Most of you know Julia's endocrinologist since leaving the hospital has been the same doctor we saw in the hospital and we were happy. He was there when we called and supported us in our medical plans for Julia and he got us on the road to taking the best care of our girl. We trusted that he and his team were helping us to help Julia be and stay as healthy as possible.
Several months ago I met another pediatric endocrinologist in our area. He was the speaker at a JDRF event talking about how diabetes management started, where it is now and what is on the horizon. I really liked all the things he had to say and my internal struggle began. He was so aware about the current technologies and spoke passionately about how using these technologies offers our children the opportunities to live their best healthiest lives.
I spoke to Bubba about whether or not we should change doctors. We both felt safe with where we were and that we were making the best choices for Julia.
I am the type of person who likes to find out information. I have been studying Type 1 since Julia's diagnosis so I can feel confident that she is getting the best care.
When we went to our last endo appointment in June I began to lose confidence in the care Julia was receiving. We were told what a great job we were doing and her A1C had gone down but (and that is always the problem isn't it? The nagging but) no changes were made to her pump settings. Now I may not know much but I did know that one basal setting with a small change in the afternoon was not right.
For those of you not familiar with pump therapy and how it works here is a very simplified explanation. Please keep in mind I am not a doctor. The pump delivers insulin to Julia 24 hours a day in small amounts called her basal dose. She also gets a bolus dose whenever she eats. That is the insulin she gets to cover the carbohydrates she is consuming. The ratio of basal and bolus is meant to be around 40% basal 60% bolus. Obviously everyone is different and nothing is perfect especially when it comes to diabetes but (there is that word again) Julia's ratios were at about 20% basal 80% bolus and the doctor felt nothing should be changed. In my opinion at that point being on the pump was no different than having her on MDI (multiple daily injections) except we weren't having to give her the insulin in shot form.
We decided that her next appointment would be with the other doctor that I had met. At the beginning of this month we saw our new doctor for the first time. We were all a little nervous going in to something new. The first sigh of relief came when he did her A1C. Previously when we went to the doctor, a week before Julia's appointment, we would have to go to the lab and have a blood draw done. Julia called it her vein shot. I made Bubba take her. He was the one fielding the questions and dealing with lab techs who couldn't always get it on the first try. Our new doctor does the A1C right there in the office. A simple finger stick using her poker that she uses everyday all day long to do her bg checks. A simple drop of blood like she does all day every day when she does her bg checks. A big relief for everyone involved. The result was ready in about 5 minutes. To which Bubba remarked, "That is amazing." The doctor responded, "What is amazing to me is this technology has been around for a long time and doctors are still making their patients go to a lab." I felt a twinge in my heart.
He looked at her pump and her ratios and discussed the changes he wanted to make. He explained until we felt comfortable why we were making these changes. He talked about ratios & percentages (things I had read but didn't completely understand) and made them understandable.
The worst part was when we learned that one of her dosages was completely wrong. When Julia's blood sugar is high we give her a correction dose to try to bring her in range. Whenever we would do this, she would end up going low and we would have to treat the low and give her a lot of food to cover the insulin in her system for correcting the high. Sometimes this would work out and sometimes it would rebound her back into a high. When our new doctor reviewed her correction dose, he said she was at an adult rate. Yes, my petite 6 year old girl was taking an adult dose. This was a much bigger twinge. This was a knife straight in my heart.
We made the changes and left with the understanding that we would contact him and let him know how the changes were working out. Within the first few days we started seeing great numbers. I would email him what was going on & he would advise us of the tweaks to make. He even emailed me first when I didn't want to bother him over the weekend.
I really feel great now about the change we have made. It has taken me a little while to get here. I was really beating myself up for not changing sooner. I questioned how much damage had been done & how much better she could have been feeling. I was hurt. We trusted our doctor to know the things we didn't and to be helping us learn the best things to do for her. I am trying to not feel guilty and just look forward to how much healthier she will be now that we have made the change.
You are an awesome mom and diabetes advocate for Julia. It takes courage to change doctors. We lucked out when we switched to him because our switch was not an educated one it was just off the advice of a friend and due to the fact that he was local. I took us 6 months to know we made the right one. Don't look back you can only look forward. She is doing great and in great hands all around.
ReplyDeleteOh wow. Im feeling somewhat like you were before finding this kick a$$ new dr. Ive lost confidence in my drs abilities to understand our baby and what he needs to be healthy. I have to either put up or look around. Im glad hes passionate, knowledgeable, responsive and cutting-edge! This is progress :)
ReplyDeleteYup. Just stay positive. Don't blame yourself for something that maybe could have been done sooner. It's done now, isn't it? And who's to say? What if you had done it sooner, then realized you liked the old Dr. better? Would you have blamed yourself for making the change too soon? Probably. It's not fair to beat yourself up.
ReplyDeleteThis font color and background are a little hard to read, but it might just be my crappy, old computer.
-Your anonymous brother (Not brother in some sort of figurative sense, like "Oh, I'm a brother in that I understand your struggle." I'm your actual brother. That narrows it down to two people. I just chose the "Comment as anonymous" option because I feel like last time I had some weird issue with signing in.)
P.S. My name doesn't rhyme with "Pony". This is still anonymous though, right?
Sounds so great to find a doc that listens. Anytime anyone takes a little extra time to hit the details -- that's great. So glad you discovered the dr. I'm sure you too are feeling it is quite a blessing.
ReplyDeleteWay to go with pursuing the switch to the new doc! I changed my daughter's endo and I know what a struggle that was for us mentally.... but I am SOOO happy that we switched. Sounds like you've found a great one.
ReplyDeleteAnd by the way, your brother's comment above literally made me LOL! :)
Wonderful job making the change. Don't beat yourself up for making it when you did. When you knew better, you did better. Here is to hoping for less labile numbers for Julia. xo
ReplyDeleteCongrats on a fresh start!
ReplyDeleteWhen my daughter was dx at age 2, they put her on a 1:10 carb ratio for bfast. She kept passing out from lows about 2-3 hours after bfast, and no one suggested a change. She'd just keep passing out several times a week, no matter what I'd do. I thought it was normal for young children with diabetes.
When we moved, her new endo almost choked when she saw that ratio. She promptly adjusted her to 1:40c and guess what??? The passing out stopped!
Amazing how that happens.
I've had simply wretched PCPs all my life until I turned fifty-five, a few, ahem, years ago. So I should lie in the road because I've been an idiot an entire lifetime? Great doctors are few! I personally can attest that you're the bees' knees, Diane, brilliant and obviously brighter than I've EVER been. All the best from L'il Ol' New York, especially to Julia and Pony.
ReplyDelete