and I’m holding onto that. Plus DS seems happy enough and no other symptoms. It’s just all so odd.

Hope you’re ok OP, it must be difficult. Do keep pestering if it gets worse.

I really don’t see @Prontoe’s advice as any more dangerous from other posters saying’oh it’s a tic / fine’ etc

Yes Yes to filming it if it happens again. In case it's a seizure of some kind and he's not responding, you can also (on camera) go and flick him between the eyes at the top of the nose. The response (or not) to that will also help the paediatrician a lot. DD had a seizure as a child and after that we were told to have camera ready to video (and even nursery had to have cameras ready to film if it happened again) - it's hard for them to diagnose if it's not happening often enough to see one 'in action'.

Another possibility - my spinal joints move out of place due to weak connective tissue, and can compress a nerve, causing my hand to spasm into a claw. In my case my vertebrae can easily be moved back, releasing it, but if there was pressure on a nerve for too long then it could cause paralysis of that arm and so it's a medical emergency.

With him being happy and all, sounds like tics to me. Especially as you said they come and go, any new medications, vaccines recently?

If you son has tics, or even if he does not, best defence is no talking about them at all, talk about them makes them increase.

Sounds like a tick to me

OP hope you get some answers soon.

I had cholecystitis on 3 occasions and luckily never experienced what prontoe has.
I just couldn't breathe properly, couldn't catch a breath!

How is ds today? How old btw?

I hope your son is ok this morning.

I expect your paediatrician wants to test for epilepsy therefore wants to see your child ASAP. However that’s why he wants to see you, because he doesn’t know. It could just be a childhood tic.

If what he’s having are seizures they are not life threatening at the moment. I would keep a close eye on him, record as much as you can - timings, what he was doing before, how long it lasts, is he aware, can he talk to you etc. If the actions last more than 5 mins please phone 999. TBH even if you see your pead he is unlikely to refer you for an EEG unless they continue. Good luck - we’re getting to know the epilepsy rollercoaster ourselves at the moment.

Paedatrician opens at 9 have called and left a message will call back at 9.

DS is just about to turn 2. He seems totally normal - haven’t seen any more of these behaviour this morning as of yet.

Good there’s been no more episodes this morning

I'm assuming you're not in the UK?

Really good news that no further episodes.