little four eyes

Penguin has a daughter with extreme, and possibly  posted some questions about her daughter who has extreme and progressive myopia.  She’s hoping to connect with other parents who are facing a similar issue with their child and has a lot of questions.  Here’s her post.  - Ann Z

 I hope that other parents dealing with extreme myopia might be able to offer some pearls of wisdom!

I’m the mother of two little ones with glasses. My son who is five was diagnosed as nearsighted (myopic) at the age of two and started wearing glasses. We weren’t very surprised as both my husband and I wear glasses and have done from an early age and after the first tricky couple of weeks he wore them happily. In the last three years or so his prescription has jumped every year and is currently at -5.75 in his left eye and -5.00 in his right. I am not too worried about him as he has very good corrected sight, although I do worry that his prescription will continue to worsen.

When my daughter (who has just turned three) was six months old, we realised that she was not tracking and her pediatrician referred us to a PO. And then we got the shock of our lives – she was severely myopic, even more than my husband and I. Our PO told us that it was probable that she had congenital myopia and she started wearing glasses right away, although she wouldn’t really keep them on until she was a little older. The doctor wated to see her every three months initially and unfortunately her prescription has increased almost every time. Her prescription is currently at -18.5 -1 x 120 in her left eye and -19.75 -0.75 x 120 in her right eye.

We are very worried about her as we have been told that she is at a high risk of retinal detatchment and that she should avoid any activity that could mean she would bang her head – not easy when she is that age! Do you have any advice? S

I’m also so afraid of her future – we have been told that it is possible that she has progressive myopia. Even if her sight does become stable now, it is likely to become worse as she enters puberty. Her PO has recommended bifocals to help to slow progression – does anyone have any experience of this? Do you have any other tips to slow progression?

I have so many questions – I would be so grateful if anyone could help:

• How do you keep your children from banging their heads, not doing sport etc? I’m so paranoid about her having a retinal detachment.

• What do you do about swimming? Her brother has prescription goggles but I obviously can’t get her any in her prescription so she refuses to go anywhere but the shallow end where she can keep her glasses on. I understand that her sight is truly terrible without them and that she is to all intents and purposes blind without them (as am I without mine!) but I would love her to be able to learn to swim.

• Do you know about lenticular lenses? Her PO has said that if her prescription increases much more, she will need to wear myodiscs or lenticular lenses? What are they and will they make her look very different? I’m so used to seeing her minimized eyes that it doesn’t bother me at all, but I’m very aware that she will be going to school soon.

• What different approaches can we put in place when she starts school to ensure that she learns well? I somewhat doubt that she will be able to see the board unless she sits right at the front and I think that she will need some of the worksheets and books enlarged so she can read them properly? This is also where I think that bifocals could be helpful? Does anyone have any experience of them?

• Are there any other adaptations around the house that I could make that would make living with low vision easier for M?

• Also, are bifocals useful at much lower prescriptions too? My son B (whose prescription is only -5.75 and -5.00 is 5 years old and reads all the time – he’s never without a book! I’m aware that this could affect his sight (which has worsened every year since he started wearing glasses at the age of 2 (only -2.75 and -2.50 at that time). He is very bright and a year ahead at school so I don’t wish to stop his reading, just don’t want to make his eyes worse either!

• And finally (I promise!) – does anybody have any experience of degenerative or progressive myopia? I am so scared that this might be what my daughter has – she is only just three and yet her vision is so poor even when corrected and has continued to worsen since she first got glasses.

Any advice would be so welcome,

- From a very worried Mama

This question came in from Ingrid, whose daughter Paris is 3, and wears glasses for nearsightedness in one eye, her other eye needs no correction (anisometropia). – Ann Z

I am wanting to ask parents of children with anisometropia whether they find their child particularly clumsy?  It is something that really plays on my mind as it is hard to know whether a certain amount of clumsiness is just part of being a three year old child who does everything at full speed or something more sinister.

Take today for example, I picked Paris up from kindy to hear that she had a bad nose bleed today as she ran full speed into a metal bar in the playground. I could see the remnants of blood in her nose and she had a nasty bruise on the bridge of her nose. Then she collided with another child later in the day.  Immediately I think it is her vision, however my husband always assures me that she is just a busy three year old and our other children did the same. It’s so hard not to worry though. I hate the thought of her misjudging distances due to her anisometropia. She is -4 in her right eye with -2 astigmatism and plano in the left so the difference is significant.  It breaks my heart sometimes.

Many thanks to Melissa for sharing her story about growing up legally blind.  I hope you enjoy it, and find it as helpful as I did.  You can read more of Melissa’s writing at her blog, Wisdom from the Other Side.  - Ann Z

I went through it all as a kid.  I had my first surgery at 18 months to correct my crossed eyes, my second at 5 years to try and correct a nystagmus.  At different points in my childhood I wore glasses, contacts and a patch.  Growing up legally blind never stopped me from pursuing my dreams.  For those moms out there raising legally blind or visually impaired kids, I want you to know that even though your child may have to work a little harder in other areas then sighted kids they are capable of doing anything, and being anything!

I was born legally blind with crossed eyes, cataracts, nystagmus and severely underdeveloped optic nerves.  My vision is only slightly correctable.  I’m nearsighted as all get out.  During eye exams the only thing I can see is the big E which makes my vision un-measurable.  My vision can be corrected up to 20/800 in my good eye, but with glasses I have to give up seeing anything up close for a small amount of distance vision.  A trade off that just isn’t quite worth it when I spend all day in front of a computer.

the author, at age 20 months.

Having been where a lot of your kids are now I want you to know that growing up, I never knew that I had a disability. I never felt different from other kids and I’ve always known that I could do anything I set my mind too.  I knew I had to do things differently than other kids, but what set me apart also made me special.  I can only imagine what it must be like to be a parent raising a legally blind or visually impaired child – but from the point of view of the kid it’s all perfectly normal.  I’ve never been able to read subtitles, or see the chalkboard from the front row.  I’ve always had a pair of glasses or a monocular with me.  My life isn’t any more or less difficult because of my vision, it’s just different.

I spent the entirety of my K-12 education in a regular classroom.  I did the same assignments and was given the same expectations as the other kids, with some modifications as needed; I was also given special Orientation and Mobility (O&M) instruction.  My O&M instructor taught me how to go grocery shopping, read traffic patterns and ride the bus – all the skills I would need to move out and go to college.

I truly believe that part of the reason I’m a successful adult is because of my vision. Not being able to see something was never an excuse for not doing it.  I might have to do things differently than other people, but it still gets done.  I know that I can do anything, and I have.  I earned a Masters degree, I work full time in a position of responsibility and best of all I’m the mother of a wonderful baby boy.  I’ve completely mastered my disability, and I’ve been able to turn it into an asset.

There are a lot of resources available to legally blind children, including tuition assistance for college.  Most states have a Department of Services for the Blind that offers vocational training.  If a legally blind child wants to pursue a vocation that requires a bachelor’s degree, the Department of Services for the Blind will cover part, or all of the tuition.  State departments for the blind also offer orientation and mobility instruction, equipment and a network of individuals in similar circumstances.  They are a wonderful resource!

To any mom who has questions about what did and didn’t work for me growing up, please feel free to e-mail me at Melissa@wisdomfromtheotherside.com.

 My son Nicholas has ectopia lentis, a congenital condition that causes his natural lenses to move, or dislocate, from their normal position.  As a result we’ve had to manage high myopia, anisometropia, amblyopia, and the associated patching, glasses, replacement glasses, and even more replacement glasses since he was 6 months old.  A few months ago I posted about his surgery to remove the natural lens of his left eye and replace it with an intraocular lens.  Back with an update. 

Pleased to report that the healing / recovery throughout the intervening months has been uneventful.  The new lens is well centered, clear, and most importantly..providing good vision.

Prior to this surgery, N’s prescription has progressed to  -8.5 R and -23L and we worked diligently with his PO to ensure the patching routine was followed and we adhered to all follow up and recommendations.  This past week we were very pleased to experience the results of all the effort. 

After 4 years of prescription changes, extended patching, a surgery, some stiches here and there…and all the other challenges associated the PO shared with us the following…20/30 (with correction) bilaterally.  A first for us…ever.  Not only that, but patching time is reduced!   We go forward knowing the effort invested helped to maintain vision to the best possible given the circumstances, the right eye remains stable, and with a little luck and continued persistence his vision will remain the best it can possibly be.

This plea was posted by Dawn in our facebook group.  She asked if I could post here, too to see if anyone has dealt with something similar.  -Ann Z

My daughter is 13 months old, and I took her to the eye doctor today. She has optic nerve hypoplasia and nystagmus, but to top it all off, she’s also nearsighted.  The doctor prescribed -7.00 lenses/glasses for her. I know it’s not common for such a young child to be nearsighted. I’m completely thrown off! Anyone have experience?

The chunky funky frames are a slightly higher prescription that we are trying to see if filling her whole script will help reduce the squinting.  Her left eye is looking straighter without having the muscles moved and her right eye is still healing!  The new muscle position is also helping with her academics.  The progress she has made with reading and writing in the last 3 weeks is amazing!!!!

This comment came in from Karen.  I wanted to put it up as a regular post so that everyone can see it because it’s such a helpful and interesting story.  Karen got glasses at 19 months, and writes about growing up with high myopia and glasses.  – Ann Z

I am writing just to reassure some of you. I was diagnosed as a high myope at 19 months. My mother reported that she had questions about my vision at about 9 months old because I would run my nose along her blouse to see the flowers. She said she thought it was strange that I would cry when any furniture was moved. I would run my nose on the back of the “little golden books” to “find the doggie.” She actually used this as an example to show the pediatrician when he kept telling her all babies hold things close. When he saw this he changed his mind and sent us to a pediatric opthamologist.

I have had a stable -10 in both eyes since I was a baby. I was prescribed a little blue pair of glasses. I did not take them off when I was first fitted.   My mother said I wore them all day from the beginning. The only concerns I, personally, had as a child were a fear of having a fire or tornado where I would lose my glasses (I felt helpless without them), wishing terribly that I could wear the cool sunglasses made for kids, and how to combat the incessant teasing at school because of the strong prescription.

I went into gas permeable contacts at age 11 and loved them from the beginning. I can see so much better than with glasses. When I first got contact lenses I thought our fish in our fish tank had grown because contact lenses do not make things look smaller like high prescription lenses do. I lost contact lenses a lot. I lost them playing outside, riding bikes, swimming, and skateboarding, but my parents, thankfully, kept replacing them. (A vision budget is a must). Contacts have been the best! If I could have had them earlier I would have, in a second. I have even had a couple of eye injuries from my contact lenses when I was hit with a tennis ball and when I got kicked while jumping on the bed. The accidents caused the contact to cut my eyeball, which did not cause anything more than a small cut. It healed fine, and I still wouldn’t trade wearing contacts for glasses. I have glasses, but only for when my eyes are resting from contacts.  I have looked into Lasik which doesn’t look like an option right now. I have read that vision through gas permeable lenses is better than Lasik.

Keep in mind that even with a high myopia diagnosis kids can have a great time and will manage with the sight they have. And remember to buy them a pair of cool sunglasses!!

It’s been some time since I last posted an update regarding my son Nicholas and his experiences with glasses and patching.  N has ectopia lentis, a congenital condition that causes a laxity in the fibers that hold his lenses in place, as a result the lenses can move, or dislocate, from their proper position.  This has led to a high degree of myopia as well as anisometropia.  Anyhoo..after several years of success with patching to maintain vision to the best possible, we learned a several weeks back that the lens of his left eye has moved to a position where it is no longer providing useful vision.  (He’s -8.5 R and -23L.  Lately we’ve not been able to gain acuity beyond 20/200 L)

So..we’re gonna have it replaced.   Huh? 

I always thought such things carried a lifetime warrantee.  Such is not the case it seems.  Surgery is tomorrow. The surgeon will work to secure the supporting apparatus of the inner eye and hopefully implant an IOL “in the bag”, complex terminology for “right where it needs to be”.  Otherwise, suspend the new lens in the place where the bag used to be, if things go differently.  A new frontier for us to say the least.

I’ve written infrequently, but visit this site often, sharing and leveraging the collective experience of this community.  Hoping those who may have had experience with surgery could share some tidbits of advice.  What’s the post surgical period like? Luck with maintaing the protective cover in place? etc.  Will see you on the flip side and let you know how it went. (personally..hoping he gets the one with the bionic sound effect…) 

Melody recently posted this question to the Little Four Eyes facebook group, and I wanted to post it here, too to see if anyone has run into this or has any thoughts or advice for Melody. –Ann Z

Has anybody ever had an issue with their child being terrified to walk after getting glasses? My 2 year old was born premature and had surgery for ROP stage 3 with plus disease. The eye Dr. said the eyes still looked good from the surgery but that my son is severely nearsighted.

The thing is, Nick got around just fine …and rarely fell or bumped into things, but now that he’s wearing his glasses is terrified to walk on the floor….Wood, cement, carpet…it doesn’t matter the texture, he puts his hands down and crouch/creeps around, then gives up and sits and scoots…..Any similar experiences? Thank you!

Yeah for patching!

I am very excited to share with you that we have now had 3 visits where Elliana is measuring at 20/40 and 20/50 (with glasses of course) Our 12 hour, full time, patching has paid off. The PO said that she never imagined her vision getting to this level of vision and said that with her Exotropia and severe Ambliopia only 1 in 10 kids will get to this point where both eyes are relatively equal. She is also now turning both eyes outward, as opposed to only her left eye. While this may seam a digression, it actually means that her brain is using both eyes and that she is using both equally!

Now for my reward …. Surgery. I know, one would think all this hard work would actually just give us a great prognosis and allow me to go home a celebrate. NO WAY – because her vision has improved to a point in which she is using both eyes equally, the PO thinks it is the best time for Bilateral Lateral Rectus Surgery. Originally, she was thinking maybe around the kindergarten age, but after discussion Elliana’s lack of any depth perception (usually by age 2, some chance of gaining it before age 5) and her vision improvement, now is the time.

So, I am back to research mode. Thankfully, we now have a very good relationship with the doctor and I have utmost confidence in her and her staff. My baby’s eyes are truly in good hands. It is also re-assuring to know that she performs on average 8-10 of these surgeries weekly and has few patients return for “touch up surgeries.” I am hoping those of you who have been through this surgery with active toddlers / preschoolers can help me prepare both my family and Elliana on what to expect during, after and in the recovery stages.