January 2008

New Year brings new issues...


One night in the beginning of January, while putting Jacob to bed he mentioned that his knee was hurting. I looked at it and thought it looked swollen. I had Jacob come downstairs to see if his Dad thought it looked swollen also. He did. Right then I knew the dreaded arthritis, that had been in remission, for some time had come back!

The Rheumatologist's appointment had already been scheduled for sometime late in February. This was only early January. I brought him in that Monday morning to see his primary care doctor who then placed him on Naproxyn.

January 16th... The knee was looking VERY swollen and hot. I was starting to get worried so I call the doctor at Floating hospital and moved up the appointment to January 16th. On January 16th, We saw doctor Laurie Miller. She was the rheumatologist on call. Jake had been on the naproxyn for approximently 2 weeks with no improvement. She decided that we should try indomethacin instead. It was a little more powerful medication. He also had to start on zantac because of the side effects of the medication on his stomach. Dr. Miller asked about when his last eye appointment was. I told her He is scheduled soon.

January 23rd... The opthamologist appointment. When we were going for this appointment I had a strange feeling that this time was going to be different. Call it mother's instinct I just knew it wasn't going to be good. Just prior to arriving at the appointment I had called the office to see when his last appointment was. He hadn't been seen since February of 2007! I wondered how I could of possibly missed a six month follow-up. When we were in the examining room I asked the doctor's technician if I had missed an appointment...why it had been so long. She said that the doctor had written down one year recall! The rheumatologist had just told me last week that he needed to be seen every 6months. They obviously had different time frames when he should of been seen. When the doctor came into the room and I explained that Jacob had pauciarticular JRA with a blood test of ANA+ he did his exam with the slit lamp. The slit lamp is the only way to diagnose uveitis. He took an especially long time looking into his eyes. He then said he sees cells present that would diagnose him as having uveitis. I had read only briefly into it before so I didn't know then what we were going to be in for. Jake was placed on Pred-forte eye drops 3x a day for 2 weeks then he needed to be checked.

The eye drops were interesting.. Jake had a very difficult time with putting them in. But we did I !

January 30th... We were scheduled with the rheumatologist, Dr. Lopez, Jacob's origional rheumatologist. We went into see him to review the situation. I had told him that we had seen the opthamologist and that Jake had uveitis. He was not happy that we had gone a year between eye appointments. The opthamologist should of kept him on a 6 month check even though he was free of arthritis symptoms because the uveitis can show up anytime. Jacob's knee was still pretty swollen but he wanted to give it more time to see if the new med. would work. He wanted to see him back in a few weeks to decide if we should do another cortisone injection.

In the mean time.. I had been doing a lot of research on uveitis. I came across a website www.uveitis.org that a doctor called C. Stephen Foster MD put together. Dr. Foster was the founder and president of the Ocular Immunology and Uveitis foundation right here in Cambridge, Massachusetts. His website is fascinating and filled with tons of information. I discovered then the seriousness of the eye condition that my little boy has.

What is uveitis? Uveitis is rare, serious medical condition that can blind a child if not treated properly! It is estimated that there is only about 38 cases of this out of 100,000 people!! The uveitis is an inflammation of the uvea in the eye. The scary thing is there is no symptoms until there is permanent vision loss. I just think of the what if's if we never went in to get that diagnosis. The treatment for this can be very complicated when a child has a rheumatic disease. The first step of the treatment is the steroid eye drops. We were on the right track! The only thing we needed to watch for though was for the side effects of the drops which are cataract formation and increases in intraocular pressure.

February 6th... The return visit with the opthamologist. Were the drops that Jacob took so bravely working? The doctor had great news today, he looked into Jacob's big beautiful eyes and said "No MORE CELLS". Wow I thought that wasn't as bad as I had read. He said we could start to taper the drops. We were instructed to go from 3x to 2x a day. I had told him that I had read up on a doctor who was a uveitis specialist in Cambridge and I wanted to get another opinion on it. He seemed surprised but he said let him take a look and see what he thinks.

February 8th.. Jacob has conjunctivitis, and bad! Both of his eyes were shut! Out of school today. I called the opthamologist back and he wanted to see him. I brought him in and he said we should up the drops back to 3x a day because the conjunctivitis can sometimes affect the uveitis. Drops down to 2 a day, for a day, back up to three already! Anyway we were seeing Dr. Foster next week.

February 15th... I had been anxiously awaiting the appointment with Dr. Foster. I told Jacob that this doctor was tops around for his new eye condition. We woke up early this morning to beat the traffic into Boston. We arrived promptly at 7:30 for his 7:45 appointment. There was a bit of a wait , but not too bad. The technician took down all of our past history and did a few eye exams. Dr. Foster's fellow then came in and did a more thorough history. She did some more tests. Jacob was so brave doing all of those. I was thinking should we really be here? We were just told a week ago things looked great. Maybe his case wasn't as difficult and it was unnecessary to come all the way here for such a mild case.

Dr. Foster was next to come into the room. He was a very pleasant doctor. He wanted to know what we knew about the disease. I had told him the round of steriods we were doing and that the other opthamologist wanted to start weaning him off. He looked into Jacob's eyes. The left eye presented with 2+ cells and the right 1+. The rating scale for uveitis goes from 1-4. Jacob's eye were considered a moderate case. Dr. Foster said that we had to be extremely aggressive to fight this. I wondered how could he have this when we were just told a week ago all looked well! Thank God I we went there today!

Dr. Foster immediately increased the pred-forte drops to SIX times a day! And said he needed to go onto a drug called Methotrexate. Methotrexate is a chemotherapy. It is an immune suppression drug to try to stop his body from attacking his eyes. He said we were to have the Rheumatologist prescribe it when we saw him next week. His eyes would be number one to fight for at this time. The knee is secondary. The medication will come with some side effects though.. nausea, possible vomiting, tiredness, hair thinning and lowered immunity. All this info was so overwhelming. Drops 6x a day, now school had to help and the effects on his little body from a chemotherapy now. The Rheumatologist will start this poison next week. Return to Dr. Foster in 2 weeks or so.