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Tuesday, June 4, 2013

Dear Pediatricians. And Family Practice Doctors. And ER Doctors.

And every other kind of doctor, for that matter.

Dear Med Students.  And Nursing Students.

Dear Nurses. And EMTs. And Paramedics.


I'd like to introduce you to Addie.

I'm quite sure her bright smile and big blue eyes will reach inside soul and melt your candy heart...

Addison Parker

Addie was diagnosed with Type 1 Diabetes on August 12, 2011.

She was 4 years old.

She died on August 18, 2011.

Addie did not survive her diagnosis.

I wish I could say that Addie's story is rare, but it happens far more often than people might think. This study suggests that about 1/3 of people who died from complications of Diabetic Ketoacidocis (over a six year period in Maryland) had not previously been diagnosed with diabetes.

In the past few days, I learned of two more children lost....and countless others since my own daughter was diagnosed in 2005.

Why does this happen?

I don't know...but I do know that many of these families sought medical attention and were told their child had "a virus" or "the flu".  In other words, many of these deaths could have been prevented - if only someone had screened them in time.

A simple finger poke and/or urine dip upon presentation -- as in...right off the bat, stat, pronto. TYPE 1 DIABETES RULED OUT IMMEDIATELY -- that's all it would have taken.

Am I suggesting that people be screened whenever they seek help for any (or all) of the symptoms of Type 1 Diabetes, no matter how vague they may seem?
• Thirst (dehydration)• Frequent urination • Blurry vision• Stomach pain • Increased hunger • Nausea • Drowsiness, lethargy, exhaustion • Confusion • Sweating • Fruity, sweet, or wine-like odor on breath • Vomiting • Inability to concentrate • Weight loss 
Yes.  I am.

Does it sound absurd to screen every person who complains of vomiting or generally feeling more tired than usual?

I don't really care.

I feel it's absurd that people continue to DIE because they aren't being diagnosed with Type 1 Diabetes in time.

No matter who you are...LEARN THE SYMPTOMS, and insist on a screening if you notice them...PERIOD.

A couple months before my daughter was diagnosed, she was seen in an ER for vomiting. She had no fever, and her fasting venous glucose level was 128mg/dL. (Which is actually diagnostic according to the American Diabetes Association 2013 Standards of Care.) I mentioned to the ER doctor that her BG seemed a bit high to me, and was told it was a normal number that shouldn't concern me.

Three weeks before my daughter was diagnosed, I discussed her symptoms (frequent urination/excessive thirst) at her 2 year well visit. The doctor told me there didn't seem to be anything that warranted further investigation.

The day before her diagnosis, my husband described my daughter's symptoms and voiced concern with a second pediatrician in the practice. She told him we should watch her through the night, and have her seen the next day if she didn't improve.

On July 25, 2005 my daughter was flown to a PICU, semi-conscious in DKA, with cerebral edema.

We were merely a few hours away from the same devastating outcome, and there had been at least three opportunities to address the situation before things got as bad as they were.

Absurd indeed.

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  1. This is terrifying and I hope your crusade makes a difference for all of the Addie's of the world.

  2. This had me in tears... You could very easily have been telling the story of my own daughter's diagnosis in 2012, only 28 days after her second birthday. Verbatim. The symptoms, the physician responses, the results, and the outrage at how something could have been so easily caught, diagnosed and treated without taking our children all the way to death's door - and yet...

    Thank you. Thank you for this blog and thank you for giving voice to so many of us that are fighting this battle too.

  3. Wow, that's crazy to think that you voiced your concerns so many times, and no one did anything!
    In triage, they take your blood pressure, your pulse, your temperature, why not a BG check to?

  4. My Downs Syndrome son was diagnosed in Jan ...2012...he was vomiting for 2 days...everyone told me it was the FLU that was going around...he was tired ...not eating..thirsty..ect..ect..all the symptoms of a diabetic..but I had no clue this was the problem . On the third day...he seemed a little better , but listless...I decided to take him to the ER..instead of Quick Care....they checked him out...I stayed by his side...he was still sick to his stomach...a bit later the Dr came in the room and ask me if he were a diabetic..I said " NO "...then he left the room...came back and said.." his sugar is 535...which is very high...he was admitted ...for 4 get his sugar level normal with insulin. I stayed by his side through out the whole ordeal. I thank God now , after reading this..I took him in to be checked out...and so glad they knew to check his sugar. He is on 5 shots a day...I have learned to do this...and finger picks to check his sugar. He is so good about all of this...and I have learned a lot and know what ever it takes..I will do to keep my son as healthy as he can be. He is my blessing...and so is knowing about his diabetes...IN TIME ! THANK GOD I found out when I did. Judy...

  5. Absolutely absurd. Just a week and a half ago, I tested my 18-month-old's blood sugar because he had a fever, was vomiting, and had little appetite. Typical flu-like symptoms, but I've heard far too many "flu-like symptoms" that turned out to be much worse. When the vomiting kept coming, that was what convinced me to test him, as that could be a DKA sign.

    His blood sugar was 129... a bit higher than I would've ordinarily liked, but considering he was sick and had just drank some apple juice helps explain it (as did a lot of Twitter DOC reassurance).

    I felt silly testing him, I admit, for what was most likely a regular sickness, but it was just too easy to do it. And I could never live with myself if I, a T1D who advocates routine glucose checks in children, ended up like Addie's parents because I didn't heed my own advice.

    It's just so easy to do it...there's no reason not to.

  6. ARGHHH!!!

    I was seen by my GP the DAY I ended up in the ER. I was told to make an appointment with an endocrinologist to be put on insulin. I left the GP appointment with a POST-IT NOTE! The earliest appointment I could get was four days later. The first doctor I saw when I was admitted from the ER said I would never have made it to that appointment.

    How is this still happening?!

  7. Absurd, indeed. It's not like testing the urine or checking a blood sugar is complicated, expensive, painful or time-consuming. Just DO it. If they think that it's not Diabetes, just DO it and rule it out...or be surprised and save a child's life.

  8. I am right there with you Wendy. Such a similar story here, and TJ has type 1, you'd think with a parent with type 1 that the pedi would be more likely to put the pieces together. Instead we had to wait for me to figure it out, overdose him on sugar, do a BG check and take him into the ER. The ONE time I hated being right!

  9. I was misdiagnosed at 19 (so I was telling them all my symptoms myself) and ended up in the ER with diabetic Ketoacidocis. I also nearly died because of that misdiagnosis. This is such a preventable tragedy! Awareness is definitely needed.

  10. Thanks Wendy for being so forthright on this issue. Except for the age and the date (I was 28, in 1991), my story is nearly the same as your daughter's. Why IS this still happening?

  11. Thank you for this. I will be sharing your post on my blog. We were fortunate in that my daughter's pediatrician automatically checked for ketones and also did a finger stick the day I brought her in with symptoms. She still spent 4 days in the hospital, in part because we only caught her T1 symptoms because she got pneumonia at the same time and the extreme thirst and frequent urination and blurry vision just didn't fit in with the symptoms of pneumonia.

  12. After 2 Weeks of acting a bit off, I googled my daughters symptoms and fought the denial for about a soon as I told her pediatrician the symptoms he asked for urine. We were in his office all of 10 minutes that day before he sent us straight to the emergency room.
    In the 4 years since her diagnosis I have heard so many stories like this one. Horror stories.
    Its such an easy test...
    I thank God I recognized the symptoms and have a wonderfully attentive pediatrician.

  13. at the children's hospital where i live they do take you serious and check it out if you say your child has an increase thirst and urination. my daughter was admitted and they ran all the tests to see because they thought she might have diabetes. turned out she didnt but im glad they checked

  14. Reading this sent chills down my spine. This could have been any of us. This should be sent to everyone working in the dr's offiice. When I called to make an appointment for my daughter and told the receptionist her symptoms she said I wouldn't be able to get her in for over a week. I pleaded for something sooner but still had to wait two days. We should have been seen that day. It only took the Dr about three minutes to test her urine and blood glicose and tell us she was in DKA.

  15. That is the first thing our GP checked for when we took our 12 year old son there for just being tired. Our usually energetic son could barely do anything that was 3 years ago and all it took was a urine test needless to say we still have the same GP and it will be a shame when he retires but it would be great if there were more like him that are determined to find out the cause not treat the symptoms.

  16. My child was diagnosed @ 22 months with Type 1. I noticed an extreme change in behavior. I slept on the floor next to his crib for nights, changing diapers and giving him more juice because he was so thirsty. After a few nights, I took him in to his Pediatrician one day and I'll never forget the words ... Your son needs to go to Brenner Children's Hospital immediately. He has a blood sugar reading of 810. I am surprised he was not comatose at that time. We spent 5 days there learning how to give shots, monitor blood sugars and food intake. I went on to become the President of the Juvenile Diabetes Research Foundation here. It helped me cope and I learned a lot! To this day, I will say that his immune system contracted the disease because of a very terrible bronchitis episode prior to this event. There is no one in the family history with T1. I encourage all of you who are dealing with this disease to monitor it very closely. My son is 21 years old now and has been handling it himself for quite sometime. I put him him on the pump early. I have spoken at many events, including Washington, DC to appropriate money for the JDRF. They are a very lean, clean machine. Their dollars go to finding a cure for Type 1 diabetes. i will say this, my heart and soul goes out to Addie. I have been doing this for 2 decades and I do not understand how we lost her. Prayers up to the family!

  17. Thank you, thank you, thank you for posting. Maybe you could contact the dr. in the CBS58 story, because she might listen to a nurse. A parent who contacted her to suggest that screening for T1 is both vital and affordable (not an "expensive" test, as the dr suggested) heard back from the dr that the esteemed dr knew about T1, and the parent (of a child with T1) didn't.
    Our story was identical to yours, except our son was a little younger - I think many medical professionals just don't understand how quickly DKA can turn life-threatening. So glad that you're broadcasting this information - hope it helps raise awareness!

  18. When I started reading this I did not expect it to say that she died. :( When you said she died my heart skipped a beat. Poor poor little girl. Looking at her smiling makes me really sad. Things really need to change; everyone needs to be made more aware of the symptoms of Type One Diabetes otherwise more and more cases like this little angel's will happen. T1 diabetes is fatal if not treated but it's sick how it can be controlled if diagnosed- no one should have to die from it in this day and age- when there are so many "medical professionals" out there who should know what to do and who should be advising people on symptoms etc. Makes me really grateful for charities like Diabetes UK here in the UK who campaign for better care for diabetics, to raise awareness and to fund research. R.I.P Addie and every other person who has needlessly lost their life to this diabetes<3

  19. This story made my mouth drop open. When my daughter was 11 yrs old, she had flu-like symptoms. It was October, so the dr said it was just the flu. She continued with the nausea and then began throwing up. When we took her to the ER, she was hyperventilating. The ER dr diagnosed her in 5 minutes. He said he smelled the fruity scent on her breath, plus I remembered to tell him that she had been thirsty a lot. They had to put an IV in her arm and her foot because she was so dehydrated. She had complained to me for over a month that she was always hungry and always tired, but I didn't know anything about Diabetes. She hyperventilated for 8 hrs in the ICU, but finally stabilized. This Saturday she will be 37 yrs old and has a 14 yr old daughter a 10 yr old son.
    I was shocked to read how many times this has happened! This should be a standard test whenever someone comes in with any of the symptoms!

  20. I spent 6 months with vague Failure to thrive symptoms and doctors visits seemingly every week with my 3mo daughter. Diagnosed at 9 months. Dr want to know if an infant is drinking and weeing. Yes she was. Heaps but no one found that concerning. I was worried that she would die while we tried to find out what was wrong. I don't know if anyone has been as relieved to get a diabetes diagnosis as I was when I heard that was what was wrong with my baby. Diabetes can be treated, my imagination had come up a different outcome.


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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.