July 07, 2012

The last two rheumatology appointments for Maddie she has seen a nurse practitioner instead of her rheumatologist. I understand there are only 2 pediatric rheumatologists in all of San Diego, Riverside, and Imperial Counties (over 3 million people). But, I just don't feel comfortable with anyone other than her doctor. The nurse practitioner mainly deals with fibro patients and his exams clearly reflect that. He's thorough but at the muscular level, not examining the joint inflammation as closely. 

This last visit I told the nurse practitioner Maddie had just come out of a big flair and more joints were involved. He called in the rheumatologist to consult just as he did the previous visit, adding to the doctor's already jam-packed schedule. I am so glad though, because the treatment plan the nurse practitioner was suggesting (MTX weekly) was far more invasive, I feel, than what the doctor suggested (as soon as a flair begins, start a large dose of prednisone for 2 days and taper off for 4-6 weeks). Maddie's flairs are typically months apart so the last thing I want is for her to be on constant immunosuppressant drugs. We tried the prednisone route last year for a really bad flair and it worked really well, without a rebound. So I left the office with a prednisone prescription and if Maddie has a flair I give her the steroid. Sounds like a plan.

When I made her next appointment I respectfully requested she see the doctor, as he's had to come in on a consult anyway both times we've had appointments with the nurse practitioner.  

July 03, 2012

I experienced TSA in a whole new way on my recent trip to New York. It was a long trip so I had to bring 3 injections of Enbrel as well as Maddie's liquid Naproxen. I called Delta and the TSA ahead of time to find out how to get through security with a cooler, frozen gel packs, syringes, and a large bottle of liquid medicine. I was told it wouldn't be a problem, just to inform the TSA agents what I'm carrying and let them know I don't want the syringes to go through the x-ray (a recommendation from TSA over the phone). Well it turned out not to be that easy. I informed the TSA that I had liquid medication and they said to send it through the x-ray. Because I wouldn't let them x-ray the Enbrel I had to undergo a full pat-down. And then I got a lecture for sending the liquid through the x-ray (different agents, obviously not communicating too well). My husband went ahead and took the kids to find our gate so I didn't have Maddie with me but had her medicine, which TSA thought was suspicious. You know, you can never win.  The funny thing is after the full pat-down they never did open the Enbrel case and look at the syringes. I could have been carrying anything in that case and they would have never known.