Megan has written before about patching her daughter Ruby. She’s back with an update and a question. -Ann Z
To brace or not to brace….
And that is the question at our house these days. I’ve read that the bracing tactic is effective, but I’ve put it off for so long. I’ve tried other options all unsuccessfully:
- Bribing with food – that worked for about 3 weeks
- Bribing with the computer/ipad – hasn’t worked at all
- Bribing with the TV – also complete and total failure (although my other working theory on why that failed was because Yo Gabba Gabba made us both scream.)
So now, as we approach the one year anniversary of Ruby’s eye surgery, we come down to this: do we brace her arms so she can’t bend her elbow and rip the eye patch off?
I’ve purchased a lovely pair of purple and white fabric covered swim floaties with flowers and ruffles on them for just such a task. That seemed like the least invasive way to go for the bracing measure. (However, I’m fully aware this swim floatie/brace technique could illicit another tantrum down the line as she gets bigger and we go swimming. But frankly, I can deal with that as a lot of people don’t like to swim. Plus, I’m banking on the theory that she’ll have blocked this whole experience out of her mind.)
Ruby is 17 months old and I’ve read about 17 month old kids who do patch quite well for several hours a day so I know this can be done. But as all parents know, the toddler years aren’t exactly the most cooperative ones.
My question to the collective group is this: Did you try bracing to get your child to learn to leave the patch on? And if so, what did you brace with?
Yes we did use braces on my sons arms. I would tell him that keep your patch on or else you will have to wear your brace , when he did not listen after repeated warning then I would put on the braces. In about 10 to 15 mins he would come to me & would says that he wanted me to remove them, at that point I would tell him I will remove the braces, but glasses & patch has to stay on or else I will put the braces back on. First couple of weeks he really tested me with the braces, but after that a warning was enough I didn’t really have to put the braces on. We used the pedi-wrap arm restrains
We have used braces as well. Julia had a unilateral cataract and patching is SO very important. We first used them when she was around 11-12 months old. She had figured out how to rip off the patch and we had gone through about 20 in 2 hours. The hospital had given us a pair of pedi wraps after her second surgery at 5 months old. We tried mittens first but she quickly learned how to take off the mittens so we tried the braces. Amazingly, she really didn’t seem to mind the braces. She played like normal and the patch stayed on. After about a month, we were able to remove the braces and she left the patch alone. Fast forward to now (she is 17 months). We have started using braces again. After strabismus surgery, she suddenly will not leave the patch on. She has outgrown her pedi wraps, so we ordered snuggle wraps. Unfortunately she can undo the velcro on those. The company is kindly sending a reinforcing velcro wrist strap to help with this problem. I know people probably think I am a horrible mom for putting her in arm restraints, but the other option is her losing vision and having a horrible, red rashy area around her eye from ripping off 20 patches. I say do what you have to do. I too am banking that she is not going to remember this time and will eventually thank me when she can see well enough to get her driver’s license. I will use the braces until she starts keeping the braces on or she develops enough cognition to be bribed…I mean rewarded for wearing the patch. We will be patching until she is in elementary school, so I figure this is a battle we just have to attack head on. I hope patching becomes easier for you soon (I am praying the same thing for us too!).
We braced our son as soon as he learned to rip off the patch. We tried every sort of bribery in the world, but he understood that he could see without the patch. People thought we were horrible for those wraps, but we were looking at him being blind in that eye. It worked for awhile, but eventually he learned how to remove his arms out of the pediwraps. My son is a very determined little guy. And then we would get maybe 1 to 1.5 hours of patching without that wraps in a day, but we practically had to sit on him. We did this for almost two years and I hated it. Tears every day. About a year ago, he had experimental PRK and it was imperative that he not touch or rub his eye for about two weeks. That was rough, but he kept them on because he was 3 and a little more compliant. Because the PRK improved the vision in that eye, he will now wear that patch for up to 4 hours without wraps… which is all the doctor is requiring at this time. So, what I’m saying is… give it a try because as vision improves the child seems to get more compliant about the patch and the wraps will no longer become necessary. I have to try everything so I can tell him that I tried everything to ensure he had good vision
Don’t braceAt least not just yet….There are several other ways you may be able to “patch” her. One isto have your doc use an eye drop that will fog up her better seeing eye at near so she has to use her other eye. Another possible solution would be to fit her with a contact lens that would also “fog” up the better seeing eye. Talk to your optometrist for possible alternatives to bracing. Little ones need both hands to learn about their world…. For a doc who might be able to help and to offer additional recommendations go to COVD.org
We asked about using drops instead of patching. I will admit I was not very excited about using a drop because I am extremely hesitant to put any unnecessary drops in her “sound” eye. Our PO said that drops would not work because her vision in her weak eye was so weak. Because she was at 20/300, the drop would not blur the sound eye enough to force the brain to work with the weak eye. Even blurred, the sound eye would be dominant. So drops were not an option for us. I also didn’t want to put an unnecessary contact lens in her sound ey when we could patch. We are only patching for part of the day, so her arms are free for a large portion of the day. Also, her hands are able to be used, she just can’t bend her elbows. She still plays with her dolls, her toy kitchen and other items with the arm restraints on. I don’t want people to think I immediately decided to put arm restraints on my daughter. It was a difficult decision that i still have mixed emotions about. It is never fun to put arm restraints on your child. Just like it is not fun to put a contact in an infant or hand them over for 4 surgeries. But I am dedicated to helping her gain as much vision as possible.
Laura – We also had the same problem with our son. The drops or contact lens were not an option because his “good” eye was 20/20 and his “bad” eye was like 20/400 or worse. There was no way to blur his good eye to the point where it would be worse than his affected eye. Ethan was completely mobile and played just fine with the arm braces. I don’t regret using them at all. After his surgery and patching his corrected vision is now 20/80 in his affected eye. Which I know isn’t great but considering that every other doctor told us to just cosmetically straighten the eye and get him a pair of glasses to protect the vision in his good eye… I’m pretty thrilled and I don’t regret it all. I’m hoping that with a few more years of patching we might get even more vision out of that eye maybe even 20/40 as that’s the best anyone has gotten in the study that Ethan is in, but there’s no way to know. I have to be grateful for what we’ve gotten so far. Time is critical with this problem. My son also has myelinated retinal nerve fibers in his eye and we still don’t know how that will affect his vision yet. All I can say is that we have tried everything we possibly can and I find a lot of peace in that I will be able to tell him that when he’s an adult… whether he has 20/40 or 20/80 vision in that eye.
Partial occlusion is NOT an option for some. Our son had an extreme difference in his visual acuity. Patching the good eye was the only option if we wanted him to have vision in his affected eye. Bracing is usually only needed for part of the day while patching. They have the rest of the day to learn how to navigate their world. Also, braces are a short term thing while you teach them to leave the patch on their eye, a few weeks or maybe a month. In the grand scheme, they will thank us for vision later. They will not be mad that they crawled a month later than they might would have. We put swim floaties on our son for a little while, maybe a week. His skin was bright red around his eye from constantly tearing off his patch. He crawled and walked quicker than our older son did. In other words, do what you have to in order to give them the chance to see their world through two eyes. (((hugs)))) This isn’t easy, but well worth it.