We had PJ's follow up appointment this morning with Dr. Peter D. PJ was in a fantastic mood and Big P was able to get off of work to come to the appointment with me. To sum up the appointment briefly, Dr. D says that PJ has a "mild" case of Infantile Scoliosis with a Cobb Degree of 25. He said we could take the "wait and see" approach and see if it corrects itself with time, or if we wanted to go the more aggressive route, we could elect to do a night bracing system. When I asked about an MRI to rule out an nuerological issues, he said it "wasn't necessary". I found this surprising given my history of eosinophilic granuloma (which cant be detected by xray and can be passed on genetically) and my mother's diagnosis of Chiari Malformation (also with a suspected genetic link and can't be seen by xray alone). And yes, he was made aware of my family's medical history- which in and of itself should've risen red flags and should've indicated PJ was a prime candidate for a follow up MRI.
When I asked what his RVAD (basically, vertebral rotation) he said there was a twist but didn't go into specifics. He also suggested that I stop going online to research so much so I wouldn't "drive myself crazy". We were instructed to make an appointment with his in-house bracing specialist and that was that. While I liked his personality, and his sense of humor, a few things just didn't sit right with us, and Big P and I both decided to seek a 2nd opinion. While I see what he was saying, and I know he was probably trying to just keep us calm, it was all just a little too nonchalant for us. I think doctors sometimes forget that while we're just another patient to them, to us, PJ is our whole world. I WILL continue to research and "drive myself crazy" because I'm his Mom and that's my JOB. I will find the best, and most up to date research and methods to deal with all of this because PJ can't advocate for himself at this point- and his future-being able to walk, run, jump, play sports, and lead a healthy life- all rests on what decisions we make right now. We can't afford to hope and pray that this will fix itself. And to be honest, my "mom gut" is still telling me to keep pushing for that MRI. Dr. D was great, and I know he's fantastic at what he does, I just don't in my gut believe that he sees enough Pediatric Scoliosis patients in our little state to be an absolute expert on it. We would be doing ourselves and PJ a huge disservice to not consider that there ARE experts on this, and who see it everyday. We made the joint decision to pursue those other avenues.
SO.... Big P and I decided to seek out a 2nd opinion and we researched a few hospitals/specialty groups with a primary focus on Infantile Scoliosis. We chose to meet with Dr. V at New York Presbyt. Pediatric Spine Ctr. Incidentally, this was where I was seen as a child when dealing with my spine issues. We feel comfortable with this choice- they are the BEST at what they do. In a weird twist of coincidence, one of the PA's that Big Sis A saw at our Pedi's office, is now a PA at this exact same office. We absolutely loved him, and often chose to see him over an actual doctor for many of A's well-visits. He had a great rapport with A, and I valued the fact that he considered the parent a partner in routine healthcare decisions. I'm taking the fact that he is now with this VERY specific practice as a sign that this is where we need to be.
PJ's appointment is next Monday, and Big P and I will be driving into NYC for the day. While we're not positive that they will give us any different info than Dr. D gave us, we will feel better knowing that he was seen by two different doctors. We want an objective opinion, and we want it from the best. Not too much to ask, right?! ;)
Until next week, we won't be posting much. We'll update after the appointment in NY next Monday :)
Again, thanks to everyone for the love and support!! <3 p="">
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