I don't have really any news to report about Sarah which is both a good and a bad thing. Her MRI came back clean meaning that there are no new lesions, no active lesions, and the ones that she did have are getting smaller. This poses a bit of a problem though because she is still relapsing at a significant rate. Normally, a person such as Sarah would show active lesions which would be represented in her continual vision loss once she ends her steroid taper. Dr. Rensel said that Sarah's body could just be responding so quickly to the steroid treatments that her brain appears to be doing so well. She said that if an MRI was done when she was off of her steroids then it could have showed different results than the one that was done on Friday when she was well into her steroid taper.
Sarah is going to be on a 2.5mg dose every other day for the next 3 months to see if that keeps her relapses at bay. If it does not, then we most likely will up her Imuran dosage. Sarah's neurologist explained to us that with diseases such as NMO (or even MS) a lot of times it is hit or miss with medicine, and that it takes some time to find not only the right drug, but the right dosage as well that will effectively treat the symptoms one is experiencing and keep the disease in question at bay.
She will have a more in depth MRI in 3 months. We will look at taking her off her steroids at that time. In the mean time I am going to begin doing some research on my own to see if I cannot find something that maybe the doctors are accidentally over looking. Something just doesn't seem right. Dr. Rensel mentioned that she might be suffering from a second autoimmune disease relating to the eyes, and I want to see what I can find out there. Bob and I stumbled upon information regarding NMO before Sarah started to be treated for the disease, and thought that she might have it based on what we found out about it online.
Bob pointed out recently that Sarah had her best stint of health between mid-July and the end of October this past year. The weather here was warm and sunny, so we are curious to see if she remains relapse free again during the end of the summer months. If this is the case I think we will seriously consider moving to a warmer climate. If she remains relapse free as well over the course of the summer I would be more inclined to consider her as an MS patient. The weather seems to have more to do with MS patients (in terms of there being less people who suffer from MS in warmer climates near the coast) than NMO (location and weather seem to have no effect on incidents of people suffering from the disease).
She has been getting belly aches on and off again and can distinguish between a normal belly ache and a steroid belly ache. I will be keeping an eye on that because of the increased risk of developing an ulcer because of her prolonged use of steroids.
Finally, her vision is testing out at 20/100 on her left eye and 20/50 on her right. I am a bit discouraged by this as she has regained very little of her vision back since her last course of high dose steroid treatment. Her black spots are also an ever present nuisance and have also not gone away. If she relapses again I think I am going to seriously inquire about plasmapheresis again. I have brought this treatment up several times, and have been told that steroids are the only effective treatment for Sarah's acute state when she relapses, but based on information I have found online this just does not seem to be the case. I have read where there have been patients who have not responded well to steroids (which I would consider Sarah to be a part of that group since her steroid treatments are doing nothing to eradicate her eye issues as they are supposed to do) and those people do very well once they go through the plasmapheresis process. One thing I do know about that treatment is that it is very expensive. I have learned enough to know that hospitals (no matter what they may proclaim on their taxes) are big business where money is king. I can see getting push back on this treatment not because it doesn't work, but because it costs so much money. I don't know...
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Bob's birthday was pretty good. I signed him up for piano lessons to take alongside Josh. I also booked a 1 night camping trip next week to Mohican State Park. Just the 6 of us (and Lily too) and will heading out for a couple of days of fun.
The Great Lakes Brewery restaurant was a lot of fun. The kids loved the West Side Market and haggling with the vendors over their produce. We all agreed that I am better at scoring a deal than Bob. Josh was the most impressed by the variety and the environment. He wishes we could shop up there every week.
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