So for those of you wondering what exactly happened at the back brace appointment, I am here to tell you. We saw Doctor Song at the Bellevue Children's branch of Orthopedics. This is the doctor that Dr. Sponseller (Baltimore Orthopedic doc) recommended for us. Dr. Song was great and we absorbed a lot of knowledge about Emri's scoliosis from him. He made it known that he is a believer in being minimally invasive and commented that the goal for Emri was to have her brace/surgery free until after she was 10 years old. This could be potentially very difficult depending on the severity of her scoliosis. Dr. Song told us he wanted to do a "traction" x-ray on Emri to which I replied "alrighty, what's that?" He went on to explain that a traction x-ray is when you take an x-ray of a patient laying down and stretched out. This way, a doctor can get a patients back curvature at the best possible degree. When a traction x-ray is done consistently every 6 months, it is possible to really observe how the patients back is progressing. When we were in Baltimore, the only x-ray we received was one where Emri was sitting, supported by me. This x-ray showed a curvature of 17 degrees. In Emri's traction x-ray, her back was at 13.8 degrees. Dr. Song was pleasantly surprised by the 13.8. He made it clear that a back brace was unnecessary until her back gets much worse. Dr. Song did mention the significance of monitoring Emri's back very closely as she grows. Without monitoring it, we have no way of knowing how much the scoliosis has progressed and if it does progress too far without surgical intervention, it could impede on the growth of her lungs which can affect the span of her life. It is also important that we attempt to delay surgery as much as we can because if a surgery would be done with Emri still growing, she would have to be operated on every time she would have a growth spurt which obviously is not good for a child (anesthesia too often isn't good for a kid). SO-that's the story on the brace.
As for the rash...uhg. Over the past two days Emri has developed quite the rash for herself. It started as red ears and moved to a big red spot on the back of her neck. After 15 minutes of freaking out about the big red spot I began noticing little red spots appearing on her arms, which slowly turned into BIG red spots and as of today are consuming her arms, legs and face. She also has some very swollen hands and feet. She has been to her pediatrician, Dr. Bochsler, twice, has been reported to the good old Dr. Dietz, and it remains quite a mystery as to what this rash is. One of the things it COULD be is a reaction to Emri's new dose of losartan, which is beyond my understanding because she started the new dose 10 days ago. It could also be some sort of virus or an allergic reaction to something besides losartan. We are hoping it is one of the later. If Emri reacts to losartan, it would mean that she most likely would not tolerate any sort of ARB which would be such a nightmare. I feel as if Emri's body has been reacting well to losartan. She has gained 5 oz. in 5 days, which is something she has never done and my wishful thinking is saying it's the losartan taking it's effect on her! I am praying so hard that this has nothing to do with the meds. Throughout all of this, Emri remains happy as a lark. She may look like a horrible version of Bob the tomato, but she is a happy little tomato none the less. She is smiling through it all and doesn't seem to understand why she is getting all of the extra attention! PRAY that this rash is not a result of the losartan, that she gets over it fast, and that we never see it again!!! I hope this blog helped everyone feel up to date. Thank you for all of the concern already expressed. Hugs to all. ~erin~
