November 1998 - We now enter what I think of as the scariest part of this disease – Amanda developed uveitis, which is essentially arthritis in the eye. The way it was described to me – the tissue in the eye is similar to the tissue in a joint in the way it becomes inflamed. What is so insidious about this is that it isn’t always noticeable and can often do some major damage before it’s detected. It is recommended that children see an opthamologist every 3 months to ensure nothing is brewing in the eyes.
I recall sitting with Amanda at our kitchen table which is beside a large bay window. We were playing Patty Cake or some hand game when I noticed her eyes didn’t dilate together. It raised some alarm bells for me but we had an appointment scheduled with the local opthamologist anyway, so I figured it could wait for a week or so. When we get to see the doc, it is immediately apparent that the playing field has changed. His manner has always been abrupt and unfriendly but it becomes obvious that he’s taking much more time in looking at her eye. The severity of uveitis is rated on a scale of 1 to 4 – 1 being fairly mild, 4 being serious. Amanda’s left eye flared to a 4 very quickly. She was started on a steroid drop to try to control the inflammation.
When dealing with eye arthritis, it’s a constant juggling act. The steroid drop that’s necessary to control the flare can also cause pressure problems, a.k.a. glaucoma. So what dose do you put a child on – it has to be enough to quell the inflammation but not enough that it cause a rise in the intraocular pressure. The steroid constricts the blood vessels in the eye to decrease the inflammation. However, that also can constrict the fluid draining mechanism in the eye so the fluid that your eye constantly produces builds up causing high pressure. Well, sure as God made little green apples, that’s what happened to Amanda. The steroid drop was a powerful one and it made her pressure rise to the high 20’s (15 to 17 is normal). She was then put on glaucoma drops as well. Even with the addition of the glaucoma drops, the pressure in the eye wasn’t dropping. We then added an oral diuretic to try to drain the fluid from the eye that way.
The roller coaster was out of control and we couldn’t seem to get off. The flare wouldn’t calm down and the pressure wouldn’t come down. Our local opthamologist suggested we see a pediatric opthamologist at HSC. We were put under the care of Dr. Alex Levin, a very gifted physician. He was very patient with our numerous questions and he made Amanda feel at ease. He recommended we start Amanda on a different steroid drop – one that wasn’t as powerful as the other one so it might help the pressure come down. The down side of that was she would have to be on double the dose. We entered eye drop hell! Amanda was having 25 eye drops a day – pretty much one every half hour while she was awake. Amazingly enough, Amanda took this disruption in her day in stride as well. She was in full time day care and her sitter Marg took that time to give Amanda two minutes of undivided attention. The doc recommended that, after Amanda had the eye drop, she had to pinch the bridge of her nose at the tear ducts for one minute. This would help keep the drop in her eye, preventing it leaking it into the tear ducts, and hopefully making it more effective. Marg would give Amanda her drop and snuggle with her for one minute so Amanda got a bit of extra attention – could be why it didn’t bother her so much getting them!!
We fought the battle for a couple of months before it was decided we needed to introduce a new weapon in our arsenal – methotrexate. This is an immune suppressant medication. Dr. Levin suggested that this might be the only way to truly get her flare under control. Dr. Levin needed some guidance on dosage so we went to the rheumatology department. Unfortunately Dr. Feldman wasn’t in so we spoke with a rheumatology fellow. She was very nice but I really wanted to speak to OUR doctor.
Amanda was given a very low dose of methotrexate, in pill form, to see how she tolerated it. We crushed it up and gave it to her in yogurt. Unfortunately we had a battle on our hands to get her to take it. The pills are very bitter and she balked at the weekly dose. We begged, cajoled, scolded, pleaded – anything we could to get her to take it. Every session would end in tears – hers and mine. Part of the reason Amanda would give us grief to take it was the pills upset her stomach. Sometimes she would vomit, others she would just feel ill. We always gave her the meds on a Friday night so she would have Saturday morning to recover.
Fortunately, after several weeks, the methotrexate started to take effect. It’s a powerful drug, only administered once a week, but it takes several weeks for it to build up in the system to get the full affects of it. We were able to decrease the number of drops she was on to 15/day – a little more manageable.
Unfortunately, when one thing gets under control, another flares up! Her joints were again sore and swollen and we made a trip for one more set of joint injections. We’ve tried to make the whole process a little fun for Amanda – we would often spend the night before in a hotel close to HSC so we could go for a swim the night before. And we’d usually squeeze in a visit to the Eaton’s Centre Disney Store!! Disney can be a cure-all for a number of things!
There are some things that are crystal clear in my mind – her initial diagnosis, her first joint injection, her first trip to Disney – while others are blurred around the edges. Whether this is my brain’s coping mechanism or I’ve subconsciously convinced myself that those things don’t matter anymore, I don’t know. But there are periods of this journey that is all just a blur of doctors’ appointments and medications – viewed like a show you’ve taped and are fast forwarding through the commercials. So I’ve hit the fast forward button and we’re moving to the next “clear” segment.