Reader request: questions about extreme and possibly progressive myopia

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

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66 responses to “Reader request: questions about extreme and possibly progressive myopia

  1. My daughter is extremely nearsighted as well and I wonder if hers is degenerative as well. She seems to be doing fine though. Her dad is blind as a result of retinal detachment. I worry so much and I have been looking for support. She had a retinal exam under anesthesia in February and he said everything looked fine but that sometimes detachment doesn’t happen until 3 or 4. I couldn’t answer your questions,but I have a lot of the same ones.

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  2. Hi Ingrid

    I can’t tell you how pleased I am to hear that I’m not the only one!

    Both my two are at the PO on Monday for cycloplegic refraction. My daughter M has been pencilled in for an evaluation under anaesthesia for the second week in June as she is showing lattice degeneration (sp?). They have said that they may need to laser any holes in her retina? Also, the letter that we received from her PO (we get sent a copy of the letter that goes to her pediatrician) said that she had a staphyloma.

    Her corrected vision is quite poor – 6/30 which is about 20/100 I think? She is such a happy little thing and doesn’t really let it stand in her way but I hate that she can’t see properly and I’m so worried about progression. It’s only been three months and two weeks since her last appointment and I know that her prescription has increased – it’s funny how you learn to see the signs. I have a horrible feeling that we’ll be breaking the -20 barrier with both eyes this time.

    Does your husband have high myopia and is that what led to his retinal detatchment? I am so worried by her rate of progression – it seems that at every appointment the increase is larger. Is that normal? I know that a retinal detachment is very likely but would obviously like to hold it from happening for as long as possible.

    How old is your daughter?

    Penguin

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    • Hi Penguin,

      My son was diagnosed last year at the age of 2 with extreme high myopia. I would be interested in communicating with you regarding our kids’ condition. Please email me. His numbers are 16+.

      Spscud

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      • spscud – i’d love to connect with you- my 2 year old is in -14 and -15 glasses (since 20 months) and sees a pediatric ophthalmologist every 6 months, retinal specialist 1x/year. Today I am taking him to a genetic counselor to test for Sticklers Syndrome.. he’s a very healthy and active little boy otherwise… I don’t know if or how progressive it could be since we’re at the beginning stages but just having someone going through something similar would be a great connection/relief for me… if you’re interested.
        Kasey

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        • Hi Kasey could you please share me more about the progressive your son? My daughter is 25 months old now and I had sent her to Optometrist recently as we notice she is holding objects very close to her eye and also just stand in front of TV while watching TV.

          We been sent her to three different Optometrist and they said she has myopia and results are as follows:

          Feb 2016 -8.00
          Apr 2016 -5.00
          May 2016 -16.00

          All result come out from different Optometrist. And I am feel worrying because the huge different for 3 Optometrist and I notice that my daughter can see that Airplane in the sky even is far away and without any sound. I scare my wrong decision will affect the growth for her eye.

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        • Hey there,
          That is a very wide inconsistent range.. i would highly recommend a pediatric opthalmologist if you have access to one. I would hold off on getting glasses until you have a more consistent finding.. i would hate for you to over prescribe.. fortunately in the last 2 years jax has had no progression.. he has been stable at -15 although they did tell us that when they start off so severe in a lot of cases they do not progress – they just stay as is. i can say that my son is a very active almost 4 year old who is not in the least bit restricted by his vision so if that offers any comfort i’m not sure but i know we fear for our kids. all the damn time because we question if we’re doing everything we can.. just know that you are. you’re just unfortunately getting some really conflicting information that must me driving you insane because you just want to help your baby.. good luck and please feel free to reach out anytime.
          – kasey

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        • Hi Kasey
          Thanks for the reply and nice to hear that your son’s eye is stable now… yeah the wide inconsistency make me so frustrated as I really had hard time to make decision, I have to go back to the PO in next month… been requested to put the atropine 3 days before second visit to the PO to obtain a more accurate prescription. My girl is very active type kid and everything seem normal, I hope that her future activity is not restricted by her vision problem too…
          Regards
          Ivy

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  3. I don’t have experience with extreme myopia, but I can address a few of your questions! First, just want to send support – it is heartbreaking watching our kids go through vision issues, no matter what the issues are. Hang in there.

    My daughter does not have a lentricular lens, but my understanding is that there is a “bubble” in the middle and they would look different. On that issue – have you thought about contacts? My daughter is 21.5 because she has had a lensectomy and she wears a contact. After some practice they are not that hard to insert and they give great vision because they are close to the eye. You might ask your PO about it. And if she wore contacts – you could just get some good goggles and solve the swimming problem.

    As for school, she is already old enough to request and evaluation from you local school district. Early childhood services start at age 3. They will need you to have all her medical records sent and they can do some additional testing. In our school district, corrected vision has to be below 20/80 (I think) to qualify as vision impaired. If she qualifies, she would have an IEP that would list all the accommodations she needs and any services she would need. We have vision impaired students will full time aids to help in the hallways and some that don’t need anything more than enlarged worksheets and textbooks. If she doesn’t qualify for an IEP, she would at least qualify for a 504 plan. This is a written document that lists the accommodations she needs to be successful because of her medical disability. It could include enlarged worksheets, sitting close to the board and being excused from activities in gym. Just contact your local school district – she may even qualify now for some preschool!

    Good luck with everything.
    Laura

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  4. I was going to suggest contacting early intervention or the school district as well. I have parent friends whose children received speech intervention and autism support at ages 1 and 2. And I think here in MA the school systems are the place to go for an evaluation and support after age 3. Good luck with everything!

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  5. My daughter has progressive high myopia, though hers is not as far along as your daughter’s (prescription currently is -9.75 but we’ve been told to expect it to go into the teens as she grows). I want to second what was said above – talk to Early Intervention! They can be a wonderful resource. Also, contact the visual impairment department with your state’s Health and Human Services. In TX it’s called Division for Blind and Visually Impaired but I know different states have different names. Ours is a great resource for information, referrals, funding for special equipment, etc. Definitely worth contacting them to see if they can help you. They will also be able to connect you to other families who are going through similar vision issues. I hope this helps and good luck to you.

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  6. Wow – thank you so, so much for your replies. I’ve felt so alone with all of this.

    We don’t live in the USA but in Europe, but we’re waiting to see the low vision team. M’s corrected vision when last tested (three and a half months ago) was 20/100 or 6/30 so she is classed as visually impaired and her PO referred her at her last appointment. We’re going back to see the PO on Monday so will ask him to chase it up.

    She’ll be starting at her brother’s primary school in September and I was waiting until I found out who her teacher was before looking into adaptive equipment for her, but I’ll look into it as soon as possible.

    Contacts haven’t been possible so far – she has very dry eyes and although we’ve tried twice, both times she screamed and cried and was in a lot of pain. My husband and I are both quite short sighted (prescriptions in the teens) and wear RGP lenses (although we wear them less since our children started wearing glasses!) so we thought that would be the natural answer. Her PO says that contact lenses may be an option later on.

    ParadiseFour – how old is your daughter? Have you found that the increases get larger and larger every time? At our last two appointments, we’ve seen jumps of -1.5D and -1D in a three month period, which is really worrying.

    I will keep you all updated on our appointment next Monday – I have a sinking feeling that both children will be leaving with stronger prescriptions.

    I’m so worried for the future – if her eyesight keeps deteriorating at this rate then I don’t know what will happen.

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  7. Suggestions:

    All kids have some strengths and limitations. If sports are not meant to be…and if you are that myopic I would indeed not want my child to participate in sports…then OK…how about learning the flute? chess? singing opera!

    Glasses are not the only way to correct that amount of myopia. Get these children into contact lenses asap! I would also have them wear glasses for protection (poly carb or Trivex lenses) over the contact lenses.

    Research has shown that all kids learn better sitting up front and in the center of the class room. The child cannot ignore the teacher….the teacher cannot ignore the child. Request that this be done….it’s a good thing!

    There are at least 3 kinds of myopia…that caused by the environment, by your genetics and a combination of both…..for myopia caused by the environment and a combination of both oftentimes wearing glasses that have a bifocal in them works well to slow down the advancement of myopia. In some folks they’ve removed the lens inside the eye to reduce the myopia or have had LASIK….I am not recommending either at this time however…

    Kids will be kids. They will get bumped, fall down….do kid stuff….

    When this happens just make sure you take her to your doc so those eyes can be dilated and your doc can see if the retina is OK. Watch her. Teach her. This is actually true for both of your children.

    They will do fine. You will be a nervous wreck….that’s OK…as a parent…I think that goes with the job! (;-}>

    Now take a deep breath. Relax. Let ’em be kids.

    Dominick M. Maino, OD, MEd, FAAO, FCOVD-A
    Professor, Pediatrics/Binocular Vision
    Illinois Eye Institute/Illinois College of Optometry
    Lyons Family Eye Care
    MainosMemos.com

    Please email me if you have questions (Dmaino@ico.edu). Check out my blog for the latest info on children’s vision.

    Liked by 1 person

  8. My right eye is at somewhere around -25 to -30 currently and has always been very bad. Vision therapy when I was younger definitely helped.

    I see a LOT better with a contact in that eye so as soon as she’s able to wear them, I definitely highly recommend that based on personal experience.

    As far as retina detachment, I had one at 29 after having a baby. My retina surgeon doesn’t think the two are related and said I can have more (babies) though so it might have been a coincidence. Just in case you should teach her the signs of a retina detachment. The early ones are hard to notice, but the “curtain” or “dark area” covering a chunk of your field of vision is pretty obvious.

    I did play sports etc (badly :)), but my left eye is comparatively better so maybe that’s why it was considered ok.

    My daughter (10 mo) was diagnosed at -5 in both eyes and -1 and -.5 astigmatism at 6.5 mo. We’re all terrified that she’ll just keep going down and down but I’m really hoping for good news at the 1 year check-up.

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    • Do you drive at all hours or are you restricted to daylight driving only? I’m concerned about not passing my vision test at the DMV even with glasses. I don’t have an exact prescription on me but I know I am between -3.00 and -4.00 in both eyes.

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      • Hi Thomas , I ‘m a -5.50 and have no trouble with night driving. But prescription doesn’t always correlate with how well you see. I would try to get an appointment with an eye doctor who will test your vision both with and without glasses and hopefully get you what you need to see well enough for driving.

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  9. Penguin – my daughter is about to turn 5. We don’t know about her vision early in life because she is adopted from India and her vision issues weren’t identified in the orphanage. She got her first pair of glasses a little more than two years ago and they were -8.00. A year later the prescription had moved up to a -9.75. We are due back at the doctor again soon and I have a feeling her prescription has gotten worse but I don’t know how much worse. So, we are definitely not seeing as rapid a progression as you have seen, but we have been told to expect her vision to get much worse before she is done growing.

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  10. Thank you for your response – I had a look at your blog and your daughter is beautiful! It looks like she has the same curiosity that my daughter M has despiter their vision problems.

    I hope that your next appointment goes okay – please call back to tell me how it goes, although I’m going to subscribe to your blog so will hopefully find out!

    Penguin

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  11. Although my son’s experience is different (as to the cause of myopia) we share a similarity in the rate of progression of myopia and resulting need for increasing prescriptions. His vision issue was diagnosed at about 6 months at -8 R and -11 L and over the past few years (almost 6 now) progressed to a -9.5 R and -23 L. Did not have experience with lenticular lenses, but from what I understand, they are a very thick lens, atop another (like stacking magnifying lenses..to the best of my limited understanding…) We managed to -23 with regular prescription lenses..and the disparity (in eye size) was not so bad.

    As far as approaching school age..and the requisite challenges…my best advice is to strive to ensure that glasses…appearance..all normal. One thing that became evident immediately was not the challenge of compliance with glasses, or patching, or what have you….but the growing sense of self..and perception amongst a whole host of new peers…and the resulting questions. We were lucky overall with compliance with the patching and wearing of glasses…the challenges came, somewhat unexpectedly, with a growing sense of self(consciousness?). Minimizing the differences, emphasizing the similarities (look who wears glasses..you, me, teachers, other children..) helped a lot.

    Some other considerations, perhaps already mentioned…contacts. (maybe an implant – I believe this more common in Europe – though age may be an issue. Surgery – removal of the natural lens and imlanting an intraocular lens). (For reference…my son’s was removed at 4 and a half years and an IOL implanted. Tremendously successful to this point…though every situation is different.

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    • Hi George,

      Do you live in the US? My doctors refuse to do IOL on my son for the main reason that he wears his glasses. I’m asking where you live because like you mentioned I think surgery options may be more common in Europe.. How is your son doing by the way. What were his numbers when he had the surgery?

      Seema

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  12. Our 16 year old son was diagnosed with a high myopia when he was 4 yrs. It worsened steadily through the years which really had us worried but it has steadied since his 14th year. Our biggest problem has been sports. He has begged us to play and surprisingly his specialist has encouraged him. He wrestled for a few years but had to wear Rec Specs (goggles) to protect his eyes. He also played football for a few years but was required to wear a visor on his helmet to protect his eyes. My husband and I have had many sleepless nights worrying and wondering if allowing our boy to have a “normal” childhood is the best decision we have made. After getting a second opinion this summer, we decided that it is not worth it to allow him to play these contact sports. This is a very sensitive subject for us, he does not like us to tell people about it however we descreetly notify/remind the school every year. We have never met anyone else with PM at such a young age until I came across this sight.

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  13. Dear all,
    Thanks for sharing.
    I am doing a lot of surfing in order to find any recommendations that can be used to retard the myopia progression for my son. As a conclusion, the current proven and effective methods of slowing down myopia progression are Atropine eye drops and Orthokeratology. Here are the links:

    1. Review of the Development and Treatment of Myopia
    http://www.coopereyecare.com/studies/myopia%20paper.pdf

    2. How is atropine used for myopia control?
    http://www.myopiaprevention.org/atropine.html

    3. Advances in Orthokeratology: Corneal Reshaping Therapy
    http://www.katpo.org/koffler.pdf

    4. Influence of Overnight Orthokeratology on Axial Elongation in Childhood Myopia
    http://www.iovs.org/content/52/5/2170.full

    Of course, those methods have their own side effects and limitations. Please check them out, any comments are welcome.

    Good Luck.
    Sativa

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    • Hi,
      I am also looking into slowing the progression of myopia in my son’s eyes. He is 3 years old now. We first got him checked out about 10 months ago, and his prescription was -7.5 / -8 with -2.5 astigmatism. We went back in for a follow-up after 8 months and he had progressed to -8.5 / -8.5 and -3 astigmatism. My dad is around -20 in both eyes and has macular degeneration.
      I am considering atropine for my son. Have you tried either the drops or the ortho-k?

      Diana

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      • Hi Diana.
        Thanks for your sharing.
        My son haven’t tried atropine or orthokeratology yet, since his myopia degree is quite stable. Personally, I think it will be better for you to consult ophthalmologists to find the best option in order to slow the myopia progress of your son. If the risks of using atropine or Orthokeratology is outweigh the risks of the progressive myopia, then atropine or Orthokeratology is the best option for him. Furthermore, you may try to minimize the risks.

        Hopefully, you will find the way to reduce the progression of his myopia. I have some references regarding the atropine and orthokeratology, if you want to get the information further, just send me an email to sativahuang@gmail.com. I am very glad to share with you.

        Cheers,

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  14. I am a 44 year old woman with an even higher myopia than your daughter. Currently I have a -23.25 & -21.0. Unfortunately it wasn’t until I entered kindergarten that everyone realized the severity of my sight. Both the school and the eye doctor didn’t know how I made it to age 5 without this being detected – I guess just a different era. I have been wearing glasses & then contacts ever since. With each visit to the eye doctor would come another prescrition for even a higher strength. This continued till my late teens where my vision seemd to stabalize . Just so you know, I was a competetive gymnast. I played all school sports and certainly was never concerned about bumping my head & did did so quite often. (lol). I think the chances of retinal detachment from sports are probably slimmer than a child getting hit by a car at the bus stop. If we all go around in life worrying about “what if’s” – there is so much we or our children will miss out on. We all want to protect our children from any harm, I understand that, but you can’t put your child in a plastic bubble either. You also brought up the issue of school. My vision with the aid of glasses or contacts could never be corrected better than at 20/70 & a 20/50 – which made it almost impossible to see much of the boards at school & I know that impacted my ability to learn. As a child we are afraid to admit to a teacher we can’t see – even when we are put in the front of the row – my advise to you here is to enusre your childs teachers are well aware of the issue and reassure your child that it’s okay to let the teacher know if they can or can’t see the board.I was embarrassed and made fun of (glasses were so thick) I never wanted to draw extra attention to the fact I could not see. Keep this line of communication open – although it is more common today of others wearing glasses, chldren can be so cruel without realizing how much it hurts. That too is another reason I enjoyed sports so much – it was the one thing I excelled at that no one would pick fun at me. Made me feel like I fit in.
    My eye sight today still impacts my life. I have to have my doctor sign forms so I can drive, I often make mistakes when reading numbers on the computer. I still live this everyday, but I never let it stop me. I now have two daughters of my own 12 & 6. Unfortunatley my 6 year old has inherited my myopia. She was diagnosed at 4 and started out with a -3.0 & -2.75 – in the span of 6 months when we returned she had changed to a -4.75 & -3.25. The doctors said she will most likely slip to as high as mine by the time she is a teenager. She plays soccer, she does gymnastics, she swims without her glasses (as did I) – you just get used to it) she has a very normal life. Perhaps because I live it as well, I take comfort in understanding the challenges she faces. I can appreciate all of your concerns as a mother however, my advise to you is simple…….., you can’t prevent anything that may be happening with her condition, but you can monitor and support her – don’t be afraid for her , for her future, be supportive and help with any adjustments that she may need to help her with her challenges. 🙂

    Liked by 1 person

    • been there – your story is very similar to mine – I to am in the over -20 group of high myopia. I am 45. Had a detached Retina in my eye 18yrs ago when I was pregnant with my son. One week ago I had surgery for a cataract on my left eye. For the first time in my life (that I can remember) I can see out of my left eye without a contact lens or glasses. I am amazed. I am aware of the high risk of retina detachment but my vision had got to the point where I could not leave it any longer. I am due to have my right eye done in another month or so. The different vision in each eye makes me feel a bit dizzy and disorientated at times but in general I am coping ok. Would love to chat with you as I don’t know anyone with sight like ours and it would be so nice to compare notes and just have the support that only someone who has been there can know how it feels.

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      • Hi there,

        How old were you when you were diagnosed with myopia? If you don’t ind me asking what was your prescription when you were first diagnosed?

        Seema

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      • Hi Raewyn, I,ve just come across this site and read your letter with interest, I happen to have very high myopia, minus 27.50 both eyes, wear contact lenses but am using my glasses more and more as I get older, I,m 53 and live in the uk.M y corrected vision with contacts is good but not so with my glasses (myodisc, lenticular lenses) my right eye is ok but my vision is quite poor in my left eye and in poor light or bright sunshine I find it difficult to navigate my way around.My eye care specialist has recommended that I start to use a white cane of which I,m a bit embarrassed about using,I took it out the other day and spent the whole time with it folded up and hidden up my sleeve in case I was seen looking like a blind man, I know it’s stupid I just need more courage to use it.

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        • Gosh I am sorry for not seeing your reply until now….I was six years old when I was first diagnosed with myopia. Looking back I amazed that it was not picked up sooner…I am unsure as to what my first prescription was and doubt my 80yr old mother would know (or if she ever did know to be honest). Dave I wonder how you are getting on now (so wish I had seen your message soon after you wrote it)? Did you end up using the white cane? I can understand your feelings of reluctance to use it. I know I would have have been the same. I will stop writing for now as I am not sure if you will ever see this….

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  15. Our 8 y old daughter is inherited nearsighted. She just got glasses first time at the age of 6, not in the same way, but i have myself experience since i have extremely high nearsighted too. I ve got glasses first time at 7 y old and i ve prescribed -4 in both eyes. Doctor prescribed slower lenses for first time saying it would be better for get used to the strong prescription at first. Follwing years, my myopia was worsened pretty fast every year, getting stronger and stronger sometimes twice in same year. In this time, contact lenses were not so usual at least for kids, so i still suffering the fact of wearing thick glasses in my school years. Really i got very much better when finally got contact lenses.
    Having to visit eyedoctors and optician for years, mostly seems not much you can do for avoid worsening or diopters increases. I ve read some about not wearing full correction, but is not the majority advice. (bifocal lenses or getting gas permeable contacts) the Orthokeratology lenses just can get a reversible efect and nothing significative in high myopia. Think in my experience the best could be getting contact lenses as soon as the child can wearing them. By the way, the glasses lenses are now better than in my teens, getting thinner, lighter, unreflecting coatings, etc…
    For swimming you can get her custom prescription googles, at least until she get contact lenses. Try here: http://opticsdirect.com/childrens-swim-goggle. I wear them myself or contacts with non prescription googles. My daughter have googles and shes happy with them. About the lenticular lenses probably is soon, but i have some pairs of glasses and one pair have blended lenticular. (-17 AND -16) in apropiate frame is less notticeable the amount of myopia, but the vision field is even smaller than with usual lenses. Maybe better in a future. They are pretty much expensive too.

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  16. Hi Raewyn: Wow! You do have a lot of replies to your inquiry.

    But, my sister was born with congenital progressive myopia, so I thought I would add my story about my sister and her vision and glasses, etc. She got her first glasses when she was one. The Rx was -10.00D for both eyes. For her it was a real “eye opener” as she could now see things that before were probably pretty blurred for her or she could not see at all. Although we did not recognize this until a couple months before she got her first pair of glasses. Our Dr said that this was not too unusual. When she was 2, she needed new glasses that were -12.00D for both eyes and she was so happy that she could again see things so well. This continued and she got new glasses every year and sometime more that once a year. When she was 4, her Rx was -14.25D for both eyes, and they gave her +2.00D bifocals, as she was having trouble seeing things up close, wearing her glasses. Our parents were shocked that such a young, little girl, would need bifocals and have such strong, thick glasses to be able to see. She did not want to take her glasses off very often, but continued to do well, wearing her glasses. She was a pretty smart little girl with deep blue eyes that you could not see very well behind her glasses. Actually, she was pretty cute, but was blind without her glasses. The strength of her glasses continued to increase and she got new ones when she needed them, usually some months before school started and we could tell that she was not seeing very well.

    When she was 7, her Rx was -17.75D for both eyes with +5.00D bifocals. she did sit in the front of the class room to see the board and teacher well. Fortunately, she was not bullied any that we knew of and our brothers were protective of her. Our Dr did recommend that she take swimming lessons to develop some physical skills, as ball sports were impossible for her. She started swimming lessons at the YWCA, but the first day that she went there, they would not let her wear her glasses in the pool, so she cried a little and changed her clothes and went home. Some friend of the family new of a private poor that also gave swimming lessons, but the glasses had to be strapped on. Our mother got straps for her glasses and she started to lean to swim. I also went to this pool with her and learned to swim too. Eventually we got swimming goggles to put over our glasses so that the water would not bother our eyes and we learned to swim together. We both did not do any diving, as we did not want retina detachments.

    Both of our myopias continued to increase, hers much faster than mine, and when she was 10, she needed -20.00D for both eyes and trifocals of +2.50D and +5.00D. Wearing her glasses, she continued to see pretty well. The lenses were lenticular myodiscs, in which the viewing lens was imbedded into a carrier lens, making the glasses not a thick. They, however, at that time could not put bifocals or trifocals into the viewing lens, so they gave her monovision glasses in which one eye was for distance (-20.00D) and the other was for close-up (-15.00D). She no longer had binocular vision, but adapted to them rather quickly and did quite well with them. The also gave her regular glasses with the distance Rx of -20.00D for both eyes that she wore when she was outside, or swimming, watching a movies or TV etc when she did not have to see close-up. They also gave her regular glasses for reading in which both eyes were -15.00D. She continued to see pretty well and did well in school, in swimming and in fact became a good swimmer, and really enjoyed reading. Because she was completely blind without her glasses, she wore them all of the time. She even wanted to have them on when she went to sleep, but our mother explained to her when she first started to wear glasses that she did not need them when she was sleeping.

    To shorten this story a bit, when she entered high school (9th grade) her Rx was RE -25.00D for distance and -20.00D for close-up. The lenses in these glasses were quite thick, and one could not see her eyes very well, even being lenticular myodiscs. When she was 16, they had her try doing GOC or glasses over contacts. Her glasses were -10.00D with +2.50D and +5.00D, with the contacts making up the reminder of her strong myopic prescription. With this combination, she could see quite well, she said the best she had ever been seeing. She still have her other monovision, distance, and close glasses as well, as they did not want her to wear the GOC combination more than about 8-10 hrs a day, so as not to irritate her corneas too much. She could not wear just contacts, as they did not make them strong enough and they would most likely also be too thick for her eyes.

    She now is married and has two children and is a special medical doctor for young children with vision problems.

    Like

  17. I would love to connect to some of you as I’ve been ‘googling’ all night.. yesterday we took my 21 month old to the pediatric opthalmologist and I expected the glasses… but i did not expect the -16 and -17 extreme myopia.. i am a -9 and -10, have a scleral buckle in my left eye implanted 20 years ago (at age 15) and my husband is -5.25 in both.. so i was def expecting a vision impairment but not to the extent that it is. i did not ask a lot of questions yesterday as i was dumstruck; however, i plan to call him today to discuss anticipated progression, things i can do to help jax, etc.. his glasses come in next week and we are scheduled to go back in 8 weeks to the doc but i would really love to talk to anyone in a similar scenario. i know things could be worse and im very thankful for an otherwise healthy child (i also have an 8 month old that hasnt had the same signs jax did so im keeping my fingers crossed) but i feel helpless and uneducated on the topic because of the limited resources.. would appreciate any feedback.

    Like

    • Oh goodness, that really must have been a surprise. I would definitely ask your son’s eye doctor about progressive myopia. There are a whole lot of studies being done on possible ways to slow the progression of myopia including contacts and eye drops.

      Like

    • Hello Kasey,

      Did you get a second opinion? We went to my optometrist(not pediatric) and he said with kids of this age, the prescription highly changes if they accommodate while using retinoscope. My daughter was dilated and her prescription was unbelievably high for us to believe it’s true, and he agreed kids with that high prescription will not be able to see anything 1-2 feet away.that totally contradicts the way she is now. She can read pictures from book held several feet away. We are waiting to get her checked with a pediatric ophthalmologist for a second opinion.

      Like

      • Hey there – I did and it was confirmed.. He’s 29 months now and adapted great to his glasses.. I actually can’t imagine him without them! We go in March for a script check so fingers crossed we aren’t progressing…

        Like

        • Thanks so much for your quick reply. Its really great to know that your DS got adapted to his glasses so quick I’m hoping my little one does too. We have our second appointment in March. Meanwhile, do you mind sharing what symptoms you looked out in your DS? Sorry but I’m literally confused with my daughter’s -19 prescription and not being able to find much resources out there. This website is like a life saver for me. My daughter now 23 months doesn’t show symptom of myopia. She behaves like a normal child and can see objects far and identifies them, doesn’t trip on toys/objects and can look at a small ball rolled upto maybe several feets away and goes and get it to us. She knows around 70 words and for instance she can point to school bus which is around 3 blocks away. I initially thought she might be farsighted as she reads and recognizes objects far off, can tell out shapes, animals etc and goes to a daycare where they haven’t suspected any symptoms. We are keeping a very close watch on her. The only thing we have noticed this far is she occasionally brings fruits/food close to her face and examines them for a second or two before eating it (only during dinner time and she looks at toys fine) and that was the reason for our visit. I am waiting for my second appointment with the other PO but trying to convince myself it should all turn fine. Thanks in advance.

          Like

      • Hello Rach

        My daughter’s situation exactly like your daughter. She is 25 months old now. She is active and all acted like normal, just notice she is holding objects very close to her eye past to few months ago. She seem ok to see the objects far away, can point out the airplane in the sky without any sound come from airplane and told by others. She loves to stand in front of TV.
        Result come from 2 different PO and one Optometrist as follows:-

        Feb 2016 -8.00 opinion from PO
        Apr 2016 -5.00 opinion from Optometrist
        May 2016 -16.00 opinion from second PO

        I am very confusing and do know what to do now…

        May I know the progress for your kid now?

        Thank you

        Kind regards
        Ivy

        Like

        • Hello Ivy! I can totally understand your situation and concerns. I was in the exact same boat a year back when my daughter first got her glasses. She is now using them and doing great. I still am not sure how she identified all those little pictures from the book 5 feet away. Perhaps she was just performing well and remembering the place of images and by their color. After getting her glasses, she pointed towards a big beautiful dog that was golden colored and called him a fish. I almost broke to tears because that’s how her brain was collecting the images before glasses – by colors and a vague shape. Now that she sees so well, I’m super happy and contented beyond words can express. I can tell confidently now, she is actually seeing great. In just 3 years, she talks TON, identifies alphabets and numbers and beyond anything, she is such a happy girl. I felt bad of myself for identifying late at 2 years but still glad I caught it then, She LOVES her glasses and they are more like her best friend. They are the first thing she asks every morning. Hang in there momma. If your daughter has myopia she will do amazing once she gets her glasses and your perspective will totally change. Many unanswered questions become clear as they start pointing to things. Babies and children have an amazing way of adapting to things so its really tough to catch issues at such a young age I’m sure you are the best judge for her. Trust your instincts and if you are not confident with your current PO, please do take multiple opinions. We went to almost 5 PO before finalizing our PO and went with the doctor who was great with our daughter and spent enough time with us clarifying all our doubts. Sending positive vibes your way and sorry for responding late. This message was in a different folder in my GMAIL inbox. If you want to privately chat please let me know and Ill be more than happy to share our experiences so far.. Thank you!

          Like

        • Hi Rach, thanks for the response and nice to hear that she is doing well with her pair of glasses. The wide inconsistency of result made me so frustrated and I am really don’t know what i can do to help her. I try to find out all the possibilities thru the blog. I been advise to go back the PO for second visit one month later and put the Atropine 3 days before the examination to obtain an accurate prescription. Will the high myopia of vision restricted any activity of you daughter? As my daughter is quite a active kid and she loves to run and jump around and I am so worrying that whether her eye will be affected if she is too sportive…
          Thank you again!!!
          Regards
          Ivy

          Like

  18. Hi my daughter is three and her prescription is fairly severe, though not as bad as your little one’s. She is a 10.5 currently with 2.75 cycle or something in the left eye as she’s just been said to have astigmatism too which is a new discovery.

    I’m not sure where this blog is based but I am from England and I have found the hospital fairly difficult to get any real info from. She had only just seen the consultant and there seem to be new factors every time. They haven’t mentioned anything about retinal detachment but I have seen it in every forum I’ve read so I am concerned that this is an issue for her too? And she also has an extremely lazy left eye which she is wearing patches for daily but it looks like surgery will be needed of it’s still not getting better next time we go.

    The thing I’m finding really hard is I have absolutely no experience of this whatsoever. There is no history of any of it in either family so I have no idea where it has come from or what could end up happening to her eyes. Any help, advice or explanations of anything would be really helpful! It’s so useful to read what other people are going through with their children and seeing what their doctors have said too.

    India xx

    Like

    • Hi India,

      I feel your frustration – there is very little info to be found on this.. at this point Jax is a month in to his new glasses. Jax is obsessed with planes now that he has his glasses – he can see them 🙂 He also removes them when he is playing with his toys at a closer range because he’s so used to being so close to them. Its a work in progress and we go back on July 8th so… we shall see.
      The thing about retinal detachment – so I had one when I was 15 – freak thing, had my first dilation and the doc immediately called a surgeon.. apparently I was on the rode to a full detachment within the near future and they implanted a scleral buckle within 3 days of that finding. My diagnosis was due to ‘high myopia’ (at that time my script was probably around – 9 and -10).. I would definitely ask if an annual visit to an retinal specialist should be done just to monitor the situation. you’re retina will not just detach overnight and its typically a progression that they will see by doing annual visits.
      As for the sport situation – the other contributor to detachment is impact to the head (i.e. common amongst boxers) so if you compound an already highly myopic vulnerable retina with a high impact sport you’re essentially doubling your chances of detachment.

      I honestly was never told to shy away from sports, even after my detachment, I went on to play sports although they were fairly minimal impact although I did snowboard but I don’t remember any occurrence of wacking my head..

      that being said – jax wont play football and ice hockey but he will have every advantage and then some without feeling restricted… i’ll just steer him in the direction of golf, tennis, soccer, baseball… 😉

      hope this was marginally helpful.. its a very tough situation to be in as a parent and of course things could be much worse than what we are dealing with but it doesn’t make the reality any easier.. especially when our pool of knowledge is so small.

      kasey

      Like

      • Hi Kasey thank you for replying so soon. That is definitely helpful info about retinal detachment so I’ll definitely ask about it being monitored at the next appointment. I just feel really in the dark about it all I don’t understand a thing they say! I’m by no means stupid but the doctors in the uk just expect you to understand what they say immediately. And as she’s only just seen an actual doctor (the consultant) rather than an ophthalmologist, I think they’ve only just started to work out what’s going on themselves.

        I’m hoping now that they have they will be on the case a bit more and her new prescription might help. She’s so clever and happy considering she’s only been able to see anywhere near properly since February! It beaks my heart not even knowing what caused it, I always worry it’s something I did wrong.

        Anyway thanks so much for your help! I’ll be sure to check back here in future 🙂 xx

        Like

  19. Hello to All and Thank You,
    Please give me the best advise for my 5 years old Boy. Today we got our first prescription:
    OD – Sphere=-3.00 / Cylinder=+1.50 / Axis=090
    OD – Sphere=-2.50 / Cylinder=+1.50 / Axis=090
    Please give me the best advise about the glasses.
    Thank you in advance for your good co-operation.

    Like

    • Hi Svetlozar, that’s a moderate myopia (nearsighted) and moderate astigmatism prescription. I think your son will definitely notice a big improvement when wearing glasses. Do you have any specific questions?

      Like

  20. Hello…

    My 3 year old son was diagnosed today with a -10 myopia.. this is shocking to me… his 2 older sisters have a slight one.. (like- 2.25..and they are 15 and 18..) i knew he would need glasses… but he can see things pretty far away… (holding up fingers… toys..letters…he can see them without squinting up to about 8-10 feet away.. any more a d he says he cant see…) he never squints… but does hold his tablet up close to his face… besides the tablet and books up close he sees fine… how can he be a -10 already?!?!?! I have severe myopoa also… but was a -10 at 16… im now 35 and am a -20 and just about no sight in my right eye… (scaring caused blindness )
    I had taken my son to an optometrist. ..she was not the best with the toddler… he wasnt cooperative after the dialation… im wondering if her assessment could be wrong.. he was able to see ALL the letters she asked him… (except for small ones) again i just don see how she was able to get a good exam in.. my son cried..and wouldnt open his eyes for her to shine the light in… he wouldnt keep looking straight… ugh im worried..and uneasy…
    I dont want him to be blind like i was/am.
    Should i see a pediatric Optho? Are they better than an optometrist?

    Someone mentioned GOC (glasses over contacts… is this doable? Why has no one mentioned this to me???? I wanna do that for daily use!!! My glasses are horrible and i only use em at home…

    Like

    • I think a second opinion sounds like a great idea, I’d seek out someone who has a lot of experience with young kids. Good luck and let us know how it goes!

      Like

  21. I started wearing glasses at 18 months old. I am now 30! My vision is -13 & -11. Fortunately I have not had any issues. I wear expensive custom contacts & it corrects my vision. I’ll never be 20/20. I want to offer reassurance to any parent who has a young child that has severe myopia. I have & continue to live a normal life! Little Tricky finding contacts that correct my vision & quite expensive but a very small price to pay.

    Like

    • Join the L4E group on FB (and if you don’t have Facebook you should get an account for just that reason) they are a great support. I’m 35 and was always around -10, had scleral buckle surgery at 15 for the left, strabismus surgery at 35 on the right and just had cataract surgery on the left with a corrective toric lens put in.. I’m now 20/20 in left and a -10 in the right (opted out of another surgery on the right to correct because I figure I will address it if and when a cataract may develop.. Or the use of a contact in that eye gets annoying).. My oldest son (28 mos) was diagnosed at 20 mos at -17 (glasses are -14.25/-15) .. We got the second opinion to confirm before putting him in glasses and he’s been doing awesome w/ the glasses. He gets dilated every 6 mos now forever and hopefully doesn’t progress… So far so good.. Please feel free to reach out any time with questions but I strongly encourage you to join that group!

      Like

  22. Hello
    My daughter who is now 2 years has been diagnosed with -18 in both eyes. I never noticed her squinting or trying hard to identify objects. Her daycare teachers haven’t noticed either, at circle time or during open play. It was during a general checkup this shocker came up.She can identify the toys and objects across the room. I am myself myopic with -6 but she can see the things I don’t see without glasses. She can identify animals/pictures from books placed at a distance of 6 feet and close by. When I try looking at them without glasses, it just looks extremely blurred and washed out.I cannot see the book itself without glasses let alone the pictures) Trying hard to understand how this could be possible? Should I take a second opinion? Highly appreciate any suggestions or similar experiences you can share.

    Thanks,

    Like

    • I believe she memorized the pictures as blurry and can recognize them, despite that. But her mental pictures, are, of course wrong.
      I’m -4 and without glasses i hardly recognize stuff I’m looking at

      Like

  23. Just to add to the above comment, she has been developmentally active, crawled at 6 months and walked at 9 months and now runs and climbs up and down the stairs without help. Runs to us when we go to pick her from daycare before we cal her name out (the room is quite big) Also, calls out a school bus/police car which is three blocks away from her car seat. Can PO do an incorrect diagnosis? We called her again later the day and she replied, she is not sure how the baby can do all these but that’s her prescription. Can this high prescription kids do all these activities?

    Like

  24. Thanks a lot!! We have set up an appointment with a different PO.extremely sad and just not able to take it. Hoping for a miracle

    Like

    • I was once that child with extreme high myopia….I am now 47yrs old. My vision at it’s worst was -25 in my left eye and -29 in my right eye. I had cataract surgery just over a year ago and for the first time in my life I can see without thick glasses or contacts. i had a detached retina three times at the age of 27. I can remember the struggles of growing up with such bad vision but in many ways I didn’t really notice that I was different because I didn’t know what it was like to see like most people can. Support your little ones and encourage them but try not to make to big a deal of it around them – of course you will worry (I am a mother too) it is only natural – it is not until they are older that they will realize they can’t see all that well and comments from other people can sting because they don’t understand why you can’t just get stronger glasses or contacts….anyway, just thought I would make a comment….hope it was ok to….

      Like

    • Hi Rach, I was just wondering how your little girl is doing now. My son has just been diagnosed with -12.00 in both eyes at 2.5yrs but the only symptom has been looking at books/screens/food closely otherwise he has met all developmental milestones and can spot things across a room. I’m in no doubt he has myopia but really to that extent! so worried its progressive! Thanks, I hope all is well your end

      Like

  25. Raewyn Haley- thanks so much. Of course it is ok and it gives so much relief hearing the experiences from others who went through this stage. But I was just curious. Did you have any symptoms as a baby/toddler as we don’t observe much with my little one? Appreciate your response

    Like

    • I started to wear glasses at the age of five – it was picked up at school. I am unsure why my parents did not pick up on things earlier. Looking back I can remember getting up super close to the tv but that is about all I can remember…My glasses were always thick and heavy (much better lens out there these days but still difficult for such a high prescription) – I began wearing contacts at the age of 11 (which back in the early 80’s was unheard of really). I have two children both in their 20’s now and I guess because of my issues I was always looking for signs that their eyes might be bad as well (I feel blessed they both have good vision)..Also, it is amazing how a wee one will seem ok because they are only used to what they are seeing and don’t know anything is wrong so just carry on doing what they do…

      Like

  26. Rach – because of my eyes it was on my radar – I would pick up on things with Jax – like looking at everything very closely, focusing on me better when I was closer to him, etc.. very early on.. my pediatrician gave me the standard ‘go when I tell you to go’ when I said I wanted to have him tested and i’m glad I A: found myself in a pediatric ophthalmologists chair for my adult strabismus issue (since corrected) and B: listened to my gut. My PO said to bring him in and I was shocked at the script (I expected something – just not that myopic).. took him for a 2nd opinion, confirmed, then put the glasses on him.. its been amazing to see him see.. he’s had zero developmental issues (he’s actually huge) and he’s a happy little guy. he will alternate between a retinal specialist and his PO every 6 months to monitor his retina’s and the last PO apt the Doctor stated he didn’t think it would be much more progressive and that his vision just sucks thanks to me. I had bum balls my whole life and in a way they defined me – stronger. detached retina at 15 and the strabismus and cataract surgery at 35 (you’d never even know it if you looked at me). just being in front of everything w/ information means your ahead of the game and on a path to providing your little one with the best possible care.. hope that’s helpful..

    Like

    • That’s really helpful. Thanks so much. We will get to know during our appt. next month and will keep you posted how it goes. I find so much of relief talking to parents who have kids with higher prescription. It might be heartbreaking to see them in glasses but the happiness on their face when they actually see things takes all of our emotions away.

      Like

  27. Hello,
    Today I took my 12 year old daughter to get contacts and I found out her prescription is -4.25. I am really worried about her progressing and her glasses get thicker each year and make her eyes look smaller any way I could fix this other then contacts.
    Thank you

    Like

    • Hi Taylor, there’s been a lot of research recently on ways to slow the progression of myopia. I would ask her eye doctor about it. Some of the treatments that are showing promise include Ortho-K and atropine drops.

      Like

  28. i am fourteen years and had eye problems at an early age.-2.25 l and-3.00r.but i hate wearing my glasses since i can see perfectly without them but my mum doesn’t like it when i don’t wear my glasses.i have spoilt almost 5 frames during the past 2 years i opt for a plastic frame but the doctor doesn’t think of it as advisable since i hqve broken most metal ones.debbie.ghana

    Like

  29. My son is 10 years old and has severe myopia and I’m soo anxious as well what ahould we do to stop tge increase of his degrees

    Like

  30. I’m so thankful that I found this website and this post. Today we took our three year old son to an opthamologist for the first time. For as long as I can remember he has held things very close and would cross his eyes when he was focusing. For the longest I thought it was just a baby thing and didn’t pay it any attention. When he started nearing his birthday this year I started getting concerned, so I brought it up to his pediatrician and she referred us. I myself have always had terrible eyesight (I believe I’m currently at a -8 or so, but I really need another checkup) and have several vision problems that run in dad’s side of the family. My husband also has poor eyesight, though slightly better than mine. His mother has retinitis pigmentosa and he has a lazy eye that he had surgery for as a child. Given all of that I went in expecting that he might need glasses (Our six year old is the surprise with her so far perfect vision), but I was absolutely floored when the doctor said his eyes were worse than both of ours and wrote him a prescription for -12 lenses. He began asking if I had any family history of retina detachment and I told him that I was told I was at risk for it and that my sister has had a retina detach. I started to tell him that I have been told that Stickler’s Syndrome runs in our family and before I could finish he cut me off and said he was just thinking that’s what my son may have. I have several symptoms of it myself, but have never been tested. The doctor gave him a referral to a specialist who is supposed to call tomorrow to set up an appointment and he highly recommended that I see him as well. I’m excited at the prospect of finally getting some definitive answers about my vision, but I’m a little broken hearted that my son already has such poor vision and worried to death over how it may progress as he gets older. Reading all of these stories has really given me a lot of new questions and thankfully some comfort. ❤ Really looking forward to getting his glasses in the next few weeks and watching him really SEE for the first time. 🙂

    Like

  31. Hello to all of u;
    My 5yr son recentaly diagnosed with -10 &-11 with astigmatism and ambylopia.i am 37yr old and on -5D while my wife eye was perfect.my son suffering from febrile convulsion at11 months.till now totally 3conulsion occurs.he is on valparin 200 syrup from 2yr of age . Is it side effect of valparin or convulsion ????? Because in my family from both side no one hav such high prescription in his whole life.
    Kindly give opinion a….

    Like

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