Diagnosis: DKA in the emergency room

Our story is, I believe, almost perfectly typical of a classical T1D Diagnosis.

Right about when my son turned 11, his behavior started changing. From being always full of energy, he started napping after school. He became less interested in extra-curricular activities.He would eat ravenously at every meal – more than anyone of us, including his strapping 17-year-old brother, and drink like a storm drain. Interestingly, he had always woken up multiple times per night to pee, so that part of him didn’t change.

His change in behavior worried my wife and me badly enough that we actually met with his teacher, to discuss if there was an issue in school that might have caused a problem. But nothing came out.

Then, one day, he got an ear infection. We took him to a nurse clinic, who prescribed antibiotics. A couple of days later he started losing weight. Ater four days, he had lost 10 lbs, and we became worried. Exactly a week after he had started this ear infection, we took him to a pediatrician – unfortunately not his pediatrician, as she was not in that day. The pediatrician felt that it was an antibiotic issue, changed his antibiotic, and warned me that it would take two days before it started working – so I should not panic for 2 days. That day, he lost 3 more pounds and became quite apathetic, barely able to drag himself to the bathroom, and responding to us by monosyllables.

The next morning, he had lost two more pounds and was 15 lbs down his original weight. My wife had a look at him that morning and told me: “we are losing him.” Stupidly, I replied that we needed an extra day before the antibiotics would start working. When you looked at the boy, the skin on his face was stretched over his bones – you could see his skeleton underneath the skin. His eyes were starting to bulge out of their orbits – they looked like Marty Feldman’s in Young Frankenstein. I realized then that, possibly, he was seriously affected by something. I still had no idea what it was.

After all that, I still took him to the pediatrician – the same one who had told me to wait a couple of days before worrying. When we came out of the car, my son was dragging himself and using my shoulder to get up straight, so the hospital valet asked us if he needed a wheelchair – I was rather annoyed with my son, as I felt that he was just not pulling his weight – but my wife accepted the chair. In fact, he was close to being in a coma at the time.

The pediatrician listened to him for a minute (he was breathing strongly and loudly – Kussmaul breathing, a characteristic sign of in-extremis diabetes), and told me that she needed to check his BG. He came out with a reading of 500. That is when she told me that he was likely diabetic, and sent me straight to the emergency room.

I made my last mistake of the week and decided to take him to the closest emergency room, which I knew would not have a long wait time, instead of taking him to the nearest Children’s Hospital. When we got there, they admitted him, then told us that they would transfer him to Children’s by ambulance, because Children’s was much better equipped than them in dealing with pediatric diabetics and that he was too far gone to go there in our own car. This ambulance ride, of course, cost us a few thousand dollars more :slight_smile: We found out that he was in severe diabetic ketoacidosis (DKA), a word whose meaning we did not know at the time. His A1c was 12.5% – so he obviously had been a diabetic for several months already.

Some points that I note every time I replay the story of his diagnosis in my head:

  • I cannot believe that we did not diagnose him months before – he had many typical signs. The primary reason I did not think of it was that I knew T1 was genetic – I thought it meant you had to have a T1 in the family. I never realized that 9 kids out of 10 get diagnosed without a T1 in their ascendance.

  • Even though I always say that I consider a doctor an advisor, not a decision-maker, I still made the decision to accept the pediatrician’s opinion that this could wait another two days, although my son had already lost 10 lbs in a few days.

  • Even though I could see my son dying in front of my eyes the next day, I was still following the doctor’s opinion that we needed to wait an extra day before worrying. He would likely have been dead before that, had my wife not realized what I was too dense to see.

  • Pediatric diabetics in DKA are in a severe emergency, that sometimes results in death, and that a normal hospital emergency room is not equipped to deal with well. This is one more thing I did not know.

I often think back at the many mistakes I made. I normally think of myself as a good decision maker – but my chain of errors in judgment would have caused the death of my son, had my wife not seen the light. This has caused me to become much more weary in my judgment when considering the many decisions we make every day about diabetes management – probably for the better.


I hope the parents here will take some advice from an old diabetic “kid”, who has a large perspective from his years.

You are not to blame. It is not your fault. You obviously did everything in your power and used all that you knew at the time. We don’t blame you for not making an immediate diagnosis. Doctors missed it! How in the world could parents be expected to know? You did not cause it. It is not strictly genetic. You gave us life, and then you saved our lives a few years later. Please do not blame yourself for this.


2 posts were split to a new topic: Vision problems before diagnosis?

Just got around to reading this and yep, as you said earlier, very similar to mine except I was 20 years older and it was me making the dumbass assumptions, not my parents. Also zero family history of any type of diabetes or any type autoimmune. BG 600/a1c 12.5. I didn’t actually feel that bad, I had just attributed it all to being 30 and could easily explain all the symptoms away. Once I got my bg under control, however, I gained so much energy that I felt like i could go dancing until midnight every night! I was going to go running when I got back from urgent care.

But I had the drinking gallons (first hot week of summer, it was my first week back to running after 3 months off due to a grade 3 calf strain in March), blurry vision (hadn’t updated my prescription for a while), my mouth felt weird- I usually like acidic food/drink but even wine hurt my tongue because of the thrush (THAT was the only thing I couldn’t explain away), some flank pain (due to a small kidney stone, I’ve had a couple), and nausea due to my period (not unusual for me). My friends said I looked gaunt after the fact. I lost 10 lbs without trying. I only went to urgent care because I thought I had a uti due to the thrush-itchiness (not ear infection but similar minor thing). I had shingles in November/16 and I thought that THAT was an ear infection and now I think that was the major accelerator of the t1d symptoms that had come and gone for a couple years. They heard the breathing, smelled my breath, did a finger stick and sent me straight to the hospital…


I am sorry this had to happen to you!

Your story and mine are just the same. I had never read my father’s version of the story so it’s interesting to read it now.

I think he should be "more weary in his judgement’ in a great many other things too :slight_smile:


I’m about to expose (again) how little I know about T1 - I thought it was genetic?

It is not strictly inherited. You can have traits you inherit that make you more likely to get it, but it is triggered by something else in addition to genetics. Neither of my parents had the disease, and neither of their parents did either.

You can look at a case of identical twins, one can get it and the other might not.

The context of what I was saying is that parents should not blame themselves for giving the disease to their children.

According to Dr. Warram, several factors are central to the risk question: the person with diabetes has most likely inherited a predisposition to the disease, and secondly, something in the environment triggers the disease.


Ah, ok, that makes sense - thanks!


I am so fortunate that the doctor my mom took me to suspected diabetes immediately and had me pee in a cup and sent downstairs for a blood draw. An hour later, my parents got a phone call from the doctor that my blood sugar was high enough that I could go into a coma and they needed to bring me to emergency immediately. That was more than 25 years ago, so it boggles the mind that doctors still don’t do a blood sugar check to rule out diabetes.


Actually, it is genetic, with an environmental factor also involved.



My understanding is that it is one of three things or a combination of the three. It “could be” either genetics, environmental factors OR the bodies reaction to some previous illness that causes the onset. OR a combination of the three…but since science has definitively proven any of these, no one is totally certain.

Welcome @Maryj711! Please feel fee to drop by and introduce yourself!

Also, if you’re in the sharing mood, we’d love to hear more about Your Story!

I think we all largely agree! There is enormous evidence that there is a strong genetic component, a genetic lottery that is highly individual. An external factor is often a trigger – but most endos I have talked to believe that if it had not happened on that trigger it would likely have happened on another, as it is likely the straw that breaks the camel’s back as far as overworked surviving beta cells. And, possibly, other environmental factors are at work. So, as @ClaudnDaye mentioned, in the end, we don’t have a perfect scientific answer yet – but a good consensus of the factors at work.


This is what I’ve understood about all autoimmune diseases that I have looked into myself - that there is a gene passed down, but until it’s triggered by some external factor, you don’t actually have the disease; just the potential for it if it is triggered. For example, something like 30-40% of the population carries the gene for Celiac Disease, but only about 1% will actually have Celiac Disease (I’m trying to remember where I read that…).


Absolutely, the parents should NEVER blame themselves.

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Before our son was diagnosed, neither my wife nor I had Type 1 on either sides of our families, as far back as we could track our history. I agree that there are probably “markers”, but markers themselves are only one portion of it.


Wow, that’s amazing. There hasn’t been a T1 in my family on either side since my great grandmother, but we DID find a connection.


Mine came out of the blue… a distant cousin of mine has t1 also but that’s the only family link I know of. I wish more was understood about what the environmental triggers really are



We are with ClaudnDaye, we can’t find type 1 or type 2 on either side of our family, and we have a big family.


We DO have Type 2’s on our side, but T1 and T2 are not the same disease at all and they are brought about by different triggers. I’m with @Sam on the raging trigger! :laughing:


Ditto…my wife had 6 siblings, I am one of 9, and my mom and dad all have 10+ siblings in their families going back 3 generations. At one point, my grandparents had 69 “grand kids”…this was back in the 80’s - they’ve since passed, but our families are massive.

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