Baby not following light at 8weeks

[Bagofweasels]

Just got back from 8 week baby check and DD has been referred to pediatrician (I guess an eye specialist one) as the GP said she isn’t following the light with her eyes properly, I had noticed this but I thought it was a bit early to worry about it, she said her eyes also twitch a little bit, the eyeball from side to side, again I thought weird eye movements were kind of normal at this age ai’m sure my other DD’s had similar and they are fine. I guess I’m looking for reassurance has anyone been referred for this and it’s turned out ok?? She said the pupils were normal and the back of the eye whatever that indicates. She’s smiling so she can obviously see!

Do you mean that her eyes are constantly moving from side to side?

Like this?
D

Sometimes it can only happen when someone is looking in a particular direction.

@underneaththeash she does that too, not constantly, mainly when feeding or not looking at anything in particular. I think dr was more worried she wasn’t following the light when she moved it around

He's done the right thing by referring you.
It may be that she does have nystagmus, sometimes it's associated with delayed visual maturation (so eyes take a little bit longer to mature than other babies, but get there eventually).
They'll do lots of tests at the hospital and give you some answers. But if she's smiling at you and grasping for things, I wouldn't be too worried.

@underneaththeash thanks 🙂 yes she’s smiling and making eye contact, hopefully it’ll be ok, trying not to Google!!

Hey, how are the eye movements now?
my little one is 4 weeks nearly and Iv seen it 3 x now where she’s breast feeding, half asleep and her eyes move side to side xxx

@ViennaVogue she’s doing great now, tracking really well and laughing and copying facial expressions and things, she’s 18 weeks today. She does still have the nystagmus and we’ve got an appointment with the eye specialist in a few weeks because of that but I’m confident she can see. Hopefully the nystagmus isn’t related to anything else, not sure if they grow out of it or not

Hello,
my baby does this eye movement when feeding, he’s 10 weeks and I’m so worried I’ve done something drastically wrong with him. How is your little one now?

Are they doing it at any other times?

@JordaineM she’s ten months now and completely fine, she sees the eye consultant as she does have mild nystagmus but they’ve done tests and it’s not related to anything untoward, just ‘one of those things’ her vision seems normal for her age but she’ll have regular eye tests until she’s school age just to check it. They said the most common cause of nystagmus (without any other problems) is albinism or ocular albinism and they will test her for this when she’s older but there’s no treatment and she is very blonde but so am I so they think it’s just her coloring and not necessarily related to the nystagmus

I think he did it whilst on his bouncer this morning, but for a split second (so maybe I am imagining it as I’m worked up about it)
he’s done it on quite a few feeds since I’ve noticed

Thank you so much! That’s so good that it’s not anything untoward and her sight is developing normally. I hope all is the same for my little one 🤞🏻

hiya sorry for messaging. My 11 week old has an appointment with the gp for suspected nystagmus today - picked up by a health care worker. He seems to move his eyes side to side when drinking / sleepy. I’m just wondered how things progressed for your baby?

Hi @Mylesmummy123 my daughter has just turned one and is doing great! She’ll have regular check ups with the eye consultant as she does have what they call ‘idiopathic congenital nystagmus’ it’s not as noticeable now she’s a bit older, if you didn’t know I don’t think you’d necessarily notice her eyes moving it’s more when she’s sleepy. Her vision seems fine so far but it’s hard to tell at this age. It can be caused by loads of different things, they think hers might be a form of albinism but they’ll maybe test for that when she’s older, they said sometimes it just happens for no reason. I think if they are worried about more serious causes they do an MRI, they can tell from looking at the back of the eye and the way the eyes move sometimes what’s causing it. I was really worried to begin with and she might need glasses in the future but they've said not to worry she’s doing great 😊 hopefully your baby will be fine too, if they do have nystagmus it’s not as scary as it seems! X

Hi thank you so much for responding to me. I went to the GP today who was so flippant and explained they can see the nystagmus too, and that “he could be blind, could be partially sighted, don’t know “ refused me a urgent referral to the eye hospital so I took myself up there, the consultants were very lovely. They have told me that they think he does have nystagmus, but said it could improve as his eyes are still developing. The optic nerve does present slightly small on the right eye, but that could also get better. Referral to rule out some neurological issues, but they’ve said this is highly unlikely as Myles presents an otherwise healthy baby. No albinism for Myles. Would you say that the left to right movements appear better? Had the consultants said that they can see improvements for your little one? Sorry, I’m just trying to take it all in xx

I wouldn’t be too cross with the dr @Mylesmummy123 they don’t really have a choice when it comes to how quickly you can be referred for eye problems. They’re triaged heavily.

it’s really difficult to know what the outcome might be, some people with nystagmus have very poor vision, some pretty normal, especially if they can move their head into a position where the nystagmus is less. it also depends on if there is an underlying condition.

new born babies don’t see very well anyway and it may be that his eyes need more time to develop.

make sure he’s getting lots of visual experience.
hope it works out.

@Bagofweasels glad your LO’s doing well.

Hey! Thank you so much for the reply, I wasn’t cross with the GP, more frantic! But the eye hospital were fantastic.

they think that there is no other condition related but will do further tests, I do hope for a positive future. How’s things with your little one? Xx

@Mylesmummy123 yes we’ve seen the pediatrician three times I think now and each time he’s noticed the nystagmus has slowed down he said he could barely see it the last time. The eye consultant said she can notice it but it’s mild. When we first saw the GP at 8 weeks she said oh she might be blind and she was doing this weird nose twitching thing also, so she said she might be having seizures I was terrified 🙈 she didn’t do that thing dr’s normally do where they say “it’s probably nothing but I’m referring you to be on the safe side” she was just like yeah I don’t know if she can see. Just doing her job it’s fine but it was a tense few weeks til she saw the specialist.
Everyone we’ve seen including the GP’s who’ve noticed it when I’ve been in with my other DD’s have asked about the birth.. it seems birth trauma and lack of oxygen is a cause, it’s not the case with us but they keep bringing it up so if you had an easy birth I guess you can rule that out. They said albinism is the next most common cause and after that structural abnormalities of the eye (but they can rule this out fairly quickly) and then it’s just one of those things having ruled out the other stuff. They said it can be genetic and I think you can request genetic testing, we haven’t yet. it’s a wide spectrum with the eyesight from very poor to almost normal and I think it’s difficult to tell until they’re older it’s just a waiting game. It’s worrying but there’s worse things 🤷‍♀️ all we can do it wait til they’re a bit bigger and they can tell us what they can see!! Xxx

@Bagofweasels I know the feeling, I didn’t get much reassurance at the GP ( I am not blaming her, just don’t think she had answers to give) I believe I did the right thing going up to the eye hospital, and at least I have a diagnoses. Bit worried about the neuro testing- and also genetic testing. During birth we had a forceps delivery I now wonder if that has anything to do with it. How are you noticing your little ones sight ‘seems’ if there is such way to try to second guess? X x

@Mylesmummy123 DD’s vision seems normal as far as I can tell at this point. If she didn’t have the nystagmus I wouldn’t know anything was ‘wrong’ she’s just the same as my other DD’s were. I don’t personally think she has albinism she is white-ish blonde with pale blue eyes but so am I and my vision is fine. My other DD’s are dark though with brown eyes 🤷‍♀️
I think I worried more because of the suggestion she was having seizures and we did the neurological testing because of that really (it was absolutely fine btw, no bother at all 👍) it wasn’t seizures she was fine and she’s grown out of the nose twitching 🤣 I think I put two and two together and made about 50 🙈 from the sounds of it the birth thing is if they were struggling for oxygen following the birth?? I think that’s what they were getting at? I think a forceps delivery wouldn’t be an issue in itself. Hope you’re ok I remember how worried I was xxx

Nystagmus is one of the eye conditions I have. They can usually tell around the age of 4 in terms of what the child can see - it plateaus by that time.

In my case it hasn't - parents were told it was "just" Nystagmus and some 30 years later, they think there'd something more going on. Awaiting MRI results and for genetic testing. It appears to have got worse (it will vary due to tiredness) and there's no obvious reason why.

@Bagofweasels no, no lack of oxygen that I’m aware of at least! Perhaps she’s just got lighter hair than the others. Can I ask what the pathway was from diagnoses? For example doc/ hospital appointments following up? Xx

@Mylesmummy123 so it was picked up at our 8 week GP check and then she referred us to the pediatrician partly for the nystagmus but also the suggestion of seizures. We saw the pediatrician at 12 weeks (I was a right mess by this point 🙈) he said she seemed fine otherwise and might grow out of the nystagmus and he also wasn’t worried about seizures but did refer us to neurology to make sure (that appointment was a few weeks later) He said he would put in a referral to the eye consultant as it was a long wait and better to get it in early than to ‘see how she goes’ and then end up waiting longer. I think we saw the eye consultant at 6 months and then again at 9/10 months. And now we see her annually and the orthopics lady 6 monthly to check she doesn’t need glasses. All fine so far 👍
I have read that in other countries they do an MRI as standard but the pediatrician said they don’t do that in the UK unless there is suspicion of brain damage from birth or other reasons. I’m not sure they’ll do genetic testing as a matter of course either unless I push for it. The consultant said you have to sort of know which thing you’re looking for?? Turns out DH’s uncle has nystagmus, we never knew or noticed it but maybe there is some sort of genetic component 🤷‍♀️ i struggle with not knowing what’s caused it but am also grateful it doesn’t appear to be anything alarming and that she can see fine for now 🤞🤞 xxx