Undiagnosed diabetes and a plea to take action (The one where I go all public service a again)

Know the signs. Share the signs.

A week ago today, a 13-year old boy who lives in a normal middle class town and has smart, caring parents and who is surrounded by teachers and nurses and coaches a friends, died of the complications of undiagnosed Type 1 Diabetes.

And it happens all the time. When it happens, people say all kinds of things. Why didn’t the parents know the symptoms? Didn’t the doctor do a test at his annual check up? How could the school not see?

But here’s the stark truth: We are not properly equipped as a society to keep this from happening. And happening again. And listen: we are America. We have free internet just about everywhere and fresh cupcakes out of kiosks. Yet we don’t have even a basic system of information that alerts parents, teachers, nurses, doctors and just plain everyone to what the signs and symptoms of Type 1 diabetes can be.

Think it only happens to the clueless? Look, I’m not Einstein, but I’m relatively smart. I read lots of parenting books and even edited a parenting publication. I’ve sat down and interviewed T Berry Brazelton and yes, even Dr. Spock (not the Star Wars one, silly!) before he died. I’ve met Fred Rogers and talked parenting, and I always had a mom group for discussions as my kids grew up.

But undiagnosed diabetes very well could have killed my daughter. I shared our diagnosis story HERE but I’ll remind you of this:

Lauren had almost all the classic symptoms of Type 1. Excessive thirst. Urination issues. Weight loss. Irritability. Now let me tick those off in the head of the average parent who has never been educated about the signs of Type 1 Diabetes.

*Excessive thirst: It was the end of summer and a hot one at that. Lauren and her friends were always running around and playing. Yes, she was drinking a ton, but to me, it was the heat. I chug down water as it is. Made sense to me. Even if it was kind of odd.

*Urination issues: I know it sound silly now, but I never sent either of my kids to pre school. I took a lot of heat for that on the playground. Moms were always saying my kids would never catch up and that they’d be traumatized when they started kindergarten because all the other kids would be so well adept and my kids would be floundering. So when Lauren started wetting her bed, a friend said, “I told you that no pre school thing would take its toll.” Kindergarten was the reason. I was a bad mom. I actually believe that. I wasn’t alone there. Her kindergarten teacher – whom I adore and still do – pulled me aside one day when I was in volunteering and said “I don’t think Lauren likes school. She’s constantly looking for reasons to leave the room. It’s the water fountain or the bathroom. You might want to talk to her.” This is a top-notch teacher, by the way.

*Weight loss: She was growing taller. And thinner. I (believe it or not if you know me now) was always rail thin. My husband still is. So to me, it was just how she was growing. It was not until her school pictures (taken three days before her diagnosis) came back; Lauren with her weak smile and her clothes almost falling off her, that I felt shame. How could I not have seen it? But I didn’t. When you are with a child every minute, the change might not be as noticeable.

*Irritability: The week before her diagnosis I was absolutely convinced I was a horrible mother and that somehow, I’d done something to morph my delightful child into a monster. At my older daughter’s soccer game, I was so at wit’s end with her behavior that a friend separated us and took her for a ride. A few days before I had lunch with my dear friend Jean. Lauren came along. Jean bought her a giant cookie and Lauren said she’d take it home. When Jean got home she found it in the car, forgotten. And thought about how oddly Lauren had behaved that day. Not like the kid she knew. When it all went down Jean told me she remembered thinking “strange. Something is strange.” Jean has four amazing kids Even she did not see the connection.

It was all right there in front of me. My daughter did not die. That god in heaven she had an annual check up scheduled (which I almost carried her into and she was rushed to the hospital from). Would she have woken up the following morning had I not had that appointment? Thank goodness I’ll never know the answer. And if she had not had that appointment, would I have caught on enough to call her pedi? I don’t know. (I will say this: the moment I got in the door of the pedi’s that day and rattled off what was going on, they KNEW. That office would never have not made the diagnosis if I’d been educated enough to know the symptoms).

So let’s say her check up had been six months before. Would a screening or test at that have shown Type 1? Probably not. Type 1 can come on slowly, but it usually comes on pretty quickly. So while I absolutely believe that screening should be done at each and every check up, it’s not nearly enough.

What we need is a way for everyone to know the symptoms. So share this. Share it with your teachers, your nurses, your doctors and your friends. Any time you have a friend with a child who has a stomach bug or even one symptom, mention Type 1 diabetes and ask them to read up on the symptoms.

And to take it a step further: call on all the diabetes centers, programs, charitys and groups to step up their symptoms awareness programs.

Do this: Become vigilant. Overreact. Obsess if you want. If you know someone who you see symptom(s) in, force them to take action.A blood glucose strip costs a buck. I’d pay that times a million to keep that person alive. Because even if we just save one single child from a completely unnecessary death, we’ve changed the world.

I’m a caring, capable and educated mom, and yet: It could have been Lauren. Luck is what saved her. Let’s save the rest of the world with something more solid: Knowledge. We are better than this. Let there not be one more unnecessary, completely avoidable death from diabetes.

22 thoughts on “Undiagnosed diabetes and a plea to take action (The one where I go all public service a again)

  1. Great post Moira.

    Reading this was like looking back at the time before Marcus was diagnosed. I explained all the symptoms away. They all fit something else. All but the weight loss which I didn’t notice till he was in the bath and I could see his little back bone.

    Urine tests at well visits might not catch then all but it is a good step forward. Id like to see a poster in every doctors office and school nurses office. A poster that basically has everythign you’ve listed, maybe a few other symptoms too. Illustrated and easy to read. Something parents and kids sitting in the office will read a couple times at every visit while they wait on the doctor. Much like the car seat posters they have now. Maybe then when symptoms start popping up and it isn’t near a well visit check something will click in the parents or child’s head. Something they read or saw that will make them wonder. It isn’t the best answer but its a step forward. Something just to alert parents.

    I’ve been saying this for years. I wonder who I would pitch the idea to (Im sure Im not the only one that has this idea). Would ADA take the project on? JDRF? How much could it cost to draw up a poster, print them and send them free of cost to medical offices? Im sure it’s a lot but really isn’t it priceless if it saves a child? Maybe a joint effort with the ADA and JDRF?

    Just a thought.

  2. I could have missed my own son’s diabetes, and I have it myself. I didn’t connect all the dots, despite him having all the symptoms. I only noticed the thirst, and finally checked his sugar, but had attributed the hunger etc to other things. One thing to know is that it can have a very rapid onset the younger you are– he was only 23 months old and having symptoms for only about a week and his blood sugar was 798. scary.

  3. Great article. I tell anyone who wants to listen about my sons story and the symptoms that lead us to the dr. And last night my son and I saw a commercial with Jared Allen ( a famous football player) his wife and young son with T1 talking about all of these symptoms as well as JDRF. We were both like “thats awesome, you never see these kind of commercials.” Now that’s a great way to use your “celebrity” power….my heart broke when I read the article about this beautiful young man.

  4. Great post. I did know the symptoms, but STILL missed them. Even though my son was drinking all the way across Nevada on our way to Idaho to ski. And, stopping every few miles to use a bathroom (not always easy in the middle of nowhere with a kid who wont just stand on the far side of the car) He felt sick. He was tired. And, I realized later when we got the pictures from our vacation, he was SKINNY and his skin was grey.

    I could also smell ketones on his breath (but our older son always had ketone breath when ill at all, since he was very thin.) And I didn’t know it was ketones, then.

    A week or so later I took him to the doctor because I wondered if he had flu. But his older brother said “Maybe he has diabetes” and when we were at the pediatrician I asked that they test him. They drew blood. It was before the instant reading, but by the time I drove the hour home, there was a phone message waiting for me. That was 19+ years ago.

    We were very lucky. He still is not prone to developing high ketones, even when ill. So, no hospital, no coma, “only” BG at around 800. And, turns out his big brother diagnosed him. (A biochem and molecular biology degree helped!)

    I knew a boy when I was young who went into a coma and died at 12 from Type 1. I am so sorry we still miss these things. But it does creep up on you. I have probably scared a lot of parents by suggesting their child “might” be developing Type 1. But better safe than sorry.

  5. Thank you for this Moira. Often-times, people don’t know the symptoms, but sometimes, even if we see them, we find other ways to rationalize them as being due to something other than diabetes. Even my own mother, a registered nurse, feels guilt over not catching on that something wasn’t right with me before bringing me to the pediatrician’s office to get checked out (all the while, I attributed my thirst to the heat, and my need to use the bathroom to the excessive drinking). Fortunately I’ve never been in DKA, and obviously I’m still here, but who knows how short that window of opportunity is.

    To take a wait-and-see approach is dangerous, and a BG test only costs about a dollar – a dollar well spent, regardless of the outcome. Educating parents and adding BG tests to the standard physician-visit protocol only makes sense. It beats finding out the hard way.

    I’m so glad you wrote this.

  6. Great story, Moira. I, too, had flashbacks to 4years ago when my than 21 month old son had ALL these symptoms, but not at first. Type 1 snuck up on us. For a long time, the only sign we had that something was not right, was poor weight gain and a not so great appetite. He only weighed 16lbs @ 21 months of age. Our pedi finally sent us to GI for further eval, but he wad unimpressed, drew labs, which were ALL normal including glucose. It wasn’t until the GI doc prescribed high calorie, high sugar nutritional. shakes, did the polyphagia, polyuria and extreme irritablilty show up. That took about 2 weeks. I knew something was wrong, the whole time. Call it mothers intuition, I am also an Emergency RN, so my education was validating my hunch. I had access to a glucometer, I checked Zack’s glucose, first thing in am, 300. That was the beginning of the end of life as we knew it. Did I mention I was 9 weeks pregnant at the time as well?
    I think PSA’s would be a great addition to spreading awareness and educating parents on signs and symptoms of T1D. But ,for now, you just gotta go with your gut. As a health care professional, I tell
    all my patients, if u think something is wrong, 9 times out of 10, YOU are right. You are your child’s advocate.

  7. No family history in either side of the family. Stomach flu was going around his school like no tomorrow. Drew was slender and the same high energy level I had as a kid… The “regular” symptoms were not obvious and overlapped symptoms associated with stomach flu. Drew fell to the “flu” on a Friday and died less than a week later on 2/14/2012. So many “What If’s” still bombard my husband, daughter and me. We still grieve.

  8. At age 14 following the flu that just wouldn’t go away, three visits in one week to the pediatrician where they checked her for heart disease and leukemia but not diabetes my almost comatose sister was in the ER where a student nurse timidly told a staff doctor (who callously shot her down) that she thought she smelled ketones. Her blood sugar was over 1500 and she doesn’t remember the next 3 days in the hospital. My mom still lives with the guilt because her grandmother was a Type 1 and she thought she should have known what was wrong.

    Almost 20 years to the day my own son was in the ER following the flu and a sinus infection and I was kicking myself for not catching his diabetes sooner. Mind you his BG was only 198 but I had missed the weight loss, blown off the unusual naps and crabbiness, even excused the bed-wetting of a 6 year old who was potty trained before he was 2. It took finding him drinking water from the bathroom faucet in the middle of the night to finally put it all together. He NEVER drank water that wasn’t flavored.

    I’m a firm believer that every child, regardless of their age, should have their urine tested every time they are sick. People with compromised insulin production spill sugar when their bodies are under stress. It’s why pregnant woman have urine tests at every prenatal visit. I believe a lot of kids could be spared those “critically ill” diagnoses and a few lives might be saved in the process.

  9. My daughter Emily A. Swartz just died last week in Plymouth MA. It’s been like a bad never-ending nightmare. Emily seemed to have allergies. She had no fever all week. She was tired. She drank a lot but I didn’t think twice since she was taking cold/allergy medicine. I have many sinus infections and I have always been told that no fever means suck it up and wait. Some are bacterial, some are viral…and Emily was still laughing and asking to go out to eat. She even went fishing on the day we went to the ER. She never returned home. She was napping too much. She worried us. She threw up. We saw bumps in the back of her throat and so we rushed to the hospital. Her levels were in the low 300’s but high enough to have her sent up to Tufts Floating Hospital where we went on the rollercoaster ride from hell. We are looking into it. We ordered an autopsy. I am in the angry phase now. We witnessed severe trauma. We witnessed our baby first as a human pin cushion and then cut open like a fish after a man sat on her gurney on the way to the elevator pumping her heart for her. It was torture. My amazing 10 year old recovered from the operation and we were told wait. She can heal. She needs time. Her body needs rest. Then the transfusion, then the eckmo machine…the tubes, the bags, the figuring out of the amounts of this epinephrine and this much morphine, and the biocarbonate ….all these terms we never heard about…the doctors argued over what to do first. We can’t roll her to put a fresh gel pad under her. She never made it that far…her blood pressure dropped, she was at 34 degrees, her eyes dialated wide. They had been small before. That was the bad sign. Her brain was gone. I lost it. I have researched mothers who have lost their only. I bought a book. I look online. I know mothers say its not their fault. Emily may have aspirated in the hospital and developed pneumonia. She never recovered. The doctors didn’t know what happened. We have no diabetes in the family. I am so lost. I hope we eventually get answers. I am trying to be strong. She has had an overwhelming output of support. My daughter was amazing. A gifted child. A kind child. We have started a scholarship in her name. Any suggestions, Moira?

    1. I sent you an email. Let’s talk. I know people who can embrace and help you — who have been through what you have been through. HUGS.

  10. Hi!
    I am just wondering if there might be a problem with my son. I know the signs…as diabetes is HUGE in my family. I have thought for awhile now that he has hypoglycemia, but not diabetes, because when we check his blood sugars (his father is diabetic so we have the machine) they are always low or normal. I am concerned because they are low AFTER eating. He is very thin, but has always been. Should I be concerned?

    Thank you

    1. Hmmmm. Hypoglycemia is something to be treated as well. I suggest you call your pedi, discuss and ask for a referral to a pediatric endocrinologist. They can figure out if there is anything to be worried/concerned about. Let me know!!

  11. We just went through this June 22, last month. My 15 year old has been sick on and off. She was on anxiety medication and ADHD medication an thyroid medication. A year ago this past May, she was having extreme thirst and frequent urination and stomach discomfort. I took her to the Dr and they ran all kinds of test, including looking for diabetes. I am a Registered Nurse, and a Chemotherapy Nurse, and my husband is a Type 2 Diabetic. All the tests were normal. We attributed her symptoms to her ADHD medication(Adderal), since they are side effects of this medication. My family went out to eat at a Mexican Restaurant for a belated birthday dinner on Thursday night. Just before midnight she started vomiting. Throughout that night and the next day she threw up 4-5 more times but was able to keep some broth and sherbet and fluids down. About six o’clock that night she started throwing up every 20-30 minutes throughout the night. We thought she had food poisoning. She was able to keep some fluids down, and was mostly just throwing up bile. About 1045 Saturday morning, (June 21, 2014), she finally stopped vomiting and went to sleep. I checked on her frequently throughout the day, but she seemed yo be sleeping peacefully. At 1140 pm, I was going to go to bed, I checked on her one more time and she appeared ok. I was just struggling to go to bed. Her service dog started barking at me to take her out. So I took her out. When I brought her back in, since she always slept with my daughter, I picked her up and put her at my daughters feet. She immediately turned and jumped down. I knew something was wrong. I looked at my sweet girl and thought how frail she looked, and when I looked into her face I could tell she was gone. I attempted to rouse her, without success. She was not breathing. I started CPR but couldn’t remember what to do after the initial steps(which I was told was very common). I unlocked the door and called 911. They talked me through CPR until help arrived and she was transported to the hospital. She only had one shockable heart rhythm. They did everything they could for her, but she was gone. Her blood sugar was over 700 and her potassium was over 10. My sweet 15 year old baby girl was gone because of Undiagnosed Juvenile Diabetes. We are devastated. I feel like I failed her and my family both as a nurse and a wife and mother. My baby, youngest of four girls, should not be gone. It’s not right. (FYI, she also has struggled with hypoglycemia most of her life and had to eat every couple of hours).

  12. My son went to 7 year check up. Withing 2 weeks he was in the hospital diagnosed as type one diabetic. My daughter had issues. I took her to many doctors, asked my sons endo. All of them blew me off saying “dont worry about it” I finally caught my daughters blood sugar over 500 not reading on the meter. We tested on 3 meters just to make sure. We went to the hospital. By the time we saw our first doctor, way before any insulin or IV, my daughters blood sugar came down to 150. Her A1c level was over 6.5 so she was diagnosed and put on low dose lantus. She did not even need to correct with novalog with meals. 3 years later at age 15, she her overall insulin intake is that of a very small child. I wonder how many years this would have gone on if I had not tested her at the correct moment that day. My third child is going through all of teh same issues as my middle child. She is hysterical if she can not eat, she has uncontrollable fits and her mood swing are incredible. I have tested her shortly after eating ice cream. Her blood sugar was 42. Fast more then 14 hours as high as 102. Not alarming numbers but combined with the family history I think that there should be something someone could do for her. Her a1c is 6.2. If she is going very high then hitting those very low lows then her average is skewed. Again my endo blowing me off. Why is there not some early detection system? Why do we need to wait until our children have to go to the hospital before anything can be done? Why cant a1c levels be done at annual check ups? I know my son since birth had blood sugar issues when I look back. He would become lethargic valentines day when all the candy was passed out at school. We even though he was adhd because he was so hyper all the time but now realize he was just trying to burn off his blood sugar. My third child is suffering daily. It is very painful to watch. She does go to a endo now for thyroid issues but he still will not intervine about the blood sugar because the a1c level is only 6.2. So even if you know the symptoms and you take your child to the doctors, unless you are strictly at that critical point, you will receive no help. To me the critical point is way to late. How do we get these insurance companies to mandate a a1c level on every well check up for children? How do we get intervention and education to those who are not about 6.5 but at that teetering point. I have met others who’s children have died from undiagnosed type one diabetes. Educating the parents is great but getting the doctors to be more proactive, annual a1c level testing and early intervention prior to hospitalization is the key. To the original story posted, I went through same thing with my son. It was hot, he drank more so he peeed more. I am in medical field, I knew symptoms and I still put off. he just had his well check up 2 weeks before. The only reason I ended up taking him was because my son was a big kid, and in 2 weeks he went from husky to gaunt. So education great but even the educated need help from there doctors. If my sons a1c level had been done at his well check up 2 weeks earlier, he would have been diagnosed and could have avoided the week hospital stay.

  13. My I son had a sugar level of 1400 when he was diagnosed with Type 1 Diabetes at age 17. We are so lucky he is alive today. We have to do a better job educating parents, teachers, nurses and doctors of the signs of diabetes.

  14. I have just came across ur article. I am concerned that my 13 yr old daughter has some for of diabetes. It does run in my family not her fathers. Let me give u a run down of what has brought me here…she was 8 lbs 12 Oz at birth and is medium framed now @ 132, she began her menstrual cycle a yr and a half ago,no real problems other then some irregularity until she came to me 2 days after her cycle had stopped last week complaining with symptoms of a yeast infection & was diagnosed after a visit to her dr. I looked up causes of vaginal yeast infections in young girls and diabetes is #1, which got me worried and reading up on it. She has a few of the symptoms, does not have…blurred vision (although she came to me last month askin to get her eyes checked due to headaches when reading), weight loss, frequent urination or excessive thirst. Just about all the other symptoms however she has. I am a nervous wreck at this point with worry. Although we WILL be at her pedi’s office 1st thing in the morning, could you maybe give me your advice? My email address is ryloaust2014@gmail.com. ..any insight you could give would be greatly appreciated. ..thank you so much!!

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