Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Behaviour/development

Talk to others about child development and behaviour stages here. You can find more information on our development calendar.

Flip

1 2 3 4

Original poster

very worried - One year old rolling eyes

100 replies

fizz14 · 29/11/2003 16:36

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

OP posts:

Marinayia · 13/01/2023 05:21

Hi @Atty81
We noticed it shortly after his first birthday and noticed everything you've listed. We were told possible absence seizures but like you our eeg came back inconclusive. We also did a ct scan and thank God that was all clear too. We were then meant to go in for a 24hour eeg but the episodes had stopped before his appointment. They lasted for about 7-8months with 10+ a day but he has not had one since. So while I don't have any answers, they did disappear for us and I hope they disappear for your little one too.

Atty81 · 13/01/2023 10:41

Thank you Marinayia that's so kind of you to let me know. I'm so gad they have stopped occurring for your little boy. I'll keep my fingers crossed too. It's so perplexing isn't it.

Emmm1324 · 13/01/2023 21:37

Our little boy is 3.5 now. They stopped for him when he was about 2.5. We never got an answer despite 2 eegs and an mri. We are so sure they were seizures. He also has development delay but has improved out of sight since they stopped. I hope you get some answers. Hang in there and sending you lots of love.

Atty81 · 31/01/2023 19:33

Thank you @Marinayia and @Emmm1324 for your help. We noticed that our little girl knows they are happening and she points to our eyes as they happen.

AT20 · 19/03/2023 06:06

My son has finally been diagnosed with Stereotypies and ADHD. I’m just so pleased we have a diagnosis that finally makes sense and it isn’t harmful. Obviously, please see a GP if your child is doing any unusual eye movements to rule out anything sinister but I wanted to share my son’s diagnosis in case it helps anyone as apparently it is quite rare. It was described to me as the brain works really fast and can’t always keep up so when a child is excited, stressed, anxious, happy, basically any high emotion, the brain goes into over stimulation mode and involuntary movements can occur. These usually onset before the age of 2 as I understand. Hope this might be the answer for atleast some of you!

www.evelinalondon.nhs.uk/resources/patient-information/your-childs-stereotypies.pdf

mthrofflwr · 19/03/2023 15:07

@AAT20 did your baby speech delayed

mthrofflwr · 19/03/2023 15:20

@MMarinayia does ur lo developed speech

AT20 · 19/03/2023 18:43

@mthrofflwr no he always hit his milestones and is very clever, he just can’t sit still and is extremely hyper 24/7. The stereotypies in his case relate to the eye roll which I haven’t seen for a few months (he has just turned 3) but he regularly gets on the floor and squeezes when excited and tired still.

Mam211 · 14/04/2023 17:26

Hello,

I'm wondering if anyone has any updates? My 1 yo is doing this now in her highchair.

Has anyone gotten any answers or issue resolved?

Thanks for your help.

AT20 · 15/04/2023 02:54

@Mam211 please check with paediatrician or neurologist but if there is a pattern e.g in the high chair which was always my sons main place of eye rolling as a baby, it could be Stereotypies which isn’t harmful, link below if helpful. I had never heard of it until last month when neurologist concluded my sons case, he still does it age 3 but a lot less and mainly when emotions are high or in the car seat.

https://www.evelinalondon.nhs.uk/resources/patient-information/your-childs-stereotypies.pdf

Atty81 · 15/04/2023 12:20

Hi @Mam211 my daughter started with this just before her 1st birthday (she is 15 months now). She began with suddenly looking up and her brows lowering to a frown. This went on for some time. She had an EEG that didn't show anything. Absence epilepsy wasn't ruled out but the neurologist didn't think it was this and neither do I now. Anyway it sort of changed and moved on to be more of just frowns/squinting with my little girl knowing they were happening I think - and she would point at my eye or say 'eye'. The stopped completely for 6 weeks and then yesterday she suddenly frowned a little in high chair and didn't a few squints changing her nappy and once when I was holding her. They suddenly seem to happen it loose like, almost as if something is bothering her. The neurologist suggested possible tics. I'm not entirely convinced by that either but it could well be. In all other ways she seems to be developing fine - she's walking and talking. She's not the best eater - quantity or varietym she's quite fussy, but I don't think that's too unusual. It's a real nuisance not having concrete answers isn't it and just waiting to see how things turn out. I've looked at the Stereotypies information @AT20 helpfully posted about and I'm not sure this necessarily fits either for my daughter but it could be, I don't feel I can rule anything out. We've left things 'open' with the hospital but I'm not sure what else they can do right now. Tiredness certainly seems to contribute to them happening for my little one. In terms of temperament she's not overly hyper but she's not a chilled toddler either (if any of them are ;0)) What we all want of course is for this to be just a passing thing in their development. I'm not sure I've helped much with this post - but you're not alone in your wondering at least.

Mam211 · 15/04/2023 17:49

Thank you ! My daughters symptoms sound so similar to your experience- I have an appt on Monday w the pediatrician. As you said, It’s scary not knowing!

Mam211 · 15/04/2023 20:15

@Atty81 did yours have a history of ear infections at all ? Mine had an ear infection & fever before the eye roll started happening.

Atty81 · 15/04/2023 20:51

@Mam211 no, no ear infections and I don’t think a fever no. It just started out of the blue

Mam211 · 17/04/2023 02:48

@Atty81 http://www.neuroophthalmology.ca/case-of-the-month/eye-movements/looking-to-the-heavens

Does this sound like it? paraxyl tonic upgaze?

» Looking to the heavensCanadian Neuro-ophthalmology Group

http://www.neuroophthalmology.ca/case-of-the-month/eye-movements/looking-to-the-heavens

Mam211 · 17/04/2023 03:12

@Onlyoneshoop I think my daughter fits the criteria for Paroxysmal tonic upgaze. Any updates with your little one?

Atty81 · 19/04/2023 18:55

@Mam211 Initially we wondered if our daughter's eye movement were absence seizures because she looked up and stopped whatever she was doing and kind of froze and seemed absent - but after a month or so we felt she wasn't really absent during them and then we felt 95% sure it was PTU (paroxysmal tonic upgaze) but she didn't really do much head lowering (I noticed a tiny bit early on). As time went on they kind of morphed/changed and they were more deep frowns and/or eye squints with much less less looking up. She seemed to be aware of them with her pointing at my eyes whilst happening or before/after occurrence. Sometimes is feels like it's some kind of disturbance happening to her that's bothering her. 6 weeks passed - without any at all that we were aware of - and then a few funny eye movements a few days ago but not many. 85% are in the highchair and when she's tired. I don't think it is PTU now and I'm not fully convinced it's tics. I have to say though earlier in the year I worried myself sick about it and lost a lot of sleep. I'm trying to keep an open mind about it now and just observe her for the moment whilst remembering to enjoy her rather than just worry. Easier said than done I know. I know tics can come and go and it could be that but something about it does not scream tics to me but they can vary a lot and they are not always how we imagine. Our daughter seems to be developing well otherwise. She's 15 months and learning lots of new words, loves going on the baby swings and little tantrums have started as she starts to push boundaries and demand what she wants - so all good signs.

Mam211 · 20/04/2023 13:20

@Atty81 this is my daughter 100%!
Im thinking PTU because that’s the closest condition that I’ve found to matching her episodes- but like you said- her chin doesn’t go down. Also, she’s had some instances where she grimaces in her eyebrows, but her eyes don’t roll up ( and sometimes they do). It’s mainly in her high chair. We have an appt w neurologist on Tuesday. I’ll let you know if they mention anything we haven’t thought of.

Thank you for your response, information, & understanding. It’s reassuring that I’m not alone.

Atty81 · 20/04/2023 20:27

@Mam211 You're absolutely not alone. Just tonight our daughter did one of the eyebrows frowns with some squinting in her high chair. She has been a little more tired today than usual and was also upset going to bed and I'm pretty sure it's because she's teething. I've often wondered if there could be a link between the two; could be coincidence though. Oh yes do let me know if the neurologist shares anything interesting, thank you that's very kind.

mthrofflwr · 03/05/2023 05:37

My girl is 6 months old rolling her eyes head back and flapping hands This lasts for 5 seconds I'm very worried

mthrofflwr · 03/05/2023 17:13

@Atty81 it seems like my DD has tonic upgaze cause her chin goes down and eyes roll back 😭😭😭😭😭😭😭,does anyone going through this and turned out Neurotypical ,i wish I was never born ,why God punishing me like this ,i don't know what to do ,I'm having panic attacks..why my children have this rare condition 😭😭😭

Mam211 · 04/05/2023 00:25

@mthrofflwr try to get a video of the episode to show your DD’s doctor. If it is PTU, many children grow out of it.

mthrofflwr · 04/05/2023 01:47

@Mam211 but50% child has developmental delays who has this ptu

Anonymouslyikes · 05/05/2023 23:07

My daughter has just been diagnosed with nystagmus. When she was a baby she used to laugh at the curtain pole (we thought)! She does shake her head subconsciously, but other than that there was never anything to suggest a vision issue. When I took her to high street optician previously it was missed, and has just been picked up following reception class screening. Not sure how relevant that might be to any of you.

Atty81 · 10/05/2023 21:50

Hi @Mam211 did the neurologist share anything helpful? My little girl has some episodes tonight and I managed to get some recorded so I will book in to see a neurologist too. She is tired today because We had a long day travelling yesterday so she didn’t get to bed until 11.30pm (usual bedtime around 7.15).

I hope you’re feeling a bit better @mthrofflwr I understand it’s very worrying. If it helps my little one is 16 months old today and she seems to be doing well otherwise - she’s a very fussy eater mind! I don’t know if our little one has PTU either

Flip

1 2 3 4