Reader question – myelinated retinal nerve fibers

I’m reposting this comment from Stacy in hopes that others will have information for her. -Ann Z

I have a 15 month old son, Ethan, and we just had our first visit with a pediatric ophthalmologist. I feel very disappointed, frustrated and scared after this appointment. We took our son to the ophthalmologist because his left eye turns in. I was not terribly worried because I had amblyopia as a child and anticipated that at the most we would be patching our son’s eye. The eye doctor told us that Ethan’s right eye has 20/20 vision, but his left eye is extremely nearsighted and that he had something called “myelinated retinal nerve fibers.” The eye doctor told us we would need to patch his right eye and that he would need to wear glasses with a Rx of -8.5 in the left lens. He told us we could “read up” on these myelinated retinal nerve fibers as it is a rare condition. He also said that with patching and glasses (6-8 hours a day) that a reasonable vision expectation for Ethan would possibly be 20/50. I feel lost. All I can find on “myelinated retinal nerve fibers” are medical journals full of jargon that I do not understand!!! I’m still unclear as to what Ethan’s actual diagnosis is or how long we will need to patch and wear glasses. All I know is that I am to return in 2 months to check his vision again. We are seeking a second opinion. But has anyone been told their child has “myelinated retinal nerve fibers?” Any help would be soo appreciated! I feel defeated.

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94 responses to “Reader question – myelinated retinal nerve fibers

  1. Hi Stacy! Rest assured that myelinated nerve fibers is one of the most benign eye conditions there is. Shame on your doctor for not explaining it better and leaving you with such a feeling. Basically it’s an abundance of nerve fibers in the retina (back of the eye) and it gives off a very highly reflective appearance when we shine our bright lights in that eye. I’ve seen many patients of all ages with this and it’s just not a significant problem of any kind. Where do you live? I might be able recommend a good optometrist in the area. Someone that can give a great pediatric eye exam AND have plenty of time to answer all your questions.

    Jason Deviney, OD

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    • Hi Dr. Deviney,
      Thank you for your reply. This is very encouraging news as I have been pretty devastated the last few days. I had no clue that his left eye was so myopic as his eye turn is subtle and probably would not have sought an eye doctor except for that our pediatrician mentioned that his eye was turning and might want to get it checked. We live in the Houston area and a recommendation would be wonderful. I am interested in getting the best possible care for my son. My husband and I discussed also having an eye doctor look at our eyes to see if we had the fibers or any other similar issues as Ethan.

      We had a second opinion yesterday. He basically gave us a similar diagnosis, but his prescription for eye glasses was a -7.0 instead of -8.5 like the first doctor. However, this second doctor was much more sensitive to us and much more willing to talk. His take on the myelinated retinal nerve fibers was that he wasn’t sure if it would affect Ethan’s sight or not. He also mentioned that the optic nerve in his left eye also looked slightly smaller, but couldn’t be completely sure whether that would necessarily affect his sight either.

      We have patched Ethan for three days in 6 hour stretches. So, far he has done well and the eye straightens almost immediately with patch. For as horrible as the doctors have told me his sight is in that left eye, I expected him to not get around as well as he does.

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  2. My six year old daughter was diagnosed with a mylinated nerve fiber with a -8 perscription in December. I give permission for the blog owner to privately pass on my e-mail address to you. I too was told that it is a rare condition and at a future appointment they will be bringin in a medical photographer to document her case. According to our PO the nerve problem really isn’t a big deal. Her brain was receiving fuzzy images from that eye and caused the amblyopia. However, with patching and glasses she has a good prognosis. You are so lucky to find out that your child has it at such a young age. It will make it easier to treat.

    She patches 4 hours on school days and 8 hours on weekends. She has her follow up appointment tomorrow, but it appears that she already has considerable improvement.

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    • Hi Melissa!
      THANK YOU, THANK YOU, THANK YOU, THANK YOU for taking the time to read this and reply! 🙂 I received your email address from the blog owner and will be emailing you shortly as I’d like to exchange some details of treatment and the improvement you’ve seen in your daughter. I can’t tell you how encouraged I am that someone else has heard of this condition. After the first diagnosis, I just felt crushed as except for the slight eye turn in his left Ethan gave no indication of a sight problem – no squinting, no turning the head, no balance issues or even holding objects close to his face.

      We have patched Ethan for three days now. He’s taken it well so far. He did a 6 hour stretch today and got around seemingly well. Although, he seemed a little less confident moving around, but he roamed the whole house and played with his toys. I worry about what he sees out of his “bad” eye and feel guilty for taking away so much of his sight with the patch. I’m hoping that he will accept the glasses as well as he accepted the patch. I just don’t know how I’m going to keep glasses on a 15 month old.

      How much improvement have you seen in your daughter? Will her prescription improve with the patching? I’m concerned that if Ethan is already a -8.5 or -7.0 at 15 months, how much worse will he get? I put some more details of our second opinion in my reply to Dr. Deviney above.

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  3. We’re in Houston too!!! My daughter’s PO is Dr. Chilakapati with Kelsey-Seybold. So far we’ve only had one appointment with her, but have our follow up today. I was very impressed with her and her own daughter has amblyopia. Because of that I’m sure she is passionate about finding the best treatment options.

    Right now our goal is too just improve her vision with glasses. I was so overwhelmed at our last appointment that I didn’t ask as many questions as I should have as far as long term goals. I made a written out list for today’s appointment.

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  5. Jason Deviney :
    This was the other video about an infant with contacts…http://www.youtube.com/watch?v=sxHnoJP4t7I&NR=1

    I have curious about the possibility of a contact for Ethan’s left eye. Thank you for this information. Let me know if you can recommend anyone in the Houston area. I’m also waiting to hear more from Melissa regarding her doctor as she is in our area.

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    • I would go with Melissa’s recommendation since she has first hand knowledge, which trumps me at this point. Rachel Rippey is a great doc. She has a Vision Source office on Voss Rd. She would be great to check out you and your husband.

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    • LISTEN AND BELEIVE ME I FEEL FOR ALL OF YOU MY SON HAS HAD THIS FOR 16 YEARS HE IS MINUS 22 IN HIS BAD EYE AND WITH A CORRECTED LENS IN HIS GOOD EYE HE CAN ONLY SEE 20 30 . WE NEVER PATCHED HIS EYE BECAUSE HE WOULD NOT BE ABLE TO SEE. WE LET HIM BE A CHILD AND HE HAS ADAPTED THROUGH OUT HIS LIFE PLAYING FOOTBALL ,SCATEBOARDING AND YOU NAME IT. BE GRATEFULL EVERYDAY THAT YOUR CHILD CAN SEE . THE ONE EYED MAN IS KING OF THE BLIND. I MEAN NO DISRESPECT AND GOD BLESS YOU. WE HAVE LIVED IT YOUR DOC IS PROBABLY RIGHT ,WE HAD THREE TO FOUR OPINIONS ALL WITH THE SAME RESPONSE . EVERYDAY WE PRAY FOR A CURE BUT ALWAYS GIVE THANKS FOR THE VISION MY SON HAS.

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  6. Just to let all know, I was born with myelinated retina in the left eye. This was 1963, before they had all the advance treatments that they have today. My vision in the left eye has always been extremely blurry (cannot read or even see letters), but it gives me enough color and shape so that I have depth perception to drive (sadly, not enough depth perception to play team sports–I was strictly a track runner).

    I am not sure of what the advancements are today for children with this condition. I was born too early, and today there is no treatment at the ripe old age of 47. Doctors said that even if they replaced the my brain could no longer read the signal.

    The good news is, it’s not terribly debilitating, so even in your child’s worst case scenario his life will still be productive with minimal to no handicap. Many of my childhood friends had no idea I had this condition as it didn’t affect much except some minor coordination issues (which was written off as being clumsy). Only now, in adulthood, with the eye growing lazier, are people starting to notice it, but my wife says it’s not distracting, and by the time your son is in his 40s he should be comfortable with himself, as I am with myself.

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    • i have it to and can no longer drive at 34. the vision in my right eye is gone because of the myelinated optic nerve fibers and my left eye seems to be giving up. i just wish there was someone to help all the kids that have this! but everyone adapts right?

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  7. Hi Stacy,

    I too have a condition that sounds very similar to what Ethan’s got. From what I could gather from the doctors I’ve seen over the years, myelin in my right eye’s retina affected my fovea (the part of the retina responsible for the sharp central vision). This caused my right eye to turn inward, seeking another position that would enable it to get the best image. Left untreated, this lead to convergent strabismus (cross eye).

    The image I get from my right eye has about the same clarity as peripheral vision (it actually is peripheral vision since my fovea doesn’t work right), but this never bothered me too much. My left eye works fine, so there isn’t much that my sight prevents me from doing.

    The worst part is the psychological effect my strabismus has had on me. But if this can be prevented using eye patching and glasses, in my opinion, everything else is extremely manageable.

    All the best and I really hope everything works out for you and Ethan.

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  8. I was diagnosed with myelinated retina in left eye in my early 20’s. The assumption was that I was born with it but there was no way to diagnose it. I just always had a bad left eye from about age 8. I am now 46.

    Looking at me you wouldn’t know because there is no physical evidence at least none that is noticeable to the casual observer. I get a ‘shadow’ over images in the lower left quadrant of my left eye. If I center my vision on the emblem in the middle of license plate I can’t make out the characters to the left of the emblem. When I move my left eye the characters come into focus.

    My daily life in regards to work, play, driving, sports etc has not been affected thanks to an OD who knew what the condition was and how to order my contact lens and glasses RX to compensate. I get annual checkups with mapping and visual field tests and the condition has not changed in the last 20+ years.

    Of course, there’s no treament at my age. I wanted to get Lasik and was told it wouldn’t do me any good because of this condition. Hopefully for the children that have been diagnosed with this the glasses and patches will help.

    All the best…

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    • Hello my daughter has the same conditions as you I was considering asking about lasik, may I ask you why they told you it wouldn’t be worth it to have it?

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  9. Hi, I’m not sure I am at the right place, but my 13 year old son went to the eye dr today and as explained to us he has a glowing around his optic nerves. The Dr said it was extra Myelin in his optic nerves and it was benign. I too can’t find anything on this and the Dr. sent us out for a CBC to rule out a blood disorder(totally freaked out by this) He went 3 months ago and they found it then and it hasn’t gotten worse or better, stayed the same. He goes back in 6 months unless the blood test come back bad. Any clue as to what the blood disorder is?

    Thanks,
    Brigetta

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    • My 8 year old was just diagnosed with this and the optomitrist said it can mimic basal or squamous cell carinoma so he wants us to come back in 2 months. He said if it is carcinoma the size will change rapidly. This may be why your dr oredered blood work.

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  10. forgot to write he had a very slight vision problem, but does not require glasses as of yet. Said still 20/20 in both eyes.

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  11. Hi Brigetta – I do not know what the blood disorder your doctor is referring to…I’m sorry. I do know that at first we discussed the possibility of referring us to a retinal specialist to rule out the possibility of any other disorders, but since there has been no changes in the myelin and no other symptoms then our PO decided it was not necessary.

    I have spoken with two OD’s who have both said that the myelin is benign and should not affect Ethan’s vision…unless it is covering the macula. Since our PO did not mention this…I’m assuming it’s not. My PO also told me that one of his former patients has myleninated retinal nerve fibers in both of her eyes and she went on to become an Olympic Gold medalist. That it had no detrimental affect on her at all. From what I’ve learned it may or may not affect a person’s vision, but it generally does not.

    As for an update on Ethan’s vision, the overall news has been good. At our last visit, last month the PO tested him and said it looks like his left eye will be usable because it was tracking very well with his right eye patched. It has taken 3 months and he will finally accept wearing the patch for about 3 hours every morning. Boy, were there a lot of tears (both him and me). We have had to purchase a second pair of glasses, but he is extremely resistant to wearing them at all. So, he wears the patch alone and toddles around and climbs and plays like there is nothing wrong at all. We are due to go back in a couple of weeks…I know that we need to start working harder on the glasses but it’s difficult because he sees so well out of his right eye and he’s really not old enough to bribe yet.

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  12. Hi Stacy – We have just found out that our 4 year old son has the exact same condition as Ethan. We found out by accident as his eyes were twitching and blinking, we checked it out. Turns out the twitching and blinking was just a seasonal allergy and he got drops to fix this. But the rest, we had no idea! We were sent from one specialist to the next for final confirmation, and were told that he has myelinated nerves in his left eye coupled with nearsightedness of RX of -8. His right eye is absolutely fine. We were told that he is not using his left eye at all at this point and can see pretty much nothing from it (mainly because his brain has switched off from using it)

    This is how I understand the problem (from the explanations of my doctors):

    – the myelination and the short sightedness are 2 different things. It is not know if one caused the other or if they had any connection to each other.
    – in your body, all nerves are covered with a myelin sheath to protect them, except in the eye. This is because the myelin is opaque, not ‘see-through’ and is whitish in colour. With myelinated eye nerves, the myelin has continued to grow in the eye when the eye was developing, when it shouldn’t have.
    – you are born with it. It shouldn’t grow any more or any less after birth. It is what it is.
    – the nearsightedness is because of the shape of the eye. A nearsighted eye is longer than a normal eye. This can be treated with a lense, to bring objects back into focus, like any other person wearing contacts or glasses.
    – it is not known how much the myelination hinders sight, if at all. I saw a photo they took of my sons eye and it is almost all white, except for the middle part. Even though it was the most severe case this specialist had ever seen, he said that the most important part for sight was in middle and in the middle my sons nerves looked healthy and fine. So it is hard to understand if the shortsightedness or the myelinated nerve was the main cause of Jacks lack of sight in his left eye.
    – Also, because he has -8 in the left eye and perfect vision in the right, the difference is quite great, which means that the right eye has taken over seeing and the left eye become lazy – wondering off occassionally. This is a problem in that if you stop using your eye, the healthy nerve cells can die off. If you don’t use it you lose it.
    – So, to fix is lack of sight, we have to fix the short sightedness and train the left eye to work again (and that means training the brain). So that when you have trained the brain to use the left eye, at least it will be in focus and he won’t want to ditch it again. Hence a contact lense (for focus) and patching (to train the brain to use the eye). There is no way of fixing the myelination but if we can fix the other 2 problems, there is no reason sight can’t be brought back – by how much who’s knows! (as it is not certain that the myelination actually hinders sight or to what degree)
    – My doctor recommended a contact lenses and NOT glasses for the same reason as Jason Deviney outlines above. That the difference between the good eye and the bad eye is so great (-8 and perfect vision), glasses can seems a bit ‘wierd’ to the brain. Of course I found this very daunting to teach a 4 year old to use contacts! It might be easier for a 15 month old to wear contacts as they seem to allow you to do more to them than pre schoolers. My son keeps screwing his eyes up when I put drops in, let alone contacts!
    – I also found out that the development of the eye is not complete untill about 6 or 7 years of age, so catching it early and correcting it early is a huge step forwards. You’ve caught it at 15 months which is great! My son is 4 and we never even knew! One consolation is the fact that we never even knew – ie it has not hindered Jack in life at all. Jack is a very talented golfer at 4 years old, he is very sporty and can hit a tennis ball and even a squash ball unlike any other kid I know. So if he can do that now, what will he be able to do if we can improve his sight in the left eye.

    Anyhow, hope that all makes sense. I’m not a doctor, I’m a mom with a kid with the same problem and feel exactly like you do. I’m glad I found your post as there is not much out there on the condition.
    I have ordered the contact lense and am trying to find a good doctor to teach a 4 year old how to use them! Once Jack is comfortable wearing the contacts for most of the day, we will start patching the good eye. We have to work it up to 3 hours a day.

    Your original post was back in February so I guess you are much further down this path than me. I would love to hear your outcome so far as the most uncertain part about all of this is not knowing whether it will work or not and how much sight can be regained.

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    • Hi Andy,
      Thank you for you comments and it is encouraging to hear that your son has done so well despite his vision problems. After talking to many doctors, we have also been told pretty much the same thing you have regarding the myelination. Generally, the doctors that I have talked to have said that it really doesn’t end up being a big deal for the patients they have seen with it. Ethan’s current doctor had one previous patient with myelination in both eyes and she went on to become an Olympic gold medalist ice skater. So, I guess they really don’t know much about it because it doesn’t occur very often.

      As for Ethan’s prescriptions, they have changed from -8.5 to -7 and now the doctor believes he might be a -4 or -5. It is really difficult to tell what Ethan’s actual vision is in that left eye because he cannot take a proper eye test and tell us what he actually can see. So, we probably will not get a completely accurate answer regarding his vision in that eye until he is about your son’s age.

      I asked about contact lenses, but our doctor really encouraged us to use glasses so as to protect the vision in his good eye. He’s a toddler and he is clumsy. But so far, I cannot get him to wear his glasses for anything. So, right now we are just working on patching. I can only get him to cooperate for about two hours a day. I will start increasing the time little by little or it turns into a major battle. I will be eager for when he is a little older and I can actually bribe him to wear the patch and glasses. So far, the doctor has been satisfied with the patching and has noticed that when patched he uses that left eye pretty well.

      When the doctors first told us to patch Ethan they said that we might want to consider getting him a helmet or padding the furniture because he would be falling and running into things and just having a terrible time of it because his vision was supposedly so nearsighted in that eye and he wouldn’t really be able to see without the aid of glasses. I must say that Ethan has not once fallen or run into anything since we have been patching him without the glasses. He pretty much behaves exactly the same with the exception of annoyance with the patch. He doesn’t behave as if he has a vision problem at all.

      As for the patching, I do believe it works well. When you cover his right eye, the left eye tracks very well. Also, sometimes when he is watching tv just for the fun of it, I will obstruct his vision in his left eye with my hand and he will now push my hand down…. It used to be that you could put your hand in front of his left eye and he would not notice at all or try to push it out of the way. Other people have noticed too that his eye seems to be more straight than it used to.

      The other issue with Ethan’s eye besides the nearsightedness and the myelination is that the optic nerve is smaller, too. The doctors cannot say definitively whether this will actually affect his sight either as the nerve can be smaller in one than the other and still have perfectly fine vision. We will just have to wait and see until he gets old enough to tell us what he can see because right now we are really just guessing.

      The whole situation is tender for me. I worry and it was heart breaking at first, but overall I have seen improvement and so has the doctor. But I agree….the most difficult part is not really knowing the outcome of all this.

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    • Hello!
      My son is 3 and was just diagnosed with this yesterday and we were told that he is basically blind in his left eye. We left the dr office devestated and with so many questions. I know this blog is a few years old but I’m hoping you still get this email. I would love to talk to another parent that has experienced this. Please email me if u receive this
      Thank you so much
      Ashley
      Ashleysellsstl@gmail.com

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  13. Hi Stacy – You Are Not Alone!!! our 5 yr-old received the same diagnosis in late oct.2010. Our specialist in Indianapolis also talked about the same process of glasses and patching. And, apparantly can have really good results. I like you was overcome with all the questions and concerns. But they truly do seem to have made strides in dealing with this.I always think the waiting is the hardest. Even with Ethan being so young; our children are very resiliant when given a chance. Our situation is a bit different now as I believe we experienced a miracle on our return visit to recheck. His doctor couldn’t believe the improvement and we told him our son had been praying. God’s word says “faith like a child”. What a testimony to me and the doctor. Email me if you’d like to talk more!! I will be praying for Ethan and you. And I am sure Nathanael would love to do the same. I will share this with him tomorrow.Please let me know how things go. I would be happy to ’email pal’ as you journey through this! with true understanding, Tammy

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    • Hi Tammy – Thank you for responding. Your son’s news is very encouraging. How wonderful for you all! We have been trying to patch Ethan for a year now. At first, it was not difficult at all, but now he really fights it… and forget about getting him to wear the glasses. Mostly we get about 30 minutes a day and if we are very lucky he will wear it two hours, but that seems to be more difficult to do lately. I try to remind myself that he is only two years old. The worst part is the waiting… especially because Ethan does not yet have the verbal skill yet to tell us what he actually can see. I try to comfort myself with the fact that when he does wear the patch it does not seem to inhibit him at all… he does not run into things, trip and seems to get around just fine. Hopefully, when he turns three at the end of this year we will have a better idea of what the vision is in his affected eye.

      I would love to exchange emails with you. My email is stacy@mihosan.com And thank you for the prayers.

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  14. I would love to hear how this turned out and if there is anymore info or options. My 19-mo daughter just got diagnose a couple days ago and I too feel lost. I was told that glasses/lenses would not be of help and patching is the only thing to do. I am also concerned about the rate of progression – I hope that it does not progress. It was a blessing, after all the websites, to see this and hope for a response of someone else living it. Thank you and I hope you have had success

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  15. Stacy and everyone else,

    To PS- I’m sorry to hear of your daughter’s diagnosis. With treatment, your daughter should make good progress, especially starting treatment at such a young age. Glasses are a HUGE part of treatment. Without them patching will not be effective. By using a combination of glasses and patching, you should see some improvement by your next appointment.

    I posted here over a year ago that my daughter was diagnosed with a myelinated nerve fiber and amblyopia. It’s been a long time and wanted to update everyone on our progress. My daughter was diagnosed in the fall of 2009 at age six. Her vision in her week eye was 20/400. We patched 4 hours per day during the week and 8 hours on weekends. Within 6 months she made improvement to 20/125. Once we got to that point (now 7 years old), she made no more progress. The myelanation in that eye is very severe along with a few other defects so it looks like this is as much progress as we can achieve. However, I’m very pleased. She is able to see 20/20 with both eyes with glasses and will have no restrictions growing up. We have slowly cut out patching and now my daughter is able to be a normal glasses- wearing 8 year old.

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  16. Hi Melissa – I’m so glad to hear your daughter has had such good progress! That is hopeful. It’s wonderful that she can see 20/20 with glasses!

    PS – Be happy that you caught this at such a young age! Everything is too soon too tell with Ethan. We started this process a year ago when he was 15 months. We have a difficult time getting him to patch right now or wear glasses. It was much easier in the beginning before we got into the terrible twos! I remind myself that he is still a toddler. We wear the patch everyday. I’m hopeful that he will wear the glasses more this year. We go through phases with it.

    If you can get your child to do anything… the patch is most important. Because unless that eye is forced to be used then the brain will continue to ignore it and eyesight will continue to diminish.

    It’s difficult to know how much improvement we have gotten with the patching just yet because Ethan is still too young for a true vision test. So… as far as numbers go… I can’t really tell you until Ethan can tell us what he can actually see. (This should be the same for you since your daughter is so young) They made a starting guess of -8.00 initially, then thought that Rx was too strong and we got our second pair of glasses of a -4.0.

    I can tell you that while patched my son sees much better than the doctors said he would… I have the sneaking suspicion that his vision may not be as bad in that eye as they diagnosed. It’s difficult to test the eyes of a squirming uncooperative toddler! Our doctor has been very happy with the progress that Ethan has made. He tracks well with his eye patched which means that his brain is not ignoring that eye.

    I have to be honest with you… this has been a difficult path but necessary one… In the end, you will know that you have done everything possible. There have been days where myself and my son have both dissolved into tears. There is no quick fix. In the words of Ethan’s doctor, “This is a marathon not a sprint.”

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  17. Thank you all so much for your responses and sharing your stories. Wednesday was our diagnosis, our daughter was ill after that so we have patched for 2 days so far and she is doing much better than we thought she would. She obviously uses the weak (right) eye as we have stood back quite a ways and pointed to parts of our face and she tells us what they are. I am hopeful. Our recommendations were to patch for 3 hrs per day, to not hinder her left eye from continuing development that is in process. I specifically asked him about corrective lenses the day she went to the OR for her sedated exam…b/f I researched and found all of you…and he said that they would not play a role. I do not want to offend him but I do want to bring up the subject of glasses. Again, thank you for this blog site as I feel an instant confort and bond. I will keep checking and will keep posting along the way. Best of luck to all of the little ones and the parents as well.

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  18. My son was also diagnosed at the age of 2. We took him to the eye doctor because his left eye was turning in slightly. The doctor here did not tell us very much except that it was “unlikely” for him to see well from that eye regardless of patching or glasses but “we will try”. I obviously got a second opinion at the IWK childrens hospital where they explained it a little better. He patched 5 hours a day and is now (at age 5) down to 2 hours a day. He wears glasses with a -7 perscription, the same perscription as when he started. He has gained vision back in the eye however it is not very much. I must say he is excellent for wearing the glasses, he does not like the patch of course but he does wear it. They also told me at the IWK that they wanted to send him for an MRI within the next few years to get a better look at what was going on. This obviously has me very worried. I just got the letter in the mail that he is scheduled for his MRI appointment next month. Just curious if any of your children had to get an MRI? I dont even know exactly what they are looking for, they just said “to get a better look”. Any information would be very much appreciated!!!!

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  19. Hi,

    I am an Optometry study so I can give some information on the condition.

    Myelinated nerve fibres affects approximately 1% of the population and the vast majority of people will have no symptoms. The condition is typically stable and very unlikely to change. Myelinated nerve fibres is associated with short-sightedness, amblyopia (lazy eye) and strabismus (also known as a squint i.e. one eye is turned in the wrong direction). In 80% of cases it only affects one eye. There is a genetic link so family members are more likely to have the condition. If the myelinated nerve fibres are not near the macula (central part of their vision) then there is no need to worry.

    The patching of the eye is for amblyopia. This is where the brain mainly using one eye. In order to make the brain use both the good eye is patch, forcing the other eye to work. This will not treat/do anyting to the myelinated nerve fibres.

    The MRI might be to look behind the myelinated nerve as they stop us from seeing behind then and therefore just a check to see the disc is healthy. However this is just a guess and i am not really sure at all.

    I hope this helps,

    David

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  20. It’s been almost two years since my original post and I wanted to provide an update on Ethan:

    Yesterday we learned that Ethan is a candidate for experimental PRK surgery to correct refractive errors in his left eye. As most of you know, Ethan is highly myopic in his left eye and his right eye is normal. He wears an eye patch every day. He is supposed to wear glasses but he is noncompliant because well… he basically only uses his right eye for vision and is virtually blind in his left eye. He also has myelinated retinal nerve fibers which spared the macula, but his fovea looks slightly “grainy”.

    After seeing several pediatric opthamologists and a retinal specialist which we were referred to by one doctor who told us it could be retinoblastoma but thankfully was not (which is some scary shit and I literally didn’t eat for a week but managed to shit every hour), it is basically a borne out conclusion that Ethan’s case is not at all typical and needs more than just the standard treatment of a patch and glasses to give him any results.

    So, we have been dealing with this issue since Ethan was 15 months old… a little over 1.5 years. During the course of this time, I got several recommendations for a Dr. Coats at Texas Children’s Hospital. After some recent doctor visits where the doctor basically wrote off Ethan’s left eye and suggested we treat it cosmetically and that we confirm that it was not retinoblastoma (which we did by seeing the retinal specialist)… we were left feeling very defeated and crushed. We got an appointment with Dr. Coats. We had to wait a month to get in to see him. It turned out to be a good decision and I kick myself for not calling a year ago. Although, he basically confirmed that Ethan’s course of treatment will probably not be enough to give him vision in his left eye, but he did give us another option that could help.

    As it turns out, Dr. Coats’ wife – Dr. Evelyn Paysse – is also a pediatric opthamologist. For the last 14 years, she has been conducting a study of PRK in young children who are severely myopic in one eye. PRK is not FDA approved in children and is considered experimental. The surgeries are done once every three months because Texas Children’s Hospital does not own the laser necessary to do the surgery and they bring it every three months to do it. The surgery has gotten good results…. as good as 20/40 in one child who had otherwise been written off. So, this is by no means a “fix” or a “cure” for Ethan’s eye. It may help him, but it might not.

    We met with Dr. Paysse yesterday. She was wonderful. Very kind and established an instant rapport with Ethan. She decided he was a good candidate for the surgery. We are now waiting for the coordinator to call us and let us know when he can have the surgery and it will most likely be February.

    I’m trying to manage my expectations about all of this. I am coming to terms with the fact that Ethan will probably never have 20/20 vision in his left and he might always be exclusively dependent on his right eye for vision. Although, I still find myself randomly close to tears when I think about why this happened with his eye or what it would mean if he lost his vision entirely. I’m beside myself that we found these doctors, but I’m also afraid to hope, too. After all said and done, we will still have to continue patching and he will probably always have to wear to glasses to protect the vision in his good eye because his left eye will never be “normal.” We will just have to see… Wink

    Anyhow, if you know anyone who finds themselves in a similar situation as us (although that is unlikely because Ethan’s case is like less than 1% of the population) or anyone whose child has vision problems… I would very much recommend Dr. Coats and Dr. Paysse.

    I will let you all know after the surgery how he progresses. Or if I get any more information regarding the surgery.

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    • Stacy, I’m the one in Houston also. I no longer have your contact information. I’m wondering if you still have my email address or if Little Four Eyes could please forward my email address to you. We were about to give up treatment. My daughter will be 9 in March and things aren’t improving. Her myelinated nerve fiber is very severe so I don’t know if there’s anything that could be done, but I would like to keep up with your son’s progress and see if you have any improvements. Best wishes!

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      • Hi Melissa,
        I looked for your email address and I found. I’d like to be able to pass updates on to you. I will send you an email so that you can email me back. I’d also like to hear how your daughter is doing. I am also curious as to what she tells you that she can see when her good eye is patched. How bad is the myelination? Does it cover the macula?

        I have mixed feelings about all this. On the one hand, I’m so excited that this might help him. But on the other hand, I’m also afraid of being disappointed if it doesn’t work for him. His vision is very bad in that left eye. I believe they think it’s about 10/400… which is really just horrible. We will still have to patch and we still have to get him to try and wear glasses (although the glasses will not need a prescription… I don’t think). We found a really cool pair at Target in Sugarland… they are called Rec Specs. They are very similar to his sunglasses…which oddly enough he will wear.

        It’s been difficult trying to adjust to the idea that his situation is so different than most kids that wear a patch and that his right eye will more than likely always be dominant and may possibly be his sole source of vision. I feel very lucky to have found Dr. Coats and Dr. Paysse. I got several recommendations for him… I just wish that I had called sooner. More than anything…. I just wish I knew why this happened in the first place.

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      • Melissa – I must have an old email address for you. I sent you an email last night but it got kicked back to me. How can I get your email address?

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    • Sooo glad to hear about your connection with these two doctors!!
      This sounds very hopeful!
      We will continue to pray for more amazing results!!!
      Will need to connect on email again as Nathan has some pictures to send Ethan. 🙂
      Tammy

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  21. i have the same condition have since child hood they told me i would be blind by the time i was 18 i am now 34 and just now dealing with the real fear of going blind. they patched my eye to as a child it did me no good..i am looking for help on this to now. please let me know if i can be of any help to you. if for no other reason then i have been there and am there.

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    • Stacy, I’m sending prayers and hugs for Ethan that his surgery goes well and he has good results. My daughter just had a complete eye exam by her opthamologist. We stopped patching last summer and switched to Atropine drops as a last resort to see if it would help. She’s been holding steady at 20/125 for the past two years. We had no improvement with the drops so we finally stopped treatment. She will be nine this month and has had no improvement with two years of patching beyond the initial improvement the first two months (she improved from 20/400 to 20/125 the first two months). Despite no patching at all and because of her age she’s been holding steady so far. The bad thing is that her prescription in both eyes has been increasing. She started out with perfect vision in the good eye, but is now wearing a -4 in the good eye and -9 in the bad eye.

      Thanks to all that have posted, especially the adults with the same condition.

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  22. Thank you everyone for all of your comments and experiences…My oldest boy Mason was diagnosed with the Myelin problem I’d say around April of this year. Mason is 6 and an amazing artist with a vision unlike any other when it comes to creativity. Not as confident on the sport tip though…he’s not clumsy, just unsure of himself. He thinks he can’t do certain things and is extremely cautious. (I honestly don’t expect him to be Mr. Football so I see his cautiousness as a relief that he won’t get hurt as easily) I love this little boy so much, I don’t ever want him to feel like he can’t do something or like an outcast. His class consist of 7 kids total and only one other boy…it’s a small Catholic school. But I do hear Mason compairing himself to the other boy, especially at gym class…Mason asked Santa for a pair of running shoes so that he can run fast like Tanner at gym. Santa surly delivered him the fastest pair of gym shoes he could find! We saw the specialist for the second time at the end of June and will see him soon this coming September. No difference was made in comparison from the first visit to the second, except the doctor gave us more insight on the situation. Mason vision is 8/800…his glasses (he picked out himself) have one lens with no prescription and the other is -9.25…quite a bit thicker than the other lens but thanks to something called polycarbonate 1.0, the eye doctor was able to thin the lens out dramatically! Even though he has such a strong prescription, the glasses don’t really help the right eye to see. He can see right in front of his eye and the rest is blurry. Mason has used his left eye his entire life…we had no knowledge that he was vision impaired in his right eye, we were just told that it was a little lazy and to patch it when he draws or watches TV. This of course did no help, and that’s when we found out about the myelin, very shocking and very sad day for us. He’s quite resiliant though and really gets by nicely with the use of just his left eye. We do as instructed and use the glasses almost all the time to protect the good one, and about 5 hours each day we patch it. Mason’s eyes are SO completely used to using just the one eye that his natural instinct is to cheat and move the patch over so he can see with his left eye…he despises the sticker patches so the elastic band patch is what we use. This patch can easily be moved to cheat and use the other eye. Does anyone have any suggestions for me? I know he just wants to be able to see and being forced to use an eye that doesn’t/can’t see is probably torturous to a little boy. My heart hurts when I think too much on this…I can only pray for hope, and in the long run all of this patching does the trick. My eyesight is poor but I get along and have since I was very young with glasses and/or contacts. My hope is to have him seeing AT LEAST with glasses or contacts. Thanks for your time!

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    • all i can say is from my experience, my right eye also has the same problem. i was told i would be blind by the time i was 18 hun i’m almost 35 now and am just the past couple years had to stop driving. my childhood was as active as anyone elses. i played sports, went water skiing (got much better after i discovered contacts lol) went rock climbing and repeling. now life is a bit interesting lol.my left eye seems to be giving up and just can’t compensate anymore. but my point is ,don’t worry he will have a normal childhood just like the rest of the kids around him he will adjust probably without even realizing it. good luck to you both

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      • wow, thanks for the quick reply! I really feel gracious to have found this website…I honestly have been trying to ignore the possibilities of a negative outcome, I just can’t bear the thought of my child not being able to see or feeling bad about himself. Your experience with it will help us, so thank you so much!

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        • glad i can help;) let me know if i can help any further. if it helps any i had a great childhood ,very normal, did everything i ever wanted. my eyesight never got in my way just something i was use to. i even have a 7 and 8 year old of my own. neither have my eye problems;)

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    • Jen – How bad is the myelination? Another question is… can Mason tell you whether the myelination disrupts his vision at all? I’m just curious what Ethan sees when he is patched…. whether there are just blank spots in his vision because of the myelin.

      Questions:
      1. Where are you located? We have an amazing doctor at Texas Children’s here in Houston. Her name is Dr. Paysse. We were able to have experimental PRK done with Ethan this last March. If you are close, it might be worth a trip to see her. Mason might be a little old for the surgery, but I did see other kids around that age having it done when Ethan got his. We were lucky because we have known about Ethan’s eye problems since he was 15 months old. Patching is difficult and they need to wear the glasses with the patch. Ethan would do neither…. which is how we ended up with the surgery. Since the surgery, he tolerates the patch really well. It will take awhile to know whether it will actually help because it takes the brain awhile to build those visual pathways.

      2. Has anyone told you whether the myelination is covering the fovea or the macula? This is worth finding out because if that is the case then unfortunately you will probably not get much vision out of the affected eye.

      3. The other issue is Mason’s age. The brain is pretty plastic when kids are very young, but most of the visual pathways from the brain to the eye are pretty much done between the ages of 6-9. I don’t want to discourage you because you should try, but just keep it in mind and don’t kill yourself trying to get vision from that eye. It may be that the eye just didn’t form right and it may never get good vision…. it’s a sobering thought considering all the work it takes to patch and glasses, but I know for me… even though Ethan may never get vision out of that eye… I wanted to be able to say that we did everything and I’ve come to a place of peace knowing that we’ve done and exhausted avenue and now it’s our of hands.

      That said… Ethan will probably never play sports at least not ones that involve striking a ball with an object. So, I guess that leaves us things like soccer or swimming. Ethan is completely dependent on his right eye, but to see him move about… you would never know. His vision in his good eye is 20/20 or better, but the vision in his left eye was like 20/800 or something like that. The prescription was like -8.25 or something. It was battle to get him to wear the patch every day for even 15 minutes no matter how much I tried to entertain him or distract him. Every day it was tears and yelling and me dissolving. I get it…. but you have to do it.

      If it makes you feel any better, I am left eye dominant. I had a lazy eye that was discovered when I was about 6. I did not patch, but wore bifocals until I was about 14. I have actually pretty good vision in my right eye, but they don’t work very well together… or at least that eye can get tired and will fall in and I don’t have great stereoscopic vision so I have convergence issues. But generally speaking, I use my left eye for most things… even though I have vision in my right. I’m not great at sports. I have a difficult time with watching/seeing 3D movies. Also, since Ethan’s diagnosis… I have met a ton of people who are blind in one eye from young kids to people my age to older adults… even people I have known for years and I would never have known. Everyone says… “it really hasn’t affected my life that much. I haven’t known any different.”

      So take heart. As a parent, it’s so difficult for us to watch our children have something with what we perceive to be handicap… but they are creative and inventive little people and they will always find a way to work around it and be better for it.

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      • Thank you Stacy for your reply! We are located in Northeast Ohio, unfortunately not close to you at all. I want to be able to go to Mason’s next appointment with a list of questions…both times we’ve gone I left feeling overwhelmed and uninformed. This web page has actually answered some of my questions. And I’ll be curious to see what the next course of action will be. Just the day before yesterday during “patch time” I had my husband sit across the room and asked Mason all of the things his daddy was doing…he could only make out my husband’s legs and a blurry blog of black (my hub was wearing a black tshirt and black shorts). So as far as images, Mason can’t see much. At this same instance, I was sitting right beside Mason and held up two fingers, then four and his instinct told him to grab my hand (which he had trouble finding) and he used his own hand to tell me how many fingers he felt. My assumption at this point is that the patching is NOT working in Mason’s case. As I’ve stated before, he is quite the cheater when it comes to the patch. So, I will just pray that this improves with time or the doctor has another suggestion. Mason is a very responsible, bright child and I think I will see what the doctor thinks about a contact with a higher prescription. Does anyone know a ballpark timeframe on how long it takes for the brain to recognize that the “special eye” needs to be used?

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        • with me my parents didn’t even notice the problem till i was in third grade because i naturally compensated for it but the way you describe him seeing is the way i see out of my bad eye to

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        • Thanks to everyone, I’m no longer as affraid for Mason as I was before. If this treatment helps, that will be so great, if there is nothing that can be done then I’ll hope for as much normalcy as God is able to give him.

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  23. Jen :
    Does anyone know a ballpark timeframe on how long it takes for the brain to recognize that the “special eye” needs to be used?

    There’s really no way to determine a time frame. I will tell you what one doctor told us “You’re in marathon, not a sprint.” It takes awhile. We have been at for nearly 2.5 years. We’ve seen the most progress since Ethan’s surgery, but because of Ethan’s age he has more time on his side than Mason. You are at a very critical period because at Mason’s age his vision is becoming more static and your window is much narrower. Patching AND wearing glasses will be vitally important. Again…. I stress to find out where the myelination is located on the retina and whether it covers the macula and fovea because that will be a major factor in the affected eye’s potential.

    If you have any other questions about our process and Ethan’s diagnosis, please don’t hesitate to contact me and I can share with you what I’ve learned. It’s been a struggle because that condition is so rare and doctors that don’t see it too often do not have much experience with it and they will generally not admit and encourage you to essentially write off the “bad” eye. The myelination is VERY rare… and it’s complication beyond just the amblyopia… you have more to deal with.

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    • I’ll return to the site with any updates from his doctor…please do the same. The more info I can get, the better. Good luck to you all!

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  24. Stacy~
    I cannot tell you how long I have searched for a mom such as yourself! 😀 I am looking specifically for a mom that has had a child with PRK surgery~ and not only did I find a mom with a child with PRK– but VERY similar stories!!! Not that I am happy for your circumstance, but that your story is similar to ours. My 5yo was dx at 8months. Colin has had glasses and been patching since then- had muscle surgery already and very successful. He also has myelinated retinal nerve fibers in one eye, amblyopia and myopia. a -10 and a +2 (ISH) we have improved his vision dramatically with our regimen and are now discussing PRK. I am waiting to see how surgery goes on the 3 children in our clinic before scheduling ours~ but expect to be having surgery within the next 6 months.

    My fears are:
    the pain ~ how painful was it for Ethan?
    the success ~ How long before you see improvements? Did you have a ‘valley’ before the success?
    How was recovery? and how long?

    My largest concerns are that my decision to do this would make the vision he does have worse. :*(

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    • Hi Jolene –

      So far, I would say the surgery was a success. He started off with 20/400 vision in his left eye (He has 20/20 in his right eye) when he had the surgery in March of 2012 and at 6 months post-surgery he is now at 20/80. Keep in mind that number is the corrected vision. We are continuing to patch 2 – 4 hours a day and will need to continue to patch probably until he is 7 years old or so when his vision will finally be static.

      The surgery was definitely worth it. We could not get Ethan to wear glasses. It was a struggle to just get him to wear the patch. We decided on the surgery because basically his vision could not get any worse than it was and it was not getting better with just the patching. He was diagnosed at 15 months. We spent two years patching without seeing much in the way of results.

      I was recommended by several people to see Dr. Coats at Texas Children’s Hospital. Our appointment with him was in October of 2011. He was extremely knowledgable about Ethan’s condition. His wife, Dr. Paysse, has been doing a study on kids just like him for the past 15 years approximately. He determined that Ethan was a good candidate because the myelination was not covering the fovea. This was a major criteria to be part of the study. If the myelination is covering the fovea then you probably will not get much in the way of sharp vision out of the eye. Ethan has quite a bit of myelination on his retina…. so this was good news for him. The other part was that he was completely non-compliant about wearing the glasses. After we met with Dr. Paysse, we were scheduled for our surgery. I cannot say enough good things about her and Dr. Coats. I would recommend her in a heartbeat.

      Here are some things that I can tell you about the surgery. There are no guaranteed results. She has had some kids who have had absolutely no change in vision and some kids who have gotten as good as 20/40. But she has never had any whose vision worsened. The major problem she has seen is when the parents do not stay on top of the steroid drops for as long as recommended and it can lead to scarring/clouding of the cornea (which will mean another surgery to correct that)… but everyone who follows the regimen has never had this happen.

      They do go under anesthesia for the surgery. The actual surgery time is fairly quick…. maybe an hour from the time they take him back to the point that he was in recovery room. Every person that touched our child from the doctor, to the anesthesiologist, to the nurse talked to us and fully explained the procedure and recovery before they took him back… so much that by the time they took him back… I was just ready for them to take him. The did a wonderful job. When they wake up from the anesthesia… all kids react differently…. some are just groggy, some wake up screaming, some cry, some take longer than others… but we were prepared for the variation of what could happen and they are fully monitored the entire time.

      When we left he had a contact lens in his eye to protect his cornea. He also had a plastic shield taped over his eye to protect it. They cannot rub or touch their eye at all for at least a week to two weeks post surgery. We had to fit Ethan with arm braces. Your son is older so that would not be necessary obviously as he could understand the situation. He was able to take I believe Ibuprofen or Tylenol for the pain and they gave us codeine…. which really used only at nighttime and never even used completely. My cousin who had PRK as an adult said it hurts a lot. My understanding is that it hurts a lot more than Lasik. Ethan did not really complain about the pain, but he has high tolerance for pain. I’ve been told by the doctor that most kids tolerate it very well. I can attest to this.

      He had steroid drops that we had to do about 4 times a day for 6 months. My husband was a guinea pig and we did a drop in his eye… he said it burned a little and left a funny taste in his mouth. Ethan never liked it. It was a battle, but we did it. We also had to give him a ton of Vitamin C (which we are still doing) to also prevent scarring. At his last appointment in December, his corneas were absolutely clear.

      It took a little while to see improvement in his vision. The first few visits post-surgery we saw no change at all. I think it was about 4 months out that we first saw any jump in his vision. Our understanding is that it can take time because the brain was not using the eye at all. There is also some question as to what the true potential is of that eye…. it may just not be capable of seeing very well. Again, no guarantees. We will just continue to patch and what we get is what we get. But overall… we’ve come a long way from 20/400. I would love to see him get 20/40 in that eye, but I really can’t complain about 20/80…. considering the fact that EVERY doctor BEFORE Dr. Paysse & Dr. Coats told us to give up and just treat it cosmetically (i.e. straighten the eye).

      Feel free to contact me if you have any other questions. Dr. Paysse was a godsend for us. Without this surgery, our son would have mostly likely ended up completely blind in his affected eye.

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  25. Stacy~ This puts my heart at ease! I have been waffling because I didn’t want the possibility to lose the vision he does have. So, to hear of others that have had great successes or no regression makes me sit a bit more at ease! The dr. did tell me about the drops and said that was a MUST and if I didn’t stay on top of it there would be scarring and clouding.

    We have made great strides in our vision but it pains me to see him reading they eye charts!

    Out of curiosity~ do you know how many physicians there are that are performing this surgery (on children)?

    THANK YOU!

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    • Jolene- I don’t know how many doctors are performing the surgery on children. My guess is that because it’s not FDA approved for anyone under the age of 18…. so, if the doctor is doing it then it will be under a study. None of the pediatric opthamologists that we saw told us that laser eye surgery was not an option for anyone under 18 and no one ever directed us to or mentioned Dr. Paysse. Prior to meeting Dr. Paysee, I had read there were PRK studies for children being done in Europe, but we basically written off. It was pure luck that as a last resort that I made the appointment with Dr. Coats that he made it known to us about his wife’s study. We jumped on the chance immediately. Dr. Paysse does the surgeries in batches every quarter because they have to bring the laser in from somewhere else… it’s some super sensitive laser. We also had to commit to the study for a certain number of years. So, the day we went in for the surgery there lots of other kids having it done, too… I do know that some people travel to Texas Children’s Hospital to see her. So, my answer is I don’t know of any other doctor’s doing the surgery. You may be able to contact her office and get some answers. Or check with the pediatric opthamology department at the closest children’s research hospital.

      The other thing I want you to know is that if you are going to have it done… don’t wait because your son is 5 he is reaching that critical age where vision becomes static and reduces the likelihood of results. So, you would need to find a doctor, get him approved as a candidate and then get his surgery scheduled. If you already know a doctor who thinks he’s a good candidate then get him scheduled as soon as possible. The sooner the better.

      We went in knowing that there was a possibility that we might not see any improvement at all, but that if we didn’t do it then we knew it definitely wasn’t going to get any better. So, any results was going to be a win… even if it was just one line on the chart. I wanted to know and Ethan to know that we gave his eye every chance possible. We’ve now done everything that can possibly done. Personally, I’ve found a lot of peace in that.

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      • Stacy A~

        I don’t know if you remember this conversation~ but we JUST had surgery on Monday!!! We had a follow-up visit today and his vision WITHOUT correction is the same as it was prior to surgery WITH correction! We get a new script in a month and he is doing great. It has been a long wait for insurance approval, but the deed is done and now we wait. I didn’t expect improvement, but sure hoped for it.

        Thank you for your input!!

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    • I also want to add that we are in Houston, TX if that helps you location wise at all. Dr. Evelyn Paysse is at Texas Children’s Hospital in the Houston Medical Center.

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    • One more post so that you can understand the timeline, we first met with Dr. Coats in October 2011. He looked at Ethan’s eyes and determined him to be a good candidate. We then saw Dr. Paysse in November 2011… who also examined his eyes confirmed his to be a candidate and explained the process of being part of the study and the surgery itself. She was just getting ready to do a batch of surgeries in a couple of weeks, but unfortunately they were completely full and we were scheduled for the next quarter. His surgery was scheduled for March 2012. We had an appointment about 2 weeks before just to prep us for what would happen and to meet with the surgical coordinator and the financial coordinator. Our insurance ended up covering a portion of the surgery which was really nice and the financial coordinator took care of the insurance portion of it completely. That was really nice not to have to fight with the insurance and let someone experienced deal with what would be covered.

      Anyhow…. that’s all I can think of for now. If anything else comes to mind then I will try to remember to post it here for you.

      Here is a link on Dr. Paysse: http://www.texaschildrens.org/Locate/Doctors/Paysse,-Evelyn/

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  26. Stacy~
    Colin is considered a good candidate~ I have known this surgery was coming and have been waiting to gain as much ground from patching as we could and once it stabilized and held steady, we would talk about this surgery. In Oct of last year, the dr. said Colin is ready for the surgery and it has been the lack of another “parent”, the rarity of it all and Colin’s condition that has kept me from giving the go ahead. I just discussed this with the surgeon again and at our next appointment in 3 months we will get our approval put in and get the surgery done as soon as we are approved. I wanted to hear of the results for the other 3 children that are scheduled for surgery in March. I know we have a window and I don’t want to miss it– I have been uneasy because it is an unapproved surgery for children and Colin seems to be an anomaly around here. We live in the Kansas City area and are currently seeing Dr. Erin Stahl at Children’s Mercy Hospital.

    The dr did say the surgery is only a few minutes and that it is the recovery that takes the most time. She also said it is the drops that slow the healing that are what is most important to his progress. If I can put a contact in his eye~ drops will be no problem! 😀 Colin has always been very good with patching and glasses and as a toddler, he requested them because he knew he couldn’t see without them.

    I will ask our dr if she is doing a study on this. If not, it could be helpful for someone to add Colin to their data. More info can’t hurt right?

    Thank you for all your help and info!

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  27. Dear Stacy.

    I’m in the UK and here they only do an eye test when a child is in school at 5!!!! but by then we had just worked out there was a problem as my son asked why one eye was fuzzy

    My child has the same condition and we are patching and using glasses.

    My son keeps loosing his glasses because he doesn’t know if they are on or off as he has good vision in the other eye. We are on our 3rd pair in as many months.

    does anyone have any ideas? -a chord/elastic was seen to be a choking risk

    Patching has worked well but still very fuzzy in bad eye.

    Whats annoying is that we had initially checked his eyesight ourselves -can you see that ship in the distance?etc but of course didn’t think to cover one eye so there seemed no problem. there was now eye wandering . . Had we known of the existence of this condition we would have checked earlier and the prognosis would have been better as well as not having to patch so long for a child at school. There was a time in the UK where health visitors did checks at 3 but cuts have got rid of these and we don’t see pediatricians here unless there’s a problem so routine checks are not done.

    I now try to tell all friends who have kids /look after kids to cover one eye to check for this although it is rare ( 1% pop)

    good luck – at least you have time on your side !

    .

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  28. Hello jude, did you try “miraflex” glasses? My daughter is wearing them for a year now, since she was 5 month old. Never lost them and although, as you can imagine, those glasses went through a lot and they are still in a good condition.

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    • My son is 16 years old today and he was diagnosed when he was in 2nd grade! I had no idea because he cheated his way through eye exams until one day one doctor in Neurology decided to check his eye doing an attention deficit disorder… We tried patching but it was extremely difficult because he cannot see through his eye because of an 90% Myelination. So it was very frustrating when it came time to patch… Try walking around seeing just light and blurry objects for 6-8 hours… So now my question to all of you especially the older ones that have lived through this….my son’s fascination are cars and fast cars; will he be able to drive and be safe in a car? Please help me… Any doctors opinions please comment… Best wishes for everyone! Ana 😉

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      • Ana – he should be able to drive and do everything anyone else can do provided he has good vision in one eye. He won’t have great depth perception – so he prob struggles with things like baseball or any sport that would require him to connect with a moving object or watching 3d movies. He’s prob also excluded from being a commercial airline pilot too. But other than he should be fine.

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        • Thank you Stacy!!! The relief you just brought to my heart is beyond any words that i can say. Thank you so much for replying to my message. I have been so afraid to even take him back to the eye doctor just wondering if they will tell him he won’t be able to drive. As a parent we want the best for our kids and believe me when I say this one is beyond special. He deserves a normal great life and wants to one day become a Dentist!

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      • Ana – I can tell you from my own experience (I don’t see with my left eye) that driving is not a problem at all. Actually for me the main worry is not to injure my good eye, but beside this and not being able to see 3d movies I can do everything like others.

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        • Thank you Julia, this really helps! I guess I was just afraid to put him behind the wheel and him not being able to see a car coming straight at him and possibly injure him. His passion is cars and fast ones. But hearing people that are living with this condition is really helpful and a huge relief for me. Thank you so very much!!!

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  29. Hi Stacy, I’m Kathleen from the Uk and my son is suffering from massive mylinated nerve fibres too. I have just had a first appointment with a consultant who told me what seems to be exactly what you were told on your first appointment. He said my son Lucas has massive mylinated nerve fibres, high myopia and his eye has starting turning inwards. He said that glasses and contact lenses would not work and that I could try patching, but didnt really seem to confident that anything would work. We just feel that my sons sight has been written off already.

    Lucas’ sight in his right is is good at +1 but his sight in his left eye is -7. Which i believe is what Ethans sight was. We are going to ask for a second opinion, but are interested in doing anything to try and improve Lucas’ chances. Possibly even asking Dr Paysse for help. From what you’ve said Ethan’s sight has improved greatly because of the surgery.

    It’s only because of this forum that I’ve found that something could possibly be done for Lucas. We’ve tried patching but his sight seems really bad. He’s getting upset because he can’t see and it’s hard to continue especially when the consultant didn’t seem to think anything could be done. We weren’t told if the mylinated nerve fibres are covering the fovea so we’ll have to find out. We have follow up appointment in 10 days.

    Also, if anyone from the UK could recommend a British doctor please let me know.

    Thanks for helping.

    Like

    • Hi Kathleen, I’m really sorry to hear about your son. I know how frightening and helpless it feels. How old is he? First thing, find out if the myelination is covering the fovea because if it is then unfortunately he probably won’t be a candidate for PRK because it probably won’t help. Ethan was 15 months when he was first diagnosed and he was 2.5 by the time we met with Dr. Paysse and became a participant in her study. His vision is 20/20 in his good eye and was about 20/800 in his affected eye. The earlier you can get treatment the better. We went into the surgery knowing that it might help or it also might not help but we understood that it definitely wasn’t going to get better if we didn’t do anything. His vision is currently now about 20/80 in the eye that had surgery. It was the best thing we’ve ever done. I don’t believe he will have great vision in that eye but considering he was legally blind in that eye… It’s not perfect but we are happy. We are still having to patch about 3 hours a day and maybe we’ll get more vision out that eye. I think the best results she’s gotten so far is 20/40 which is two lines better than can see on the chart… all in all we did pretty well. I can’t say enough good things about Dr. Paysse at Texas Childrens Hospital.

      That all said… Ethan doesn’t even notice that he has a dominant eye. He’s in karate, swimming and gymnastics. You wouldn’t even know he has bad vision in that eye unless we told someone (he also had the surgery to straighten his eye about 6 months ago – so now you really can’t tell). The worst case – he won’t have stereoscopic vision – which means 3D movies won’t really do much for him, playing a sport that requires contact with a small ball like baseball or golf will be difficult. He will also have to protect the vision in that good eye. So, once he starts school in the fall I will probably get him a set of glasses with plain, shatter proof glasses to wear when he’s playing contact sports or playing on the playground.

      If I can answer any more questions or help in anyway, please feel free to contact me. When Ethan was first diagnosed I was dying to have someone who could relate and there are so few people this site was a real godsend and I’ve tried to pay it forward with the information that I have found to help some one else even if it’s only one person.

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  30. Thanks Stacy, I’ll take your advice on board about plain glasses for school. Lucas is 4 in August, so the sooner we get things moving the better. Like you say the children don’t even know any different because they’ve always had it. My little one is sporty and I want to help him as much as I possibly can. I don’t want to hold him back at all.

    Thanks for your encouragement, it’s good to speak to someone who has gone through the same experience as you. It gives you hope that something can be done. If we get nowhere on Tuesday with the follow up appointment, I will be contacting Dr Paysee to see if she would see Lucas. The Fovea is unaffected from what the Dr told me so fingers crossed… I’ll keep you updated.

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  31. My 4 yr old just got diagnosed with same thing but his left eye is -16? Doctor was preparing us for worse but I would like a second opinion because we felt rushed and the Dr didn’t take too much time helping. Anyone know a good Dr in Illinois?

    Thanks!

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  32. Hi Stacy, I have daughter who is 4 years old, she was diagnosed with myelinated retinal nerve fibers in her left eye with a myopia -12and vision @ 20/400. She was first diagnosed when she was 7months old. The Dr. told us at that time she may out grow it. He said to look it up if I didn’t know what it was. Also to go back to the optomitrist in 6months. We then asked to get another referral to see someone else. We waited almost 9months for the next one. They kept telling us only another 2-3weeks, which ended up 9 months. We live in a small town with no paediatric optomoligists we need to travel at least 9 hours for the closest one. Finally when we saw him after waiting he spent only 5 minutes with us and said there is nothing that can be done. We kept trying to get more info. But said at that time her myopia was a -9 and had myelinated retinal nerve fibers, we could try to patch but due to her not cooperating ( she was only 16months at that time) he felt it would be a lost battle and she would anyways loose her vision in that eye when she gets older. We waited so long for that appt. to receive THAT news in THAT manner. So we went back to her optomitrist to get more info on how to patch, how long, where do we buy it, and get her glasses. Finding her little frames was a huge struggle finally found a pair and started to patch and wear glasses. It was super hard. A constant battle. She also has a twin sister and a older brother. It’s so hard to balance all of it. We heard there was a paediatric optomitrist only 5 hours away so we got another referral for him. He was great with explaining it to me but his diagnoses was a -12 in that eye instead of a -9. He felt it probably always was a -12. He said to accept that her brain would eventually turn the eye off and not worth putting her through patching as well, to not even fill her perscription in her frames because cosmeticly it looked funny. So this was not what I wanted to hear. I did tell him I will do what I can, he said he hopes I prove him wrong. Back to the optomitrist to change the perscription and to find someone else. We were referred to someone 9 hours away, this time I checked his reviews and they were great. When we saw him she was almost 4years old. He was very nice, explained everything in depth and did not rush us. Unfortunately he said because of her severe myopia he doesn’t feel she will get better. He said to patch if I wanted 6-8hours daily and see her optomitrist to see if her vision is getting better. He also said I need to stand back and to see what was more important, taking care of the eye or Jayce. Jayce has developed major anxieties that are affecting daily life. She sees a physiotherapist because of her depth perception and balance. She is behind in her gross motor skills. She is starting to see a occupational therapist for her anxiety and sensories are very unbalanced and will need to see a speech therapist soon. She is a kind mannered loving little girl with a lot of spunk. We make sure all the therapies are fun and willing for her to do. I hate to see her struggle so much in so many different ways. It all comes down to her vision is affecting her life in so many ways. We had our optomitrist talk to a friend who does LASIK on adults about Jayce. He took her file and reviewed it with his former surgeons and they said it would not be worth the surgery for how much sight would be gained. Anyways no one in BC Canada would do the sugery. So we are now looking to see a vision therapist who is 5 hours away. Just to be able to keep what vision she has until we can find something else. Now she is 4years and a month old. We patch only 1-2hours a day with brain stimulated games. I can’t get to much more out of her or her sensories are out of control. She goes through so much a day I just wish I can give her some better vision. Her twin sister at Christmas time wanted to ask Santa if he can give Jayce to see better. If you know any Dr.’s or anything else that I have missed please write back, I’m feeling that all the doors are being shut. I’m not ready to give up. Thank you for you post Barb.

    Like

    • Hi Barb – I can empathize how you feel. First thing, find out if the myelination is covering your daughter’s fovea. If it is then unfortunately there is probably not much to be done. If not… then look for a doctor who can do PRK. It’s still experimental in the United States. I don’t know what your financial situation is but Dr. Paysse is doing a study for PRK at Texas Children’s Hospital in Houston, Texas. Your child may be a candidate. There are no guarantees when you become part of the study that any vision will be gained, but if you don’t do the surgery then its definitely not going to get any better. We decided to take our chances. So far, Ethan has gotten to 20/80 in the affected eye. It’s not perfect but it’s a lot better than 20/400. I think the best results she has gotten is 20/40 out of a patient – pretty darn good. If you are interested in doing the PRK then act quickly because your daughter is reaching a critical age when vision becomes static. All that said… if your child has at least good vision in one eye then it will all be alright. She will still be able to do everything everyone else does – she might not be great at some sports but she’ll be fine. My son gets along just fine even though he is mostly dependent on the vision in his “good eye”. I would make one recommendation – get a pair of good glasses with shatterproof lenses (no prescription) to protect the vision in the good eye for when she starts school. If I can help in any other way please let me know.

      Like

  33. Hi Stacy, thank you for your reply. It is comforting to hear your son is doing so well. How long did you have to wait for the appointment to see Dr.Paysse? Did your son have any side affects, like dry eyes? The doctors said they don’t think the fovea is covered so I’m hoping there is still some hope. Did your son ever go to a vision therapist? I will look into Dr.Paysse, thank you for the suggestion. My daughter wears glasses with out any problems thankfully, but her vision through the perscribed lens is 20/400. Sorry for all the questions. Thank you for all your time and help, Barb

    Like

    • Hi Barb – We first saw Dr. Paysse’s husband, Dr. Coats as a last ditch effort because all the other doctors told us to throw in the towel. He was amazing and then referred us to his wife. I want to say we waited about 6 weeks to see Dr. Coats and then another 2 or so to see Dr. Paysse. You may be able to see her directly – it can’t hurt to call and ask about her PRK study. I would let them know where you are located because it was a series of appointments before the actual surgery and she would have to qualify as a candidate. There’s follow up appointments too. Or maybe they know of someone geographically closer that is also doing the surgeries. It’s a special laser that they bring in from somewhere else to use and she does the surgeries in batches each quarter. I know that there were people who traveled to Houston for the surgery. I want to stress that the surgery will only correct refractive errors in the eye – it does nothing for the myelination and there are no guaranteed results. We still have to patch about 3 hours a day, but no glasses. Basically, the surgery gives the eye the best possible chance and then it’s up to the brain to learn to use the eye. It may also be that the just never formed properly, too and it may not be able to see at a “normal” level.

      We have seen pediatric opthamalogists and a retinal specialist for our son. He does not have dry eyes and he also had the surgery to straighten his eye last year. Ask as many questions as you need… 🙂

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  34. Hi Stacy, I was wondering before the sugery did your son see any better with glasses a posed to without? I will be contacting Dr. Paysse’s this week. One doctor felt her high myopia is due to the myelination, but I don’t understand if it is not covering the fovea the myelination should have nothing to do with high myopia. The sugery to straighten his eye, did it help his vision as well? Jayce’s moves off a little, the doctor told us the sugery would not help her sight it would be cosmetic. We are travelling to see a vision therapist end of the month to see if we can improve any depth perception with different type of exercises as well as different exercises with patching. Well, thank you again for sharing your experiences with us it is very helpful and knowing she isn’t the only one that has this condition. Thank you so much again, Barb.

    Like

    • Barb – I agree with Jolene. The muscle surgery might help with depth perception too. It will not fix any refractive errors in the eye. There are people with myelination but not severe myopia but it is associated with myelination. My son was completely non-compliant with the glasses. We started glasses and patch at 15 months. It was a fight every day to wear the patch… usually reducing both of us to tears. His vision in that eye was 20/800 – at least that’s what they tell me. I have no idea what he could see at that point because he didn’t have the language skills to tell me. I know the surgery improved his vision because he went from not being able to see the first line of the vision chart to 20/80 within 6 months of the surgery. He’s kind of stabilized at that point… it might get better than that or it might not. We will just keep patching and hope for the best. I do believe that the eye muscle surgery or strabismus surgery has helped as well… not to mention that since he’s starting kindergarten this year there is a psychological component to it as well – we didn’t want anyone picking on him, but it is not purely cosmetic.

      Here’s what I can tell you. Don’t give up. We had countless doctors tell us we were wasting our time and to even give up patching. It took us 2 years to find the right person. I asked and asked about PRK studies that I had read about and all the other doctors blew us off and said it wouldn’t work. Well… It did. Here’s what I can tell you: We went forward with the surgery because Ethan’s case – it couldn’t get much worse. I figured that we had nothing to lose but some money – worst case. At best, he could get some vision out of the eye. He now has a functional eye. It’s not perfect and it probably will never have perfect vision, but it’s a lot more than what any other doctor offered us.

      Keep being pushy. Keep asking. If you need more info about the procedure and the process we had to go through then I’m happy to provide any more info or details that I can. Jolene (who just posted) would be a good resource too because her son also had the surgery.

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  35. Barb~
    My son went from a -10 to no script in that eye. We had PRK done in Sept 2013 with Dr. Erin Stahl at Children’s Mercy Hospital in Kansas City, MO. A bit closer to you than TX! The muscle surgery is to straighten the eye and it is NOT just cosmetic! You patch and patch and patch until you can gain no more ground and then do the muscle surgery to straighten the eye in the hopes that they will work together and the brain will recognize them as a unit and not single entities.

    My advice is to get another doctor! Find one that knows what they are talking about– Keep trying– you will find one that knows something about your daughter’s condition.

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  36. Hi Jolene, thank you for you reply. That’s amazing what you and your son accomplished. I hope we will get great results too. I’m definitely looking for a doctor that can give us some hope. I will look into Dr.Stahl as well as Dr.Paysse. Did the PRK help reduce the -10 alone or did the muscle surgery help with it as well? How many hours did he patch a day?
    Thank you for your encouragement.

    Like

    • The PRK is what took the -10 away. It changed the way the light reflects in his eye so he can see better. The patching is totally unrelated in the fact that it is only for the muscles to “align” or learn their “proper” position and be strong enough to stay there. The mylenation will never be corrected– but changing the way the light reflects helps him see better. I was very apprehensive about the surgery (thoughts posted above just do a search on Jolene) but chose to do it because the WORST case scenario — he would endure pain for nothing– but I had to try.

      We started off patching for 6 hours and increased to 8 and the last year+ have been down to 4hrs. He was monitored very closely to make sure the good eye wasn’t shutting down. There was a period of time where he only got 1 hour free of patching and then had to wear the patch all other waking hours (even while swimming!! We used his rx goggles to keep it on). It was grueling and miserable! I hated doing it– but my thinking was that I would rather him endure these miserable days now for his vision in the future. I was thinking long term– not immediate gratification.

      Now- we are nearing the end of our journey and see little progress— which is when you know your hard work has paid off! We have gained all of the vision we could and will gain no more. We saw the eye doctor last week and we have 2 months free of patches!!! We are taking this “vacation” to see if our eye muscles have gained all they can and can maintain the vision he has now.

      As Stacy said~ keep fighting for your daughter! SOME doctors have the knowledge you need/want and you might have to weed out the ones that don’t have the know-how or will do find a solution for your daughter– but you are the one with the love and determination for your daughter! You are her best hope for her future vision and you make the best choices you can~ so don’t give up. There are so many crappy doctors and mediocre doctors and fewer wonderful doctors that live to help these children– find them and do what you can.

      You can do it! Keep us updated!

      Like

      • I’m so uplifted to hear about your journey. You have done a remarkable job. You and your son endured so much. You are absolutely right ‘think long term not immediate gratification’. We always think that to get through challenging times which happens a lot. We are just hoping to find a doctor who can see all the potential there is for her.
        I’ll keep you posted. Thank you again for you support and modivating words.

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  37. Stacy~thank you for all your explanations. This will be an exciting year for your son starting kindergarten. The best gift of all..vision…that you fought for.

    Thank you for your support and all the information. I’m hoping soon we will be on our way to help her vision get better.

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  38. My son had the same diagnosis at 24 months. We are just now noticing his eye start to turn in 6 months after patching and glasses. I think we have been too lenient with the patching lately. I’m so worried his left eye will always look a little off. I am wondering how your son’s eye is doing now? Any feedback would be appreciated. Thanks!

    Like

    • I am going to ASSUME that your son is not quite 3? If so— it isn’t too late to keep trying. Just start where you are and do the best you can now. Once the eye becomes stable they will prob do a muscle surgery to straighten the eye. Depending on what is wrong of course– that can be corrected.

      I will chime in with my son’s progress– he is doing WONDERFUL! 😀 Very little eye turn and he has a 0 vision in his “bad” eye! We are on a 2 month trial of no patching to see if we can maintain his current vision script and we will go from there. He is excited about this progress! He has been asking the doctor for years when he will be able to stop patching. I am hoping, for him, that this will be it!

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  39. Hi Stacy,

    I know this post is from a while back, but I have never met or been able to have contact anyone else who has had experience with something (anything really) that is similar to my condition because it is so rare. When I was 7 seven years old, it was discovered that I have excess mylenation on the optic nerve in my left eye. My eye doctor at Texas Children’s Hospital in Houston had me wear a patch while in my home for several months, followed by wearing hard contacts by age 8 ( back then I wore -10.5) My left eye also turned out a bit and caused me to have double vision until I had corrective surgery at age 21.

    If it eases your mind any, I am now a 22 year old college graduate living a perfectly healthy life! My vision I my left eye will never be 20/20, but it has never slowed me down.

    If you would like to contact me for more information, or support please feel free to email me at the address listed above.

    Like

  40. Hi Stacy,

    I just came across this blog while doing some research. My daughter, now 14 months, was diagnosed at 8 months with mylenated nerve fibers in her right eye, and prescribed -12 contacts…very near sighted as well. We are patching and using a contact on her right eye, no easy task to say the least. I’m curious, what new procedures you may know of today and if there is anything I may be missing? We’re in the Seattle area and being seen at Children’s hospital, but I’m willing to travel out of state to have her seen if it makes sense. They have given us very little hope of her ever having much vision in her right eye, but I am doing all I can with the contact and patching for three hours a day…would love any feedback. I also had a doctor say it was the worst case of mylenation he’d ever seen in anyone…not very encouraging 😦

    Thanks,
    Shannon

    Like

  41. Hi Stacy,

    My daughter was diagnosed at 8 months with Mylenated nerve fibers and a prescrption of -12 :(. We’ve been patching three hours and wearing a contact daily in the right eye. Some days are worse than others in terms of the turning outwards (which is why we had her seen to begin with, assumed a lazy eye)….wondering at what point we can have the muscle surgery? Also, did you notice some days his eye looking like it could see better than others? It’s so tough because she can’t tell us what she sees at this age. She HATES patching, does get around ok and plays fine with it, but very obviously can’t see very far at all. I had one doc say she had the worst case he’d ever seen, not very encouraging. We are being seen at Seattle Children’s Hospital, but if anyone has an expert in the area of this and is out of state, we are willing to travel to have her checked out again. Thanks for any feedback.

    Best,
    Shannon
    Please email back to shannonbrovold@gmail.com

    Like

  42. The mylenation is a tough one, as they really can’t do anything about the mylenation itself. However, we patched aggressively so we could regain/maintain as much vision as possible in that eye. We patched up to 8 hours a day and we gained a lot of ground with his patching. Once your daughter’s vision becomes stable– they will consider the muscle surgery. If you can gain as much ground as possible with the patching– you have a better chance of getting as much sight out of that eye as possible.

    I would also look for a doc that is familiar with her condition and one you are comfortable with.

    Like

  43. Hi there,
    I have enjoyed reading through all of the comments and feedback here. 5 years ago, my partner had a retinal detachment at age 26. Her surgeon told her it was due to age. HA!

    I am a nutritionist and have done masters work in Chinese medicine, so I knew that age was hardly the cause of her detachment. I became very fascinated with the subject and dove head first into researching about this. I discovered several crucial dietary links to retinal detachment-including birth related issues with the retina and how it is strongly linked to specific fatty acid deficiencies in one’s diet.

    If you have a child with a retina condition, solid nutrition practices can really support and in my experience help many to overcome their condition. But nutrition must be at the heart of the matter. For those of you who may be interested in exploring more of the nutritional piece, I now offer my work on the subject here: https://www.yourholisticnutritioneducation.com/primal-nutrition-for-retinal-detachment/
    Know that there are self-care solutions that may be extremely helpful. To this day, my partner has not had another detachment, she has not developed cataracts and her vision actually continues to improve (yes, this completely blows her doctor away, he has no idea how to comment on it)! Nutrition is much more powerful than we credit it for. I mean just look at the disease and disorder crisis is has us in now. That too can shift!

    Like

  44. Hi, thought i would add our story to the list, as it may give comfort to some for their children in the future. We noticed a turn in our sons left eye at around 18 months, we where seen by our district nurse who advised we saw a optician, who advised we saw our GP who made an appointment to see a specialist, thank goodness for the NHS in the UK, it would have cost a fortune otherwise. We saw the specialist who advised that we take our son home and let him get on with his life as nothing could be done for his left eye. After further tests and examinations it turned out he had mylinated optic nerve fibers and was myopic at 3/300. We tried patching but he was so blind in his left eye that he just tore the patches off. he continued to grow and eventually had glasses that where -12 and the lenses so thick his glasses sat at an angle on his face, and they where the thinned ones. The glasses where eventually abandoned as they of no benefit to his left eye. He is now 14 and can just about read 2 inch high letters at 9 inch distance. However he rides a bicycle and enjoys rock climbing. He reads well and enjoys designing electronic circuits. His monocular vision does not hold him back in what he does, he occasionally walks into door frames or trips over for no reason but he generally enjoys a normal life and does most things 14 year old boys want to do. The only thing we have really headed from the Doctors is to not let him play hard ball games or rugby and to ensure he is seen by a doctor for any sort of impact to or around his right eye, as to loose his good right eye would be devastating for him.

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  45. Thank you for all the comments on this site. I live in the UK and my granddaughter who is 3 years old has been diagnosed with left unilateral myopia and left myelinated nerve fibres with colobomatous disc! she was given patches, drops to blur her vision in her good eye and glasses. After a few appointments with the NHS they have discontinued treatment saying there is nothing else that can be done.
    I don’t want to just give up! i will check whether the myelinated nerve fibres cover the fovea as mentioned in previous posts. Thanks again

    Like

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