I am very confused about my 6 year old's diagnosis of Type 1 diabetes

Carmen - posted on 06/27/2016 ( 3 moms have responded )

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On May 9th I took my daughter to the doctor because she said she had a stomach ache and sore throat. They checked her for strep and decided to do a urine test just in case she had a UTI. Strep was negative but she had keytones (not sure how much) and sugar in her urine. Then they checked her BG and it was 225, it had been about an hour and a half since she had last eaten. They told me that was an automatic Type 1 diagnosis. She also had only gained about 2lbs since the fall. I was devastated!! They sent us down to a Beaumont hospital right away and told me and my husband to pack for 2-3 days because we would be down there learning all we needed to know about being Type 1. We got down there and they ran a bunch of tests, checked her urine and BG. The doctor said he could smell it on her breath. The thing is Every blood test and everything else done came back Normal! They called a pediatric endo and he said her numbers are great, she can go home. We were exhausted by this point so we made the 2 1/2 hour drive back home at 1am. The next day we went back to her PCP and she set us up to speak with a dietitian and a diabetic specialist. They gave us a monitor, test strips, insulin, everything that we would need. They also did more blood tests. I actually never heard back from them so I guess everything was fine (I need to call to see how it turned out, I have no idea what her A1C even is) We have her on a low carb diet and did just what they said to do. She has had many lows under 70 and one time only 49. And ONLY 1 time was she a little high, her BG 3 hours after eating was 159. They said to give her a half unit if 150 to 199. Instead I had her drink a bunch of water and run around for about a half hour outside and it came down to 79. It's not that I want my daughter to be type 1 but what the heck is going on? Is this the "honeymoon phase"....was it a misdiagnosis? I just can't see it being diagnosed wrong since she had only gained 2lbs since fall, had the sweet smell on her breath, had keytons and sugar in urine and a high BG reading of 225. Can anyone give me any info as to what is going on? Sorry this is so long but I wanted to give as much info as possible!!

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Sarah - posted on 06/27/2016

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This is confusing and no doubt frustrating and worrisome for you. I would not think it is wrong diagnosis but you do need her A1C results. While the one random test of 225, is indicative of IDDM, the A1C is the confirmation. An A1C level of 6.5 percent or higher on two separate tests indicates diabetes. Also a fasting sugar of 126 mg/dL (7.0 mmol/L) or higher on two separate days is diagnostic. Finally a glucose tolerance test (you probably did one when you were pregnant) can solidify the diagnosis.
When looking at your child, she had ketones in her urine, glucose in her urine, a high random sugar and symptoms (belly aches are the hallmark of unstable sugar in kids)
Now, why was the teaching hospital so nonchalant? Don't know, unless they misunderstood why she was there? Is it possible the staff thought she was already diagnosed and just coming down for sugar correction? That may have been why they just checked numbers and said she was good to go with no teaching.
Get hold of all her labs and get her in the care of a good endocrinologist nearby. Her pediatrician is not the one to handle her diabetes. Not that he could not manage but there is so much new information and so many new devices for kids that you are better off with the specialist.
How often are you checking her BG, and what are her typical ranges. She may only require 0.5-1.0 unit of regular insulin here and there to control her sugars. You were wise to not give her a dose at 159, as a half of a unit can drop a child by 50 points, then you have her under 100 and maybe not feeling good.
As overwhelming this is now, it is going to become part of your life and part of hers very quickly and you will all learn what to do and what to expect. I see newly diagnosed kids at school all the time and within a few months they are so savvy at self management. Even the young ones!

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Sarah - posted on 06/29/2016

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Her A1C is indeed a good number and really not indicative of diabetes. An untreated type 1 is usually way higher. 5.2 indicates an average sugar of 100-110 in recent months. I think your plan to keep checking her sugars sounds good and I'd also keep a super detailed log of what she is eating and drinking, and her activity. A good ped/endo guy will be helpful. I am very curious to hear how this plays out so please keep us posted. Good Luck to you!

Carmen - posted on 06/29/2016

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Thank you very much for your response! I finally got access to her lab results and on two separate blood draws her A1C was 5.2 which is great! But still leaves me with many unanswered questions. We have decided to continue to test her BG before meals and before bed but let her eat normal balanced meals with out the carb counting because she was going low way to often. They had told me all of her tests came back normal but upon examining the results I found a few that were either higher or lower than the standard range that Beaumont had. Here is one: Beta Hydroxybutyrate (3-OH Butyric Acid) Hers was 1.14 mmol/L and the standard range is 0.02 - 0.27 mmol/L. And some of the other tests that were out of the standard range all pointed towards a liver problem when I googled them. We are going back soon to her PCP and I am requesting more information and to see a Ped. Endo. for more answers.

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