Involuntary spasms in 2 year old. Any experience?

[Isthismummyreallyme]

So my DS is 2 and is having these spasms which look like he is getting startled both arms and legs jump forward (no head/neck movement) this happens without fail after each sleep including naps but also randomly during the day. He is wide awake while he is doing them he stops eyes look worried/vacant spasm happens he sometimes claps after and then continues with what he is doing. These happen in clusters from 3 to 30 at one time several times a day.

He has started a little twitch I his left upper cheek/ eye occasionally when doing these and again occasionally shivers with them.

We have seen a neurologist who is sure it's not infintile spasms (west syndrome) due to age and lack of head involvement with them.
He has just had an EEG which we are waiting for the results but the technician was questioning us around if we had had an MRI or were going for one or other tests(we have none arranged) which makes me think she has seen something.

Our son is quite clumsy says only a handful of words doea not sleep well at all.

I'm not sure what I really want from this post is the DR doing everything that should be done at this point? What could this be? Epilepsy? Infintile spasms? Something else?

I am absolutely petrified as I know its something.

Sorry for such a long post.

Bumping- I know it's long sorry.

Just bumping again - obviously worried sick.

Hi OP didn’t want to read and run. It’s not a direct comparison but my LO had her first seizure just over a year ago around 18 months old, followed by 2 others around 23 months. Hers always started c.90mins after bedtime.
Through an eeg it was determined she has focal epilepsy- she’s on a medicine twice a day (touch wood no further seizures) and we are awaiting an mri. No developmental delays so far.
I have no idea it your LO has epilepsy. What I can say is it is nowhere near as scary as you think it he were to have it. Lots of children can develop epilepsy and grow out of it- our care plan is for 2years before we withdraw the medicine and see if there is still an issue. The care we have received through the nhs is superb.
Any talk of being referred to a seizure clinic?

Hi PP, thank you so much for your reply. I'm so glad you LO is so far seizure free it must be such a relief that she is reacting so well to the medication.

Thank you for the reassurance I think it's the unknown that's the most frightening.

His EEG came back all clear but we kind of knew that would happen as he didn't have any spasms in the 30 mins. We are now getting a 24hr at home EEG which is good as he will 100% do a fair few in this period and then we can see what we are dealing with.

No discussion of a seizure clinic as yet although I suppose its because we dont yet know what we are dealing with.

Thank you again for your thoughtful response and I do hope your daughter continues such a positive journey!

X

Has anyone mentioned ASD, OP?

The way you describes the spasms (the arms/leg and happening after waking) does sound similar to Infantile Spasms which my daughter had as a baby but believe that it rare/ called something different after 12 months. There are lots of videos around to compare with - there's several really helpful IS Facebook groups you can join where you can see some. If you do suspect IS, it should be classed as a medical emergency and should seek treatment quite urgently.

You May well need a longer EEG to see the spasms

TheVanguardSix no the DR didn't mention this but from what iv been reading about EEGs research suggests that this would show on the EEG?

Is there a reason you suggest this?

Thank you

Scrutler Thank you. I'm on one of the Facebook pages and uploaded a video where a few people said it didn't look like the usual spasms. I have looked at the videos and it does resemble IS minus the head movement. I did press this point with the DR and he assured me he didnt think is was IS and if for a second he did he would have us admitted however he also said that as nothing showed on the EEG that it wasnt and as he hasnt lost any skills etc. He is one of the head consultants so I have to try and trust what he says I suppose!

We have longer EEG the 24hr one booked just waiting on the date thankfully!

How is your Daughter now? How terribly frightening for you.
Thank you for your response x

The fb group are fairly good at spotting anything suspicious. A 24 hour EEG will pick up anything. Would try and push for that ASAP if you're able.

My daughter didn't lose any skills with IS though as was caught relatively early (within 2-3 weeks) My daughter was successfully treated with a combination of two meds and the spasms stopped within 24 hours and she's been seizure free now for 11 years and is absolutely fine.