It has been awhile since I have posted. I have been caring for my mom for quite a few years and recently it had gotten really bad. Since has passed away so needless to say it has been a really difficult time. Trevor continues on the Orencia. We don't really know if it is working or not but Dr. Santiago wants to continue with it. She has made a referral to a physicist. This will be for pain management. However, due to the appointment process we are looking at April!!!
Trevor has also been having high blood pressure. So, we have been following his pediatrician on a regular basis for that. He gets really close to "the number" to getting the referral to a pediatric cardiologist but then seems to stay low for a couple weeks. His normal BP is 144/88. Yikes! I think it's high!!! We are looking for a bottom number to stay in the 90's for a length of time. He had an ecocardiogram and it was normal. Thank goodness! We will continue to monitor that!!! And finally the other "new" thing has been his skin. I thought he was just a teenager having breakouts but his head has also been flaking. So...the dermatologist has put him on 3 different medications for his face and head. So far it has not worked. Well, like in true Trevor fashion, it seems to work at first but then stops. He also has been getting red bumps on his legs, back, arms, etc. They took a culture and it had a bacteria. They said nothing to be too concerned with but that he should maybe go on an antibiotic. (They actually asked me what I thought?-weird) So he starts that today! I have asked if it could be related to his arthritis. They don't know. "Probably not, but???" Really? They say it's a chronic condition probably dermatitis. It will have flares. Why Trevor!!! I don't know if I am buying that. Anyway, I just want him to have more days pain free! I am hoping big things from this new Dr. Hart in April. I am sure we will get to the bottom of the skin issues. It is all just so frustrating. For now, we just keep our heads up and moving forward!!!
