For the last two years AJ has been dealing with Uveitis in his left eye. We were shocked to find out at an appointment for some eye redness that he couldn't see out of that eye. He was immediately sent to a pediatric opthamologist where he was put on steroid eye drops (among others) to get the inflammation under control. His vision was 20/800. After weeks of eye drops every hour the inflammation was improving very slowly.
Many tests were run to figure out the underlying cause of the inflammation. Everything came back fine. Just like his mama, AJ seemed to be the Zebra.
After months of being on steroid drops a systemic medication was prescribed by Rheumatology. Methotrexate is typically a cancer drug but in small doses can treat inflammation. So I had to learn to give my 6 year old weekly subq shots. It was helping but not enough. We were able to taper down the steroid drops but could not get off of them totally.
Humira was then prescribed. It was scary having such a "heavy duty" medication ordered on top of the MTX but we were out of options.
Finally after months of shots and drops and sometimes bi-weekly eye appointments AJ was able to be totally off the steroid drops.
Finally in September on 2016 AJ was officailly in remission. No active inflammation.
Since then AJ has had multiple laser procedures, 1 cataract surgery and another to clear the cornea of calcification. We've made a trip to Boston to see one of the best Uveitis doctors in the world.
Treatment continues. That includes wearing a contact lens (the lens in his eye had to be removed with the cataract and because of the possibility of future inflammation an implantable lens was not recommended), a new bi-focal and patching his "good" eye to strengthen the left. He's still at an age where his left eye can regain some vision. His fantastic eye doctor was hopeful that he would be able to get useful vision back. He figured it would probably end up around 20/100. Well, AJ has been patching for months. He's up to 6 hours a day and at his last visit was at 20/60! An improvement from the previous appointment 10 weeks earlier where it was 20/80.
He's come such a long way and even his doctors are surprised at how far he's come. And all the while barely a complaint. He goes with the flow and does what he needs to do - 6 shots a month, hours and hours of patching and wearing his protective glasses. He can even put in his own contact now!
AJ does all of his patching at home. When he wakes up he puts in his contact in so he can get an hor or two done before school, so he can get all of his hours done outside of school.
Last night he had some reading homework. He was able to read the whole book (with some small print I might add!) with his patch on! This is HUGE! In the beginning he could barely see the tv with it on. Now he was reading. The happy tears were flowing for this mama!
I can't begin to express how proud I am of him. He's taken all of this in stride and usually with a smile on his face. All of his doctors love seeing him and are just as proud of him as we are.
His next appointment is in December. If there's been even more improvement we expect to continue patching to see just how good we can get the vision.
