When C was diagnosed with diabetes, the hospital told us we would follow-up with an endocrinologist at UCLA (an hour+ away) and we would go there quarterly. Later they came in and told us we’d be seeing another doctor instead. She was in our city but was not an endocrinologist. She was a regular pediatrician, but specialized in diabetes and ran a pediatric diabetes clinic once a week.
I wasn’t sold. I’d only known what diabetes was for about 3 days and now they want me to go to a regular doctor instead of the endocrinologist I’ve been reading he should go to? They assured me it would be fine. The first time I met her, I knew she was the right choice. She laughed with me at my panicking and helped me to relax (this was 5 days after leaving the hospital).
Dr. S ‘gets’ me. She laughs at me when I’m nuts. She doesn’t take offense at the humor I tend to use or my constant sarcasm. She understands which things I take very lightly and the things I take very seriously. She understands that C is 11. She understands that if I find a stash of candy hiding in the back of our Tupperware cupboard that I should be thankful that sugar is all he feels he needs to hide from me. In fact, her suggestion was to fill that stash spot with his favorite candy. Just make sure to leave the carb count in there as well. She speaks to C directly, understanding that HE is her patient and HE needs to be a part of all decisions. Although she does not have diabetes, it is in her family. Her sister has celiac disease. I have not only her home phone number, but her cell. She was fine with the fact that it’s taken me over a year to want to wait 3 months in between visits (this will be our first time… so far it’s been 8 weeks and I’m feeling ok). She’s been fine with the 6-8 week schedule I’ve been comfortable with. Although, some parents I’ve spoken to feel she’s too controlling, she respects me and will rethink things if I disagree. She asks C to give her lessons on the Ping since he was her first patient to stray away from her comfortable MiniMed. She asks us to speak to newly diagnosed parents or parents wanting to start pumping. She calls C her ‘special patient with a special situation’ to the learning doctors who follow her because he has not only diabetes, but celiac disease and happens to be her only patient with both (by the way, he loves this attention). She loves how well we’ve adjusted and how much we’ve accepted diabetes into our lives. Sometimes I wonder if she has any idea how big a part she has to do with that.
Yesterday, we had to go to that original doctor at UCLA (an insurance formality… once a year). There was nothing personal. They didn’t share my sense of humor and looked at me like I was weird. One doctor made a statement, I mentioned that our regular doctor had said the opposite and she said that’s why she recommends ‘not speaking with too many doctors.’ I didn’t like this. Even though I love ours, I absolutely want to hear other opinions to help form MY OWN. (At diabetes camp, I made sure I brought all my questions to the doctor there and asked WHY he disagreed with our regular doctor on certain things. I can’t just put ALL of my faith in one person.) This appointment felt like an assembly line. Get in, see first doctor, wait, see nurse, wait, see second doctor, wait, see nurse, wait, see social worker, wait, see nutritionist, make next year’s appointment. Phew. Not at all like our normal one. We see the nurse and doctor who KNOW us. They ask about my other son BY NAME. The nutritionist peeks her head in during the appointment to tell me she tried the gluten-free pizza I recommended last time and agreed it was DELISH! The gastroenterologist walks down the hall and sees us. On his way to his patient asks how everything’s been going diet-wise. On our way out we might run into his general pediatrician who recognizes us and asks how both boys have been doing.
It’s clear that your team can make or break you. Their attitude will shape yours. There are amazing doctors out there. My family is truly blessed that we have found not only an amazing endocrinologist (well, general doctor specializing in diabetes…), but gastroenterologist and even pediatrician. I really don’t want to think of where we’d be without their support.