I signed up my oldest son for a clinical trial for his myopia in June of 2019. I have learned a lot since then about myopia, a sulfate called atropine that is derived from the belladonna plant, and the history of it all.

What’s myopia? It’s nearsightedness: one of the most common eyesight problems. For centuries. For the entire history of the planet. And it’s only becoming more and more common. People with this condition can’t focus their eyesight on far away objects, making them appear blurry. Nearsightedness affects about 40 percent of all people in the United States, according to the National Eye Institute. By 2050, it will be 50 percent of the entire population of the world. If you don’t stop it while you are kid, you can never reverse it!

Thanks to clinical trials in Asia that proved atropine works in arresting myopia, there are companies that have started trials in the US and the UK to gather more data. My son is enrolled in Phase III of the Champ Study – the last phase which will end in three years and hopefully result in the FDA approving the use of either 0.01 or 0.02 atropine drops in the USA for myopia.

But boy, this has been a long time coming. And so many people have suffered unnecessarily.

One of the earliest statements (that I can find) from a US trial on investigating atropine drops for myopia was in 1978. NINETEEN SEVENTY EIGHT. When people looked like this:

Okay so in Portland people still look like the 70s Microsoft team but you get my point.

The trial from 1978 stated this:

After all this time, through these tiny shards of proof that surfaced in the USA, and in other countries that very factually proved through tons of time and data fluffed with more facts, that atropine given once daily STOPS NEARSIGHTEDNESS in growing eyeballs of children, you still can’t get it prescribed easily to a kid in the USA before THEIR EYEBALL STOPS GROWING. And really it still keeps growing even past age 20, and might not truly stabilize until age 30. So imagine, if you know your child cannot see well by the age of two or three, you could have such a huge leg up on stopping their eyes from getting worse and making their quality of life SO MUCH better.

So Liam is now in this CHAMP trial that seems to be the final frontier for atropine, that might allow kids to be prescribed it sometime past the year of 2022. There are 483 kids enrolled in the trial at 26 locations around the world: 1) Barcelona, Spain 2) Berkeley, CA 3) Boston, MA 4) Budapest, Hungary 5) Coleraine, Ireland 6) Columbus, OH 7) Danbury, CT 8) Dublin, Ireland 9) Elkins Park, PA 10) Forest Grove, OR 11) Fullerton, CA 12) Kirkland, WA 13) Lancaster, PA 14)  London, Great Britain 15) Madison, WI, 16) Maitland, FL 17) Memphis, TN 18) New York, NY 19) Peoria, IL 20) Raleigh, NC 21) Rotterdam, Netherlands 22) Saint Louis, MO 23) San Antonio, TX, 24) San Diego, CA 25) Spokane, WA and 26) Tucson, AZ.

The CHAMP trial builds upon prior ground-breaking studies conducted in Asia, which demonstrated the safety and efficacy of low doses of atropine and concluded that low-dose atropine slows the progression of myopia in children. The CHAMP study is a 576-subject, randomized, placebo-controlled, double-masked study evaluating the effects on myopia progression in children, with multiple study sites located in the United States and Europe. The study duration is 3 years, with an additional re-randomization for a 4^th year of follow-up. Regulatory filing can take place after the 3-year endpoint has been reached. Management of Nevakar has held extensive discussions with both the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) on the protocol and study design and believes there is a clear path forward to regulatory submission in both the United States and in Europe. The CHAMP study represents the largest sponsored randomized controlled trial, to date, in myopia.

So it’s a pretty big investigation on atropine and we are part of it for 3 entire years. These three years hope to bring all of our children a halt to their eyes getting blurrier, blurrier and blurrier. And when they are older a heap of other things can happen with their vision because they have such bad cases of myopia.

But the question is, if this is known to work already anyway, why can’t some of us who have children with already very advanced myopia like mine, just get some atropine drops already? Of course I want to help and do this study, but so far his eyes are still getting worse during the study because we might have the placebo drops.

And so my newest can of research begins, the possible path to myopia healing.  There’s always so much to learn in so little time.

Liam’s current prescription -2.25 nearsightedness (myopia) in both eyes.

This is how these numbers work:

Myopia (-)

• 0.00 to -3.00 : mild myopia
• -3.00 to -6.00 : moderate myopia
• -6.00 and higher : high myopia

Hyperopia (+)

• 0.00 to +2.25 : mild hyperopia
• +2.25 to +5.00 : moderate hyperopia
• +5.00 and higher : high hyperopia

For a 5-year old, this amount of nearsightedness is getting to be pretty intense. Liam’s dad had a smaller prescription at this age. So I began a little research already to make sure the vision therapy I signed Liam up for is a good idea for worsening myopia, and if there is anything else floating around out there that we can try. There are some stories claiming that kids have reversed their myopia, and even adults have. Some have reclaimed perfect vision. Can I believe this? I am not sure yet.

A lot of people think that myopia is hereditary. In Liam’s case this might be true. But I think his iPad usage did not help. Here’s something I just read:

“…blurred distance vision is caused by overuse of the eyes’ focusing mechanism. After long periods of near work, their eyes are unable to refocus to see clearly in the distance. Constant visual stress may lead to a permanent reduction in distance vision over time.”

So… 🙁 Did a search on how to DIY correct myopia. One of the first things I stumbled across is this article. The main points are:

1. Put books, games or drawings farther away so the eyes have to focus on them. Don’t keep things close to the face. (This sounds like common sense, but we are guilty of having iPads too close at least. Everything else has been far away.)
2. Don’t spend more than 20 minutes doing something close up, like an iPad or a book. Get up and get away!
3. Keep lighting brighter in the house, cut the cozy. For my whole life, I’ve been living in cozy, dimmed quarters. (My parents were like that too.) So this tip makes me want to change all the bulbs right away for the myopia men in my life. In particular, the lamp next to where we eat dinner is too warm for own good. But am I supposed to put a really bright light in there? I guess cozy time has to begin at 7 PM only… and bright light the rest of the time. Hmm. Some articles mention that the types of bulbs used matter too. But in the end you can’t shine a light bulb on DNA. If cozy lighting was a problem, I definitely would have to wear glasses by now, but I don’t. (But the enlarged optic nerve in my left eye makes me a glaucoma suspect, and my dad is developing glaucoma, so there’s that.)
4. Have a lot time outdoors. And we do that as much as possible already. This is an obvious prevention and cure because kids are not focusing on anything close to their face when they are outside. Unless they are carving a duck out of wood. And you definitely need to take more breaks during that because of hand cramps, as opposed to playing on your iPad, so it all works out doesn’t it? P.S. Do kids in Florida develop myopia at a slower rate?
5. Increase sleeping hours. Liam sleeps really well for his whole life so far. But we could get him in bed an hour earlier, so we will.
6. Use glasses for only looking at the white board at school, take them off for everything else. Well, this completely undermines what our ophthalmologist said, which is to leave the glasses on all of the time. And when I think of how my husband also wore glasses his whole life, and my mom did as well, and how their vision didn’t improve – I have to wonder if this is true. Their prescriptions only changed for the worse, even if only in slight increments. I also remember Liam’s ophthalmologist commenting at how “great the focusing system is in kids” because they are really good at focusing up close and they take care of that for a long time without letting you know about what they cannot see far away. Liam never really complained about anything, we just slowly started noticing there was an issue.

So what would happen if we never got glasses and we worked on these natural, common sense changes? If he is already good at seeing up close, and therapy and life changes would help seeing far away again, doesn’t that seem better than training the eyes and brain almost to be lazy and use the glasses, therefore not being able to easily use the “focusing system” again, whether close or far?

It makes me very curious but for many of us life is already too busy to do experiments and add more layers on top. But then I read this,

“Researchers have discovered something about the progression of nearsightedness that is very interesting: conventional glasses and contact lenses that have been prescribed for years to correct myopia may actually increase the risk of myopia worsening throughout childhood!”

And it makes me wonder about adding that layer after all. Now both of my children are currently in this tender moment of time, where a big move can make a lifetime difference.

It’s a frightening decision for a parent as I reach deep into the peanut butter cup bag. Does this ever get any easier?

He can be called my husband, my bear, my love – or simply my best friend. His name is Daniel and if he reads this, he will blush a little and I’ll probably make sure to be very close so I can see. My guy has been dealing with eyesight issues for his whole life, but mostly since he reached his mid-twenties. His first surgery for strabismus was done by Dr. Robert Gold in Maitland Florida, when we lived there. Since that surgery, his double vision got worse, his depth of focus became unreliable to the point that seeing the edge of steps was almost impossible.

But in Portland we figured we would have even more experienced surgeons and finding the right person would never be an issue. We didn’t even have to research very much because someone we trust, one of the directors at the company my husband works for, told us it was a no brainer to go to Casey Eye Institute. She said that her mother had successful surgery there and recommended it wholeheartedly. We trusted her recommendation so much and hopped on board to get an appointment. We were placed with Dr. Leah Reznick. Her bedside manner is gentle and warm. Her knowledge and clarification is really spot on. She is a confident and educated surgeon. But the first surgery she performed on my husband was completely off. His double vision was worse than it had ever been in his life. It was the first time he ever felt truly depressed beyond measure about his eyesight – he saw how bad it could really be. And that feeling came from getting a surgery that was supposed to correct! When he covered one eye, the other went to one side, and vice versa. There was absolutely no convergence for his eyes. He would have been better off the way he was before surgery.

We thought she would get it right on the second surgery. She understood his eyes better than anyone else at this point. We were so sure.

But we were wrong again. She fixed the mess up of the first surgery which we are grateful for. But his eyesight is not better than it was before we first set foot into the doors of Casey Eye Institute. We understand that it’s common for some adults (and kids too) to have two surgeries, maybe even three. But we will not be doing a third surgery with Dr. Reznick. The more I read about scar tissue remaining after eye surgeries causing potential issues with future surgeries, I am not sold on surgery alone anymore. I am wondering if prism glasses (now that we are closer in diopters requiring a smaller prism) and vision therapy can help Daniel’s brain get his eyes back on track, without physically adjusting his eyes anymore.

I am now on this curiosity and success fueled search for the best eye surgeon in this entire country, or maybe even the entire world we live in.

The most decorated surgeon in Portland seems to be Dr. Claude F. Burgoyne. He is a current chair for Ophthalmic Research and Director of the Optic Nerve Head Research Laboratory at the Devers Eye Institute in Portland, Oregon. He is also a Clinical Professor of Ophthalmology within the Oregon Health and Sciences University. At this time in his career his specialty is glaucoma. But you can see Dr. Burgoyne’s list of achievements is quite the article to read.

I was curious about how many eye doctors are certried by te in certain areas of the US. So I did manual searches on this site and these are the hand copied results.

There are 177 physicians who have been certified in the Portland area.

In Florida, there were 150 physicians in the  Orlando area.

233 in the Miami area.

739 in Los Angeles area.

461 Chicago.

215 Tampa

468 San Francisco area

239 Seattle

1274 New York City

173 Minneapolis

129 Salt Lake City

591 Philadelphia

614 Baltimore, Maryland area

469 Boston