At the suggestion of our friends, we began researching MAPS doctors across the country.
Medical Academy of Pediatric Special Needs.
Although we were still in shock of the initial diagnosis, we both knew that early intervention would be crucial. We were fortunate enough to have some friends who were willing to guide us in ways maybe they wished someone had guided them. My friend Kristen met Juan and I at a local Starbucks. She brought pieces of literature, her beloved Autism binder, business cards and the knowledge that only a momma of an AU child would have. She was prepared. I was overwhelmed.
We knew that she would have information regarding a doctor in Florida who is deemed one of the best. Dr. Jerry Kartzinel’s office was our determined destination and we were hell bent on getting there as fast as we could. It would take us about a month to get the appointment booked and travel plans arranged. We would fly to Orlando as a family of 3, while our school-aged children stayed behind with grandma. My dream to turn our doctor visit to a family vacation to Disney was denied.
December 10, 2018: Our initial visit
We were scheduled to visit with Dr. K at 2 p.m. And unlike most of our experiences with other medical professionals, we started on time. He met us in the waiting room with a smile. We then followed him to his sprawling office where Jacob did what Jacobs does best: explore. He walked around the office, found most of the toys boring but became interested in climbing the sofa, unplugging the lamps, standing on his toes to grab the papers from the desks and crying to be lifted into our laps, then crying again to be let down moments later. A seasoned pediatrician, Dr. K was unfazed and delighted in watching Jacob interact with his environment. It didn’t seem like a doctor’s appointment, at least not in the traditional sense. We spent the majority of the time talking to Dr. K. and answering his questions.
What was your pregnancy like?
How often do you have to cut his nails?
Does he sleep well?
What are your greatest concerns right now?
In addition to our extensive interview, Dr. K used our time together to point out areas of Jacob’s medical history that were concerning to him. We left the doctor’s office caffeinated and hopeful. In our hands were three tests the doctor wanted us to complete when we arrived home. The results of the tests would be our road map for Jacob’s treatment plan.
What to know if you’re considering a visit with Dr. K:
- He doesn’t take insurance. He charges an hourly rate of $500 and your initial visit is scheduled for 2 hours.
- Be prepared to use all of the time in your initial visit. We brought Jacob in his stroller and packed plenty of snacks. Thankfully, Jacob ended up napping in his stroller after about an hour of exploration.
- You will probably leave with the same three tests we did: urine, stool and blood. Getting blood work done for a 20-month-old is no easy task. We recommend scheduling an appointment in the laboratory of your local Children’s Hospital.
- The treatment plan that Dr. K will design is truly individualized, but there are components of the plan that affected our entire family. Dr. K suggested that we start a gluten-free and dairy-free diet.
- Once all of the lab work is sent to Dr. K’s office in Florida, a follow-up consultation will be scheduled. All of this is coordinated via email and the consultation occurs via Skype (or through a similar application). The hourly rate applies to all consultations.
- Dr. K and his staff do a great job at answering emails in a timely manner. He will encourage you to ask questions via email throughout the treatment process, which we’ve done.
Overall, it was a great visit. Juan was impressed with the doctor’s professionalism: It was evident that Dr. K had reviewed Jacob’s medical history with the questions he was asking. He took notes the entire visit and shared those with us at the end. He was organized and knowledgable. I was most impressed with Dr. K’s ability to connect with us. He didn’t just interview us, he served as counselor listening to our greatest concerns and fears. He empathized. Our appointment was interrupted about half-way because he offered us coffee, which he went to go make himself down the hall.
And because my husband has a hard time telling me no, we did end up at Disney for a couple of hours that night. Jacob had tons of fun eating, which is pretty typical, but slept the entire time we were there!
Signed with love, Kat.