Anyone out there with Nystagmus?

[OurLittleBlessing]

I have an appointment with an opthalmologist next week, but I'm pertty sure he's going to say that DD2 has nystagmus. She fits the description to a t.

Feeling very very down about her future and what it might hold.

Anyone with any experience with this? Either for themselves or their child?

I'd love to hear from you.....

[OurLittleBlessing]

Bump. Anyone?

[SimplyMum]

Never heard of it- what are the symptoms? How did you notice it- scan, behavioural patterns etc etc?

[lulu 2]

I have known 2 ppl with nystig and it doesn't seem to have affected their lives ,it can be difficult to concentrate while talking to them at first as their eyes do not sit still and it is hard to see how they see properly but yeh I asked one woman who had it if she could see properly and she said it didn't bother her too much.

[bada]

My best friend in school had it. The biggest problem for her has been not being able to drive. She had some difficulty reading from the blackboard in class but I would just read it to her. She was an avid reader of books - always reading at every opportunity, she was very intelligent, scored well on her HSC, went to uni and is gainfully employed now. We went to a fair sized school (130 odd students per year) she was never picked on for it, in fact most who knew her (including me) wouldn't notice it, although it was quite severe. She had plenty of boyfriends (actually stole mine... lol) and it truly has not been a hindrance in her life, apart from not being able to drive (but I am 28 and still don't drive anyway!!).

It would be hard not to worry but I hope this story helps.

[Tatiana28]

Hi there. My daughter had it when she was little. Started about 4 months. I noticed it when I was feeding her. Her eyes would shoot side to side really fast. We went to an eye dr. who really didn't know what was causing it. He just said it will either get better and she'd grow out of it or it would get worse and he would do more tests.
It was found later she was very vitamin D deficiant. Once she started taking pentavite (baby multivitamin) it seemed to ease off.
I don't see any at all now. She's 13 months.
So may be worth checking full blood work for other causes?
Good luck

[erinrose]

A big positive YES from me!! My cousin/goddaughter has it. She is now 17yrs old and it hasn't had to big an impact on her life! I know that nystagmus is often related to spina bifida & other disabilities, but this is not the case for our Megs.... She even has her L's & is going for her P plates this month. Her eyes do flicker, she has worn glasses from time to time, more to correct her astigmatism. It was a worry when she very very young, as my aunt & uncle didnt know what the future would hold for her or if she would be able to drive. She has learnt to compensate for eyes by holding her head a certain way (slightly tilted) & you dont really notice, except that her eyes flicker if you look closely. I only spoketo her about it recently & she said its not too bad. All I can say is don't panic, just wait & see, Our Megs has turned out fine...if you like I can call my aunt & get more specific info for you if you need. Hope this helps to reassure you.. Good luck :)

[OurLittleBlessing]

Thank you so so much for replies. The positive stories actually made me cry a little.

Extraordinary - I noticed it because she is not making much eye contact at all. she also seems to have trouble with her sight in general. Although we 'think' we have seen a small improvement. Her eyes drift back and forwards, sometimes slowly and sometimes jerkily.

Thought I would add a bit more info in case anyone else searches for this later.

Other than her eye problems, DD2 is developing well. She can roll over both ways and hold her head up well. Although sometimes it jerks around a little which can also be a symptom of nystagmus, but also might just be because she is only 13 weeks old. She is starting to put toys to her mouth that we have placed in her grasp. She is no way near reaching out for toys yet, I think this could be because she can't see them much if at all.

She has the most sweet temperament. Hardly ever cries, is happy to 'play/be' with us or her sometimes over enthusiastic older sister lol, but is also happy kicking her legs under her play gym. Not sure if she can see it much, but she seems to enjoy it none the less, so she might. She has been able to self-settle (no crying) almost every sleep, pretty much since she was born, and is already sleeping from 7 - 7 at night with only one feed, usually around 1.30am.

It breaks my heart that people are already treating her a bit differently, mainly because she can't make eye contact (although she does manage a tiny bit with me and DH). Also some people seem to find her drifting eyes quite off-putting. If it turns out this is not nystagmus, I dont' know what the heck it is.

I look at her older sister (20 months), who is SUCH a social butterfly, and has social skills way beyond her age, and I wonder what the future holds for her 3 month old sister. More than anything I want her to be happy and healthy. I would swap eyes with her today if I could.

I'm sure that a large part of her happiness/success in life is going to depend upon how DH & I handle this, so I'm trying to pull it together, but it's hard as the information I have read seems to indicate that she may be almost blind and live a difficult life.

Anyway, if you've read all my ramblings, thank you.

If anyone else has any other positive stories to share, please, I would love to read them.

[OurLittleBlessing]

Off to the ophthalmologist today..... very nervous.

[Tatiana28]

Hope all went well. Thinking of you.

[erinrose]

Hope all went well, let us know wont you.:hugs: ps my god daughter
with nystagmus competed in horse riding at the hawkesbury show & came 5th in pairs & 4th in jumping!!

[funnyfarm]

Hope everything went well at your appointment.

[OurLittleBlessing]

Thanks for your kind messages.

Erinrose - it's great to hear about your god daughter's sucess with horseriding! Well done to her!

Well, the ophthalmologist pretty much confirmed what I thought. She definitely has nystagmus, and we are not sure how much she can see. Her vision is not good, but we have to see the paediatric ophthalmologist in a fortnight to get more of an idea of what kind of nystagmus it is and what, if anything, can be done.

She is starting to fall behind in some of her milestones which is a bit worrying. Still such a happy little girl though. She is coping much better than me.

I feel a bit silly for being so upset about this, when I know that a lot of people face much much worse.

Thanks again girls.

[littleleos]

hey I remember you user name from aug o8 bubs... my o8 bubs has a stabismus. im not sure if it is similar to your bubs problem but you can tell his eye is abnormal when u look at it. we have been seeing a paediatric opthamologist for about 4 months and his eye sight is improving YEAH... we just have to decide when we want to have the cosmetic surgery to correct his eye muscle... its scary. I cried all the way home from our first appointment.

good luck.
we saw kim tan at marobra

[OurLittleBlessing]

hey I remember you user name from aug o8 bubs... my o8 bubs has a stabismus. im not sure if it is similar to your bubs problem but you can tell his eye is abnormal when u look at it. we have been seeing a paediatric opthamologist for about 4 months and his eye sight is improving YEAH... we just have to decide when we want to have the cosmetic surgery to correct his eye muscle... its scary. I cried all the way home from our first appointment.

good luck.
we saw kim tan at marobra

I remember you too! I think your username used to be different? Thanks so much for your reply. We are also seeing Dr Tan. Next Wednesday actually.

That's great that your bub's eyesight is improving! If you don't mind me asking: how is he going with his development? Not sure if the problem is similar or not... but I'm worried DD is going to fall behind. She is doing super well with all her gross motor stuff but obviously falling behind with fine motor which would make sense given that she can't see properly.

Have you had any insensitive comments? I am starting to get a few, and I am still really sensitive about the subject..... a bit hard to deal with sometimes. I think I need to toughen up a bit :o

[littleleos]

Hey.. I used to be lianas1stbub

I think it might be alittle bit similar... but im not an expert.

dr tan is teriffic, you will see someone before him who will do a few eye test and possibly give some eye drops... the eye drops dilate their pupils so dr tan can have a look inside... aidens stayed dialated for 3 days :( so it was really hard for him to see... dr tan also said to us that the earlier u find a problem with a babies eye the easier it is to fix as everything is still developing.

we have been getting afew coments, mainly from family and friends, but strangers have only commented on his patch. a little boy asked him mum "why does that boy have a patch on his eye" and the silly mum just dragged him away, I guess she didnt know what to say or was possibly embarrased.

Aidens decelopement is fine... we go to gymbaroo which is all about fine motor skills and balance and co ordination etc. he has started using his bad eye which is fantastic, his brain has switched it back on. so now we have to decide when he will have the op, its only for cosmetic reasons so I think we are going to leave it till he is older.

good luck with your appointment... the pie shop down stairs rocks!

chat to u latter

[OurLittleBlessing]

Hey.. I used to be lianas1stbub

I think it might be alittle bit similar... but im not an expert.

dr tan is teriffic, you will see someone before him who will do a few eye test and possibly give some eye drops... the eye drops dilate their pupils so dr tan can have a look inside... aidens stayed dialated for 3 days :( so it was really hard for him to see... dr tan also said to us that the earlier u find a problem with a babies eye the easier it is to fix as everything is still developing.

we have been getting afew coments, mainly from family and friends, but strangers have only commented on his patch. a little boy asked him mum "why does that boy have a patch on his eye" and the silly mum just dragged him away, I guess she didnt know what to say or was possibly embarrased.

Aidens decelopement is fine... we go to gymbaroo which is all about fine motor skills and balance and co ordination etc. he has started using his bad eye which is fantastic, his brain has switched it back on. so now we have to decide when he will have the op, its only for cosmetic reasons so I think we are going to leave it till he is older.

good luck with your appointment... the pie shop down stairs rocks!

chat to u latter

Thanks again! Good to know a little of what to expect. I'll let you know how we go next week.

Oh, and congratulations on your pregnancy! It is awesome having two. You are going to love it. My eldest DD just LOVES her little sister. :goodvibes:

[littleleos]

I reckon aiden will make a top big brother, he has gone bubba crazy.

my friend is off to see kim tan today with one of her twins. he was premmy and wears glasses, he looks so so cute. she said he was walking around yesterday saying tim tam!!!!

[OurLittleBlessing]

Just bumping this up to see if there is anyone else out there with nystagmus?

[melbmumof1]

Hi

We took our little boy to the Dr last week as his eyes were seeming to roll to the left.The doctor thinks it is nystagmus so we got a referral to an optimologist which is next week.
I was just wondering if any one with nystagmus has noticed when the eyes roll that their head moves slightly to one side?
Any comments would be helpful

Thanks

[OurLittleBlessing]

Hi melbmumof1,

How old is your DS? I have heard that sometimes people with nystagmus can develop a head shake as it can help them see a little better. I think this was mainly in older bubs/adults though. Sorry I can't be much help I am still learning all about this too!

[melbmumof1]

Thanks for your reply..
He is 4 years old. When I made the appointment at optimologist I forgot to ask how they bill you. Do you know if you can claim through medicare, or do they bulk bill children?
Thought I should put some money away incase they charge an arm and a leg ( being specialists after all:D)

Thanks again

[OurLittleBlessing]

By coincidence, I used to work for an ophthalmologist (funny how things work out hey), and yeah, they usually ask for payment on the day. You can probably ring ahead though and ask for an estimate. Although it will depend a bit on what tests they run. Sometimes they will bulk bill children, yes.

Good luck. Please let us know how you get on.

[3kidz]

There are a few males in my DHs' family that have it. (BIL, their cousin, second cousin, an uncle, grandfather) Its hereditory - females carry it and every second male gets it. My BIL has it. He goes from good to bad - when its bad he just has to tilt his head slightly to the side to focus his eyes. He has his license and a few heavy vehicle licenses as well. Their cousin has it severe and his head shakes - he too controls it by tilting his head and focusing.

[OurLittleBlessing]

I believe there are over 40 different causes of nystagmus (I know - huge!), and some of them are genetic, like the one you are talking about 3kidz, albinism is another main cause, head trauma or stroke can also cause it.

In my DD's case they *think* it is idiopathic, which means 'without cause' and congenital, which means 'present at birth'. She is still to have some further tests to rule out a few obscure things.

I haven't seen any head shaking with DD but she is probably too young for that yet. I think she might be starting to develop a slight tilt though. Again, it's hard to tell for sure when she is so young.

[MermaidSister]

Thank you so so much for replies. The positive stories actually made me cry a little.

It breaks my heart that people are already treating her a bit differently, mainly because she can't make eye contact (although she does manage a tiny bit with me and DH). Also some people seem to find her drifting eyes quite off-putting. If it turns out this is not nystagmus, I dont' know what the heck it is.

I look at her older sister (20 months), who is SUCH a social butterfly, and has social skills way beyond her age, and I wonder what the future holds for her 3 month old sister. More than anything I want her to be happy and healthy. I would swap eyes with her today if I could.

I'm sure that a large part of her happiness/success in life is going to depend upon how DH & I handle this, so I'm trying to pull it together, but it's hard as the information I have read seems to indicate that she may be almost blind and live a difficult life.

Anyway, if you've read all my ramblings, thank you.

If anyone else has any other positive stories to share, please, I would love to read them.

I just want to say, the way you wrote about your daughter in that passage was just so beautiful. There truly is no love like that between mother and child. It made ME cry lol

When my daughter was 6 weeks old our doctor expressed great concern for the fact that she didn't seem to maintain any eye contact, or follow a gaze. I spent all of the next 2 weeks trying to "make" her see me and watch movements in the room. We took her back and she still didn't seem to want to watch the doctor...but on her next visit our Gp was pleased to tell us that her sight appeared to be normal and she was fixing and following just perfectly.

But those couple of weeks of mild concern was enought to make me sick with worry. Why she didn't focus at first, no idea. But i very much hope that if your daughter has this condition she will get the treatment she needs and be relatively unaffected by it in her life. It is obvious she will have all the support in the world. :hugs:

[OurLittleBlessing]

Aww thanks for the encouragement mystics, it means more than you know!

It's actually interesting reading back over this thread. DD2 was 6 months old on Tuesday, and the difference in her is staggering. Her eyes still wobble/dart, but it has slowed so much. She has caught up all of her milestones and is even slightly ahead with some things. She can reach out for toys that don't make any noise, and she can track objects that are in her near vision (a huge acheivement! and one which will make it much easier for her to read). One of the most encouraging things happened recently when I was leaning down trying to settle her in our navy blue portacot, in a semi-dark room, and I was wearing a black hoodie: well, she reached out and very intentionally grabbed the black drawstring. I don't know if even I would have even found that easy to see lol!

Also, today she was lying on the floor and I was standing near her talking to my SIL on the phone and she looked me in the face and smiled!

So yeah, I thought I would update this thread, so that I can look back and see her progress, and also so that anyone else who stumbles accross this in those early uncertain days, can hopefully find some hope too.

She is a HUGE blessing to our lives. And I really don't think I would even change her nystagmus if I could, because without it, she wouldn't be her :D.

[OurLittleBlessing]

Bump :D

Anyone else?

[littleleos]

just wondering how u r going
we are waiting for aidens operation date and see dr tan sooooooon... which reminds me I must patch aidens eye. I have been so slack

have a new bub and dr tan said I should keep an eye (lol) on his eyes as he has a 50% chance of having a strabismus.

chat to u latter

[OurLittleBlessing]

just wondering how u r going
we are waiting for aidens operation date and see dr tan sooooooon... which reminds me I must patch aidens eye. I have been so slack

have a new bub and dr tan said I should keep an eye (lol) on his eyes as he has a 50% chance of having a strabismus.

chat to u latter

Just saw your post! Have you got an operation date for Aiden yet? Hope it's all going well.

Congrats on your new bub too! How are his eyes looking (no pun intended I swear haha).

DD2 is going well. Cruising the furniture, cheeky, cheeky smile, quite a few recognisable words. So it would seem that her development isn't being held back by her vision impairment.

But, we found out this week that she has optical nerve hypoplasia and I'm back to wishing I hadn't googled it.... :thumbsdown:

[littleleos]

nice to hear from u

cute comment about bub no 2 eyes... so far they look ok!!!! he he he
just waiting on a call for aiden eye op. I am freaking out big time. I am an organ donar for everything but my eyes. I just cant stand anything touching them.

Aidens eye sight was getting better but with the new baby arriving I became to caught up and forgot to patch plus aiden just kept pulling them off... his eye sight got worse
but aiden has been squinting his eye now so that is showing that his brain has turned on his bad eye. not seeing dr tan for 5 month but hoping to see him at the kids hospy. its going to be a big day. we live down in the gong so we will prob stay up near randwick somewhere

hope you have a nice chrissy
from alina

[OurLittleBlessing]

Hi LittleLeos - have you heard any more about Aiden's eye operation? Hope they don't keep you in suspense too long.

Just to update this thread, my little treasure has been for an MRI under GA to check for septo optic dysplasia and pituitary deficiencies. I will find out the results tomorrow.... nerve racking....

She continues to do well overall. Very affectionate which I just love. She has quite a few words now, although most people probably don't recognise them, I can understand her very well. She always wants to do whatever her big sister is doing, so sweet. Very close to walking now.

Whatever the results may be, we will be just fine. Sometimes I think she teaches me more than I teach her.

[OurLittleBlessing]

The results are in.... no septo optic dysplasia or pituitary deficiences!!

I don't think I've ever been so relieved.

It is such a positive answer to prayer. Although I'm sure that if the results were different, God would have guided us and her through that too.

Thanks so much to everyone for your good wishes!!!

[merchantcash]

For the past week I have been back and forth to various hospitals and my son has been diagnosed with Nystagmus. They still have to carry out further tests to find out how severe it is. Does anyone out there know about this condition and can give me any advice from their own experience?