My 13 year old daughter'S dexcom data- suspected diabetes

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

Hello!

I’m new here and new to diabetes. My daughter is 13 years old and a bit overweight (she is 5’3 and 162 lbs) but otherwise normal and healthy. At a recent physical we were sent for routine blood work and her random blood sugar was 184 but everything else was normal. Back in the pediatrician’s office he said that this was high and he took her blood sugar again by pricking her finger in the office and it came out at 178 random and so we were referred to an endocrinologist.

The endocrinologist did a lot more blood work and my daughter’s hemoglobin A1C was 6.0% and her fasting blood sugar was 121. He also checked for a range of antibodies but my daughter didn’t test positive for any of those. He said that her situation wasn’t urgent and that she doesn’t have diabetes right now, but that her situation at her age was peculiar. He didn’t prescribe any medication but he did lend us a Dexcom and glucose monitor and showed us how to insert the sensor, asked us to monitor her for a month and come back with the data.

I’ve recently downloaded the app that comes with the Dexcom and pulled up the data to see what it looked like, but then realized that I have no idea what it means.

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Does anyone have any thoughts on her data? Or any tips that I could use to prevent her from progressing to full blown diabetes? I through out all of the candy in the house and have been taking her for evening walks to increase her physical activity, but I just feel like I’m up the creek without a paddle here.

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Hi Kitty!

I’m not a doctor, but those spikes over 200 are pretty worrisome, especially the one from thursday over 250. That looks like diabetes to me. Next time you see a number like that on her dexcom, it would be good if you could get a finger stick to confirm it. If you do confirmed, you should phone your daughter’s endocrinologist’s office as soon as possible.

I also wouldn’t change her diet too much until you see the doctor again, because if she is at the early stages of type 1 diabetes, that may make it hard for her to get a proper diagnosis. And a proper diagnosis is essential, because numbers in the 250s like that, especially overnight (I’m assuming your daughter doesn’t snack at night), tell me that she probably will need insulin. Also, know that not having any antibodies doesn’t mean that she can’t have type 1. There is such a thing as idiopathic type 1.

Once you do have a diagnosis, going lower carb on the diet will help with controlling her sugars, and increased physical activity is always a good thing.

I’m sorry you’ve needed to find us but glad to have you here. Your daughter will be okay!

3

Your daughter’s results would get her diagnosed with diabetes. My daughter’s endocrinologist told us that any reading over 180 will get a diagnosis for a child. Your daughter has frequent high numbers. Her a1c of 6.0 means an average blood sugar of about 130.

Type 1 or type 2. Firstly type 1 can be antibody negative. The doctor should do some more tests looking at c-peptide levels, insulin levels, etc. to see if this is deficiency of insulin or high insulin / insulin resistance.

Being overweight is neither here nor there for a diagnosis. But beware, some doctors may immediately assumed type 2 based on her weight. Type determination should be based on other factors as mentioned above.

I suggest that you start monitoring how much carbs she is eating. Carb restriction is definitely on the cards. This means more than just restricting candy, but also managing other sources of carbs such as grains, fruits, starches etc. If it is determined that she has insulin resistance then an oral medication such as metformin may be started, and when combined with exercise and lower carb eating, can be very effective.

If type 1 is determined, then treatment is insulin along with carb management.

Control of blood sugar levels is going to be critical for health.

I would suggest the following book:- Diabetes Solutions by Dr. Richard Bernstein. Whether you decide to go as low carb as he recommends or something a bit more moderate, there is heaps of useful information. “Bernstein Diabetes University” on U-tube may also be of interest, and there are more than 200 information sessions.

Typeonegrit facebook page is a very supportive community of parents of kids with type 1 and people with type 1. I enjoy the support and information I get there, specifically for kids.

This tudiabetes community is also an incredible and supportive community. The generosity of people in sharing time and experience is priceless. So keep asking anything at all.

To assist your whole family and support your daughter, you might want to consider moderating the way all of you eat… to reduce carbs. Low carb seems to be all the rage these days (perhaps with good reason), and there are increasing great resources. Key words include: paleo, ketogenic, low carb, primal. I love the recipes at http://alldayidreamaboutfood.com/ and http://mariamindbodyhealth.com/

Hope this response is useful for you.

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This point can’t be stressed enough. Both adults and children are frequently diagnosed as T2 without testing because of the stereotypes about body type and causation, which are looking more suspect and less correct with each passing day. You need to insist on a correct diagnosis with proper testing; no one else will.

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Thank-you all for the advice. My daughter is the only one in our family who is overweight and I just feel like I totally failed her as a parent by letting it get so out of hand that she has prediabetes.

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Stop that right now, mama. Don’t do it to yourself. It doesn’t help you or your daughter. This disease is no one’s fault, no matter which type she does or doesn’t have. It just is what it is.

Take a breath. She’s going to be okay, and so are you. Get the right testing, which will lead to the right diagnosis, then take the next right steps as to management.

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Hi Kittybear

The data you share suggests diabetes. However the good news is that that it also suggests that it is identified early and very manageable at this stage. But most importantly, IT’S NOT YOUR FAULT, or anyone’s fault, for that matter. I agree with others that the antibody tests are important so as to determine T1 or T2. But please understand that both are genetic, and if it’s T2, it wasn’t because of dietary choices. In fact, it’s the T2 that most probably drove the weight gain. I’m reminded of a very informative link on this at: http://www.phlaunt.com/diabetes/47101698.php

It reminds me of my own daughter’s experience who is of a similar age. I enrolled her in Trialnet several years ago as a result of my own adult T1 diagnosis. She’s lean and athletic, but had an A1c result at the top end of “normal” at 5.6% and her GAD65 anti-bodies were off the charts. All other antibody tests were negative. I put a Freestyle libre on her and saw she was spiking close to 300 after every meal that included any meaningful portion of fast acting carbs (bread, cereal, etc.). By comparison, my other daughter never goes over 120 no mater what she eats. Now if I were to follow the strict ADA guidelines regarding a formal diabetes diagnosis, she would not qualify. But I know enough about this disease through my own journey that her endocrine system is impaired. Will this develop into full blown T1, or is this an early onset of insulin resistance? That remains to be seen. However, my interest was to immediately minimize the load on her pancreas as much as possible, and she has a very forward thinking pediatric endocrinologist who agrees. She follows a low-glycemic diet similar to mine (but not as strict), and takes 500mg of Metformin XR daily. We started this 3 years ago. I check her with a cgm for two weeks every 6 months and today her numbers rarely spike to 120, and her last A1c was 4.8% Is she “cured,”…did we "reverse it? No, that would be naive and irresponsible to conclude that. I’ve bought her time and hopefully improved her odds. How much remains to be seen. What I do know is that if I had done nothing her sustained highs would have eventually started a cycle of glucotoxicity and beta-cell death.

My point being, diabetes happens. There’s not much we can do to stop it. And as parents, we wish we could just take it all away if we could. What we do have is the ability to manage it better than at any other time in history. You might have a window of opportunity to get her levels under control while it is still easy - and it might be as simple a solution as what my daughters endocrinologist recommended. Waiting until she reaches the tipping point of a “full blown” official diabetes diagnosis would be a tragedy. If your current endocrinologist is taking a “wait and see” approach, I’d consider finding another endocrinologist.

Good luck! We’re all here to help and support you.

Christopher

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