Finding a Local Doctor
A Personal Experience:
If a physician is OPEN and WILLING to speak with an "EXPERT" in the field of OI, then they may be a wonderful person
to treat your child. As with our case, our son's pediatrician(s) (group practice) are "bulldogs!" We love them.
They are relentless. They call NICU docs; they contact physicians on-line and over the phone; they don't settle until
they know I am comfortable with their answers.
Despite researching information on rare cases, they do not try to mark their territory. They are eager to have their
patients seen by experts, knowing that one physician cannot possibly specialize in all rare diseases. Our pediatricians were
happy to hear that we had scheduled an appointment with the team of physicians that were organized by the Coordinate (Complex)
Care Services Department at Children's Hospital in Boston. In addition, our son's pediatricians and the BCH team encouraged
us to take Dan to Montreal when he became stabilized.
At 5 months of age, upon our first visit to Boston, the physician we saw, Dr. Hobbs, took one look at Dan and immediately
admitted him. In 24 hours, he was seen by 18 physicians/specialists - every one from Pain Management, to
ENT, to Renal, to Pulmonary. pH probe, CO2, ultrasounds, and sleep studies were all performed.
My point being - in choosing a physician or team of physicians for your child - look for someone who is THOROUGH. Someone
who is willing to pick up the
phone in front of you and call an EXPERT for a consult. It shouldn't be about pride or ignorance;
your child's physician should follow one principle: DO NO HARM. If your child's physician is hesitant, unwilling to give you
answers or to follow up promptly, then they are not doing their job.
Don't be afraid to change physicians. Time is of the essence. You are your child's advocate.
After all, when's the last time your child's doc offered to babysit? That would really light a fire under them to provide
better treatment, eh?!
Nicole and James McCarty, parents of Dan, 31 months, severe type III, over
6lb. 10oz. & 16 in.
at birth, 19 lb. & 26 in. for the past 15 months
Long bones bent at 70-120 degree angles, oxygen-dependent for first
Wiggles on back and occasionally rolls, holds up head but cannot sit independently
Pam since 10 weeks using Montreal
protocol, administered at Hasbro Hospital, RI
Endocrinologist - Dr. Chanika Phornphutkul, NIH-trained, Brown Medical
Coordinated Care - Dr. Nedda Hobbs, Children's Hospital Boston, MA
Awesome pediatrician! -
Dr. Jane Dennison, East Bay Pediatrics, RI