How to tell if baby has visual impairment?

[KLM99]

I'm calling the pediatrician tomorrow to make an appointment, but just wanted to see if there's any wisdom from the mamas here.

My 13wo isn't making eye contact with me. He gets excited when he hears my voice, coos and smiles, and loves to be held and touched. So everything else is going normally, but most sites I've found say eye contact should occur regularly by at the latest 12 weeks.

Now, I wouldn't be too too concerned about this except my father and his brothers have nystagmus and are severely visually impaired. I understand this is a genetic thing that is most commonly in males.

Other ways to tell if a newborn is visually impaired? Any mamas out there to visually impaired newborns have any advice? Thank you!

[alexsam]

My baby started wearing glasses at 6 months. An optometrist who specializes in children or a pediatric opthomologist can do very accurate eye exams on babies (I know... you wouldn't think it is possible, but it absolutely is! One of the first questions people have with my glasses baby is "How did they do an exam on a baby so little?" and I explain that they looked into his eyes and put various lenses and could see where he was focusing... he's farsighted). It is very hard for a parent to know the extent of vision issues in babies and even pediatricians don't really know how to identify vision issues in babies. And, for the record, the vision tests at the pediatrician's are not usually thorough or accurate enough to truly assess vision in older kids either.

I'd go to the pediatrician, talk to him/her about it, get a bit of a check up and then get a recommendation for an optometrist or an opthomologist and get an eye exam by someone who knows what they are doing and what they are looking for. Most of the time opthomologists will be covered by insurance or you could find an optomotrist who has training specifically for babies with the infantsee program (which gives free baby eye exams/check ups): http://www.infantsee.org/

[bandgeek]

With my DD it was pretty obvious early on. She wouldn't track objects or make eye contact at all. We knew she had some impairment before she left the NICU at 7 1/2 weeks. A team of ophthalmologists came in and assessed her and just told us we'd have to follow up in the clinic to find out more. We went again when she was about 4 months old and they said she had CVI but didn't know to what extent. Went again at about 8 months and found out it was pretty severe. She's 2 now and will make eye contact but it's pretty poor. She still doesn't track objects, but will fixate on an object. If it moves, she will look around until she finds it again. I don't even remember what is typical at that age, but I knew immediately that DD couldn't see well.

I guess I wouldn't worry yet about the poor eye contact, but I would see if he tracks. They should be gazing at toys and other interesting things by that age I think.

[solinox]

It sounds like you're seeing close to what I did when we first suspected a problem with Kender. He would squint in bright sunlight, so we knew he had light perception at least, but at 2 months he was not smiling in response to visual cues, only to touch cues like hugs and kisses. He also had some white reflections in his pupils, which helped get us in to the specialists faster because it can be a sign of cancer (wasn't, it was the reflection of his retinal folds that were pushed up against his lenses).

Definitely get him looked at by a pediatric ophthalmologist. Before you go in, get detailed information on your family's known visual diagnoses, so that the doctor has something to look for. Depending on the condition, the doctor may want to also examine your father and/or brothers for comparison, and he may want to draw blood for genetic testing. If you know your family's condition is relatively rare or complicated, you will be better off going to a university or other large center where the experts will have more experience with rare conditions; our small-town pediatric ophthalmologist completely missed my 3-year-old's blindness and retinal folds.

Good luck!

[askew]

My DS has Nystagmus, but with very little visual impairment. I can tell you that Nystagmus almost always shows itself between 2-3 months. (when not present at birth, which is a different kind than the hereditary one) My son was 10 weeks old when he started having slight bouncing of his eyes, which over the next months changed to constant back and forth movement. Now at 3 he sees fine, and his Nystagmus is pretty mild. I do remember that he loved lights, was born around Xmas and obsessed with the lights. We wondered a bit about ocular albinism, which can cause Nystagmus, but it was ruled out. OA will make them much more sensitive to light, especially sunlight. Take your LO to a Pediatric Ophthalmologist for a check.

[pimms]

I also would suggest seeing a pediatric opthamologist. My son was born with a heart defect and we were immediately directed to a PO upon his release from the NICU, they suspected vision problems b/c they are often related to heart problems. Anyway, they did diagnose a complicated congenital defect (at 3 weeks old) and they fully expected him to develop nystagmis. They had us watch him closely until he was 6 months old, although we were also told you can usually tell by 3 months. He never did develop the nystagmis, but started wearing glasses at age 3. In addition to his congenital eye defect, he also lucked out with strabismus, which he inherited from me. So yes, bring along your family history too. There is so much they can do today, especially when eye issues are caught very early. Good luck!

[2boyzmama]

You've gotten good answers already. Get a referral to a pediatric ophthalmologist. I wouldn't recommend an optometrist, especially with a family history.

I had a severe lazy eye as an infant, it was very obvious, and treatment began at only 6 months old with patching. I got glasses at 18 months old. I started vision therapy around age 2. Thanks to aggressive treatment, I didn't require surgery and I have very good eyesight (considering) now. I have some permanent effects of the muscle imbalance, but have learned to compensate really well, and no one but an ophthalmologist would know.

[Satori]

It sounds like you already have your answer but just to add, if there not tracking and its obvious there following voices rather then seeing the source of the voice then you need to see a PO. My youngest got her 1st exam at 5 weeks and they identified problems right then. We started vision therapy around 6-7 months I think and finally started patching around 9 months I think it was (severe amblyopia among other things). She's 3 now, has had 2 surgeries and were getting ready a 3rd, she's got 4 Dr's for her eyes and are doing the eye drops now since she refuses the patching and has for a good long while. Anyway it can be difficult to recognize vision issues unless the child is out right blind (and in 3 separate cases the parents were clueless even though 1 child was 7 months old when they identified it!) but if your seeing signs I would get them to a PO ASAP.

[mmgrimm]

I understand your concerns completely...at about 3 months old I noticed that DS1 was not making eye contact...took him to his Peds and was reassured everything was fine...fast forward a month and the nystagmus started. My DS1 was diagnosised with OA, congenital nystagmus, and severe visual impairment. Then along came DS2 a year later...he has the same diagnosis. I would be concerned since you have a family history of eye disorders and impairments and I would take your son to see a Pediatric Opthamologist or two...we saw 3 and had genetic testing done before we were able to accept the diagnosis.


Feel Free to PM me!

Marie

[KLM99]

Ok, we have a diagnosis - ocular albinism. Thanks for all the responses. I wonder if there's a tribe for parents of kids with OA.... If not, I'll start one - sounds like there are at least a few of us!

[Lollybrat]

My 5 year old son was diagnosed a few months ago with oculocutaneous albinism. It's been suspected since he was 2, but until recently he did not cooperate with the eye exam enough for the ophthamologist to make a definitive diagnosis. (DS also has Autism Spectrum Disorder, which affects his ability to cooperate with exams.) He does have some pigment, so we think he may have OCA type 2, but we would need to have genetic testing done to be sure.

My son seems to be pretty lucky as far as the vision impairments go. He is extremely farsighted and has an extreme astigmatism. He is also very photophobic and has some mild intermittent strabismus. But his vision can be corrected to about 20/60, which is really good for albinism.

We're still learning about albinism. I recently found this site for the National Organization for Albinism and Hypopigmentation (NOAH) and it seems to have a lot of good info: http://www.albinism.org/

[solinox]

Isn't it a relief to finally get a diagnosis and know where you're going? All of the blind folks with albinism I have known have been very high partials, which DH says makes them the "cool kids" among blind kids...lol...good luck from here out!