I know that many of you have followed Sarah's medical journey since the very beginning when her disease reared its ugly head back in 2013. I haven't written about Sarah in a while, and wanted to catch you all up on how she has been.
Back when we were living in Portland she began to notice some changes in her left leg, specifically her calf. She noticed that her calf would intermittently become numb. There was no apparent rhyme or reason for this - it just happened and then would dissipate after a while. Months later she began to notice that the numbness was sticking around for a longer period of time until it no longer went away at all. We informed her doctor at the Cleveland Clinic, and it was determined that we should keep an eye on the numbness, but that there wasn't really much that could be done. The numbness wasn't bothering her ability to get around; it was more of an annoying sensation for Sarah than anything. Other than that everything else stayed the same - no changes in her vision, no other symptoms of her disease such as incontinence, paralysis, cognitive issues (no major ones anyway), etc...
Fast forward to our move to Indiana. Shortly after moving here Sarah began to complain of her left knee aching. Honestly, I thought it was growing pains. My legs would ache when I was little and I thought that she had just inherited this leg pain from me as her body shot up to the 5'8"+ height that she is now. She also began having some cognitive issues. It was hard for her sometimes to get her brain and her mouth to coordinate properly, so that her mouth could speak what her brain wanted to communicate. She would begin a sentence only to stumble on the words in the middle of it. It was like the connection between her brain and mouth was too slow and she couldn't get out what she needed to. It was very frustrating for her.
She had an MRI back in August of 2018, along with a follow up visit with her neurologist at the Mellen Center at the Cleveland Clinic. She was tested for a newly diagnosed disease called Anti-Myelin Oligodendrocyte Glycoprotein (MOG). This result came back positive. We finally had an official diagnosis. MOG was originally thought to be a subset of MS; then it was thought to be a part of the NMO spectrum. Now it is its own thing. The good news about this diagnosis is that (from what I read) unlike NMO where you end up developing multiple autoimmune issues, MOG patients just have MOG. The bad news is that it is still similar enough that Sarah has a lifelong rough road ahead of her. There are eight(8) main symptoms with MOG (and multiple non main ones): loss of vision, loss of color vision, paralysis, paraparesis (weakness) of limbs, loss of sensation, loss of bladder/bowel control, severe bladder retention, and seizures. (A great link to more information about MOG can be found here.) Other than this new diagnosis, we were told that Sarah was stable enough that she would not need to be put on any medications and that there were no new brain lesions showing on her MRI. Her doctor did request that she be seen twice a year now instead of once a year just to be able to keep a closer eye on her disease.
Our lives didn't change much with this new diagnosis because Sarah was doing well and the symptoms (minus the seizures) are all pretty consistent with NMO. We were already mentally versed in the severity of the disease living within her. The only thing that really changed was the name.
In February of this year, Sarah came out of remission and suffered a relapse. Her left leg began to get incredibly weak. She could not go up and down our house's set of stairs more than once or twice because her left leg would give out. She did not want to be out in public because she was afraid her leg was going to give out. It was shaky, weak, and unreliable. If this was not disconcerting enough, Sarah had her first seizure (a grand mal). I will spare you the details, but suffice it to say it was the scariest moment of my whole life.
An MRI would later show that Sarah had one, possibly two, new lesions on her brain. An EEG also revealed that her brain was slowing and leaving a fluid that is known for seizure activity. She was immediately put on Keppra. For about two weeks life was really scary (as it was later explained to us by a pediatric neurologist specializing in epilepsy) because was having side affects of the Keppra entering into her system while also experiencing auras (the sensations one feels prior to having a seizure).
A hospital visit was required both the day of the seizure and an over night stay was required the following week for her usual three day round of steroids to fight the inflammation.
After receiving approval from our insurance company, Sarah began her first round of a chemotherapy drug called Rituxan that is used off label to treat patients like Sarah. She will have the infusion twice a year for the foreseeable future. The purpose of Rituxan is to put her disease back in remission and keep it there. She will be having a follow up MRI in three months time to see if the medication is doing its job.
Sarah is in good hands medically. We found a wonderful pediatrician that is overseeing her care here locally. She also has a local pediatric neurologist that will follow Sarah's Mellen Center neurologist's lead in the event of emergency hospitalization, so that it cane be done here in Indy instead of having to travel back to Cleveland in the event another hospitalization is needed. She is also going to continue her care with her neurologist at the Mellen Center and is also being seen by a world-renowned pediatric neurologist who specializes in epilepsy at the Cleveland Clinic. She has an amazing nurse practitioner overseeing her Rituxan infusions.
As always, I am trying to find out what I can do to help Sarah's body heal. The nurse practitioner connected me to a hippie doctor at the Cleveland Clinic who specializes in autoimmune diseases. I am now reading a document on his beliefs in how exercise, diet, and emotional health play a huge part in staying in remission/healthy. I am very thankful that I came across his work because he makes me believe that there are things that I can do to help Sarah fight this monster that lives inside her.
Sarah's spirit goes back and forth. Some days she is really hopeful that all will be alright. Other days she feels that she has no hope. As you know our family word is 'Hope' and through this relapse Sarah has chosen a second word that is more meaningful to her and that word is 'Courage'. I cannot think of a more perfect word for my daughter.
Her leg weakness seems to be getting better. Although, like every other time she has come out of remission there is residual damage that most likely won't go away. She has only had that one seizure - which is so awesome - but all of her neurologists have warned us that there will most likely be more in the future. Her current does of Keppra is very low and while it is working right now, it most likely won't stay that way.
We are hopeful that we can put this beast to bed again, and are thankful for the four and a half years we had in remission.
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