New year, new update

It's been a few months since we've last posted. We've had a lot going on with Bella medically and I didn't want to post about it until we had more concrete answers. Bella was referred to a Neurologist for daily symptoms(which has been going on for over a year) of dizziness, ringing in the ears, occasionally blacking out, and overall weird feeling. The neurologist did a few tests and quickly decided to send Bella to a Cardiologist. The cardiologist ran tests and she is being treated for a condition that falls under the POTS(Postural orthostatic tachycardia syndrome) umbrella. POTS is ) is a form of dysautonomia -- or the abnormal functioning of the Autonomic Nervous System (ANS). Her cardiologist has been amazing at explaining this to us in terms that we kind of understand (because I don't quite get how the system works and why). So here is something I found online that explains it better than I could: With POTS, the main ANS malfunction has to do with blood pressure and its response to gravity. When an average person stands their blood pressure drops slightly, the ANS recognizes this and causes their heart rate to increase momentarily until homeostasis is reached. For most POTS patients, upon standing (postural) their blood pressure plummets (orthostatic), causing the heart to work significantly harder to regulate blood pressure resulting in tachycardia, which can be extremely disconcerting. Because of the ANS' inability to regulate this motion, blood isn't able to travel quickly enough to the brain causing dizziness, momentary loss of vision, and other symptoms. Bella is having these symptoms when stretching, standing, and playing sports. So they put a medication to try and curb these symptoms and after a month we have realized it has not made a single change for Bella. Today the doctor called and has decided to try a new medication and states that we may need to also add in a Beta Blocker. The doctor also mentioned that we may need to go to a specialist that focuses solely on POTS and informed me that the one he works with is located in D.C.. So we made a plan to take this new medication for a couple of weeks and see if we have any changes. Then we will decide on the next steps. I will travel wherever we need to get Bella the care she needs. Now, I'm sure you are all wondering if this is caused by her juvenile arthritis or the medication she is on and the answer is, no. She actually started to have these symptoms right around the time she was diagnosed with JA. They were so few and far between that I actually thought it was nothing to be concerned with until last year when they were happening daily. Right now, they have no idea what the cause is. Yes, Bella likes to have problems we can't solve...he he =) That's what makes her so unique. Now, on the JA side, things aren't too bad. The medication cocktail she is on seems to be keeping things under control for the most part. With the change of seasons or if Bella gets sick she will have a flare up. But from where we started 2.5 years ago, we are at a good place. It's not perfect, she isn't in remission and she isn't pain free.......BUT she is more active. In my book that is a small victory. She does feel the affects after increased activity but she just rests and does the things the doctor suggests to help her. She has had 18 infusions(that I usually document with a picture of her taking her infusion "nap")she informed me that I forgot to take a picture. She was just tickled that I didn't have ANOTHER sleeping picture of her to share with everyone. But in my defense we were excited that her friend, Emilia was at the hospital getting her infusion the same day, at the same time (something we've tried to plan and NEVER could make it happen). Don't you worry, I will make sure I don't forget this month, Miss Bella! ;) I'm going to attached a couple of picture of Miss Bella to make up for the lack of photos last month. The first one is of Bella after she got 10" cut off, so she could donate to a person in need of a wig(in Emilia's honor). The second one is with her friend right before their Mini-Thon Dance at school. She is getting so grown up, please stop it!!!