Saturday, September 26, 2009

Bea's Adventures in Amblyopia

For some reason I have been having difficulty narrowing down to a single topic for this post. Things have been at best a bit harrowing in the Novus household. We have survived a tri-state move, various traveling to and from the Bay Area and a general array of smaller bumps in the road that were unplanned. So if I tend to babble or wander then I will undoubtedly use the excuses above. Though I am a bit of a babbler and a wanderer so, uhm, wait where was I?

Oh yes Adventures in Amblyopia. Since I have been so graciously allowed to guest post this week I thought I would go ahead and share Bea's story with you.

Shortly after her 6th birthday and well into her first year of kindergarten Bea had a routine eye exam with the school nurse. It was suggested that we get her eyes checked due to a slight discrepancy in her left eye. Now, I wear glasses and so does my husband. I have had them since 3rd grade so nothing set off any alarm bells. I made the appointment and went along my merry little way.

I knew pretty quickly that something wasn't right. Bea stared into the autorefractor and the assistant got a funny look on her face. She looked at a print out and looked at Bea again and said nothing. At this point I am still respectably calm. Then the eye doctor comes in. He flips a few lenses shines a few lights and fidgets like the dickens. I think he may have even broke a sweat.
My first though was that maybe he just wasn't good with children. Then he blurts out the foreign sounding word, Amblyopia.

OD: Mumbles something like "can't be fixed or corrected with lenses, lets dilate her eyes to be sure."

Me: Okay, I'll play along but what do you mean can't be corrected?

OD: Glasses won't work, blind in one eye, it can't be fixed, come back in 20 minutes."

At this point I am straight freaking out. In the end he admitted that he had no experience with Amblyopia and referred us to a specialist. The rest as they say is History. I pretty much knew everything and anything that I could get my hands on about Amblyopia by the time we got to the Opthamologist. I was even prepared for the patching. I was not prepared to be handed 1 plain adhesive patch and sent on my way.

Bea was a trooper from the start. As you can see from my previous post, she has a clear concept of what Amblyopia is and that she needs to "fix her brain". The first patch was fine, it was an ortopad. I had to get a box of Nexcare from the local drugstore and those were a nightmare for us. They stuck to her skin and made her cry. I gave up patching on the spot and started doing research.

Through the help of the Internet and a couple of new FaceBook friends I was directed to the ortopadusa site. We ordered the Ortopad Girl fun pack and a purple Unicorn Patch Pal for the days when the adhesives were too much. She loved them. She was a patching phenom, 4 hours everyday, 2 with the adhesive & 2 with Uni, no fuss. We also had a wide assortment of patching activities;

  • Creating a patching journal
  • Making artwork out of patches
  • Coloring and painting
etc... I believe that my verve for patching matched hers. Our first 2 month check up went from 20/200 to 20/60. WooHOO! Then August came and vacation happened and patching dwindled from 4 hours a day, to sometimes 2, to even skipping here or there. It was vacation after all. I am not convinced that 1 week of shabby patching was the reason that we had no improvement at our next appointment. I do however have a sinking pit of guilt in my gut that it was my fault, not hers.

So we went back to patching with an invigorating vengeance! We held on steady for a solid month. Thus we now we circle back to the beginning of this post. The move...2 days of driving, no patching. We are briefly, (fingers crossed so as not to overstay our welcome), settled with friends. This is a very transitional phase and we are patching but again sporadically. It is not for lack of trying, just some of those bumps I mentioned. Bea is suddenly reluctant to patch and has begun dreading it. There goes that guilt again.

I guess that is where the adventure comes into play. Like many families dealing with amblyopia there are ups and downs. I try to look on the positive and just be thankful that I have a healthy child. She has already come so far and we aren't stopping the fight anytime soon. So I look at my child and tell her she is beautiful, smart and amazing. I tell her that she is gonna fix this and when (not if) she does there will be singing and laughing and stories to tell.

I think I am telling myself as much as I am telling all of you, Don't give up! When you are feeling down about your child's progress find support. There are so many parents out there willing to tell their story and share their experiences. Most of all don't forget to high five your little one every time they finish patching. Make it worth it, let them know THEY are fixing this. They are patching strong!

PLGC&T- To all of you patching phenoms!! YOU ARE AMAZING! and of course to the wonderful friends and family who encourage them on this journey.

5 comments:

  1. Thanks for this post. Summer vacation was tough on our patching schedule, but sadly, so was progress with Eric's amblyopia. His back-to-school check up showed that he is doing so well, we only have to patch for a couple of hours on a couple of days each week. You'd think that would be easier than the 6 hours each day that we started with in March.

    Unfortunately, the opposite is true. Now that patching is LESS routine for us, Eric fights it more. He will be four years old in November and is asserting his individual preferences like crazy. NO carrots, NO meat, NO bath, NO patch!

    I'm thinking of switching from ortopad adhesive patches (which we highly recommend) to a cloth patch that fits over his glasses. Maybe the novelty will get him interested again?

    One thing is certain, I don't want to lose any ground on the progress we've made so far. I hate to be "mean mommy" but sometimes we really do know what's best.

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  2. Molly, Thanks so much! That is exactly what I am talking about. Sometimes you just need to know that you are not the only one. Just reading your comment lets me know we are in the right track. I think changing things up is a great idea! Best of luck.

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  3. Thanks so much for sharing your journey. My 7-year-old, Whitney was diagnosed this week. Unfortunately, her vision is 60/200. I don't know how she has functioned as well as she has! We just got her glasses on Thursday, and will begin patching in a few weeks. I will be closely following your story, and drawing encouragement from you. It is good to know that we are not alone.
    Emily

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  4. Thanks Emily. While this is Belle and her mama's journey I appreciate the comment. This site has been a refusge in the dark. Definitely stay tuned here and you're always welcome at mamacita caliente...

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  5. This blog has been a great resource for Amblyopia. Thank you and everyone who has contributed! My son is 10 and we are just starting treatment for him. We have been patching for 2 weeks and he has already improved quite a bit--from 20/200 to 20/80! It has been wonderful to read about everyone else's experiences. Thank you!

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