In November Ryland started complaining of his eye hurting. He tends to over exaggerate and that morning I thought that he just didn't want to go to school after the long Thanksgiving weekend. He was crying about his eyes hurting, but they were not red. He had an eye appointment scheduled for that week so we waited for his appointment because it was a busy week. During the visit, the nurse shined the light in his eye and he began to cry. Next the doctor comes in and uses the stain for his eyes and uses her fancy equipment to look in his eye and says, "Oh buddy, you poor thing" She finishes up spouting out eye doctor lingo to her MA and turns to tell me she believes he has a disease called Thygeson's-Thygeson's superficial punctate keratopathy to be exact. I knew right then and there that I wasn't receiving the Mom of the Year award.
Apparently, Thygeson's is a painful eye condition where there are lesions on the eye, but it is not red so that it is difficult to spot unless you knew what you were looking for. The doctor said that she had only seen it three or four times in her career. After a few weeks of eye steroids and lubricant, it had cleared up and he was doing much better. This was unfortunately not the only time that cousin Thygeson would visit Ryland.
Last week, his eye started hurting again and we went back to the doctor, a week before his scheduled follow-up appointment. Thygeson's had returned and now we are on another bout of steroid drops, this time more drops in the eye per day and for longer. The doctor said that it could be a long tapering of the eye drops, over months where we would be giving drops five time daily all the way down to giving one drop every other day. Even then, it could still return and we would need to go back up on the steroid. She also wrote a prescription for Restasis, which is extremely expensive and not covered by the insurance for children in most cases. Since we don't have an extra $600 just laying around every month to purchase Restasis, she also wrote for a compounded eye drop similar to Restasis that will cost around $65.
So far, with this last bout of Thygeson's the steroid drops four times daily (down from five last week) is doing well. His eyes are not hurting anymore and he is comfortable getting eye drops. At first, he would fight every single time, which is difficult when you have to give five to six drops in both eyes between the steroid and the lubricant eye drops every day. We then started timing him to see how fast he can get them done, and now he just gets them done with little trouble. Hopefully with all of the eye drops this will be a temporary thing to deal with and not a long term disease that we have to work on daily for years and years.
Do you have a story to share about Thygeson's? I'd love for you to reach out to me and share!
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