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.
[bctt tweet=”The best advice I can give to parents starting on the JA diagnosis journey is don’t settle for a doctor who makes you uncomfortable.”]
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
- Compassionate
- 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.
You might also enoy:
A tip to get Toddlers and Preschoolers to easily take medications
or to hear more about our juvenile arthritis story
The start of Pea’s Juvenile Arthritis Journey
and
3 years ago, my daughter was diagnosed with Benign Rolandic Epilepsy. Finding a wonderful pediatric doctor is so important. I’m grateful that my daughter’s neurologist is kind and understanding (my daughter is still a shy little gal at almost 8 years old) Her regular pediatrician is excellent and is even able to make her laugh, even when she’s super sick.
Herchel – where are you in Florida? We went to Shands for cardiac care, but are transferring down to Miami Children’s now. I have a friend with a young son here in South Florida who has JA – I am going to send her to your website for encouragement and information.
Have you shared some of your articles on The Mighty? – They have shared a number of my posts about being a “medical mom” – with great response!
Tove
tove maren recently posted…An Open Letter to “the Flu!”
Hi Tove, we are in North Florida! I am actually from South Florida though and my mom still lives there. My dad was stationed at Homestead until Andrew. Thanks for the tip on The Mighty. I haven’t posted much about JA but am working on incorporating more articles. I have contributed a few to LivingwithJuvenileArthritis.com. Please let your friend know that I am always available if she needs to vent or needs someone to commiserate with. Caring for a child with JA can be a “lonely” experience. It’s always easier when you have someone that understands.
I used to have a pediatrician for Dylan that I thought I liked but WOW was I wrong! We switched. I love this post because you went with your gut over what you were being told. You’re a great mom!
Rebecca recently posted…What Being a Parent Actually Means
Our pediatrician’s office is amazing. We see one doctor most of the time, but for last minute trips there are other good options. My kids love their doctor, so that makes the visits go much better!
Rabia @TheLiebers recently posted…How I Earned My Wrinkles {Book Review}
It does. My daughter loves her pediatrician. The practice has gotten much busier so for “routine illnesses” we see the PA who we don’t know as well
I love our pediatrician, and like you, had a list when we were deciding who to go with. Experience definitely matters, and I wanted someone in between: someone young enough that my kids can grow with, yet old enough with experience under her belt.
I also love how our pediatrician is proactive and would rather do early intervention than do nothing. She’s also very practical and bases her assessments on facts and research. And yes, no wait—if something was wrong, we would be able to see her that day or the next. Gotta love that.
Nina recently posted…How to create holiday traditions your kids will love
I adore our pediatricians! Especially the one my younger daughter sees. He is the GREATEST!! :)-Ashley
thedoseofreality recently posted…Would You Rather: Have To Do All Your Holiday Shopping On Black Friday Or Cyber Monday?
Isn’t that the best feeling? 🙂
We go to a large, popular, bustling practice of several doctors and nurse practitioners. My kids actually see different doctors/nurses within the practice because I found that the chemistry is different with every person.
Either way, it wasn’t easy and I appreciate your list here!
Tamara recently posted…It’s Because You Care.
There are advantages to large practices too. My son is pretty easy. He gets sick and 80% of the time it’s strep. He outgrew his epilepsy and rarely gets ill now. My daughter is a different story. I have called her dr almost every day for a week for DIFFERENT issues!