very worried - One year old rolling eyes

[fizz14]

My dd was a year old two weeks ago and over the last two weeks has starting rolling her eyes back her head. She always seems to frown first then all you see is the white of her eyes for just a second then she's fine. It happens once or twice a day that I've noticed. I've even cut her fringe short because I thought it might be getting in her way when she was frowning and she was trying to look at it! but that hasn't helped. Am seeing my HV next week for a routine check so will mention it then but in the meantime has anyone else experienced this, did it go away or what did it turn into? Any advice appreciated

@Atty81 Unfortunately, nothing new. I showed her the videos and she really didn’t offer me much feedback other than order an EEG. I specifically asked if it could be PTU and she said “could be.” We did an EEG but was unable to capture an episode so it didn’t really provide any helpful information.

She suggested doing a 72 hour EEG which I’m holding off for now. Fortunately, her episodes seemed to lessen.

My friend sent my daughters video to another neurologist. He said sometimes babies can have odd face movements after an ear infection because of something with their vestibular balance ? My daughter had an ear infection mid March.

Sorry I don’t have much more information! It doesn’t seem like anyone wants to make a diagnosis without concrete evidence.

@Mam211 I thought you might say something like that. The neurologists seem to be very non-committal. I am 99% sure my DD has Paroxysmal tonic upgaze now. After 6 weeks of not doing them she did one or two then another 3 weeks past and she did some more - at a time she's fatigued again (yesterday). Although her chin does not suddenly lower/drop I can see sometimes she tucks it in very slightly - like when she did some upward eye movements last night in her high chair. It seems there are only a handful of people worldwide that seem to know about PTU properly. An EEG I don't feel will help us as she can go many weeks without having them so it's impossible to predict. I can see why you're holing off on the 72hr EEG. Do keep in touch and I will do likewise if there are any developments. I might also ask some of the others on here how they are getting on on.

@Atty81 After going about a week or so without an eye roll- we had 3 tonight in her highchair. This is so frustrating. Like you said, they are so unpredictable. And when I think we’re finally in the clear, it happens again. I’m so upset. Not sure what to do.

Like you, I think it’s when she’s tired. She also has a really runny nose right now … not sure that matters. Keep in touch

@Atty81 mines also teething

@Mam211 I know it's SO frustrating and upsetting to see them return after a period of relaxing about it. Our 16mo went 6 weeks without any of these and then suddenly they are back - again in the high chair but not exclusively. Eyes rolled up and round and with a frown/squint too and a v slight chin drop sometimes (if I'm looking for it). They are hard to describe aren't they! It's like she's somewhere else when these happen. For our daughter how they look can vary a little between each one but often they come in clusters of 2 or 3 in a row. In addition there are separate deep squints that she does now - they seem to take her by surprise and she looks in discomfort when it happens and she crinkles up her face and recently started slightly jutting out her jaw a little with the facial grimace. Sometimes she holds her hands up to her eyes. Yesterday she was walking and one squinty thing happened and she stopped and dropped the toy she had in her hand. I have no idea what to make of all of this. I am going to contact our Neurologist again here and show them what I've captured on camera and I will let you know how we get on. The biggest worry is what this could all develop into and if it gets's more severe or if it's a marker of something else to come. It's certainly set off a new level of anxiety and worry in me I've never felt before. It's obviously something neurological but like you I feel it's not taken that seriously really. 'IF' it's PTU if feel there's something else possibly going on too. I'll be in touch shortly if anything changes and once we've had Neurologist visit.

@Atty81 thank you ! Let me know what they say 🙏🏻

I’ll keep in touch too.

Hang in there mama

My son of 10 months starts doing the same ,she starts rolling up her eyes when she is on high chair but when I say no don’t do it ,she just watches me and laugh ,I don’t know if she does it on purpose or it’s something serious I took her to GP the other day and he said that as long as she is conscious ,she has no fever and she is not crying I just keep watch her for a week or so .,just worried about her

My daughter has just turned one and this exactly what is happening to her. I have taken her to a&e twice but theyw say theyre not too concerned unless she starts fitting and she is waiting on a seizure clinic referral. Does anyone have any ideas? I am so worried.

From what I could find, my daughters looked the most like PTU - we did an eeg but didn’t catch the episode so they didn’t diagnose her officially. She’s seemingly growing out of it. It was mainly displayed in her highchair and when she was really tired. She’s 18 months now and I haven’t seen an episode in awhile. It had started right after her 1st birthday. Hope this helps !

Thank you so much! This started just after her 1st birthday too. I hope she grows out of it. I'll look into PTU.

@Mam211 @Atty81 Hi both, I still follow this thread as I never did get to the bottom of this with my son and I still always wonder if it’s anything to worry about however I wanted to try to put your mind at ease. What you describe is exactly how my son was, the eye rolls started at 9 months, they were mainly seen in the high chair and came in clusters, as you say some are worse and slightly different to others. He went for weeks / months without doing them yet then they would appear again. I just wanted to let you know that my sons have massively reduced as he is now 3.5. The only time I really see them now is if I wake him up from a deep sleep in the morning, the first few seconds he does it. This is not a normal eye roll, it’s exactly like what happened in the high chair when he was younger but otherwise he doesn’t really do it much now. I saw it once when he bit his tongue in March and prior to that he had a short spell last November but it has definitely reduced massively. I had so many sleepless nights and break downs over the anxiety of not knowing what it was but the one thing the neurologist said to me was if it is getting worse there could be an issue, if it’s getting less frequent and otherwise seems healthy and hitting development milestones he’s not too concerned. Obviously please continue with your tests / neuro apps but I hope this gives you a little comfort as I know how stressful it all is x

@SamSa2018 @Steph92 meant to tag you in the above.

@Mam211 @AT20 @Steph92 @SamSa2018 Sorry for the delayed reply. I also still follow this thread as like many others my little girl (nearly 21 months now) hasn't been officially diagnosed but I'm 100% sure it's PTU having done so much research now and having had other things ruled out. My little girl began with these episodes at nearly 12 months and recently they've reduced but she can go months without any and then they return (although not as frequently, fingers crossed). The same triggers - tiredness, being in highchair, zoning out, ill etc. The sleepless nights and anxiety it brought about as you say was AWFUL, just awful. I'm feeling better now I can see she's developing well otherwise. She's a terrible fussy eater still - but that's probably unrelated. I think she may have some mild sensory issues with food. Also in case any of you don't know about it there's an excellent Facebook group called Paroxysmal tonic upgaze - PTU- (Resources and support group) - that's worth joining. Please do update if anyone has any further information in the future, as will I.

My daughter who is 15 months old started having these eye rolling episodes. It looks seizure related but she never loses consciousness and goes on about her day. Happens more in the morning and late afternoon. Ct came back normal. Had an eeg which was normal but she didn’t have an episode during the test.

@Mam211 do you still have the video of your daughters episodes? My daughter just got over an ear infection last week and we started noticing her eyes rolling behind her head through out the day. Looks almost seizure like but never loses consciousness and keeps playing. She rubs her eyes a lot before they happened. Ct scan and eeg came back normal. But she didn’t have episodes during the eeg. Now I’m wondering if it’s related to her ear infection.

@Evallo my daughters also started after an ear infection! One dr thought that it could be a vestibular facial moment due to the ear infection. To me, it looked like PTU - she hasn’t had any episodes as of late- but they were quite frequent after her 1st birthday.

Thank you @AT20 🙏🏻

Hi everyone! I’ve just read this thread as yesterday, in his high chair, my just turned 1 year old rolled his eyes into the back of his head a few times - at the time we thought he was trying to be funny but this morning after waking up (while still sleepy) he did it again which has made me concerned that he’s not actually doing it on purpose. I’m taking slight comfort in this thread that lots of people seem to be having the same issue at the same age, and the doctors don’t seem too concerned. How is everyone’s children doing now? Anyone’s grown out of it??

@Scottishmumsy mine is 3.5 and seems to have outgrown it. His mri and eegs came back clear. His lasted for a few months then disappeared for a long time. When he was 2 he started rolling his eyes upward again during random activities, but that again lasted a few months and he's not done it again since. His pediatrician was not concerned with these latest eye rolls, as he did not stop what he was doing when he would roll his eyes. For example, he'd be running and yelling and just roll his eyes up while doing so, but he never quit running or making noise when his eyes were rolling.

@jelk thanks for replying, that’s reassuring to hear. I’ll get him checked out but hoping it’s just a phase!

@Scottishmumsy Hiya, my boy is nearly 4 and has almost outgrown it. I occasionally see it if he’s just woken up or if I wake him from a deep sleep but he doesn’t do it otherwise anymore. He had several EEGs and all was ok and he’s very advanced development wise. Best to capture a video for medical advice but try not to stress too much as it could well be emotional / developmental especially as you mention it happens in the high chair which our neuro said it a very common place for Stereotypies xx

Hello,
My child stared doing this eye rolling around 15 months and still intermittently (every now and then) will do it again (mayinly when bored, tired or in the car). We did an eeg and gave a video of the episodes to the neurologist. Everything came back clear and she reassured us that it was a stereotyped behavior (which can be associated with ADHD or ASD but also present in NT children). Now that he is older (2 years old) I cam see he does it on purpose since he sometimes comments about it (eg. He does it saying thing like my eyes roll like Thomas's eyes (Thomas and tank) and laughing).
However I was really scared 6 months ago because it looks really weird but the neurologist told me it is not such a rare tic.
I am not saying it can't be something else but don't panicking too much and just try to catch it on camera and show it ti a specialist.

Has anyone had PTU or paroxysmal tonic upgaze diagnosed for their little one? It is so difficult to find any information, I am glad that I have found these comments here. Our 1 yr old does the chin tilt when this happens in the high chair. Still waiting on answers, so far tests have been normal. Are there any updates? Thank you.

Hi all.. I am glad I found this thread.. my lo is 20 months old now and having a cold right now.. she was absolutely fine and was looking at a picture book when she suddenly started rolling her eyes to the back and seeming dazed and confused.. she was standing upright but didn't respond to us trying to talk to her.. this episode lasted about a minute and then she was absolutely normal again, got back to her playful mode right away.. but we did ring 999 and they arrived within 10 mins. Pulse, BP, blood sugar everything normal and they advised to talk to GP for pediatric referral later. Any idea what might've happened? I am worried sick to my stomach and haven't slept for whole night, so stressed atm 🤕

PS: she doesn't have any significant health issue since birth and has achieved all the age appropriate milestones.

Just reopening this thread. Our DS is coming up 2 years, 3 months and is upward gazing/rolling his eyes to the top right (never to the left).

I first noticed this around a year ago when he had swimming lessons and he surfaced after being under water. Sometimes the pool is quite chlorinated so I thought the water was irritating his eyes.

Fast forward to now and we’ve noticed that he’s starting to do this a lot - most times when he is in the highchair. I’ve also seen him do it standing up. It only lasts a second but he can repeat it quite a few times in a row, especially in the chair. It’s as if he loses control of his eyes. Either that or he likes rolling his eyes that way?

Having this thread it doesn’t look as if there are any definitive answers other than to get him checked out. At least we have a video of him doing it which we can show the doctor.

Other than this he seems pretty happy and normal though very very active. Can’t leave him for one minute without him climbing/grabbing/breaking something! He was walking at 11 months but his speech isn’t that well developed, though it’s improving quickly.

It’s difficult not to think of bad scenarios though it could just be a development stage or something he grows out of.

Thank you for any input/advice.