As I was preparing to give Dani her cocktail of medications she takes on a daily basis, I thought it was about time to update both family, friends and those in the China adoption community who follow my blog, on Dani's medical condition.
While Tuesdays in our home tend to be Taco Tuesday, Mondays for Dani and I are Methotrexate Mondays. Methotrexate is just one of the 6 medications Dani takes on Mondays. The remainder of the days she takes 5 medications daily, some twice daily.
I won't re-tell the entire, very long history, but to re-cap for those of you not familiar (you can always go back in time on my blog) with Dani's situation, here goes. We adopted Dani from the Special Needs program in November 2009. Her "special need" was that she was born with a cleft lip and palate, which we learned upon arriving in China to pick-up our princess, had been repaired by Love without Boundaries and they did a fantastic job.
In January 2010, Dani began experiencing episodes in which the side of her face (usually on/near her temple) would swell. The swelling would start out very faint, not noticeable to anyone but those who see her daily and slowly over the period of a week, progress until her eye was swollen shut. It would then take approximately 3 weeks for the swelling to subside and her face return to normal. This would occur every 4-5 weeks. See picture below.
Over the course of 2 years Dani was hospitalized many times so the doctors could run tests, take blood, perform CT scans, MRI's, take more blood, take muscle samples, treat her with IV antibiotics and oh yah take more blood. They shipped her blood and muscle tissue samples to labs in Texas, Maryland and even a lab in France. She was seen by ENT doctors, Allergy & Immunology doctors, Rheumatologists, Infectious Disease doctors, Hematologists, Dermatologists, Metabolic Neurologists, Pediatric Dentists, and Genetics. You name the sub-specialist and Dani had probably seen them! Needless to say the swelling never responded to any of the treatments and antibiotics never helped. So for 2 years our poor little girl was poked, put to sleep, operated on and yet she continued to experience the facial swelling episodes. It is important for me to point out that throughout all of this Dani was never in any pain. The swelling never caused her any pain or discomfort, she never had a fever, nothing. She was still the happy, very energetic little girl we brought home from China.
In December 2011, just 9 days before Christmas, Dani was experiencing one of the worst swelling episodes she had ever had and her Pediatrician sent us to the Emergency Room (again). Her one eye had already been swollen for about a week and the swelling was spreading to her other eye and my husband and I knew that by Christmas, it was likely that BOTH of her eyes would be swollen shut. This was just un-acceptable and in one last ditch effort to get help for our daughter and some medical direction from someone who would not just run a bunch of tests on our daughter, but truly manage her care and try to get to the bottom of what was causing her swelling, I contacted my former boss at Children's Hospital San Diego, fondly referred to as Dr. E. Dr. E. was so wonderful, so gracious and met us in the ER within minutes. Upon examining Dani, he had his suspicions of a possible disease (did I mention he is brilliant?) and asked if Dani had ever been placed on steroids for her swelling, which she had not. He suggested we try a short course of steroids. If the steroids worked, that would help determine what type of disease Dani had. All the while however, Dr. E. had his suspicions of what her diagnosis was. Within DAYS of being on the steroids, Dani's swelling started to subside! Fast forward a few weeks and thanks to Dr. E., our beautiful, happy little girl has a diagnosis, is on the appropriate medications and is seen by an equally brilliant physician each and every month. It was (and still is) the BEST Christmas present we could have ever asked for.
So, I'm sure you're wondering, what does Dani have? Dani has a rare auto immune disease called Dermatomyositis. The immune system is a group of cells that normally protects the body from infection. In autoimmune diseases like Dermatomyositis, however, once these cells turn on their infection-fighting process, they cannot turn it off. This process therefore damages the body instead of protecting it. One way the immune system cells fight infection is through inflammation (i.e. the swelling Dani experienced). But when the cells cannot turn off the inflammation process, tissues are damaged. So far, Dani seems to have a mild case of Dermatomyositis and has not experienced any of the "classic" symptoms such as muscle weakness, which made her case especially difficult to diagnose.
Again, despite all of the medical testing Dani has gone through, despite her hospitalizations and swelling episodes, Dani has truly been a joy in our life. We often said that we don't know how we would have got through this if she had been in pain or had not been the brave, happy little girl she is. As she seems to have a mild case of this disease, her prognosis for the future is bright. While she is on very aggressive, medications that can be tricky to manage at times, her Rheumatologist is hopeful that she will outgrow the disease in the next 3-5 years. We are so grateful to my former boss for stepping in and to her current Rheumatologist for the wonderful care they provide to us and Dani. So I will end with a picture of our beautiful little girl from this past Easter. Enjoy!
P.S. Yes, it is a real bunny rabbit!
T
