It took a couple of years to diagnose Pea’s Juvenile Arthritis. I went through a few specialists that weren’t really a good fit to get to the ones we have now. When she was younger the pain was intermittent and unpredictable. Plus, she was too young to verbally communicate what was bothering her.The best advice I can give to parents starting on the JA diagnosis journey is don’t settle for… Click To Tweet
I understand that there may be health insurance restrictions. I chose doctors among those that contracted with the insurance company we had at the time. Luckily, the same doctors have also been in the new networks when we have had to change carriers.
We are blessed to have an amazing pediatrician. Each family has a different expectation from their doctor. I admit my expectations are high, but we are talking about my children….
What to look for in pediatric doctors
Here is a list of what makes our pediatrician the right doctor for our family:
- Years of experience/ great references
- Efficient staff/Efficient Nurse Practitioner on staff
- Evening and weekend hours
- Prompt call back system
- Thoroughly explains all tests and diagnoses
- Serves as a focal point in the care of my children
- No wait for appointments
- Knows my children by name/sight, knows their personalities—they are not just charts
- My children like and respect her
My pediatrician is the basis by which I measure other pediatric doctors. The pediatric orthopedist we saw in the early stages of Pea’s arthritis, while not as warm and fuzzy as our pediatrician, has an efficient staff that more than makes up for his aloof bedside manner. The pediatric ophthalmologist also meets most of my criteria for a great doctor/mother of patient relationship.
However, I didn’t quite feel the same way about her first pediatric “rheumatologist” (who is primarily a nephrologist– who also does rheumatology. ) He stressed that all her blood-work continued coming back normal. As a parent doing cursory Google searches on JIA, even I knew that most cases of Juvenile Idiopathic Arthritis do not test “positive” for the RF factor. In my gut, I felt that this doctor did not take me or my daughter’s pain seriously. Granted, her pain was intermittent. When she feels fine she was a normal, active toddler. Unfortunately, this doctor was the only pediatric rheumatologist in our city.
For two years, I worked with our pediatrician to treat her pain, frequent bouts of pneumonia and other issues exacerbated by her autoimmune disorder. When her symptoms started to progress rapidly and more joints became affected, it was time to go back to a specialist.
But I chose not to go back to her original specialist.
I decided to make the trek to UF/Shands in Gainesville, FL to meet with a new pediatric rheumatologist. Despite the two hours of toddler carsickness hell that we endured there and back, it was one of the best decisions I made. Not only does her new rheumatologist meet all the above criteria, but after his examinations of her joints and range of movement he wrote out a plan of treatment that made sense to me and what symptoms or side effects that I could expect. It makes a difference when the team responsible for treating and monitoring my daughter’s arthritis make sure her are fully informed and are a part of that team.
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or to hear more about our juvenile arthritis story