Reader Post: Worry over tomorrow

This question comes from Bowenian Mom whose two sons both have extreme myopia (nearsightedness) – Ann Z

How many of the parents on the site are dealing with potentially lifelong or increasingly bad vision problems? With such extreme myopia, my boys have thinning of the retinas and are at risk of retinal detachment–and we all know what the worst case scenario is. Also, their Rxs got so much worse between their first several exams that I just worry so much about rapid decline (though thankfully, we found out yesterday there was no change in my 3 year old between age 2 and 3). Are the other parents here mostly dealing with temporary problems or lifelong ones? I feel I have mastered today: the fact that my children need glasses, the constant comments, helping them to care for their glasses, finding an incredible PO, etc. But I still struggle most with the worry over tomorrow.

Advertisements

7 responses to “Reader Post: Worry over tomorrow

  1. We are dealing with a life long vision issue due to ROP. Bennett had laser eye surgery in the NICU but has severe myopia (currently -12 and -8.) We were told we can anticipate any growth spurt will lead to worsening vision. With the risk of retinal detachment we were also told he needs to avoid any contact sports. We’re just hoping he is able to maintain enough vision to read print & be able to drive.

    So yes, I’ve adapted to the day to day challenges of broken glasses and a rambunctious little boy in glasses but I worry about what the future holds for his eyesight.

    Like

  2. I don’t worry anymore. When our youngest daughter, Olivia (2), was diagnosed with life-threatening food allergies at the age of 10 months, it put Alex’s (8.5) & Sarah’s (4.5) eye problems in perspective for me. (Oh yeah, we just found out this month that Olivia will be getting glasses too!) I’ve seen Alex thrive even when his vision with correction was 20/200. Life may have more challenges, but it can still be great!

    Having a life-long best friend who is totally blind and has been since childhood probably helps too; she has been an invaluble resource & inspiration to us throughout this journey. She was also Alex’s biggest champion as he went through his patching and surgery and I have been able to see her get married, have two boys & a job as a blind adult. Her life is no different than mine, other than the fact she doesn’t drive.

    Alex & Sarah will never be pilots or surgeons, and life may always be more of a struggle, but they don’t live in day-to-day fear of death from something they can’t even see. (No pun intended!) Olivia has had reactions from sitting in the shopping cart, playing in the playroom in the Children’s hospital, playing on the playground, even from having people pick her up. Now *that* I worry about!! I know that with the right attitude, their vision challenges will not hold them back!

    (Sorry – I have been trying to get a post with our story written, but I always seem to get interrupted!! I’m supposed to be doing our taxes right now…) ;-P

    Like

  3. Ann, thanks for posting the question!

    And thank you so much bedandbreakfast and heidelade for your replies.

    heidelade, we actually have not been told by our PO to avoid contact sports or to expect worsening vision with growth spurts. My 3 y/o is -12.5 in both eyes. That is interesting to read–I need to learn/ask more about how to reduce the risks of retinal problems through their lifetime. My sister is just now starting to show some signs of it, but she’s in her early 30s and is about a -6 or -7 now. Our PO just explained that it is possible some text might get harder to read as they get older in school (due to the glasses making things appear even smaller than they already are).

    bedandbreakfast, thank you for everything that you wrote. It was good for me to read that. I usually have very long stretches of weeks and months when I completely forgot we’ve even got an added challenge at all in our lives! But around appointment times, like this past week, it’s always hard for me. I wanted to know worst-case scenario stuff this time, and our PO was like, “well, yeah, there’s always a small chance, but you could also get in accident when you leave here.” And it made me think, you know, we’ve got cancer on all sides of our family, and I never worry about *that*. And worrying doesn’t do anything anyway. But there is a balance I need to strike between not worrying and protecting their eyes, like heidelade mentioned with the sports.

    Like

  4. Fortunately my sister’s retinal thinning is not a concern for her and does not need further action now.

    I also wanted to add that even at our second opinion here in Los Angeles at a LEADING university/medical center (even though we love our PO, who is also very well respected), the doctors there did not talk to us about retinal detachment or concerns for the future. Just confirmed high myopia and sent us on our way. Not sure if I should be frustrated or relieved by that…

    Like

  5. Hi BowenianMom,

    We too are dealing with a lifelong vision issue..very high myopia due to congenital ectopia lentis. Our son, 2 1/2, is presently at -7.5 R, and just recently had a change from -11.5 to -18 in the L due to a shift in the lens.

    With the recent change, we’re going to have to face a new host of challenges..visual disturbances due to the high difference between the two eyes, comments (we’re awaiting the new lens which we’re told will be ‘thicker’), possible need to remove one or both lenses at some point in time, no contact sports…etc.

    Some days are definitely worse than others, like last thursday when the change to -18 was discovered.

    I feel we share similar perspectives…master today..try not to worry about tomorrow. I do find that very difficult at times….moreso lately..as I tend to obsess on ‘eventualities’.. perceived or other. But in the end, our son is happy, well adjusted to the glasses, and thus far we’re doing well visually (as best as can be had at present given the current situation). My hope for the future is that we can attain a somewhat permanent correction.

    BTW..our PO too, steers us away from worst case scenario discussions…opting for a best-corrected approach and tackling issues one at a time.

    Like

  6. Hi BowenianMom,

    I am the same, but I agree with GeorgeB. My daugher is happy and does everything a 9 year does. Also our PO does not like to discuss the worst case scenario and opting of the best-corrected approach.

    GeorgeB
    My daugther her prescription is also very high (-12) but she has a high Astigmatism ( +9). Where are you ordering the lens from and which material if I may ask?

    thanks

    Suzy

    Like

    • Hi Suzy,

      We order the lenses from our local opticians, no special reason other than that they do a good job both with the preparation of the lens and the current optician there is very easy to deal with. No special lens either…just a standard polycarbonate….I always wanted to go with high index to make it thinner but the cost gets up there…and to be honest, without beign able to predict when the Rx will change its not worth it at this time. The trick for us has been to keep the frames small and the shape as round as possible. The bigger the frame the bigger the lens…and for a myopic prescription its the edges that get much thicker as you know. So, when we have to order the lab know to cut from the core (which they do anyway but doesnt hure to remind) but also to grind the edges down which makes the profile of the lens a little slimmer. It’s also a safety issue for us…as he’s gotten older he’s also gotten more fearless in play and sport.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s