From Dayton, Ohio, USA:
My 14-year-old son is going through the early stages of puberty. As such, his blood glucose levels are more difficult to control and he is prone to more highs and lows than in the past. His A1cs have been between 6.0 and 7.3 lately. As his mother, I am trying very hard to keep his blood sugar controlled, which necessitates me adjusting his pump four to six times per night and/or giving him juice when his CGM indicates a low. I am doing the best I can. He is also doing his best, watching his diet and exercising daily. The problem is that his pediatric endocrinologist says we are not doing enough to prevent highs and lows. I think she has adequate book knowledge but no practical understanding about what it is like taking care of a child with type 1 24/7. Honestly, no matter what I do, his blood glucose goes up to 250 mg/dl [13.9 mmol/L] or down to 50 mg/dl [2.8 mmol/L] several times a week. When that happens, we take immediate corrective action but the timing is unpredictable. I dread going to his appointments and frequently come close to tears when she tells me I am not catching his highs and lows soon enough. I would like to switch doctors but the problem is that there are very few pediatric endocrinologists in our city. Almost all work with her at the same hospital. Would an adult endocrinologist be a possible solution? I want him to have the best care but I also want a functioning relationship with his diabetes team, which is not the case now.
First issue - adolescents have difficult blood glucose control sometimes for reasons of sloppy food or not counting carbohydrates correctly, timing of insulin not 15 minutes before meals BUT also because of hormone surges that are sporadic and, therefore, unpredictable. The insulin pump helps but does not completely solve all of these issues, especially if you are doing frequent blood glucose monitoring and logging or downloading so that analysis can occur and patterns identified. If there were no specific food and/or insulin timing issues going on that would be so identified, and with the excellent A1c results you are reporting that would be unlikely, then your other issue would be the more important one of feeling frustrated and not empowered with your diabetes team. So, you may want to consider requesting a special meeting with your diabetologist to review your feelings and frustrations with their approach. It's okay to do this.
If you also have relationship with the dietitian or the nurse educator, you can discuss this directly with them and they may be able to give you some advice, intervene. If you still are uncomfortable with her/the team, then you can consider getting another consult with another pediatric diabetes team since there are several good ones in Ohio. As a pediatric and adolescent diabetologist, I usually think that we offer some special insight and training that is different working with adolescents compared to adult diabetologists, but if there are some who work frequently with adolescents in your area, you can inquire about this and then you can arrange a consultation with them as well and see how it goes.
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