Questions about Son's Diagnosis--seems weird

Hi everyone. I’m a mom of a 12 year old with aspergers who was recently (this past week) diagnosed with diabetes based on a few blood tests and A1C (12, then 10 repeated). Here is our story, and a few questions…

I was diagnosed with T2 in April. I am overweight and had high triglycerides, blood pressure, elevated liver enzymes—the whole works. My genes plus lifestyle choices made this possible, but in that short amount of time, I’ve lowered my bg to non diabetic range, lost weight, and all my labs are now great. Docs are impressed. No drugs or insulin. I believe with continued fitness and diet changed, I will stay normal (fbs 80s, daily 80-105 max).

So when my son was thirstier than before and had been eating a really crappy diet (the goal with his sensory issues was to get calories in and let him just “graze”, he was so picky about all foods), I decided to just test him. He isn’t overweight so I hadn’t considered diabetes, and we don’t have a significant family history (just great uncles/my great grandmother), but he has a spare tire around his waist. He hasn’t lost weight, he’s gained, gotten stockier but is still average size. He isn’t as active as I’d like, plays video games a lot, and just wanders around outside—not driven to move. He is great at karate though.

Anyway, his fbs was 200. He then ate some pancakes with real maple syrup (quite a liberal amount according to dad who fed him) and he spiked to 400, then 500…I took him to the local (non pediatric) ER (this is over July 4 weekend) and they didn’t give him anything. He had glucose in his urine, and was sent home with instructions from our pediatrician to just treat with low carb until office hours which was in two days. We did, no carbs but berries and veggies, and he dropped down to 90s-100s, consistently.
The Ped swore he was normal and didn’t have diabetes. She took his blood, he had no glucose in urine, didn’t fit either type 1 or 2 profiles, and just said we’d wait for the A1c. She was shocked the next day when it came back at 12! She didn’t understand. So she said we just caught it early and said if he had large ketones to go ahead and bring him to the ER. He did (largely from the lchf diet he’d been enjoying), so we went. He was rosy, chipper, and at the ER (children’s this time, downtown) they thought he looked great, assumed he had type one bc of age and non-obese and we just caught it VERY early…even though it looked like he had had elevated bg for some time. The ER doc told him he could have a bunch of high carb crap and of course he ate it, which sent him over 300+ with ketones, so I was pretty pissed off at that point.
We still had not taken insulin. Five days, no insulin, bg 90-mid 100s on just diet.
The next day we met with the endo and she said we had to wait on the anti bodies testing which would confirm his diagnosis, but they were still pretty certain he was type 1 bc of age and not obese. We started him that night on 3 units of lantus and that’s it. His bg has remained in the 90-130 range (with a couple of 160 spikes when he’d eaten something more carby) but nothing has really changed. His fasting bg is still 100-115.

Is it weird that I am suspicious that he has type 1? I honestly thought that came on pretty quickly, and this was NOT the case with our son. His presented quite similarly as my own T2, around the same time frame, after the same (unfortunate) habits. He has had no viral infection, no injections/immunizations, and no other symptoms aside from drinking more water and peeing more. I know about the “honeymoon” period…but I also assumed that was after a child had a significant DKA event which prompted diagnosis, then responded really well to insulin treatment/had to decrease amount. We’ve been steady across the board.

I want to brace myself for the inevitability that he is, in fact, T1-insulin dependent, but he really doesn’t fit the mold. His diet and activity level seems more T2, our lack of T1 in our family, but I definitely could be wrong. Sorry for the length, but I’d love your thoughts.

1 Like

What “type” or “mold” are you referring to in reference to Type 1? Because I’m not aware one exists. Onset of Type 1 can be very gradual or very abrupt. Many people are one of “the chosen”, those with Type 1 with absolutely no family history of any type of D. A low-carb and/or high fat diet does not lead to ketones in the blood or urine. No definitive trigger or event that causes Type 1 has been identified (yet). A fair amount of people never come close to DKA, even with relatively high A1c’s. What in particular is leading you to suspect your son has Type 1? Type 2?


The mold or type is referring to mainly docs statements: “he’s too skinny to have t2,” “he’s gained weight, not lost like most t1s,” “most t1s have very quick onset from precipitating event,” etc. Not making things up, this is exactly what multiple docs from two ERs, pediatrician’s office, pediatric endo, and dietician all said to me. Couple that with my own genetics and disorder, hence my questions.

A controlled lchf/ketogenic diet can and does lead to ketones in urine.

First let me say that I’m sorry to hear that your son has diabetes. Never an easy thing for a parent to go through, I’m sure. I’m glad you’ve found this site, though!

I was going to say everything @rgcainmd said. Not everyone is in DKA when they are diagnosed, not everyone has a family history of Type 1, and not everyone has a suspected trigger for Type 1.

When people say that Type 1 comes on quickly, they usually mean symptoms come on a couple of days or weeks before diagnosis, rather than months or years that Type 2 symptoms may be present (though lots of people with Type 1 report symptoms for months before diagnosis). If you hadn’t been familiar with diabetes symptoms and tested your son as soon as you noticed them, he may well have ended up with much higher blood sugar and ketones within a couple of weeks.

1 Like

That’s what I’m thinking, had we not keyed into his symptoms it would have gotten worse.

So, I’ve read that some don’t even test positively for antibodies yet are T1. How can we definitively know which type he has? If it is T2, I’d like to eventually keep it controlled without insulin. How would we know? Is there a possibility he could be a 12 year old normal weight T2?

Sorry if I’m asking dumb questions, still trying to wrap my brain around this. His special needs status makes this even more of a consideration—he’s not very forthcoming with information. lol Much detective work involved. :sweat_smile:

Aside from the fact that you have Type 2, what factors lead you to think he has Type 2 instead of Type 1? To me (and I’m not a doctor), what you describe seems to be “typical” Type 1, just Type 1 that was caught before things became a medical emergency (which is good!).

I think in a small number of cases antibody tests can be negative. When I was diagnosed antibody tests weren’t available, so I’ve never had them and am not as knowledgeable as others here who have had the tests done. Another test that can be done to help distinguish Type 1 and Type 2 (which, again, I’ve never had) is a c-peptide test to find out how much insulin your son’s pancreas is producing. But I’d wait until you get the antibody test results before making things more complicated than they need to be (since if the antibodies are positive, it won’t even be a question).

1 Like

First, Type 2 isn’t a diagnosis. Well, it is, however it’s not a specific diagnosis but rather one of exclusion. When none of the diagnostic markers for other types of diabetes can be detected, one gets dumped into the open Type 2 bucket. Basically, Type 2 is the “everything else” category, and it includes a number of different profiles. This study casts some interesting light on the subject.

That’s not meant to be critical of the profession in any way; they do the best they can with the technology available at any given time. The fact is that the mechanisms of other forms such as T1, MODY, etc. are just better understood and more detectable. For now, that is. Knowledge continues to grow apace.

The fact that your son’s fasting numbers are generally good while carb-rich meals send his numbers into the stratosphere could indicate impaired beta cell function OR insulin resistance OR a combination. That could be T2, or slowly developing T1, as discussed earlier in the thread. Was his c-pep tested at any point? You didn’t mention it (unless I missed it; wouldn’t be the first time :wink:).

1 Like

Well, his habits/genetics, his numbers reflecting my own, his response to the lchf diet, time frame same as mine. All of this could mean (and likely does) mean nothing.

Let me ask, what seems like a typical T1? Why would all of his doctors say he likely is T1 because of age but doesn’t fit the typical model? This is why I’m frustrated, I guess. lol

I agree about T2. Thanks for the link, I will definitely check that out.

You didn’t miss it! I’m not sure, honestly. His c-pep should have been tested and/or is coming back with the other labs the pediatric ER ordered. I saw the list of tests run and brought that paperwork into the endo. appointment the following morning, but the receptionist never returned them. I was in such a brain fog that I missed that. The endo. said that the tests would take a couple weeks, hold tight, and I asked for copies of all labs. She made a note to have them sent to me. I was also told to call in a week or so to see if they’d come back, otherwise, they would call. They are also wanting him to come back in in a month for a check up.

I just want answers either way. :confused:

Of course you do. This has to be frustrating beyond words. Having diabetes is one thing; but being the parent of a diabetic child has to be one of the hardest and most enervating jobs in the world. We get it. And you have a lot of company in this community. One of our site administrators is the parent of a T1 child, and the community contains countless others.

Historically it was the accepted traditional wisdom that T1 strikes kids and T2 strikes adults. That mindset isn’t quite as powerful as it once was, but it’s still prevalent. And it leads to some very bad results, as described here and elsewhere.

Whether or not that stereotype was ever accurate is moot. It isn’t accurate today—but many doctors learned it in school and still hew to it, consciously or unconsciously.

Well, I don’t think that there is a “typical” Type 1, but what I meant is that the diagnosis scenario you described doesn’t seem to set off an alarm bells for, “This doesn’t seem right…” to me. Insulin production in Type 1 (even in kids) doesn’t go from 100% one day to 0% the next, and so it makes sense that you may have caught this before blood sugar levels got super high, when there was still enough insulin to make a LCHF diet work and still enough insulin around that weight loss and DKA had not yet started.

In any case, it seems you have the right tests coming with antibodies and c-peptide. Those may give you all the additional information you need to know. Or, if they are completely different from what would be expected in Type 1, then I’m sure the doctors will also get suspicious and look a bit deeper.

1 Like

I know that this is a major problem for adults diagnosed with Type 1. But I’d be curious if it’s the same with kids. I often hear of Type 1s being diagnosed as adults, but have only heard of one Type 2 being diagnosed as a kid. But maybe this has changed in recent years and Type 2 is just as common in kids as Type 1?

I don’t know about “just as common”, in the comparative sense, but T2 is a rapidly growing problem in young populations, just as the growth of diabetes generally is a problem everywhere. And not only in this country, either.

That’s what I’ve read, and to be honest, many of those increased risk factors do apply to my son, aside from weight gain. That’s why, coupled with my own diagnosis, genetic predisposition (not toward type 1, adult/type 2) and the timing, just had me curious. It’s not an excuse, but his aspergers took the main stage and we never considered a metabolic/autoimmune issue. He did gorge on whatever carbs he could get, refusing protein (looks funny, don’t like the texture, this one feels weird), and play video games. So much of this is on me. I admit being worn out after therapy stuff, etc. But we’re changing now!

But for now we are doing all that we can do, I guess. Staying lower carb, getting exercise, monitoring, keeping him on some low basal insulin for now. We’ll see!

Thank you all so much for reading my novel and your thoughtful responses!

Many of us diagnosed with Type 1 have no family history of it. Do you have a family history of any other autoimmune conditions (thyroid disease, rheumatoid arthritis, multiple schlerosis, celiac disease, etc.)? It seems to be the history of autoimmune conditions in general, not Type 1 in particular, that sets up the genetic predisposition. Autoimmune diseases, including Type 1, are also on the rise, so it’s still possible to develop Type 1 with no family history of any autoimmune condition.

My sister was recently diagnosed with hypothyroidism, but she was the only one on my mother and father’s side. No one with arthritis, no MS, no celiac. Most on both sides of the aisle lived long, healthy lives with little to no complications. My great grandmother on my father’s side had diabetes in late adulthood. One or two great uncles were also diagnosed after middle age, as well, same branch of the tree.

Also just want to note that, while not the dominant hypothesis, there is a theory (called the accelerator hypothesis) that people who are Type 1 and Type 2 are essentially on different ends of the same disease spectrum. So, for instance, a classic Type 2 may have all the insulin resistance and perhaps too few beta cells and systemic inflammation but no autoimmunity, while a classic Type 1 may have autoimmune beta cell destruction and no insulin resistance, but that for many people, it’s a mix. In which case a genetic predisposition to T2 may also make some individuals more vulnerable to becoming T1 if they experience autoimmune attack.
In any case, I wouldn’t get hung up on the diagnosis. If he needs insulin he needs insulin. I wouldn’t feel bad about it. It’s more work and stress, but doesn’t mean his prognosis is any worse or better. In fact, one study argued that T2 in children should be considered worse as its progression is faster and long-term prognosis is actually worse.
FYI I’m from a family with a STRONG disposition to T2 (about 7 of my Dad’s 10 siblings have it) but my son came down with T1 at age 2. I suspect his sugar metabolism was abnormal from birth, probably he just started out with fewer beta cells to destroy, which may be where the family history comes into play.
Also If you’re curious about your genetic risk, you can always do something like 23andme, which does a panel on T1D and other autoimmune diseases. Of course, ou have no idea what they will do with that genetic information afterwards.

I have to agree with Jen (and others); I don’t see anything in how you described your son’s presentation that jumps out as “atypical” for a person with Type 1. I’ve read countless diagnosis stories from other parents of children with Type 1 and, no offense intended, your son’s symptoms and presentation don’t sound different from many, many of the other children with Type 1. And definitely not very dissimilar from my daughter’s presentation. Although Type 2 diabetes is on the rise across the age spectrum, the incidence of Type 2 in children is still very low. Everything you’ve written says Type 1 to me. Doesn’t mean it definitely won’t end up being Type 2, however.

In the case of Type 2, it’s a progressive thing for many folks, i.e. loads of weight can be lost, few carbs can be consumed, phenomenal amounts of exercise can be done every day, and insulin will still be needed. Others can manage it for years without any meds with relatively few lifestyle changes. Just saying this because too many people with Type 2 are “set up” to feel like they somehow failed or didn’t try hard enough if their Type 2 progresses and they need to start taking meds or need to add insulin to their treatment regimen. This is something you’ll learn pretty quickly (if you don’t realize it already): Diabetes, regardless of type, doesn’t play by the rules; it will take the course it’s going to take despite anyone’s best efforts. Some folks with poor control develop few, if any complications, and some people with stellar control end up with complications. All anyone can do is their best to maintain tight control to minimize the risk of developing complications. And keep their fingers crossed…

1 Like

Amen. That ought to be carved in stone somewhere.


There is absolutely no family history of type 1 or 2 in my family. I was the oddball who got type 1. You can’t always go by family history alone.

1 Like