By After receiving the results of Camden’s MRI back in November of 2016 there was a lull in neurology and genetic visits. There was really no where to go from here, just wait and see how he progresses and develops. We stuck to our several therapy appointment per week schedule and waited. How could it be possible that there is not a known medical reason for a child to have this many delays? It was mind-boggling to me and I felt like there had to be more insight into what was happening with our little guys development.
In June of 2017 Camden turned 3. We had his annual well check appointment with his Pediatrician. Just like every other medical professional that sees Camden she looks at him so perplexed. At the end of her examination she asked what my thoughts were on perhaps getting a second opinion. I was smiling when she asked because I was just about to ask her the same thing. She asked where we would like to go for the second opinion, and followed up with “Mayo Clinic?”…which again, was on the tip of my tongue.
As a side note I had recently had a lengthy conversation with a customer of mine whom is a Dermatologist in the Metro Detroit area; his son has Fragile X and at the time was just turning 18 years old. Needless to say, they had traveled down a similar road several years ahead. I used his knowledge to gain perspective in navigating this road less traveled. Amongst the many insights he provided in our conversation he mentioned that if we were to seek out a second opinion that he would go straight to the Mayo Clinic because they are so far ahead with research.
So with all that we had trudged through to this point, with seemingly no answers, our Pediatrician submitted the paperwork to travel to Rochester, MN to receive a second opinion. Within a week of his 3 year appointment I received a phone call from the 507 area code and I quickly answered. It was Mayo clinic calling to triage Camden’s case. I did not know it at the time but apparently a Dr. reviews your medical history and they determine if they will accept you for an appointment. The lady on the phone was extremely helpful, not rushed and very friendly. She asked me several questions and requested his recent MRI imaging to be sent on a DVD. I quickly got off the phone with her and called U of M to get the documentation she requested sent over. Then we waited….and waited…and waited.
I called several times to receive a status on his acceptance and subsequently his appointment dates. I found out on the second call that he had been accepted but they were waiting on the Dr. to determine what appointments would be set up for him based on her review of his medical records. I then called several more times after that to see what the dates were for his appointments. Surprisingly no-one was every irritated with my persistent phone calls and everyone was always extremely friendly and helpful.
With much anticipation we received a letter in the mail in August with our appointment times and dates. Dr Renaud (Mayo Neurologist) had us scheduled for appointments October 9th-12th. We would meet with her first thing in the morning on the 9th and then we would see Neuro Phsyc. mid day the same day. On the 10th he was schedule for a sedated EMG test, the 11th was an eye exam and the 12th was a wrap up meeting with her to review the weeks findings. It is interesting that they schedule everything and send you your appointments in the mail. If those times don’t work you can reschedule, but you will likely wait months to get everything coordinated and rescheduled.
Within 10 minutes of receiving the letter I was on my phone booking flights, finding hotels, seeking out a good deal on a rental car, lining up family to take care of Crew while we were gone and requesting the time off work. We considered taking Crew with us but decided it was best to leave him at home so we could focus on Camden. We flew out on Sunday October 8th so we could make his first appointment the following day at 7am. We were so eager and anxious for what we would learn/experience while we were out there. Answers? Insight? Nothing at all? Only time would tell…
Until Next Time,
3 C’s and a K
MacMillan Family Life 