From Cleveland, Ohio, USA:
My daughter, who will be three next week, was just diagnosed with type 1 two weeks ago. Her endocrinologist has her on Levemir before bed and one unit of NovoLog before each meal, plus additional units (sliding scale) if her pre-meal reading is above 300 mg/dl [16.7 mmol/L]. If she is only getting one unit of insulin to "cover" her meal, as I understand it, this will not allow for many carbohydrates at all in her diet. We are supposed to keep her blood sugar between 100 and 200 mg/dl [5.6 to 11.1 mmol/L] and even though we are trying so hard to limit her carbohydrate intake, this feels almost impossible. If she has a glass of milk with a meal, it seems we can't give her any other carbohydrates (even very small amounts) or she will end up in the 300s mg/dl [over 16.7 mmol/L] at her next pre-meal reading. Is it normal for them to expect her to have so very few carbohydrates (less than 15 grams per meal)? We are really struggling to find foods that she can eat. I tried buying low-carbohydrate whole wheat bread and only making her a half of a sandwich (8 1/2 grams of carbohydrates in the one slice), but then I can't give her any milk or anything else with carbohydrates with it if I want to keep her even under 300 mg/dl [16.7 mmol/L], let alone under 200 mg/dl [11.1 mmol/L] where she is supposed to be.
My daughter was diagnosed at the Cleveland Clinic and is being treated by both of their pediatric endocrinologists. During our hospital stay, they had a dietitian talk with us and we felt like she was helpful at the time, but now we don't feel like she was helpful at all. I think we walked away from her feeling like "Okay, she can have carbohydrates, we just have to watch how much and when and it's a balancing act," but it's just not turning out that way for us. It feels like all of the foods that we were told were "okay in moderation" should really just be on a "forbidden" list. It's my understanding that, at some point, they will change her dosing and we will be giving her insulin based upon the carbohydrates in her meal, but I don't know if that will be any better because I don't know if my expectations are realistic. Luckily, she is not a picky eater, but pretty soon, she is going to get sick of eating raw carrots and plain vanilla diabetic yogurt with every meal. I just want to know what is realistic and then I can accept it even if it's not what I want to hear. Am I ever going to be able to give her more than five grams of carbohydrates at a time ever again? I'm trying to get help from the Cleveland Clinic, but am really disappointed in them.
I appreciate your difficulties. Dosing insulin based on carbohydrates is an important step to take to normalize blood sugars. Your pediatric endocrinologists have appropriately chosen small doses of NovoLog prior to meals in set doses to start. You'll learn how to count carbohydrates and adjust the NovoLog dosing soon. Training a family to care for diabetes appropriately is a process. You should have time set aside and scheduled with a diabetes educator who can walk you through the steps and get you trained and confident. It is not unusual to be anxious about insulin, blood sugars and diabetes when you're just two weeks into the diagnosis. That will pass, thankfully, with more confidence about the treatment. You mentioned that you think your expectations might not be realistic. It is normal to have more fluctuations in blood sugars during the first weeks of treatment. Your diabetes team will be working closely with you to assure appropriate insulin dosing. I would review your concerns in detail with them, also. Regarding your specific concern about carbohydrates, kids typically can eat a normal healthy diet with diabetes - limiting simple carbohydrates (sugary foods) when possible. Dosing based on the carbohydrate content of the food will be your next step toward excellent care of diabetes and should be done in consultation with your diabetes team.
Be sure to contact your diabetes team to discuss your concerns. Generally speaking, people diagnosed with type 1 diabetes go through a honeymoon phase just after diagnosis. During this phase, the pancreas will continue to release some insulin. How much and when is impossible to know. So, the original doses of insulin are usually very small to prevent low blood sugars. Be sure to ask about this when you contact your diabetes team.BH]
Last Updated: Tuesday June 08, 2010 19:17:53
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