Week 6 – FrameHuggers

June09Washington 101Welcome to our patch challenge- WEEK 6.  My daughter is 2 ½ and has Amblyiopia.  We are currently trying to help her brain recognize her right eye.  She has perfect vision in her left eye and -7.75 in her right.  We have stepped up the patching since her vision has actually decreased the last 2 visits.

This week (last 3 weeks) I tried FrameHuggers

http://www.framehuggers.com/

Cost: 1 patch = $19.99 each + Free 1st class shipping

2 patches = $19.99 each + Free PRIORITY UPGRADE (SAVE $8.00)

3 patches = $19.99 each + Free 4th patch (see details below) + FREE PRIORITY UPGRADE(SAVE 27.95)

June09Washington 109

Ratings given 1-5 for the following criteria.

1 Doesn’t meet my expectations, 5 Exceeds my expectations

Cuteness Factor           5

Durability                      5

Full Eye Occlusion        5

Performs with sweat     5

Patching Support          5

Reusable                      Yes

Total patching hours for the week (As many hours as we can), Actual = around 70 hours YIPPEEEEEE!!!!

Elly’s response: We started trying a new patch yesterday and mid-day she took her glasses off and said, “Can I have my soft blue patch now?”  Also, about a week ago 2 different moms stopped us at Subway and asked where I found the patch.   They said their young kids at home are patching without success with the sticky patches.  I sent them to FrameHuggers and Elly started telling them that this patch was much better and that she can wear it all day to make her eyes stronger.  It was very touching.

Mom’s response;  This patch comes about as close as a mom could hope for to a perfect patch.  Camille at FrameHuggers is a great resource as she has experience working with children in an ophthalmologists office.  She custom makes each patch for your child’s glasses to ensure a good fit.  You can tell that she genuinely wants kids to improve their vision and is passionate about what she does. We actually were wearing the patch and it kept sliding down, so I called her and figured out we were putting it on the glasses wrong. (Guess I should have watched the video first)  http://www.framehuggers.com/instruction%20for%20use.htm That solved our drooping problem and there is literally no way that Elly can see.  The patch is very soft and comfortable to wear.  The down side is that it is a little bulky and does get hot when you are playing outside in 100 degree weather.  We only removed the patch for bath time, bedtime, and outside playing time when it was really hot.  She did AMAZING and kept the patch on for every waking moment the last 3 weeks.  My hubbie tried it on and said it was the most comfortable of all the patches.  We did wash it in cold water as the instructions said and it held up pretty good.  I would, however, not recommend adding a character to the front as we did.  The Nemo faded in the sun and is now a shade of peach.  Lots of kids comment on the Nemo and also want to try touching it.  My next one will be just a fabric one.  Last, but not least, I will warn you that they are expensive.  BUT, if you consider that I would have spent at least $7.00 a week on sticky patches, the cost for patching would be close to $28 per month, then this patch would pay for itself in 1 month.

28 responses to “Week 6 – FrameHuggers

  1. Great review!

    The cuteness factor of that picture of you two and the green tongues is off the charts!! You guys should move back to MN, and then you wouldn’t have to worry about the problem of it getting too hot in 100 degree weather.

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  2. Thanks for the review, amomofelly! We just found out today that our Ellie will need to patch no matter what until she is 10, so I guess, I better break down and get her some of these patches as all the other ones we have she can peak around. Glad your Elly is keeping her patch on for so many hours now! I am sure you will be able to see the improvements she has made in her vision at your next appointment.

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    • Oh Corrie, I’m sorry to hear that Ellie will be patching so long. That must be disheartening, though I know that if anyone is up for that task, you are.

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      • I wish that were true! Yes, it is a bummer…. 🙂 but I guess it could be much, much worse, so I better count my blessings! I also found out that there is pretty much no chance for her to ever have binocular vision. I am not ready to give up on that though!

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  3. We love our Framehuggers!!!! Aren’t they just the best. So worth the extra $$$ imo and Camille has helped me sooooo much!

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  4. We have one of the Framehuggers patches and absolutely love it too. We’ve been using it for about 6 months or so, and have been successful with patching since we got it. 🙂

    The only problem we have is that sometimes my daughter – who is 5 1/2 – will lift up her frames to see under it, so we go back and forth with the Framehuggers patch and some that i bought from Ortopad (the sticky kind).

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    • I am glad you are patching successfully – YEAH!!!! Elly gets mad after a while and just throws her whole glasses off to “take a break” with the FrameHuggers. I like the idea of using 2 patches, I have been FrameHuggers with Annissa’s patch for hot weather outdoor play.

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  5. hi guys,
    As I mentioned, we are about to start patching little Paris’s eye (just a couple of hours per day as she is only twenty months). The doctor said she sees about three times worse than what is normal from her weak eye as opposed to her normal eye. What does that equate to in figures?. I am terrified quite frankly and becasue she would just rip the glasses off if they had a framehugger, I will have to try the sticky patches. Even if I show her them she freaks out as she knows where they go and hates the look of them. What am I going to do!! I am trying so hard to stay positive guys but I am not doing very well. I am actually a bit depressed about it and feeling quite low lately. Gee it’s hard some days and I hate to sound pessimistic but I have to say some days I have cried and cried about it. Does anyone have any tips about how to start with these sticky patches? Many thanks and forgive me for being so emotional :(. I feel sad sometimes that this has to be part of our lives and I don’t want to miss out on the fun of enjoying my little girl. Having had two children already who dont have any vision problems I can honestly say I completely took it for granted until I have faced it this time around and boy I take my hat off to all of you who have been battling this for a while, it is very difficult I must say. But I am fighting to stay positive for Paris and any advice anyone could offer would be so much appreciated.

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    • Ingrid – I know from experience that patching is the toughest on us parents. As you can see from our pictures, we don’t let patching get in the way of having fun. I also get those frustrating feelings and have cried as well. It is very difficult because we are making our children visually impared or blind when we put on their patch. I found patching a toy or doll first really helped. Also, I will admit that we (my hubbie and I) took turns wearing a patch A LOT in the first several months. We also made patch time a fun learning time with art projects, blocks, and more. Some parents have also given their child a special treat every time they patch. Last, and not least even if she patches 3 minutes, let her take it off, and praise her “You are so wonderful for keeping the patch on, I am so proud of you for helping to make your eye stronger.” Then go do somthing fun and try again in 15 minutes. Eventually, the patch will stay longer. If she really fights the sticky patches, I would consider ordering a frame huggers. We started out with the sticky’s for a year and after wearing both myself, these are WAY more comfortable and you may be able to convince her to keep it on longer.

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  6. thank you so much for those kind and encouraging comments 🙂 I am going to give it my best shot and I will follow those suggestions, I know you have a lot of experience. My daughter is very similar to Ellie in that she has perfect vision in the left eye and -4 in the right. I may have asked you before, but does Ellie’s eye turn out? Paris’s does intermittently, definitely more so without her glasses. The doctor said she had less than ten per cent chance of needing surgery if we did the patching and kept the glasses on. If she did need surgery he wouldn’t do it untiil she was around seven. He also said that by seven, becasue of the large difference between her eyes he would definitely recommend one contact lense rather than glasses as they would lessen the difference in image size? Does this sound right to you? Thank you for all your help x Ingrid

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    • Yes, Elly’s Rt eye and sometimes the Lft turn out. Mostly when she is tired. Vision is SO complicated. From my understanding, we are patching so that her brain doesn’t shut off the vision in that eye completely. The surgery (our PO said that we as parents will know if and when it is time, maybe around kindergarten) will correct the muscles which keep the eye straight. We need to remind ourselves that we are truely blessed because our kids have a chance at re-gaining or keeping their vision with our hard work and dedication. It is an amazing gift to give us that chance and that is the one reason we keep patching.

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  7. yes, that is EXACTLY like Paris, mostly the right but sometimes, not often though, the left eye does as well. And I have even noticed both going out a little sometimes. You are right, I have also realised vision is SO complicated. The PO told me it is a good sign if the other eye is turning out though as she is using the weak eye and it is showing equalising vision? I am so confused. Why do they wait until five or seven to do the surgery (not that I dont want to do everything but surgery if we can!). It is so good to talk with someone in the same or similar boat. Thank you for sharing your experiences with me :). I feel lately as though I am totally all consumed by it – as you know the eyes are something you look at all day every day so you are constantly reminded, which is hard. You are right though, we are very blessed to be able to give our kids the best shot at the best vision they can get. Did your po mention a contact lense when older? Also did he say the short sight would be likely to get worse? I am worried about that also. Paris was diagnosed at around one and it has help stable so far?

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    • Yes, I am sorry, we are the ones causing all the confusion! I will start to refer to our Ellie as E. from now on and stay away more so that we can keep them straight. 🙂 I understand completely how you feel as I, too, have cried many tears over the patching issue. Our issues are very different from what you have, but the patching is the same kind of hard. To think that E. will have to wear her patch throughout most of her school years is hard to accept, but if this will help her be able to drive, see, and function in a normal environment, then it is way worth it! I have to remind myself that I could be giving my daughter chemotherapy treatments or having her wear a helo or something like that. Praise the Lord, I “just” have to put her through the patching. Yes, I feel like I am torturing her sometimes, but I am doing it because I love her and want her to achieve the very best in life. All the struggles have only made E. tougher. Hang in there! The beginning is the toughest, but it gets better in time! You CAN do this!

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  8. Thanks Corrie. They are very kind and encouraging words. I think we are going to try a frame hugger patch as they look so much more comfortable. I just hope she keeps the glasses on with it as it will be easier to rip off the glasses than a sticky patch I guess. SHe may surprise me though, if the frame hugger is comfortable it may work! It is hard with a younger child as they obviously have NO idea why you are doing this, at least with a child of even three or four you can explain somewhat! That is the challenging part. We have stuck the patch on dolls, on us, on our other children, which she thinks is great fun but then as soon as you say Paris’s turn she runs away and there is no way I could get one on her!! I will keep you updated on the frame hugger when we get it! Many thanks again.
    Ingrid and Paris

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  9. Hmmm, with a little older child they just know the words to break your heart. “NO mommy, no more patches. I just want to see for a little bit.” complete with big alligator tears. ARGH. I think if we as parents stay positive and make patching the routine, it does get more manageable (always difficult for us at least) Keep at it, because we are our kids only chance at better vision. A little pain today, may mean an eyesight gain in their future.

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  10. Thanks amomof
    Yes, each age would have its challenges definitely! It must be even more heartbreaking when they use those words to pull at the heart strings. I know you are right though, it is imperitive to patch if we are to get better vision in that eye. I am going to try the atropine drops for Paris at least until she is older. We have an appointment with the PO on wed to discuss. Can anyone offer any advice on this, have you had any experience with the drops? Are they safe? Will it be uncomfortable for her? Its our only option at this stage I think.
    Many thanks,
    Ingrid

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    • We did try atropine drops with E. She was only about to turn 1, and it was awful! Her whole personality changed, she would scream and cry all day. I only did it for one week and begged our PO to let me stop. We went back to patching after that, and had no more problems. I can vouch for the framehuggers patch, though! The first thing E. said when we got it was “oooooooooh…. it is so soft.” We were at the beach all of last week and even there, she kept the glasses and the patch on the whole time. I know it is so hard, but you have to be persistent. If our children get away with not wearing the patch one day, they will certainly try if it works another day. Our patch goes on first thing in the morning and does not come of until nap time. E. will take her glasses of from time to time and ask to take the patch off of them, but I just remind her that she has to keep it on until it’s time for a nap. She has asked to go to bed before so she can take off the patch…. so you know it is really bad. 🙂 Hang in there! Once you make it a part of the daily routine, Paris will adapt, and it will become a part of her daily life, just like putting on shoes to go outside! I promise! Kids are so adaptable, but it takes persistence on our part to make it happen.

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  11. Hi guys,
    I just wanted to share some good and very positive news re the patching. We ordered the frame hugger patch and Paris is keeping it on and doesn’t mind it at all!!!! I cannot believe my luck! The very first time she resisted it for maybe a minute but once it was on, and we distracted her she did not touch it again until I took it off two hours later. The next day it was even easier and today she took it completely in her stride! She is so proud of herself too, I think becase she knows it comes off after a while and we have a treat and praise her and she says eye better!!! She just carries on as if it’s not there really, watching TV, doing puzzles, playing outside. I cannot speak more highly of the frame hugger. It is so soft and such a good fit, there is no way she can peek. I truly feel as though this is really going to help Paris’s vision improve enormously. It has lifted my spirits so much and I feel so much more positive. Just wanted to share and thank you so much amomofelly, if it were not for your reviews of the patches, which I followed closely, I would never have got on to them! I have recommended them to so many other already.

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    • YEAH! I am so glad the patch is working for her. I have some more reviews to post soon, but none have worked as well as framehuggers. Elly screems and says “I want the blue one!”

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    • Yeah, Ingrid! I am so happy for you! I know your little Paris will continue to improve her eye sight and you will soon see the results of your hard work! We also love this patch. We have been using it for a couple of weeks at least and now we are going to full time patching, so we will continue to use this one as E. likes it best of all of them. All the best to you and Paris!

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  12. Thanks for this review. I only found this website a few minutes ago. I have been researching non-adhesive alternatives today since my daughter has torn skin from her patch. I actually spoke with Camille at Framehugger today and decided to get them for my daughters. Now your review has cemented my decision!! Thanks again.

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  13. YEAH! WE are in love with them and hope you find success. It has been so hard to try other patches. Elly just takes them off and asks for the framehuggers. Camille does have a new option she is considering offering parents that is a little lighterweight and made out of a thinner fleece. I love that she tries to meet the kids needs and is totally dedicated to helping us!!!

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