Hello my name is Cathy, and I have a 9yr old daughter named Alicia whom was just recently diagnosed with NMO in Nov of 2011. We live here in Colorado, and to my knowledge this is a rare disease. It all started in 2007 she started having eye pain in her left eye, and her pediatrician thought is was some sort of infection, and put her on antibiotics. In 2008 she started breaking out with a rash on her face, pain, and swelling to her joints. First her pediatrician thought she may have lupus, which she tested negative for. In 2009 she went and seen a Rheumatologist., which she was diagnosed with JIA. Alicia being the strong little girl she is, we thought the worst was over. For about a year and a half everything seemed to be going great, then all of a sudden she was having headaches everyday. Then that one day in Oct of 2011 she woke up in tears from her headache, and she said the room was spinning. She was vomiting uncontrollably, and had no coordination of her left side. Her dad, and I rushed her to the ER. The doctor took an MRI of her brain, and notice the lesions, right away he told us to go to children’s hospital in Denver. While we were there she was first diagnosed with ADEM, and was being treated with high doses of steroids. She also got an MRI of her spine, and the doctors noticed a long lesion down her spine. We were told that ADEM usually was a one time thing, and it wouldn’t happen again. After she was released we got a call from a neurologist named Dr. Schreiner. She said she would like to meet with Alicia and the famiy, and that we would also be meeting Dr. Bennett, which I may add are both great doctors. At the appointment we were told Alicia has a great chance of this happening again, and that she tested positive for a disease called NMO. At that point I was completely lost, and didn’t know what to do. So here we are now, new to all of this, and still a little scared, but staying strong at the same time, on the other hand; Alicia has been a champ through all this, and I am very proud of her. Alicia did get started on a medicine called Rituxan, which she will get every six months. Alicia so far has been doing great. She has slight damage to her left optic nerve, and she still has numbing sensations throughout her left arm. It has been a scary ride for all of us, but we as a family are coming to realize to take it day by day, pray every night, and be thankful for all the good days she has, and hopefully will have from here, and out.
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