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Infantile spasms?

10 replies

Grumpet · 20/08/2020 21:57

Hello, my son is 16 weeks old (12 weeks corrected) and he's never been smooth in his movements but I've noticed he sometimes throws his arms in the air and doesn't look like he's controlling it. Here's a link to a video taken this evening :
I'm really scared he's having infantile spasms. Would you mind looking at giving me your opinions please.

OP posts:
orinocosfavoritecake · 21/08/2020 13:26

I'm not a doctor. I'm not at all qualified to say if that video shows infantile spasms, nor do I have any experience of them.

I do know, though, that it if you any concerns about this you should contact your GP asap. Waiting won't help.

Good luck. You have a very cute baby.

Grumpet · 21/08/2020 15:48

Thank you for your reply @orinocosfavoritecake,
I'm living in France and my whole GP surgery is closed for two weeks for annual leave. You are right though I don't want to be waiting around!
In my late night stress I found the email of a neuro pediatrician and sent them the video. She has booked him in for an EEG next Friday. I will update once we have the results.
Thank you - I feel very lucky with my amazing boy x

OP posts:
orinocosfavoritecake · 22/08/2020 10:34

Great work getting an appointment. You're a very organised mum as well as a very loving one!

HeyThereDelilah1 · 30/08/2020 22:34

Hope he’s ok, my son had similar when he was a baby and it was benign neonatal myoclonus which hasn’t caused him any long term issues, 6 now. Let is know how you get on - he’s very cute!

tornadoalley · 05/09/2020 12:10

I think the jerks are not severe enough for it to be IS apart from one, and babies often cry after the upward jerk. However I'm pleased you are getting advice and an EEG, as that's exactly the right thing to do, and I hope it all goes well.

SomethingNastyInTheBallPool · 22/09/2020 21:33

How did the EEG go, OP? Hopefully you’ll have had some reassuring news by now, but I just wanted to say that my DD was diagnosed with IS and her seizures looked a lot like that.

She was put on a hefty dose of steroids as soon as the doctors saw her EEG and this brought the spasms under control very quickly.

Flowers for you, as I know how frightening it is.

Grumpet · 22/09/2020 22:47

Hello all, thank you for your messages and sorry I've been slow to get back. (We've had teething and a visit from the MIL)
He had the EEG on for 30 minutes and nothing showed thankfully! Would that have been enough time to catch them? They couldn't tell me what the movements were, I was just told to wait and see if he grows out of it. Got told the same when I asked about him sleeping with his eyes wide open!
I am feeling some relief now for sure!
I hope you and your little ones are all doing well x

OP posts:
purplejungle · 23/09/2020 10:13

When my baby had an eeg looking for IS I was told that as long as the EEG recorded some asleep and some awake time, IS would definitely show if present. Hope that helps x

orinocosfavoritecake · 23/09/2020 11:21

Great news Grumpet.

SomethingNastyInTheBallPool · 23/09/2020 18:22

That’s great news, Grumpet. I can’t remember exactly how long my DD’s EEGs were but I’m sure they weren’t longer than 30 minutes.

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