We are have now entered a fork in the road and we must make a choice of which road to go down. Each road carries risks for Sarah, but each path also carries potential advantages. Choosing which path to go down, I can say without a doubt, is going to be the hardest decision I have ever faced in my life.
Sarah is at a point where her vision should be getting better....but it's not. Her Optic Neuritis should have been cleared up after her previous encounters with the steroids she was on. She definitely should have had her vision restored after her first dose of IVIG in July...but she didn't. No one (meaning the doctors) can figure out why this is. Her vision does get better, but it never goes back to the way it was prior to the onset of this disease.
When she had her last MRI it was important to determine if she had new lesions. From what I understand (and I am realizing I understand very little about Pediatric MS) if any new lesions were found this latest vision loss would most likely be the result of a new exacerbation. A new exacerbation would be a bad thing because it was so close to her last exacerbation. The more relapses (or exacerbation) one has in the first two years of an MS diagnosis (I have been told anyway) generally sets the tone of what her life with this disease will be like. More relapses means more damage to her brain and spine which means more eventual disability. Among the disabilities one can develop with MS are:
Heat Sensitivity
Extreme Fatique
Paralysis
Loss of bladder function
Tingling of the Limbs
Mental Changes Such as Forgetfulness
Epilepsy
Depression
Loss of Vision
And these are just some of the things that Sarah has the potential to face. Because of this disease she is already experiencing loss of vision, fatigue, heat sensitivity, and muscle spasms. If this last bought with her vision is a new episode it causes me great concern that she will quickly add other items on this list to the things that she is experiencing, and that it something that no one wants. On the other hand, because her vision was never fully restored to being with this last bought with her vision could just be a continuation of her first episode from back in May. (Optic Neuritis can last up to 6 months in some people.) There is the potential that if we could just kick this case of Optic Neuritis to the curb that she could be symptom free for years to come.
So, I was very sad when the neurologist overseeing her care in the hospital told me that a new lesion was indeed found in her brain, but that it was not an active lesion so it most likely was not causing this flare up. (I had no idea that lesions were active/inactive.) We were also told that some of Sarah's lesions were getting smaller, and that some had even gone away. (Again, I had no idea this could happen either. I thought once you had a lesion it was there forever.)
The neurologist in the hospital was quite frank with us, and told Bob and I that because there was a new lesion on Sarah's brain this was most likely a second episode with her MS. (He did also say that he could not be positive of this though especially since the new lesion was not active.) He recommended that we follow her Cleveland Clinic neurologist's advice (or strong urging) that we place her on Avonex because this drug is known to slow down relapses. He said in Sarah's case, if this new bought of vision loss is indeed a second exacerbation then she is on par to have 4 relapses a year. He reminded us that every time she has a relapse she pays a price because every relapse causes more damage to her body. He told us that if we do not treat her with something such as Avonex her chances of being blind by the time she is 28 are very great. He told us that she most likely will never be able to see what her wedding dress looks like and she will never know what her newborn child looks like. (At this point in the conversation with him I started to tear up because his words just sucked.) When I questioned him on the side effects of Avonex (which are lengthy and very serious), particularly on chance of her sustaining such great liver damage that she would need to be on a liver transplant list, he said that he can only go on probabilities. He said that because the probability of her losing her vision is greater than her chance of needing a new liver (although he did recognize that both could very well happen) he would put her on Avonex anyway. He told Bob and I that he would feel good about his decision to put her on Avonex, even if down the road she needed a new liver, because at the time he made the decision to put her on it he was basing his choice on the greater probability of her losing her vision. Now, all of that makes perfect sense to me - IF I was looking at this from an objective point of view, but because I am Sarah's MOTHER, objectivity goes out of the window. Needless to say, on Friday evening I was a hot mess. I felt like a terrible person for wanting to see if we couldn't just try to change a couple of things in our diet and make sure she was getting the supplements she needed (which have been shown in some to work), BUT I also felt in my gut that putting her on Avonex right now is not the right thing to do. I was starting to feel like a crazy person, and doubting all of my intuition until....
Dr. L (Sarah's ophthalmologist) came by to see her on Saturday morning. He did her usual eye test and determined that her vision is getting better, albeit at a slower rate than before, but getting better all the same. When I talked to him about what the neurologist said the day prior, and what my gut feelings were about Sarah's situation he agreed with a lot of what I had to say, and also put my mind at ease about several things. He told me that, he too, feels that this bought of Optic Neuritis is just a continuation of her first episode (which would mean that she is NOT on par to have 4 episodes a year), and that it was never treated with the right amount of steroids. He also let us know that it is very, very rare for someone who suffers from Optic Neuritis to lose their vision as an adult, and even more rare as a child. He did concede that Sarah is going through something unusual with her vision, and that the doctors that treat her will need to think outside the box in order to get things under control. The thing that made me feel the best though was when he told me that when it came to putting Sarah on Avonex that I needed to trust my gut. He told me that, in his experience, mothers are right 99.9% of the time. I felt a huge weight come off of my shoulders, and I almost started to cry. Here was a well respected top doctor in America, who was not shoving western medicine down my throat, but was instead is telling me to follow my intuition. What a Godsend this man is.
So, for now we are going to look into different supplements and diet. It is not that I would never put Sarah on Avonex - because I would. Because of the side effects though, I feel that it is my job as her mother to look into every non-evasive treatment option that I can (within reason). If diet, exercise, and supplements (like Vitamin D and Omega-3's) don't help her and in February for her next MRI (God help us!) she is getting worse, then yes, I would be willing to try something such as Avonex. It is so hard to make decisions that go against the grain especially with something as serious as what we are facing with Sarah. It would be so easy to just go with the flow, and have put her on this medication months ago when it was first recommended to her. It makes it even more difficult because I am not making these serious choices for myself, but rather my daughter, who at 8, cannot legally make these choices on her own. But I have to trust my gut that this is not the right time for her to go on this medication. We have talked with her about it, and given her the choice. Explained the potential consequences to her as well. She is on board with not starting Avonex right now, and so we will choose the alternate road for now. The road less traveled.
These decision that we are making for Sarah are horrible, terrible decisions that I never thought I would have to face as a mother. I hope and wish every day of my life that Sarah understands why we made the decisions that we did for her. I hope that she never gets angry and resents Bob and I for the choices we have walked her through. All I have is hope. Hope that she will know that we made these choices with her with the best information that we had at the time. Hope that she will understand that every choice presented to us had decisions that were made based on our love for her and the desire to give her the best life possible. Thanks goodness for Hope. Without it I would be lost.
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