Many thanks to Megan for sharing the story of her daughter, Ruby – Ann Z
Ruby is just like any other 16 month old. She’s working on mastering the art of walking, enjoys searching for the perfect bedtime book by pulling them all off the shelf and playing with her parents and little friends. She’s just like any other toddler — any other toddler that is who wears a contact in their right eye and needs to wear an eye patch.
I realize a contact case and saline isn’t in your average diaper bag, but it’s in mine. My daughter was born with a pediatric cataract. It was discovered when she was three months old during trip to Urgent Care to deal with a scary cough that turned out to be our first case of RSV. However the during the exam, the doctor kept going back to her right eye. He mentioned it just didn’t look right. But I was more concerned with the fact that she couldn’t breath very well. Lucky for me, he was concerned with both issues.
Turned out, that night at Urgent Care (in the middle of a horrible snow storm, because really isn’t that when we all go to Urgent Care in the middle of the night in a horrible snow storm?) the doctor saved my baby’s eye sight. Within 2 days we were in a pediatric ophthalmologist office. Less that a week later we were visiting specialists at Seattle’s Children’s Hospital. The date was set. Her cataract was coming out. In early April 2012, it did. She was a trooper during the surgery and recovery. She even did well patching those first few months. Her little friends at daycare enjoyed picking out which patch she’d wear on her eye that day. She’d happily sit back and let them fuss over her and entertain her while she had her patch on. It was wonderful. I thought, hey this isn’t so bad. I can do this.
And then she turned one. And became a full-fledged toddler. And the days of wearing her patch are long gone. She screams when you get a patch out of the box. We wrestle and cry and try to get it on her. But she rips it right off. At daycare, her little friends still pick out her patch and keep her distracted – for about 10 minutes. If we can get a good 20 minutes of patching in, we call it a good day. However, we need to have her wear the patch 4-6 hours a day, every day. We have a long way to go.
And the patching only happens if the contact lens is on her pupil. Many days her contact floats off to the side of her eye. Sometimes we can manipulate it back on, but sometimes we can’t. Plus she’s gotten stronger and rubs it out more often. She’s so strong and fights her contact so much that her dad and I can’t get it into her eye ourselves. These days we seem to be making weekly pilgrimages to the contact specialists. Luckily, they love Ruby. They get us right in and it takes four of us to get her contact in her eye. She kicks, screams and cries during the process. I just hold her tight, tell her it’s all going to be all right and that she needs her contact to see. I tell her it’s very important for the future President of the United States to have good vision. She cries. I cry. They tell me it’ll get easier. They’ve been telling me this for a while now.
I do know it’l get easier. She’s just a baby. A baby who doesn’t know she can’t see out of her right eye without a contact lens. A baby who doesn’t know she needs to wear her patch everyday faithfully to have good eye sight. A baby who’s mother and father are trying everything to make this work. I’ve done the research and I’m constantly doing more on ways to get your baby to wear their eye patches. But every time I feel like we make progress, her contact floats to the side of her eye and there’s a day without patching. Or worse, the contact comes out. There’s three to four days without patching while we wait to get to the doctor or get a new lens.
If any parents have advice on how to get a spirited 16 month old to wear a patch, or how to deal with a contact in a toddler, I’d love to hear them.
Is she wearing soft contact lens?
It’s such a major thing that unless you have been through it there is no way anyone else can understand.
My son had cataracts on both eyes and had the removed also at 3 months lenses were just a complete nightmare that I would be physically sick as his lens changing day approached and we would have to have 4 people to hold him down and replace the lenses. We patched for a few months but he also ripped the patch off, it’s so hard to explain to a toddler they need to wear the eye patch, maybe you could try having a special treat for the first half an hour of wearing the patch and then she may forget about it being on? Although its so hard when you finally get the patch on and then have the lens slide off.
We ended up deciding to have lens implants put in my sons eyes which was recommended by the opthamoligist. Good luck I hope you can get her patch on!
Hi- my daughter had a cataract as well. She wears a contact in her right eye and patches 5.5 hrs a day. There is a yahoo group and a facebook group which have been very helpful to me. You may be a member already, if not, please check it out. (The facebook group is called Aphakic Kids, if the link doesn’t work). It sounds like you need a new contact! We are fine in Silsoft (we are lucky). But I have heard others discuss ill fitting contacts and custom fit contacts. I hope that the doctors are doing everything they can to find a contact that stays put. That may make patching a lot easier. Oh, and on the facebook page there is a comment by Stacy (to Jessica’s post) about the fool proof hold. This is what I use…it works for us! At first it would take up to 30 minutes to get her contact in and remove it, everyone crying, but we take it out everyday and it has gotten better. Though if it has floated from the middle extraction is 10x harder, so hopefully a good fitting contact will make that easier as well! Hang in there and good luck!
Elsa is two. I couldn’t ever get the patch to stay on and feel like a crappy mom for not doing it well. But lately i have found a trick that works pretty well most days…she loves gum. So if she asks for gum…it comes with a patch. We don’t get it done every single day, and really I fear that maybe we haven’t done the work early enough, but it is what it is and I am claiming a victory for getting it done at all. I guess my point is that it seemed easier as she got to the age where negotiating was even an option. Best wishes 🙂
Thanks for the comments and support! Somedays (actually most) I do feel like a crappy mom for not getting the patch on or being able to move the contact back on her eye. It is a Silsoft lens and we’re actually going to try a different size. Fingers crossed it’ll stay on, then we’re back to the patching battle. I’m willing to try anything!
Hi Megan, my son Easton is 2 and has a very similar story. This Eye journey has been a very long road but I can say… It may not be easy, it probably never will be, but it DOES get easier. First of all, I highly recommend finding a contact that fits. I am sorry that almost a year later, you still have a fit that is sliding. I know it takes persistance, patience, and money BUT it is all worth it when you spend all your time, energy, and tears getting the darn thing in… it needs to stay on!!! Secondly, patching pays off!!! The more you do it, the easier it gets, AND most importantly Ruby’s vision will improve. You are probably in the hardest age right now, but don’t give up. When it comes off, put another one on, again and again and again… all day, every day. I know how hard it is but use the feelings you feel when you are NOT patching to fuel you through the hard times. You are doing what is best for your child. She will learn and understand that this is her life, my son has and it makes my heart burst with pride to see how far he has come in such a short span of his life. All the best to you, please remember everyday during the hardest of times… you are not alone. This community is here to support you. (((hugs)))
Thanks Amanda! I needed that comment! Ruby doesn’t have a contact right now b/c the manufacturer messed it up twice!! So it’s been at least two weeks with no contact and no patching. This does not help me at all!
I love that you have support and can openly express your feelings. If ever you need an ear, you can always call me. We all love Ruby, Rubes! She is a treasure and is blessed to have wonderful, caring parents like you!
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My son Ethan was also born with a cataract and has been wearing a contact lens and patching since he was five weeks old. He will be one the end of April. In the beginning we had a hard time doing anything. His contact fell out all the time. He actually rubbed one out on his hand and then as babies do was sucking on his hand and ate his contact. Finally, his eye dr. recommended a specialist that makes custom fit contact lenses. This dr. has been the BEST thing that has happened to us. His contact is always centered and never falls out! This Dr. makes the contact lenses at his office and it is made specifically for Ethan and his needs. I am not sure if there is such a Dr. in your area but you should definitely ask the dr. you see now. Had I known how much nicer the custom fit contact was going to be we would have just started there instead of ordering from the other companies. As for the patching he has done so well until the last couple weeks. He is just realizing that he too can take the patch off. Some days we go through eight or nine patches and then others we go through one or two. Patching is something I have started praying a lot about!! When I see him pulling on it I tell him to leave it on and that he’s making his eye stronger. If he takes it off I put one right back on. I have no idea what to expect as he gets older and stronger I am sure it is going to be quite the challenge. I hope that you are able to find a contact that fits!! It really makes all the difference! Good luck!
My 2 1/2 year old, Wesleigh, wears a contact for aphakia. She used to fight us when we put it in. I would break out in a sweat and get all stressed out on nights when we had to do the contact. I dreaded it. There were definitely lots of prayers and tears, I’m tearing up right now reading all of these posts. I wish I knew about this website 2.5 years ago when I learned I had to send my 4 week old for surgery to remove a cataract……….The reason I am commenting is to let you know that it really will get easier. Wesleigh used to fight us; she would flail, kick, and scream. Now, when she gives me a hard time about taking it out or putting it in, I give her the option of letting me do it without daddy, or having daddy hold her down like we used to. Now, she lets me do it every time without being held down. She acknowledges that she can see better with the contact. Once she realized that, it was a lot easier. She is aware of her contact, we talk about taking it out to clean it, and she is a lot more willing to let me remove, insert, and adjust her contact, now. It gives me hope that everything really will be OK.
Aaargh! I know exactly how you all feel! My 3 year old son Dane had a cataract removed at age 6 months and has had a contact lens and patching ever since. We’ve been through so many contact lenses (even pulled apart a vacuum cleaner bag trying to find a missing one once) – we have a custom fit, gas permeable hard contact lens. It used to fall out/be rubbed out quite often but now he’s getting older it stays in most of the time. Windy days, sand pits, glitter and dry weather are not great though! Do you use a local anesthetic drop when you put the lens back in? We use 1 drop of Minims which seems to really help, so if it doesn’t go in quite right at least it’s not painful. Dane has always been really good at patching – obviously we went through that stage of him pulling them off. But we just kept sticking them back on again, and again, and again. Persistence is the key. Now that he’s 3 though, he’s started disliking the patching so we’re trying to find ways around it. We invested in an iPad which, although expensive, is brilliant – not just for distraction but for his visual development as well. iPad time = patch time. Of course he has to patch for 4 hours a day so it’s not quite that easy!! But hang in there. There will always be challenges and struggles but when Ruby is an adult and has countless opportunities open to her because she has good vision, she will thank you for your hard work (that’s what I tell myself anyway when Dane is screaming on the couch not wanting to put his lens back in!).