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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Really freaking out please help

133 replies

Hopefullynoneedtoworry · 11/05/2020 17:46

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.

OP posts:
KingaRoo · 11/05/2020 19:48

It could be epilepsy related but it could also be a tic. I know a 1 year old that did this and she was seen that same day by a paediatrician who was worried it was epilepsy. Had all the tests done and it wasn't epilepsy even though it looked very like it. Turned out to be a habitual tic that the parents were told to ignore ie don't draw the child's attention to it, and it went away by itself in 6 months.

Prontoe · 11/05/2020 19:48

Well fine. If you're all happy to advise a mother with a child going into spasm to just sit back and wait, fair enough.
I never weigh in normally on medical issues, but my opinion (non medical) is different to yours.
If it was my child, I'd be racing to A&E.

IcyWind · 11/05/2020 19:49

Has your doctor gave you any idea on why he needs to be seen ASAP

kyles101 · 11/05/2020 19:49

Ring 111 for a second opinion.

KingaRoo · 11/05/2020 19:51

And my friend's DD would do it much worse some days/times than others. No pattern to it. Parents were so worried but turned out to be nothing.

Prontoe · 11/05/2020 19:53

I was 'so well in myself' that the paramedics made me walk to the ambulance. That's when everything started to seize up on me. They kept telling me to stop panicking, but the pain of my hands seizing was horrific.
I'm just saying what my experience has been.
I'm as much qualified to say what I think it is, as all of you saying that it's a tic.

Original poster
Hopefullynoneedtoworry · 11/05/2020 19:53

Has your doctor gave you any idea on why he needs to be seen ASAP

No which is why we are very nervous because the implication is there is an issue here but no clue as to what he thinks. Presumably he doesn’t want to say via email.

@KingaRoo
Thank you - that’s reassuring

OP posts:
KingaRoo · 11/05/2020 19:54

I doubt you'd get any sensible advice from 111 from personal experience. Sorry but you need tests done by a paediatrician. He/she didn't tell you to go to A&E but to come in for an appointment. Even when epilepsy was suspected my friend still had to wait a couple of weeks for tests. I'm just saying not to panic.

SmileyClare · 11/05/2020 19:55

Ok apologies Prontoe I understand why you wanted to flag up your own experience. It does appear that ops son has an infrequent spasm rather than a severe deficiency causing uncontrollable progressively worse muscle contractions.

The advice always is to seek immediate help if symptoms worsen over time or new symptoms appear.. Op I would try to discretely video your son's movement and call the paediatric consultant in the morning to allay concerns.

flapjackfairy · 11/05/2020 19:56

Just to be clear seizures can and do stop and can come and go in clustering patterns so the fact that it stopped doesn't mean it isn't seizure related.
I am not saying it is of course as hard to know without specialist tests. Is it a sudden movement or a slow. stretch ?

Nottherealslimshady · 11/05/2020 19:56

I do this. Didn't as a child. It started in my teens, about 10 years ago. For me it's just a tic, I feel a build up of pressure kid if in my neck and after the tic it's gone. I have autism so do tic and stim quite a bit.

1Morewineplease · 11/05/2020 19:56

See what the paediatrician says first.

Prontoe · 11/05/2020 19:57

Well, I guess, if you trust your paediatrician you do nothing.

LordOftheRingz · 11/05/2020 19:57

My son started tics out of nowhere, and did a claw like manoeuvre with his hands, like pulling them up like a hamster would, neck bending is also another well known tic. It could be just tics or it could be PANDAs that give a sudden onset of tics due to strep throat, or other issues. Tics can wax and wane, and if all his other vitals look ok it could just be tics. Has he ever done blinking a lot, or clearing throat stuff?

Lockheart · 11/05/2020 19:57

Please ignore everyone on the internet. You have no idea who's qualified, unqualified, posting in good faith or just having a laugh and winding you up.

Please only listen to your real life doctors.

Nottherealslimshady · 11/05/2020 19:58

"Pressure kind of in my neck"

Tjsmumma · 11/05/2020 20:03

OP was it voluntary? Like did he do it and was aware n active? Could he just be hypermobile or was he spasming?

Original poster
Hopefullynoneedtoworry · 11/05/2020 20:04

It’s not a sudden, jerking movement

OP posts:
mrsmummy111 · 11/05/2020 20:04

@Prontoe Personally I don't think it's fair or necessary to pressurise the OP to do what you think she should do. I think you've done the right thing in sharing your experience and your concerns, but there's little need for the reverse psychology. It's a sensitive situation and she is clearly very concerned, you don't need to make her feel guilty for trusting her paed!

Prontoe · 11/05/2020 20:05

Please only listen to your real life doctors.

My real life doctors told me that I was being discharged. So I was talking to my brother on WhatsApp and he said ask them what your magnesium is because I knew I wasn't well enough to get off the trolley. So I did. Doctor went off in a huff and suddenly I was admitted (8 days), as my magnesium was so low. Magnesium isn't tested in a Full Blood Count, so you need to know to look for it. I was given Mg drips every day for the 8 days in hospital and it still only got it up to 0.6. It's supposed to be 0.7 minimum. My only advice is to take your doctors advice and do not believe that this is a tic.

Original poster
Hopefullynoneedtoworry · 11/05/2020 20:05

Has he ever done blinking a lot, or clearing throat stuff?

No

Surely if the paedatrician thought something life threatening was possible, he would have mentioned that.

OP posts:
iano · 11/05/2020 20:10

@prontoe I am so sorry you had a bad experience but pp is absolutely right. Op needs to listen to her real life doctors.
You are not a doctor and you have very limited information here. Your brother is not involved.
I know how hard it is to separate ones own near death experience from someone else's similar symptoms but what you're doing is not helpful. Your symptoms were different.

Prontoe · 11/05/2020 20:10

When are you seeing the doc?

How is your ds now?

Mlou32 · 11/05/2020 20:11

@prontoe with all due respect, you have relayed information from a forum, via yourself, to your brother who is a doctor. So your brother has what, second hand information which has been taken off an anonymous forum? Not exactly a reliable diagnosis, is it. Also just because you had something similar, doesn't then mean that every single person who presents with symptoms similar to yours has the same thing.

SFCA · 11/05/2020 20:11

My brother had loads of tics when he was younger. They came and went and he has no additional needs or anything now.