Involuntary spasms - any neurologists around or others with 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 just in case.

Very worried so I'm bumping again. Thanks

Hi Isthismummyreallyme, I'm not a neurologist or paediatrician but it could well be epilepsy, infantile spasms or something else.
What you are describing with the spasms/jerks and the clusters and the vacant look and stopping what he is doing all sound like particular seizure types.
Might be worth checking out epilepsy society, epilepsy foundation, Daisy Garland Trust or Matthews Friends websites for information/support. Good luck with everything

Not a medic but it sounds rather like motor tics.

Mumajoy, Thank you very much for those recommendations I have looked at the epilepsy society but not the others!

Our EEG came back clear but he didnt do these spasms during the test done are awaiting a 24hr test. The neurologist doesnt seem urgently concerned which I suppose is good in a way but it's something, something is going on its every day several times in clusters.

Shiny I'll have a look at that thank you.

I would push for an MRI to rule out anything sinister... my son had spasms at 11 months & had an EEG which turned up nothing. The spasms went away, but then he developed a head shake which became progressively worse. Long story short and not to freak you out, but because you cannot be too careful - eventually we discovered he had a brain tumour.

I would also suggest seeing an ophthalmologist. If anything is putting pressure on the optic nerves they can often detect this & it's a non-invasive way to progress to diagnosis or try to eliminate concerns.

Wishing you well & try not to jump to conclusions, but make sure you cover all bases.

And take a look at the brain tumour symptom checker: Headsmart

They sound like Infantile spasms but the fact that the EEG is clear for them is a good thing as the hypsarrhythmia would show even if they didn't spasm during the scan.
It's does sound like there is something going on though. Trust your instinct.

It's been a while and that's down to the neurologist clearly thinking I'm a neurotic mother but after an ambulatory EEG and the a 24 hour stay in hospital video EEG my little guy has been diagnosed with a form of generalised epilepsy. Not sure of the specific yet as apparently is partly a waiting game to see how he reacts to the media and the MRI and genetics. Consultant says beat case 3 years of meds and then all clear however ds already has development issues and I'm absolutely petrified of what's to come! The most awful thoughts of his future keep going through my mind and then I feel guilty of thinking of these as awful as lots and lots of people babies young and old are having to deal with this! WTF is this all about what have I done wrong did I let him bang his head to hard when little? Has his allergies caused deficiencies that have cause epilepsy. Ahhhh these thoughts are killing me inside. On the outside I'm continuing with my family as usual. With my older son like normal smiling and laughing and keeping going. Pointless post really there is no reason for it rather than a rant. Sorry

Rant away. Epilepsy sucks. You don't realise how much until it happens to you.
There's lots of support groups out there op. Look up ESUK on Facebook xx

Thank you! I'll have a look. I just feel totally lost and in limbo at the moment. I hope we get some more clarity as this really is unbearable.
Thanks for listening! X

Hi. My daughter had infantile spasms as a baby and I'm now one of the admins of UK Infantile Spasms Trust - see website and FB support group. From your description it does sound like epileptic spasms may be part of the diagnosis, you would be very welcome to join our group. Lots of our famies have experience with multiple different seizure types. It is really awful being plunged into this new world - it will get easier to cope with as you get more clarity and a plan of action.

I'm sorry to hear about your son's diagnosis - don't beat yourself up, you didn't cause this. You've done well to get to the bottom of it, even though there's still more investigations. It's hard coping with a diagnosis when you don't know what the future will hold, try to take it one day at a time. xx

Thank all so much. I honestly dont know how to cope. He is just my little baby. I have this impending doom feeling and after speaking with the consultant today to try and clarify a few things he didnt put my mind at ease and said to most let's discuss next week at out meeting. I honestly feel there is something else going on that I'm not aware of yet.

Every single second i think of it I cant do anything without this utter dread and picturing the complete worst case as it's got to happen to someone.

Ahhh

You may want to consider speaking with your GP about anxiety meds for you. I wouldn't have been able to cope with my son's diagnosis without them. It helped me to face the difficult situations and choices and not feel so overwhelmed.
It is easy to imagine the worst. You're at the very beginning of this journey right now and you're in the worst part - you will adjust slowly to the new normal, but it's going to be an emotional rollercoaster.

To be a little philosophical about it, I read Michael J Fox's autobiography which is largely about coming to terms with his diagnosis of Parkinson's disease. When he found himself worrying about disease progression, he decided that if you imagine the worst, then it comes true, you have lived it twice, which is just double the suffering. Try not to catastrophize - as difficult as it will be. x

💐

I’m sorry you’re going though this @Isthismummyreallyme

BlackSwan has some good advice though - have a chat with your GP about the way you’re feeling. It’s important to look after yourself too

Thank for the great advice!