Funny Turns

[Clarinet60]

DS2 will be 3 in May and for a few weeks now he has been having episodes that look like ecstatic seizures, which usually come on when he's excited. These 'turns' last for about 30 seconds, his hands go into a gripping spasm, he breathes heavily and grunts, he dribbles and if he's standing up he falls over. It's a controlled fall usually, and speaking to him will bring him out of it sooner.

Has anyone else heard of this? I'm taking him to see a GP next week, but I don't hold out much hope of finding out anything useful.

bump

Sorry you've had no replies, Droile. Hope someone can come up with something useful - it sounds frightening.

hello droile, havent seen you around for ages. Are you worried it may be epilepsy?

ds1 did this a lot when younger. he used to go all rigid when excited and shake. If he was sitting down he would hold his legs rigid above the floor shaking his arms and legs and turnig his feet.

Still goes a bit 'stiffy" (as my mother insists on calling it) when excited. I spoke to school about it last week and we agreed it was unlikely to be neurological as he can stop it when asked (although he might start again straight away) and also he doesn't do it at school. He's done it in front of a paediatrician before as well who kind of ignored it (even when I asked what it was). That paed was useless though- didn't know much about anything.

Hi Lou, yes, I've been busy and weaned myself off. Yes, I am worried it might be epilepsy. I've just looked on the epilepsy.org website and his symptoms fit some of the epilepsy syndromes described. Like Jimsjams son, he can come out of them if you talk to him, but another will usually come along soon after, and he falls and injures himself if we're not careful, especially on the chin, which is classic.

Jimjams, that paed sounds worse than useless.
I'll report back when we've had our appointment next week.

i know a fantatsic paed neurologist who does private and nhs work. He treated dd1 and sees ds2 now, i can find his number if you want? Am also epileptic, and have been since about 6m old, so if there is anything i can help you with, feel free to ask

Thanks Lou, I might, I'll let you know - I'll give the local ones a fighting chance first. What type is your epilepsy?

i usually have absences, but have also had tonic clonic ones (the type you lose consciousness and thrash about)

to be fair to the paed though I don't think it is anything seizure wise in ds1 (although being autistic we have to be on the watch out for them). His experienced SALT who saw it thought it might be a refection of a sensory need. Certainly they've reduced since starting at his new school (where he gets a sensory programme every day).

Hope the dr gives you some answers.

My DD does something similar when she gets excited, especially if there is football on the TV for some reason!! My DD who is 3 has low muscle tone and although her old physiotherapist hasn't seen one of these 'turns', she did suggest that by getting excited my DD may throw her body off balance and she has to tense herself to feel stable, (well thats how I interpreted it anyway!!). I have been a little worried about epilepsy as well, but DD is fully 'with' us when these happen so it is probably more likely to be what her physiotherapist thinks.

Because DS is often 'with it' too, I hadn't thought it was epilepsy either, Dellie, until I looked at epilepsy.org and found that some children will try to speak when having a seizure and will often slur, so are at least semi-conscious. There are partial seizures, and, basically, such a wide variety of seizures that misdiagnosis is fairly common.

Anyway, I've been to the GP and he has referred DS to a specialist 'fairly urgently'. However, he asked me some funny questions. He brought up the fact that DS had been a twin (we lost his twin early in the pregnancy) and was he, therefore, 'very precious' to me? Er yes....
We had already established that there weren't any developmental problems with DS by this point. I had also explained my job (biologist & health researcher) in the hope that he wouldn't have me pinned as a flapping mum, but it makes me wonder........

I'll update you when we've seen the specialist.

The latest is that he's been having much more frequent seizures, if that's what they are, and a spectacular one at playgroup which freaked everyone out. The GPs still think it's breath-holding, as he's at 'the classic age', but there is no sign of any breath holding - we can see and hear him breathing. He's got his appointment with the paed next week, but it's only a general paed to begin with.

Lou33, looks like I might be taking you up on your offer of the number for the neurol paed soon. Did you have any trouble getting your diagnoses? I know it's very hard to diagnose, but they seem to focus so much on their differential diagnosis that they can't see the wood from the trees round here.

I'm getting fed up now.

Hi Droile, do you want to cat me, or shall i post general details on here?

is it always when he's excited droile? nursery sent ds1 home once as they thought he was having a seizure wnhen he was doing one of his "stiffy" routines (mum's words). I'm about to see if I can find anything official on them- I know they're common in autis from talking to parents- and so I'm guessing they reflet a sensory need or an overexcited nervous system! If I find anything that may be of vinterest to you I'll post.

Thanks jimjams. It started out only happening when he was excited, but now it happens any time.

I'll cat lou, thanks.

Just to update eveyone, we saw a really great paed yesterday who listened carefully and examined him thoroughly and they think it's epilepsy. He had an EEG yesterday and will be having a brain scan next week.

Hope they get him sorted soon droile, thanks for updating us.

Droile - thanks for your cat. I have cat you back - hope you got it OK. How did your ds react to the eeg - dd1 has got hers next week, and I don't think she'll react well to it! (I don't think I'll react well to it either!) Your ds's epilepsy sounds quite similar to dd1s, but she seems only to have the absences, doesn't fall down or anything. Just lately though, she's started twitching her head when she has a seizure (like this morning, when she was standing on the edge of the sofa - I'm surprised she didn't fall off!). We started making a note of how many seizures she was having every day, to try and establish if there was a pattern, but there's nothing there to show one. Nothing specific seems to trigger it off either - it's really very frustrating, isn't it? I have to say we saw a great paed who is also an epilepsy consultant. The consultant was at St Mary's Hospital in Portsmouth - don't know if that is anywhere near you. (She was also recommended by DH's neurologist as he's got "sleep" epilepsy.) Feel free to cat me any time.

Thanks Kando. He reacted quite well and sat very still. we took him back for a 24 hr EEG yesterday and he says it hurts but is being very good and stoical. He even had a full night's sleep wearing the contraption, but goodness knows how. We take him back to hospital this afternoon to have it removed. I'm in the Northwest, so nowhere near your paed, unfortunately.

Have you had EEG results yet, Kando? We still haven't got results from ds's 24hr one. He's had some really bad fits today.

Droile, jst wanted to say I'm really sorry to hear about your little boy suffering. You must be very worried.

Sorry I haven't got anything useful to contribute.

Thanks for the support lima, it's much appreciated.
Just heard today that the eeg results could take up to 4 weeks. meanwhile he's falling over and injuring himself left right & centre. They really do look after children's health in this country NOT.

have they started him on any medication?

No, Lou. It looks like it's going to be a long slog. His lovely paed retired a couple of weeks ago, so we now have to start all over again with someone else.

So sorry to hear this Droile; hope you find something out as soon as possible.