Dysautonomia

Charlotte has been having very unusual symptoms this month. After having several "episodes", the doctors, nurses, David, and I started to notice that Charlotte's vital signs will change very quickly, for several minutes, and then return back to normal very quickly. For example, Charlotte's body temperature will go very high, her heart rate will go very high, and her blood pressure will go very low. Usually, she will throw up or pass out at the same time. Her entire body goes haywire for several minutes, usually in the morning when she wakes up, and then it returns right back to normal on its own. The doctors and nurses thought Charlotte kept having infections, due to her high temperature. However, after watching her "episodes" closely she only has these events for a few minutes a day, but the rest of the day she will be fine. No more unusual temperatures or abnormal symptoms. She seems very comfortable and happy the rest of the day. Due to the "events" the doctors sent blood work to test for viruses that could be causing a problem. Charlotte tested positive for the Roseolla virus. Usually, roseolla is a very benign virus that children get commonly. However, in a child who has no immune system, and is post transplant, viruses are serious business. They can make these children extremely sick very quickly. That is why children are on such strict precautions after a bone marrow transplant. Their bodies are in a very fragile state for a long time until they build their immune system back up to handle infections. It is basically like having the immune system of a newborn baby again. So, the doctors started Charlotte on an antiviral medicine to treat the roseolla infection. Usually, children are not treated for the roseolla virus because their bodies can get rid of it on their own. Children who have had a bone marrow transplant are treated for everything because the smallest infection is a big deal. Unfortunately, the roseolla virus has started to cause Charlotte's bone marrow blood cell counts to drop. The doctors have reassured us that viruses can commonly cause blood counts to drop, and that with treatment, the virus should go away, and her bone marrow will return to normal. The virus has also caused Charlotte to have symptoms of what is termed "dysautonomia." Dysautonomia is a rare diagnosis that people have, but it can be caused by a virus. There is no way to know if the virus caused a "dysautonomia event" or if part of Charlotte's diagnosis is dysautonomia. We will be watching her closely to see if these events continue or if they go away once the virus is gone. Charlotte has started blossoming with her new experiences that she is trying. She colored for the first time and loved it! She loves to flip the pages and the book to start new drawings. She also enjoys music therapy twice a week with Patrick. In true Papa T fashion, Charlotte loves the guitar. She is not interested in the other instruments. Patrick can hardly play because Charlotte loves to strup his guitar with him while he sings. She is also walking a lot with her walker. OT has encouraged us to try "messy play" since Charlotte has been so isolated in regards to textures that a child would normally experience outside. So, we used shaving cream and Charlotte had a ball! It's been a fun few weeks overall.