Wednesday, March 18, 2009

Maggie's story.


The day she was born, I noticed her eyes were swollen shut. I asked the pediatrician who checked on my newborn infant if this was a concern, and her reply was no. Flash forward to 18 months-my daughter was exposed to Sesame Street from the time she could sit up, and now she was counting to 10. Surely she had acquired the intellectual mind of her father through hearing about the numbers, colors, shapes that Elmo and the gang promoted.

It didn't occur to me however that her standing three inches from the TV screen was a problem. I kept moving her back and telling her standing so close was not how we watched TV. It didn't occur to me that she might have severe vision problems, because my husband and I both had perfect vision. I was even told as a child to become a pilot since my vision was so good! Then, I remembered my mother telling me that she too stood close to the TV as a child, and that was a good indicator of vision problems with children.

Another tendency she had was constant frustration. When I would bend down and look at her, she often struck out at me with her hand in anger. I couldn't figure out why, but it was a definite outburst of frustration. Little did I know then why she was frustrated, she couldn't see.

We made an appointment for Maggie, my blond haired big blue eyed youngster, to see her pediatrician. It was quite obvious to her that Maggie indeed had vision issues, and we were referred to the Casey Eye Institute here in Portland.

I was very nervous for this appointment. So nervous in fact that I refused to do any research on vision problems in children through Google or the library. I did not want to prep myself for any fears that my daughter could face any sort of blindness. That first visit was difficult on Maggie, then 26 months. Trying to get a toddler to be still so a doctor can flash lights in her eyes, and get her to identify tiny pictures was a nightmare, but amazingly the P.O. was able to diagnose her anyway. When the examination was complete, she rambled off Amblyopia. She handed me the pamphlet and an eyeglass prescription. The numbers on this prescription did not make any sense to me as I had never had a need to wear glasses, nor did my husband. When I asked the doctor to clarify Maggie's condition, she gave it to me blunt; "Maggie is very farsighted, and she will most likely need glasses for the rest of her life."

Do most parents cry when their child is diagnosed with this? I don't know, but I did let the tears come. Was this my fault? Did her swollen newborn eyes have something to do with this? The real reassurance I was given was that we caught it quickly, and there is a great chance of progress when it is caught early. So, now it was time to get Maggie a cute pair of glasses and begin helping her amblyopia. The day we put on her new glasses with the prescription was a day I will never forget. As I put them on her, she looked at me with her big blue eyes and said, "I see you!". How obvious it was when her eyes actually focused on me, and how much different the world looked to her.

Three months later, the P.O. told us to start patching the weak eye. That went on for 4 months, but showed little progress, as our feisty toddler kept tearing them off. Then, surgery was suggested to correct the weak eye's muscle. The thought of one's child on the operating table is a nightmare for any parent, and with that, I decided it was time for a second opinion. This time, I searched for a doctor who had no major interests in a giant hospital, one who was independent, but had been a P.O. for a long time.

We found a great clinic close by our home, made the initial visit, and of course on the forefront was Maggie's real need for surgery. The doctor said she did not need surgery as it would only be for cosmetic purposes, and that her eyes are still growing and changing. What a relief this was to know, that this doctor gave me the truth! Of course every child is different with this situation, but if the first doctor recommends surgery get a second opinion!

The other problem I shared with the doctor was Maggie constantly tore off her eye patch, and they are not cheap! That is when the doctor pulled open her drawer, and cut a small oval patch from contact paper and placed on the inside of her lens. This is the perfect solution for kids who peel off the patch, and it does not irritate the skin!

After 8 months of patching, Maggie's last doctor appointment on March 4th revealed that she no longer needed patching at all. In the last 18 months of dealing with her amblyopia, we have gone through 4 pairs of glasses, managed to patch almost every day, and avoided surgery. Her amblyopic eye has shown significant improvement. She has become accustomed to wearing glasses, although she does have the non-breakable plastic lenses with the elastic strap around the back (at least for now).

She sees the P.O. in June for a checkup, which will be a regular occurrence throughout her childhood. I think about the day she was diagnosed, but no longer am sad. I am grateful that we caught it early on.

2 comments:

  1. Thank you for sharing Maggie's adventure. I'm inspired by it that she has made such huge gains in really a relatively short period of time.

    I too cried when Belle was given the Dx. I talked with 2 of my close friends who have little girls in glasses - both have other eye issues (not amblyopia) but similar - esotropia, strabismus, etc and they too told they cried. I alternated between crying, panicking and feeling guilty. I keep thinking for the past 4 years my child hasn't "seen" the world the way she could have. I too am thankful that they did the vision screening at her pre-k by the "Commission for the Blind and Visually Impaired" for the state because it hadn't been picked up by the pediatricians office or regular school nurse screens!

    I especially love that Maggie told you "I see you!" after getting glasses. go maggie! go maggie!

    Those blue glasses in the picture are really cool looking. When you make the contact paper patches do you occlude the side/peripheral vision in any way? I'm thinking Belle will cheat - she's really a fun kid :)

    Oh and Love the crazy curled blonde hair - it looks very much like Belle's which is why most of the pictures you'll see her hair is pulled back in some way!

    Is Maggie in Pre-K yet?

    Thanks again and I look forward to hearing more about Maggie's adventures!

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  2. You know, the P.O. told me that if the patch wasn't staying on (Maggie was 2, so reasoning or pleading with her was not an option), that the contact paper was the next best thing. From what I understand, the younger it is caught, the faster and easier it is to correct. At her last appointment, Maggie was able to identify the letters correctly, with the exception of tiny letters with her glasses on. The P.O. did say that it was possible she will have to dialate her eyes next appointment to see if her prescription needed to be changed. I am hoping the change is for the better!

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