Help? Possible early Type 1?


#1

So I need some advice. I have a 4.5 year old son who seems to pee ALL the time. I thought maybe he had a uti so I took him to the doctor. His urine was completely normal. No sugar, no ketones, etc. I had the doctor check his blood sugar it was 179 not fasting. The doctor had me come back the next morning for a fasting blood sugar, it was 98. Normal but high normal. The doctor had him do a glucose tolerance test. His fasting sugar was 99, his 1 hour was 154 (it took him 30+ min to drink the drink, it upset his stomach) we didn’t get to the 2 hour draw because he threw up after the 1 hour draw. His glucose test was normal but once again high normal. So an A1C and C Peptide was ordered. On the day of this testing his fasting blood sugar was 111. His A1C is 5.7 his C Peptide is 1.2 the doctor is stumped. He is an average boy 42.5 in 44 pounds, very active. The doctor said she’d refer us to a pediatric endo or we can monitor him a few times a week and check his numbers again in 3 months. I am so confused and not sure which route to take. Did we catch a type 1 early on or am I just a huge worry wart? Any thoughts?


#2

Absolutely go to the Pediatric Endocrinologist. No question.


#3

Certainly, constant thirst and urination are classic symptoms.

If this were an adult, that 154 number would hint at diabetes, but given the mildness of the other numbers, it would call for deeper investigation.

But your son isn’t an adult, and child physiology often follows different rules. (That’s why there are doctors who specialize in pediatrics, after all.) This is clearly a case that demands an expert. See the pediatric endo. Definitely.


#4

If there are any type 1s in your family he may be eligible to have his blood tested for certain antibodies which can I dictate very early stages of diabetes progression? Through Trialnet although results do take up to about 8 weeks so I would definitely go to endo first? But may be something you also consider, if endo can’t give e you a definitive answer.


#5

My brothers daughter is Type 1 so my sons cousin but that is the closest relation with any diabetic issues.


#6

I’m no doctor, and I would certainly say seek medical advice.

To me, it doesn’t sound like Type 1 or Type 2 diabetes. If his blood sugar was elevated enough to cause him to urinate a lot, there would be signs of glucose in his urine, and his A1C would be elevated.

Have you had him checked for “diabetes incipidus”?


#7

There is a suspected genetic component to type 1, and a definite and strong one to type 2. But with inconsistent or even contradictory symptoms like this, and however you slice and dice the logic, the conclusion ends up being the same: see the specialist.


#8

Not that it’s comparable but I just tested my son and daughter both about an hour after eating. My son (who I am concerned about) was 164 my daughter 113. They are 18 months apart in age. Ate about the same thing at the same time. I’m so sorry but this not knowing really one way or the other is driving me crazy. I know if my son is going to diabetic (type 1) it’s going to happen and there is nothing I can do about it but being up in the air is hard.


#9

You son’s numbers are definitely on the high side. I know it’s easy for me to say but try not to over-stress. Try using some mindful quiet breathing to let go of some of the stress. I don’t think you need to worry about anything acute. I agree with the others that your son should see a pediatric endo as soon as possible. You may have caught his diabetes early or there may be other things going on. Good luck!


#10

Thank You so much!


#11

Is there a family history of autoimmunity? Very few T1s have a family history of T1, but many have other autoimmune disorders in the family.

I hope you get answers soon, & the news is good. Waiting for answers is so stressful. My heart goes out to you.


#12

My brother has alopecia, his daughter is Type 1. My husband’s brother has Chrohns and Epilipsy. So it certainly is possible. Thank you for your feedback.


#13

I agree that seeing a pediatric endo is worth the effort. For reference, I was given a glucose tolerance test and passed perfectly. 5 weeks later I was Dx’s with type 1 and I was very ill. In those days Glucose tolerance was the best test available indicator.

There are so many more tools and resources today and the gateway is the pediatric endo. So I see no downsides to taking the jump. I also would not be surprised if the answer is continued testing and watching.


#14

Hi,

Your son’s results are not normal. They warrant close watching, and actions.

I am in the same boat with my daughter. She has been having deteriorating blood sugars over a few years. Our Hba1c last February was 5.9. We’re about to do a repeat hba1c any day now. My younger daughter has hba1c of 5.5 (also high for a kid), and am monitoring her closely as well. So I have done a lot of research over the past months. [Note: I am probably adult onset type 1, 9 years since diagnosis).

Normal blood sugars in kids run lower than adults. Typically would be in the 60 - 90 range and hba1c in the low 4s.

It looks like early and (possibly) slowly developing type 1. However, you might just have caught it early and it could be deteriorating quite quickly. He could go from apparently fine to DKA in a matter of days. You definitely need to watch closely.

In my daughters’ cases we are monitoring closely and following a very low carb diet (Bernstein / Typeonegrit). Using this diet so far we are having mostly stable blood sugars, though we can go into the 180s with fast acting carbs.

We are waiting to see a new endocrinologist later this month (our previous one who we only saw once in February went to America and hasn’t come back yet)…

If you would want to join the Typeonegrit group on facebook for more information and support, I can invite you (please message me your facebook name). In this group there are many kids with type 1. There are also many kids (some of them siblings of the kids with type 1) who have abnormal blood sugars (managed by diet) but not yet diagnosed or delaying the diagnosis.

I recommend Bernstein Diabetes University on U-tube. Here is the session on what all parents with type 1 kids should know.

https://www.bing.com/videos/search?q=utube%2C+berstein+diabetes+university%2C+kids+type+1&view=detail&mid=C0B502FC640F177D25D9C0B502FC640F177D25D9&FORM=VIRE


#15

What was the lab range for the c-peptide result?

His fasting was high at 111. With a high fasting, if he was ‘normal’ you would expect a higher in range c-peptide. If his c-peptide was in the low end of range, could also indicate possible insulin deficiency.

With hba1c of 5.7, his average blood sugar is about 120. This is about 50% higher than normal for a kid.

All of this makes early type 1 look very possible.


#16

As far as I remember 1st cousins are eligible for Trialnet. They have a website with all the info on it. But above all try not to worry too much yet cos from my experience with my daughter, children’s bloods don’t always fit the norm of what you might expect in a non diabetic child. My 4 and half year old daughter had some unusual readings both too low, 2.8 mmol with hypo symptoms and a rebound that I thought seemed high, ie 11 mmol. I had her tested in trialnet and she’s negative so that has given me peace of mind. First stop endo though as others have said.


#17

If your ultra worried, you might just pick up a machine at Walmart and check him if he’s nauseous. A blood glucose less than 79 means you should give him 15g of carbohydrate, wait 15 minuites, and retest. Repeat if necessary. Cheap walmart blood sugar machine
How to test blood sugar at home

This nutritional Label shows about 30 grams of carbohydrate for 1/2 Cup. So, 1/4 Cup would be about 15 grams of sugar.


#18

I have a glucose monitor for him. The thing is I’ve never seen him lower than 90. 90 is the lowest he’s been that I’ve seen.


#19

The reference range the lab has for fasting c peptide is 1.1 to 4.4 so at 1.2 he’s normal but at the very low end of normal.


#20

good deal