It is not easy to put eye drops into a wriggling 2 year old who is screaming “NO MOMMY IT HURTS.” We have it down to an art. She chooses the “treat” for being brave. My hubbie and I both wash our hands. Then I pick Elly up and sit on a chair. I hold her arms down and pull the bottom of her eyelid down, while my husband holds the top of her eyelid up and puts a drop in. Screaming for 2 seconds follows, then Elly sits up and says, “I’m ready for my treat.”
2 months after starting atropine drops, I felt like I lost my child. Elliana was a sweet adventurous, kind little girl. The drops made her clingy, fussy, and scared. She stopped sleeping through the night and had frequent tantrums. I addressed these concerns both with our PO and the vision specialist from the school from the Deaf and Blind. They both talked about trauma. The treatment our PO chose for Elly’s condition is to make the vision in her strong eye weak (drops) or not at all (patching) Because she could see with her strong eye before, the treatment was in a nutshell, taking her vision away. For any child or adult this would be a traumatic experience. Each person deals with trauma in their own way. I think it was about 6 weeks into the atropine drop treatment where I thought, “there is no way I can do this anymore.” I talked about these concerns with the PO and staff. They told me that most parents stop treatment because it is difficult. As the parent, it is up to me whether or not to implement the treatment plan. I can continue drops and have her vision keep improving, find a way to keep the patch on, or I can give up and let stay visually impaired for the rest of her life.
For us, we felt it was important to work through all of this for the chance at her vision improving. We have acknowledged and are teaching her how to work through her newfound fears of sirens, being alone, and the dark. We have also worked at teaching her ways to calm her body when upset; deep breaths, yoga, hugging a lovey, and rocking with mommy. I will also continue to ask questions and make use of all the resources available. Our next appointment is Tuesday and I will ask about the contact lens and if it would be an option for Elly. It also sounds hard, but I am open to new challenges if they will be better for Elly.
Not all days are peachy, but it has been over 3 months since she began the eye drops. She is now sleeping through the night again. I can also tell her focus has improved as she is holding books and other objects further away from her eyes (about 6 inches away as opposed to 2) We are having less tantrums and her vision in her right eye has improved significantly. It’s not easy, but knowing that as parents we are trying everything in our power to strengthen and improve her vision, it’s worth it.
For Little Eyes 
What a beautifully-written and heartbreaking post. I really commend you for everything you’ve done for and with Ellie.I’m so happy that you can see things getting better. When we met Ellie earlier this month, I was impressed by how bright and charming she was (and her mother, too, of course).
LikeLike
Thanks for posting these comments! I was wondering if your Elly had the same behavior change when you first started patching her. Does her vision get beter in the eye that you put the drops in as the day progresses or does it stay the same throughout the day? How long is your PO going to keep you on these drops? What is the reason for her amblyopia? Is she cross-eyed or just has poor vision in that right eye? We took a break off of patching this past summer because Ellie sweats so easily and we live in hot and humid Georgia, so the patches would come right off of her face as soon as she got hot. We also have some patches that attach to her glasses, but she would sweat and her glasses would slide down, and then she would look over her patch. So, when we went back to patching, it was a struggle at first. I made her a tree poster, with lots of empty branches. Every day, when we take her patch of after six hours, she attaches it to a branch because after all a tree cannot be naked. 🙂 Every time she fills up a branch with patches (about every week to 10 days), she gets a special treat. Reward is a great way to get our Ellie to do what she does not want to do. We are starting vision therapy tomorrow. We will see how that goes! Now, we will go and see how our snowman is holding up… who would have thought we would get snow in March!
LikeLike
I love the idea of the patch tree! I added it to our Collected Wisdom page.
LikeLike
I love the idea of a patch tree. PLease send Ann a picture of it so she can post it! We tried the princess skirt posters at Ortopad for $1.99, but Elly was not motivated at all. Since the drops only blur the vision they are not as effective as patching. I think they last 6-8 hours in their most blurry state, but her eyes stay dialated for a LONG time. We patched part – time for over a year. SInce this didn’t work with Elly, they bumper it up to full time patching or drops. I was told we will keep dropping until she doesn’t show improvement for 3 visit.
LikeLike
We had another appointment yesterday. Last year Elly was at an estimated 20/1200 in her eye. Now it is 20/60 with glasses. Elly’s vision is improving, but slowly. They reccomended patching in the evening in addition to the drops every day. Looks like we are making a patch tree for craft time this afternoon.
LikeLike
I am sorry, I have not been able to send a picture of the patch tree yet. Our oldest daughter has a hearing loss and we have been having testing done for her. Today is a CT scan… I am glad that Elly’s eyes are getting better! I am praying our Ellie’s eyes will improve like this as well. We have been patching and doing glasses, and yet there is no improvement. My biggest concern is that if her vision is so poor in the left eye and she is spending the biggest part of her day with the good eye patched, how will she learn letters and look at pictures in a book, etc. Anyways, once we make it through the Ct scan this afternoon, I will get a picture sent to Ann. Good luck!
LikeLike
Corrie, I am so with you on the education aspect. I wrote a post about activities to do with your child a while back and am hoping to have another post about resources available to parents. The PO are great about helping us with our child’s vision, but I find I need more info on educating and making the environment easier for someone with limited vision. Hope the appointment this afternoon goes well.
LikeLike
Yes. I feel like we need to know more about how to help our kids deal with their loss of vision especially when we patch or do drops in their good eyes. I had an eye exam on Monday and they dilated my eyes. I couldn’t believe how blurry everything was and how bright the light was. I could definitely empathize with Elly a lot better thinking she can see even less than I can. On another note, we walked down Stone Mountain this weekend with Ellie’s eye patched. She whined the whole way, even though she was holding on to my husband’s hand the whole way. It is a pretty steep hike down with lots of boulders, drop offs, uneven terrain, etc. No, I was not trying to torture her, it was rather a lesson in learning to navigate a terrain that is unfamiliar to her, by telling her to make a big step up or down or a little step forward, etc., in other words using language to help her overcome her lack of depth perception. I find that teaching her descriptive language to help her know what to expect, helps her deal with her loss of vision. As for the picture of the tree… it is coming, I promise. I am still trying to work through Friday’s appointment and can’t seem to get caught up at home. By the way…. going to a Children’s hospital always reminds me to count my blessings!!! Any time, I feel sorry for myself or for what our children are going through, I just need to walk into that hospital and I suddenly don’t have any reason to feel sorry for myself as there are kids and parents out there that go through so much more than I do! How’s the patching going?
LikeLike