After a few years of having clear eyes, we found out yesterday that Jacob's eyes are flaring. Yesterday Jacob saw our local eye doctor for a quick check to order new glasses. Jacob had been complaining that he can't see far all of a sudden his glasses on. So I made the appointment to get a new RX and order new glasses. I was not at all expecting to hear that the doctor saw cells. He said that the right eye had 1+ cells, the left just a trace. Right after the appointment I called Dr. Foster's office and they had the doctor on call, call me right back. She advised me that we should get him into MERSI as soon as possible. They scheduled us for 7:45 AM today. After a 2 hour drive into Boston in the awful traffic, we saw Dr. Foster. He was concerned because when the tech took Jacob's vision it was very poor. He could barely read the big E with his right eye. Both eyes were significantly worse in vision. Dr. Foster asked the fellow to have him refracted (see if his vision could be corrected with another RX), dilated and a retina scan and possible angiography. Panic mode was setting in. Fortunately, after he was refracted they saw that his vision could be corrected and that the poor vision was more from the glasses needing an update than from disease. I don't understand though, because he was just there a month ago and his vision was fine. So how did it decrease that much in 4 weeks?
After the dilation, Dr. Foster looked again and he could see that the inflammation had not spread to the back of his eyes. So the treatment plan is to go on the steroid eye drops for four weeks. Starting 4x a day for the fist week, 3x a day for the second week, and so on. Then return in 6 weeks for a recheck. We are hoping the drops will kick this and that's all he will need for now. We have not discussed restarting any systemic meds yet. We now need to pray that the drops are only for this short time because he cannot be on those for an extended period due to his cataracts. The drops will worsen the cataracts.
I just can't believe this is all starting again. It's been four years since he has had a uveitis flare. He has been off the Humira for four months and it's back. It is so disappointing. So do these kids ever get off meds? The pictures are Jacob at age 9 starting Humira and him yesterday.
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4 comments:
I am just reading this now! I am really sorry to hear his eyes are flaring again. I will be praying the steroid drops work and that things quiet back down again for Jacob! Hugs to you....you are a great Mom! :)
Hi there. I found your blog while searching about uveitis. Mine seems to be trigged by gluten (since it's an inflammatory to those who have genes for auto immune disease). Hope he gets well soon!
I wonder the same thing..do they ever get off medication. I hope it's being controlled. It's such a roller coaster .
Thank you for your blog
What an amazing story!! Jacob is amazing:) My 4 year old recently had a positive ANA with ankle and knee swelling, so naturally I'm on the internet searching! I want to thank you for sharing your story. I've learned a lot from reading your blog. I will continue to stay tuned to Jacob's progress.
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