8 month old shivering/spaced out

[GloGirl]

For a month or two I have been noticing he has been "shivering" when not cold. Only very briefly and only once a day or so and seemed happy enough after it. I've been keeping an eye on it, not Googling and not worrying - just curious.

Today he did it again whilst he was on me and he was playing. I was up close to him this time and this time I noticed he spaced out. He was quite happy and then went a bit, odd. For about 5 seconds (a quick shiver and then a couple of seconds of odd-ness)

We were playing together and he sort of shivered but not just that, pulled a weird face and strange body movements that made me think he was doing a poo. He took a second or two to "come back", I checked his nappy for a poo and there was nothing there.

A quick Google tells me there could be a few things but there is something that people who do Elimination Communication see as a "wee shiver". I wonder if it is just that but I feel really unhappy about how he was more spaced out/dazed than I would normally expect from a "cold" shiver/sensation. IT was about 10 seconds before he went back to giggling with me.

Of course though, if a young baby does a big weird shiver for completely normal reasons I can understand him thinking "Err, what was that what's going on?!"

As additional information - due to slight eye problems in the anterior segment, we are awaiting genetics testing which I think will tell us he has Axenfield-Reiger syndrome. His eye sight is slightly worse in one eye, but has been improving so no patch yet.

What do I do next?

[Pominoz1]

Go and see your GP. It makes me think of epilepsy.

[GloGirl]

Thanks I think so. Just a bit worried about being fobbed off

[Duggee]

It definitely sounds like a seizure. Can you record an episode or at least the recovery to show the doctor?

[GobblersKnob]

Oh ds used to do that, I had forgotten until now, I kept thinking I should maybe take him to the drs I never did and he must have grown out of it, he is now 11.

[Turquoiseblue]

Keep a diary of when it happened and approximately how long it took to recover.
Note if there s anything - like you eyes glazing over, any funny eye movements, breath holding, limb movements or going rigid, breath holding, change of breathing rate or change if colour.
It might be something it might be nothing but keeping note of frequency and pattern- and any triggers you might notice (missing a nap etc) over the next few days is a good idea. You can show this to the GP.
I d ask for a referral to a paediatric neurologist and get it checked out.
It s great if you would record it, but to be honest by the time you ve gotten your phone / camera out you might have missed it.

Hopefully it s nothing but no harm getting it checked out.

[PinkParsnips]

My DD used to zone out for a few seconds when she was a baby and I could wave hand in front of her face and she would immediately respond. she didn't shiver though or pull a strange face. She did grow out of it fairly quickly though so although I spoke to a GP over the phone I didn't take her in but I do remember the GP asking me to keep a diary of when / where / how long etc to show them so that might be something you could do? I would see the GP though to rule out anything like absence seizures etc.

[PinkParsnips]

Sorry typing on my phone - that should say wouldn't immediately respond.

Just seen pp mention about catching it on video, the GP did ask me to do that as well if you can react quick enough to grab your phone

[Diggum]

Agree, see your GP regarding seizures.

If you catch it on camera all the better but it warrants some further investigation based on your description alone so make an appointment either way.

[GloGirl]

Thank you everyone, I will certainly make a note of times and circumstances.

I've been having a quick look on You Tube at seizures in babies and will have a couple of days paying closer attention before I go to the doctors on Monday. I'll definitely try and catch something on video but I'm sure I wont get there in time.

How long could I expect the referral to a neurologist to take?

[YeOldeTrout]

I thought it was normal, they just shake their bodies because they can. Dunno, youngest is 7 & nothing weird has happened yet.

You should film it so that you can show the GP/neurologist.

[AnxiousAggie]

All mine have done 'wee shivers' but i never noticed them zone out with it so i wouldn't presume it to be that.

You've had some good advice here. Make notes, record an episode if you can (easier said than done) and see a Dr as soon as you can. It's definitely worth investigating.

[pinkie1982]

My cousin had this when a baby and it went away and came back during puberty. It was epilepsy.

[GloGirl]

Thanks everyone. He was not right on Saturday and in my worry I decided to go to A&E I shouldn't have done really but I couldn't stop my brain from panicking.

I managed to capture an "absent" episode on my phone, so at least I had something to show the doctor - he said it was unusual and to see the GP on Monday for a paed referral.

Saw the GP this morning and he said it looks like petit mal epilepsy and has made a referral so he can get an EEG.

If anyone knows anything about this kind of thing I have a 15 second video on You Tube of the "absence" if you are curious. Just PM me.

Thanks for all your support and confirmation that I wasn't worrying needlessly with his "episode" on Friday. Especially Turquoiseblue for the detailed list of things to pay attention to

[AnxiousAggie]

I don't have any experience of this but i wanted to tell you there's no need to feel about taking your child to a&e. You were worried and you absolutely did the right thing.

[Turquoiseblue]

Glad you re getting referred Glogirl. Hope your little one is ok, hope you get seen quickly and sorted ASAP.

[AnotherTimeMaybe]

I know two colleagues whose dcs had epilepsy and they both outgrew it by they time they were around 5
I'm sure the neurologist will say the same thing (you should get a referral in acouple of months depending on how busy they are)

Lots of hugs

[gordonpym]

You did the right thing. Well done. Keep the mobile always with you with the screensaver off, so you are ready to capture any more moment. Try to keep a log on when they happen. Time (morning, evening), situation (tired, after eating, when standing up, TV on/off, light... ), meal diary, epilepsy seizure have often a trigger. In absence seizure it is more difficult to identify the cause, sometimes it0s the rapid breathing.

An EEG if done in between absence seizure won't show anything, so that's why you need to provide the evidence. Push for a referral with a neurologist

[GloGirl]

Thanks everyone, been trying to keep a beady eye on him for the past few days and have recorded some things.

I have a 15 second absent seizure recorded.

I have managed to get a shiver on camera, but I just don't think from all my Googling that it is a seizure which is ironic because it was the first symptom that made me think something was "not right".

He has episodes of twitching which make me uncomfortable. Again I can't work out what it is - I showed the paed doc at A&E and he said it looked normal to him but I know he's not right when he is like that for 10-20 minutes or so (he is not twitching for 20 minutes, it is just every so often through a period of time). I don't think he's doing a myoclonic jerk, it is more neck/shoulder than arms and legs but he has moments of looking confused during this - but not significant lengths of absence. I have pointed it out to family and they don't see it.

But then I think everyone would think I was talking crap unless I had this 15 second video of him completely in a trance. I am so lucky I caught it.

I am SO worried for him. I am lucky again because my husband has private health insurance through work for emergencies and they are going to cover him to see a consultant. I'm slightly panicked that maybe he should be in the NHS system in case what is going on is 'acute' but if it is 'only' petit mal epilepsy it would be great to get it diagnosed as quickly as possible.

I'm not sure if he needs an MRI whether I should go back to NHS? I don't know if that kind of thing is best discussed in a team or whether seeing a private consultant to get it assessed is better? I don't even know how I could switch.

I'm worried there have been a few cases of white matter abnormalities in children who possibly have A-R syndrome that there is something greater going on than childhood epilepsy that he could hopefully grow out of

[GloGirl]

So delighted to be able to come back and update this thread with good news. He does not have epilepsy!

I was able to take lots of videos of his unusual behaviour and absences and show the neurologist who listened and watched all I the info I had gathered, and he isn't having seizures at all. He has 'gratification disorder' - otherwise known as, ahem, infantile masturbation.

I'm really over the moon. The big giveaway was his odd behaviour was often witnessed when he was in his high chair. It's also quite common for it to occur in car seats, or sat on the floor. I didn't notice any odd behaviours whilst he was lying down or crawling.

Just wanted to update this in case anyone else might find this thread in a search whilst they are also worried about their babies. Epilepsy is a common misdiagnosis for gratification disorder

adc.bmj.com/content/89/3/225.full

[MrsMozza]

I think my little girl has it too - she's almost two and we noticed her doing it when she was around 18 months, then it seemed to stop. I too took her to the docs and they confirmed it is Gratification Disorder (infantile masturbation). It is definitely a relief that it isn't anything serious, however, how does one explain this to grandparents!?? Any ideas? It seems a bit more accepted for a boy but not so much for a girl.

[SnotGoblin]

What you're describing sounds like baby having a wee. They do a little shimmy and glaze over because it feels warm/weird. By all means get it checked out but it really sounds like baby having a wee .

[SnotGoblin]

Oh just saw the update. Brilliant it's not epilepsy.