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OI CHILD

Finding a Good Local Doctor
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OI Children are like snowflakes-----no two are just alike.

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
Cardiology, 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?!
Our Best.
______________________________________________
Nicole and James McCarty, parents of Dan, 31 months, severe type III, over
100 fractures
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 year
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
School Physician
Coordinated Care - Dr. Nedda Hobbs, Children's Hospital Boston, MA
617-355-4000
Awesome pediatrician! - Dr. Jane Dennison, East Bay Pediatrics, RI
401-247-1644

Our mission is to provide caring personal support, empowering information and unwavering hope to persons caring for a child with OI.