After speaking with many patients, several requested that I set up a place where they could tell their stories. I have set aside this area so that their stories, in their own words would be relayed to the world. The following are the patients' unedited comments. In addition, several of these patients have included their email address so that should you have questions/concerns/etc. and would like to get their perspectives and experiences, you can send these requests directly to them. They truly understand what it is like to be in a similar position as yourself and are eager to help in any way they can. I hope that you find this patient perspectives area useful.
I am the proud grandmother of six-year-old Isaiah who happens to be severely myopic. At the age of about two, we took Isaiah to an optometrist for his first eye exam and were horrified to learn that he was already approximately -5.00 diopters in both eyes. We were immediately referred to a specialist, a Pediatric Ophthalmologist, who began treating Isaiah's nearsightedness with glasses. For the next three years, we had regular appointments with this doctor (about once every 4 months) but despite all that attention, the glasses only "corrected" Isaiah's vision to around 20/45. We also noticed that Isaiah's peripheral vision was very poor, probably due to the frames of the glasses getting in the way. The worst thing of all, in my estimation, about the treatment provided, was that it did nothing to stop the myopia from creeping forward. And creep it did! In January of 2007 we had, what later turned out to be, our last appointment with the Pediatric Ophthalmologist. At that appointment, we received another prescription for stronger glasses but this time it was -8.75 in the left eye and -9.50 in the right eye. Isaiah was already legally blind and progressing swiftly!! We felt quite helpless and hopeless, to say the least. I wondered to myself: If Isaiah's sight was this bad at five years old, what would it be at ten , at fifteen, or even at twenty?? I was terrified that my precious grandson would end up totally blind by then! Through tears I told my husband that there had to be something or someone out there that could help with this situation. I am not only deeply concerned about Isaiah's long term prognosis but concerned also about his daily vision. He was just starting to learn to read and he was not seeing very well with the glasses.
I began to do research in earnest. I got on the web and read and read and read. I joined eye care discussion forums and communicated with others in similar (often worse) situations. I learned a lot. I discovered that there are differing opinions among the "experts" but that there are a number of experts who adamantly believe that glasses not only do nothing to slow the progression of myopia but actually hasten its progression. This was totally a new thought to me and I wondered why I had never been made aware of this premise. Could his glasses be why Isaiah's myopia was creeping up so swiftly? My research on effective treatment options kept turning up a common thread and that was that most doctors, certainly not all, believe that contact lenses are the best treatment for children's myopia and that contact lenses can be used even on the very young!! Who knew?! I then kept coming upon information about a special contact lens called custom Orthokeratology (ortho-k for short) This seemed to hold a lot of promise. There were parents on discussion boards who used it for their children and said it really helped vision and slowed progression. There were doctors and researchers who highly recommended it because several studies pointed to it as possibly the only thing that can halt or slow myopia's progression. I was so excited to learn this. Maybe Ortho-K could help my grandson! But wait, oh no, it states on many web sites that, although it is suitable for all ages, it's only recommended for those with -4.50 diopters of myopia or less! Fortunately, I then came upon Dr. Maller's web site. I was pleased with how informative it was and just from reading it I could tell that the doctor was an expert on Ortho-K , custom Ortho-K and all things eye and contact lens related! I soon emailed Dr. Maller and told him about Isaiah. He personally emailed me right back. He told me that he would love to meet us and examine Isaiah's eyes. He didn't hold out unrealistic false hope but told me that he had used custom Otho-K successfully on patients as severely myopic as Isaiah but that he would determine Isaiah's situation at the time of the examination.
In March of 2007, we had our first appointment with Dr. Maller. Wow! I was immediately impressed! Dr. Maller examined Isaiah and concluded that he was an excellent candidate for custom Otho-K. He explained everything from A to Z and answered all of our questions patiently. He is extremely knowledgeable--a true expert in his field--and yet never, ever talks down to the layperson. He took so much time with us that I couldn't believe it. With other doctors I've visited--eye and otherwise-- I've always felt rushed and sort of like just a number or something. But Dr. Maller was so caring and compassionate that we felt like Isaiah was his most important patient ever. We committed to the treatment and couldn't wait to start the process. Dr. Maller completed all the measurements and information gathering so that he could begin to design Isaiah's custom lenses. We would return in a couple of weeks for the fitting and instructions. Isaiah was also excited as he really likes Dr. Maller (The doctor is wonderful with kids) and enjoys looking at all the eye cameras, computers and gadgets in the examining room! Our appointment day arrived for Isaiah to be fitted with his new custom made Ortho-K lenses. Dr. Maller put the little lenses in Isaiah's eyes and sent us into a darkened room to wait for almost two hours. During that time, I read stories to Isaiah while he kept his eyes closed. We were then directed to the examination room, at which time Dr. Maller removed the lenses and began evaluating the initial results. He performed an eye test on Isaiah and amazingly, after only two hours of the lenses working on Isaiah's eyes ,his acuity was already around 20/40! That was better than we got with glasses and they were in his eyes for only two hours!!! We were all ecstatic, to say the least!!! The doctor explained that Isaiah would wear the lenses every night while he slept and that over the coming weeks, his vision would get better and better as the lenses would be flattening and reshaping the cornea. Once reshaping was completed, the maximum vision improvement would be achieved and then maintained by wearing the lenses every night during sleep, sort of like a retainer for teeth after braces. We were instructed on how to care for the lenses and how to clean and disinfect them. We learned how to insert and remove them. Some five year olds can even do this for themselves. Isaiah is not one of them as he would rather have his mother or I do it for him. No problem but I know he will do it for himself when he is older. My daughter- in- law and I quickly learned the procedures and both of us soon found them to be a real no-brainer. Doing Ortho-K for Isaiah is just a simple part of daily life--like brushing teeth or washing hands. Very easy.
We settled nicely into a daily routine with the lenses and greatly anticipated our next appointment with Dr. Maller , at which time we were to learn how much vision improvement custom Ortho-K and Dr. Maller had achieved for Isaiah. We didn't need to wait for the appointment to find out. Evidence was soon abundant that Isaiah was seeing better, in fact, better than he ever had in his whole young life! He no longer bumped into door ways, as his peripheral vision was now very good. He was soon sounding out the names on signs and street signs when he rode in the car--something he had never attempted before because he couldn't see them very well. He was now making most of his baskets while playing his little basketball hoop game whereby before he missed the majority of them. I could go on and on with examples. We were so happy to see all the evidence of improved vision! At our next appointment we did learn that Isaiah's acuity was now about 20/25 in his left eye and about 20/30 in his right eye. AMAZING! And to think that there is a strong possibility that these little lenses may be stopping or at least slowing down the progression of Isaiah's myopia . Another benefit is the improved self-esteem/psychological ones. Isaiah wore glasses for about seven months of his kindergarten year but already had been teased (classmates called him a "nerd" and one little girl, who I'd like to give sensitivity training to, called him a "weirdo") . He was the only child in his class of twenty students who wore glasses so that made it even worse. Ortho-K lens treatment removes all the teasing about glasses and no one even knows you wear the lenses because you wear them at night.
We have now been doing the Ortho-K for about nine months and Isaiah's vision is still very good. I don't want to paint a totally rosy picture as nothing worthwhile is completely smooth sailing. We had a few minor, minor setbacks but I must say, even if we had ,or will have in the future, major setbacks, we will persevere through and keep doing Ortho-K. We believe in it's benefits that strongly! One setback was when Isaiah developed a cold sore. We obviously had to suspend with the lenses for about 4 or 5 days to ensure that the virus didn't get into his eyes. During that time he had to wear his old glasses. One morning, about two months after getting the lenses, Isaiah refused to open one of his eyes. He said it burned and hurt. As it turned out, some debris was lodged, and once his eye was flushed with sterile saline, the problem was gone. It just was a little hard to get him to open his eye so that we could flush it! And very recently , a boy in Isaiah's first grade class accidentally poked him in the eye, with his finger. Isaiah came home that day holding his eye and complaining of discomfort. We were concerned and contacted Dr Maller for advice. In the end, it turned out to be nothing but it did cause us a little bit of angst. This brings me to another point that I wanted to make and that is that Dr. Maller doesn't just fit you for the lenses and you're on your own. He is with you every step of the way. In each of the above mentioned instances, we contacted his office and he got back to us in an extremely timely manner. He guided us through the problem by telling us exactly what to do to help solve it. He is very confident and you can tell that he has seen the problem or something like it hundreds of times before and knows exactly what will work to help the situation. I admit it---I tend to be kind of excitable, especially when it comes to my precious grandson's eyes, but with Dr. Maller's reassuring manner, even I calm right down!
In conclusion, I just want to emphasize that Dr. Maller and custom Ortho-K have been a true blessing for my grandson's vision and eyes. If you have a child or grandchild who suffers from myopia, whether mild, moderate or severe, please look into it. If you do, I believe it will turn out to be a real blessing for you also. If anyone is contemplating ortho-k for their child and would like to talk to someone who is experiencing it firsthand, please contact me.
Glenna
Palm Springs, Florida
If you would like to contact Glenna, you can e-mail her directly, here.
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