SN FAQ: Vision Issues

Assembly_Reqd

Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.

I am worried or being told that my child has some vision issues.

What originally lead you to believe your child had vision issues?

Who originally diagnosed your child's vision problem? What was the diagnosis?

What type of medical interventions for vision did/will your child have? (patching, eye drops, glasses, surgery, etc)

Are there any other interventions you are doing? (Vision therapy, vision programs, second opinions, additional specialists)

Do you have any other advice for parents dealing with their child's vision issues?

Assembly_Reqd

What originally lead you to believe your child had vision issues?

He was noted at birth to have nystagmus(eyes jiggle back in forth). He also had a lot of dismorphic features in his face so they knew something genetic was going on which could also impact vision.

Who originally diagnosed your child's vision problem? What was the diagnosis?

He was examined in the NICU by a pediatric ophthalmologist. The diagnosis was that Nate had asymmetric nystagmus, macular hypoplasia, meaning the macula was not fully pigmented(developed) yet and optic nerve cupping. At our follow-up visit at 2 months old we also learned he had strabismus(exotropia), astigmatism, mild ptosis on left side(droopy eyelid) and tear duct obstructions. The scariest diagnosis at that time was the macular hyploasia because the macula is responsible for detailed vision. We were given a worse case scenario of Nate being impaired enough visually to be considered legally blind. Of course, we were told to wait and see.....

What type of medical interventions for vision did/will your child have? (patching, eye drops, glasses, surgery, etc)

We started patching at 4 months old for 2-3 hours per day and continued that until about 11 months old. The nystagmus and his head tilt (torticollis) were thought to be symptommatic of spasmus nutans so he had an MRI to rule out any brain tumors pressing on the optic nerve. The MRI showed no tumors but a second radiologist's opinion noted that Nate had "evidence of a dimished cerebellar vermis" which is portion of the brain that contains the visual motor cortex. The macula finally was fully developed at about 11 months. At 2.5 years old he had tear-duct obstruction surgery since he fell in the 10% of children with obstructions that do not open. During the surgery his optic pressure was tested to be higher than normal and we are following up with a glaucoma doctor.

Are there any other interventions you are doing? (Vision therapy, vision programs, second opinions, additional specialists)

We started vision therapy with our local school for the blind at 5 months old. Our neurologist told us to tell EI to get us a vision therapist. I had no idea that Vision therapy was even a possibiility! Nate's nystagmus alone qualified us for services. We also saw a Neuro-Ophthalmologist at age 2 for some concerning eye rolling that started right before his birthday. We weren't sure if they were seizures or not. It turns out that Nate's blink is pretty much non-existant and the eye rolling is his eye's way of re-moistening the eye. Being tired makes the eye rolls much more prominant. He also got a diagnosis of saccadic intrusions form this doctor. (eyes will dart left, right or up sometimes) We will return to the N.O. for follow-up in one year.

Do you have any other advice for parents dealing with their child's vision issues?

As you can tell by my post, Nate has a lot of complicated visual stuff going on which is all pretty much explained by his genetic deletions and how the brain was formed. My only advice is to be sure to see an pediatric ophthalmologist if you think your child has other stuff going on beyond some far or near-sightedness. If your child has a lazy eye (strabismus), you will need to see them anyway since they would be the ones to do any surgical interventions. We were always getting crappy news visually, but Nate has surprised us all and so far those worse case scenarios never panned out. He picks up little tiny crumbs all of the time, so I know his acuity is pretty good. Our Dr. keeps putting off the acuity test. I think it is because Nate's vision is still a bit of a moving target and he is waiting for things to stablize more.

MaxandRuby

Assembly_Reqd:

I am worried or being told that my child has some vision issues.

What originally lead you to believe your child had vision issues? I noticed that my child was crossing his eyes. Both of his eyes would cross intermittenly but not at the same time though. So sometimes his left eye was turned inward and sometimes the right eye turned inward.

Who originally diagnosed your child's vision problem?  A pediatric ophthalmologist

What was the diagnosis?  Strabismus, esotropia, moderately to severely farsighted and astygmatism in each eye

What type of medical interventions for vision did/will your child have? (patching, eye drops, glasses, surgery, etc)  His eyes issues were diagnosed at just shy of 10mos of age. He has worn glasses for 2yr now (he is currently 2.75yr old). He just had strabismus surgery 2.5wk ago. They operated on 2 muscles in each eye. He will continue to wear glasses.

Are there any other interventions you are doing? (Vision therapy, vision programs, second opinions, additional specialists)  The only intervention is glasses.

Do you have any other advice for parents dealing with their child's vision issues?  If you think there may be an issue, get it checked out.

 

LydiaE2

 What originally lead you to believe your child had vision issues?

The signs are subtle.  DS was getting scared in dark places, would stand close to the TV, would stare at wheels and brought objects very close to his face.  DS also had a whole bunch of behavioral issues.  The OT suggested that we get DS's eye's examined at DS's OT eval. 

Who originally diagnosed your child's vision problem? What was the diagnosis?

A pediatric Opthamologist.  DS has slight astigmatism and is farsighted.

What type of medical interventions for vision did/will your child have? (patching, eye drops, glasses, surgery, etc)

DS wears glasses.   

Are there any other interventions you are doing? (Vision therapy, vision programs, second opinions, additional specialists)

No other interventions. 

Do you have any other advice for parents dealing with their child's vision issues?

See a pediatric Opthamologist.  I took DS to an Opthamologist that was much more geared to adults and the exam was not as good and the office was not set up well for small children (it had antique film equipment out on display that was not to be touched).  

realisticdreams

Assembly_Reqd:

Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.

I am worried or being told that my child has some vision issues.

What originally lead you to believe your child had vision issues?

P: Soon after her CP diagnosis we saw a pediatric ophthalmologist.  It was prompted mostly because of her dx but also she had trouble with tracking to the right.

M: Her eyes were very cloudy looking and from our first pedi visit they mentioned them.  When she was about 2 months old she was still not tracking and her eyes crossing hadn't cleared up yet.   

Who originally diagnosed your child's vision problem? What was the diagnosis?

We were sent to a pediatric opthalmologist, for both girls.  P's diagnosis is just normal vision problems which will need glasses.  M had delayed visual maturation and something else which is escaping me! 

What type of medical interventions for vision did/will your child have? (patching, eye drops, glasses, surgery, etc)

The 'something else' is what prompted us to do patching and we have to go back to the eye dr. soon.  P will just need glasses for her problem.   

Are there any other interventions you are doing? (Vision therapy, vision programs, second opinions, additional specialists)

Since P was first seen in WV and we moved she technically had a second opinion.  We also started using a VCU dr who comes local to us, so technically P has seen 3 eye dr's and M too.   

Do you have any other advice for parents dealing with their child's vision issues?

I think alot of times the importance of a pediatric ophthalmologist is entirely overlooked.  It's MUCH more important in children who have other medical diagnosis.   I personally am near sited in one eye and far sited in the other.  One is a "lazy eye," which if I would have known when I was younger could have been fixed.  Now i'm basically blind in that eye and can only see the giant E.  Healthy eyes can't only be determined from a once a year physical.  It's important for all children to see an eye dr.  Just take it one step at a time, vision is one of those things that is progressive in both good and bad ways.

kujayhawkgirl

What originally lead you to believe your child had vision issues? At 5 days old, our pediatrician noticed that she did not have a red reflex in either eye, indicating cataracts. Her right eye also crossed to the inside (strabismus) and her eyes moved backed and forth frequently (nystagmus).

Who originally diagnosed your child's vision problem? What was the diagnosis? Pediatric opathamologist at 5 days old. Our dx was bilateral cogenital cataracts, strabismus, and nystagmus. Our DD also has a retinal fold on her right eye, near the macula; however our retinal specialists is encouraged to see that this fold has somewhat dissolved on its own and has not affected her detailed vision at this time. We also were referred to a geneticist, who diagnosed DD with Hallerman-Streiff Syndrome.

What type of medical interventions for vision did/will your child have? (patching, eye drops, glasses, surgery, etc)  DD had her cataracts and lenses removed at 4 weeks and 6 weeks old and was fitted for glasses. Because she does not have any natural eye lenses, she is said to be aphakic. She has worn glasses since 2 months old and her prescription has been changed a handful of times, as age appropriate, to see further and further distances. Starting at about 9 months old, we began patching for 3 hours a day, and then starting at 12 months, we began patching for 6 hours a day.

Are there any other interventions you are doing? (Vision therapy, vision programs, second opinions, additional specialists) We have a teacher for the visually impaired (TVI). She originally started coming 1 hour a week, starting when DD was 2 months old. We have gradually decreased our TVI's time, by our choice, and she now comes twice a month for 1 hour each time. DD will likely go to a local center for visually impaired children for preschool.

Do you have any other advice for parents dealing with their child's vision issues? Have a great relationship with your pediatric opathamologist and ask all the questions you can think of. Try to get in contact with other parents that have experienced the same condition(s) as you. If you notice ANY difference in vision, contact your doctor immediately -- better to be safe than sorry. Treat your child with a visual impairment no different than a child who does not have a visual impairment.