As so many of you have followed and joined our journey, we wanted to share where we stand now. Our sweet Virginia has been officially diagnosed as MOG (myelin oligodendrocyte glycoprotein) positive. Basically, MOG is the body attacking its own myelin, which is the outer covering of our nerves. There is no actual cure, we treat and manage. We went to Boston specifically for an appointment with Dr. Levy, who is the expert in the field of MOG. This trip had brought us so much anxiety for so many reasons, but when we sat down in his office, he immediately made us feel like we had known him forever, and that together we were going to make this happen.
He immediately confirmed her MOG diagnosis, and we started talking about a plan. He took us through all the options, and we decided that the best place to start was to put Virginia on CellCept for at least the next three years. He told us that CellCept would not bring any of her current symptoms back. He said that her body would need to do its best to heal that on its own. So, her left eye blind spot, loss of sensation in her legs, and loss of use of her legs would slowly get better on its own. We are hopeful that a lot of those functions could be back by the end of the year.
So, what is the CellCept for then? Well, he said it is going to suppress her immune system so that we can hopefully keep the body from attacking itself again. Meaning, it should keep any new flare ups or symptoms from happening. He was also very clear with us that this option is about 60% effective.
I also think it is important to mention that there is one treatment that has proven to be up to 90% effective. That is Intravenous immunoglobulin, (IVIG) therapy. IVIG is a blood product prepared from the serum of between 1000 and 15,000 donors per batch. It is the treatment of choice for patients with antibody deficiencies. However, due to the effectiveness of this option, there is a huge nationwide shortage. As I speak, they are working diligently to make more. So, I would ask, if you are looking for ways to help, please donate blood! It may not make it to IVIG production, but there is such a need, and it is such an easy thing to do if you can!
Dr. Levy has now said that we can have all of Virginia's appointments virtually from the comfort of our home. How amazing is that?!?!? Of course, unless he feels that we need to take it farther, but he is also willing to work with local neurologists to help get her any treatments she may need.
As her immune system gets wiped out a little more each day, we do have to be on top of providing her the healthiest environment we can. She did start 6th grade on time, and she has the most amazing teacher and school support. She is not allowed to share any supplies, she is not allowed to participate in heavy PE activity, and she has to do her best to keep her body temperature down. That was another thing we learned. The pool was such a miracle for her because, patients with MOG are severely impacted by heat. So, when she got in the pool, her body temperature was brought down, and her symptoms were greatly lessened!
Over the past couple of days, she has noticed a change in her vision. She cannot see past her outstretched hand. We are hopeful that this is not a new symptom, but we will take all the necessary steps if need be, and we will manage it as we go! MOG is not something that will go away, she will have it for life, but it is manageable, and other patients are living awesome lives with MOG. We do have to take her to her pediatrician at the first sign of fever or sickness. She is also on great vitamins and supplements!
In the meantime, we are just in constant amazement of this community, far and wide, and we truly could not get through this without all of you! Our sweet Virginia is an amazing kid, and we can't wait to see what this life has in store for her!! We also wanted to share some fun pictures from our trip to Boston. Again, thank you all for making our trip so much less stressful, and for allowing her to truly enjoy it! She got to meet her favorite chef, Richard Blais, in the Whole Foods grocery store, she got to pet a manta ray, she had her first mani/pedi, she got to see the harbor, we course found a pool, and our hope is that she will remember this trip with fond memories forever!
He immediately confirmed her MOG diagnosis, and we started talking about a plan. He took us through all the options, and we decided that the best place to start was to put Virginia on CellCept for at least the next three years. He told us that CellCept would not bring any of her current symptoms back. He said that her body would need to do its best to heal that on its own. So, her left eye blind spot, loss of sensation in her legs, and loss of use of her legs would slowly get better on its own. We are hopeful that a lot of those functions could be back by the end of the year.
So, what is the CellCept for then? Well, he said it is going to suppress her immune system so that we can hopefully keep the body from attacking itself again. Meaning, it should keep any new flare ups or symptoms from happening. He was also very clear with us that this option is about 60% effective.
I also think it is important to mention that there is one treatment that has proven to be up to 90% effective. That is Intravenous immunoglobulin, (IVIG) therapy. IVIG is a blood product prepared from the serum of between 1000 and 15,000 donors per batch. It is the treatment of choice for patients with antibody deficiencies. However, due to the effectiveness of this option, there is a huge nationwide shortage. As I speak, they are working diligently to make more. So, I would ask, if you are looking for ways to help, please donate blood! It may not make it to IVIG production, but there is such a need, and it is such an easy thing to do if you can!
Dr. Levy has now said that we can have all of Virginia's appointments virtually from the comfort of our home. How amazing is that?!?!? Of course, unless he feels that we need to take it farther, but he is also willing to work with local neurologists to help get her any treatments she may need.
As her immune system gets wiped out a little more each day, we do have to be on top of providing her the healthiest environment we can. She did start 6th grade on time, and she has the most amazing teacher and school support. She is not allowed to share any supplies, she is not allowed to participate in heavy PE activity, and she has to do her best to keep her body temperature down. That was another thing we learned. The pool was such a miracle for her because, patients with MOG are severely impacted by heat. So, when she got in the pool, her body temperature was brought down, and her symptoms were greatly lessened!
Over the past couple of days, she has noticed a change in her vision. She cannot see past her outstretched hand. We are hopeful that this is not a new symptom, but we will take all the necessary steps if need be, and we will manage it as we go! MOG is not something that will go away, she will have it for life, but it is manageable, and other patients are living awesome lives with MOG. We do have to take her to her pediatrician at the first sign of fever or sickness. She is also on great vitamins and supplements!
In the meantime, we are just in constant amazement of this community, far and wide, and we truly could not get through this without all of you! Our sweet Virginia is an amazing kid, and we can't wait to see what this life has in store for her!! We also wanted to share some fun pictures from our trip to Boston. Again, thank you all for making our trip so much less stressful, and for allowing her to truly enjoy it! She got to meet her favorite chef, Richard Blais, in the Whole Foods grocery store, she got to pet a manta ray, she had her first mani/pedi, she got to see the harbor, we course found a pool, and our hope is that she will remember this trip with fond memories forever!
Remember to always be kind, spread the love and laughter, and have a great day!
Comments
Post a Comment