Here is what she explained to us:
1.) Sarah does NOT have Multiple Sclerosis. The type of lesions on her brain are not consistent with MS. Another indicator that she does not have MS is that MS patients with optic neuritis only have paleness around the edges of the discs in their eyes. Sarah has paleness in the entire disc in both eyes. Also, Sarah did not have any Oligoclonal bands in her spinal fluid.
2.) Sarah has NMO, but not a typical NMO. Most NMO patients have both optic neuritis and transverse myelitis. Very rarely do patients have just one or the other. Sarah is one of those rare cases because she has not had any lesions show up on her spine (which is what causes the transverse myelitis) and because she has not had any symptoms of new lesions forming such as loss of leg and arm movement, loss of bladder control, etc...Dr. Guttman diagnosed Sarah with a type of optic neuritis called: CRION (Chronic Relapsing Inflammatory Optic Neuropathy). There is very little information out there on this disease, and what I did find confused me a bit because the literature led me to believe that you couldn't have CRION and NMO - that NMO had to be ruled out in order to be diagnosed with CRION. I double checked with Bob to see if he understood Dr. Guttman the same way that I did in terms of diagnosing Sarah as being on the "NMO spectrum" (her words) and having CRION and he did. So, I don't know if knew research has shown that a patient can have both or what, but this is what Dr. Guttman diagnosed her with, and this woman knows her stuff.
3.) Sarah's vision loss, for the most part, is permanent. She had an eye test done today while at the center that shows the amount of nerve damage and atrophy on her optic nerves and the discs and it is pretty bad. Dr. Guttman told us that the damage that is showing on this test is permanent, and that our job now is to save what we have left. She may have slight improvement, but she will be considered legally blind from here on out. (Another test she had showed vision at 20/800 in each eye - which is a slight improvement in her right since she had no vision in that eye just a couple of days ago. This is the type of progress that we can expect, but long gone are the days of 20/100 or better vision.
So, what does this mean for Sarah and for our family? For Sarah, this means an increase in her medicines and IVIG every 3 weeks. The point of doing IVIG so often is to keep the NMO at bay. Studies have shown that maintenance IVIG can help prevent relapses in NMO patients. For the time being, Sarah will be going to the infusion center every 3 weeks for a 4 day stint of IVIG. This will last at least 6 months. Her dose of vitamin D was increased to 50,000 iu's weekly. Her prednisone was upped to 10mg every other day. Her Imuran is increased to 150 mgs daily, and her vitamin B is going to have to be administered by injection once a week for 2 months and then if her vitamin B levels increase she can move to the sub-lingual form.
As for her mental spirit - she is doing rather well. She can see shadows and some things that are in a close range, so she has been able to visit with a friend or two since her last relapse. She cannot ride her bike on her own anymore, and has to be accompanied everywhere, but that is a small price to pay to be able to ride to a friend's house. At least she can still ride her bike.
She is such a trooper, and I admire her strength. Her attitude is that she will just get used to her eyes the way they are, and then she will move on. She will learn to adjust to them, and make her life her own even with the visual deficit she has. Kids are pretty cool. My girl? She is REALLY cool.
Dr. Guttman was very good at explaining that with NMO there is no one way to treat all patients. The disease is different in everyone and so all that doctors can do is go by what works for most patients, and then alter the treatment as needed for each individual.
As for our family, we will learn Braille. I found a great on-line braille bookstore and have already found the first book I am going to purchase. We are also going to seek out counseling again - it has been difficult to acquire counseling either because the facility does not offer the type of counseling we need or the facility is not returning my calls, but either way I am going to step up the efforts on my part to make sure we get the help we need. Josh, in particular, has been a mess over this latest relapse. My heart breaks for him in a million pieces. He has volunteered himself to be his sister's keeper, and I while I am honored that I have a son who loves his sister so much he is willing to take on this huge responsibility I want to make sure that it is not too much of a burden for him to bare.
I am doing better. My husband and I make a great team, and he has been amazing throughout this last couple of weeks. He carried me last week and this week when I needed him to, and he didn't try and fix anything. He just let me be, and offered a hug and a shoulder to cry on. I am sure I will return the favor for him when the time comes.
We will be selling our TV/DVD player because we have made the decision that if Sarah cannot watch TV we will not be watching TV. We want to be a unified front, and this is one simple way we can support Sarah and show her that we are one unit. (So, if when my children come over to your house all they want to do it watch TV you will know why.)
We, as a family, will make it through this. There will be some amazingly hard, difficult, gut-wrenching times ahead - I am no fool, but I KNOW that we will be okay in the end. In spite of all of this heart ache we will find a way to thrive, and to allow our daughter to thrive. This is just a speed bump. That's all. Everyone has their tragedies - my family is no different than anyone else. Having heartbreak is part of the human experience. It may not be a sick child that you are dealing with, but maybe it is a divorce, or an affair, or the death of a loved one, but we ALL have our tragedies to live through. It is what we make of those tragedies that define who we are as people.
When things upset me I will allow myself to feel what I feel at that time, but I will not live in that deep dark place. Instead, I will stand up, brush the dirt off of myself, and be the example my children need me to be.
Things are looking up. Even if the view is not what I imagined it to be. It is the view I was given, and I will make it the most beautiful view I have ever seen - for me and Bob, but most importantly, for my children.
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