It Happened Again……..DAMN-IT……This MUST STOP….Do something!

Blue CandlesAgain.  It happened yet again.

I am beside myself with complete rage and I apologize if my title annoyed or offended you.  I AM JUST SO ANGRY.

Mom takes her child to the Doctor with flu-like symptoms. The doctor advises that the flu has been going around and her child must deal with it.  Five days of hell and it will subside, she is told.

By day three her child would become extremely lethargic.  The Docs office would be no help this time.  The child became unresponsive.  The mom calls 9-1-1.

Two days of intensive intervention and despite the heroic efforts, it it all to to no avail and the child dies.  DKA.  And why?

I am so furious that once again a simple test might, AND I SAY MIGHT, have had an extremely different end to this story.

Throughout the month of March, many organizations will making their annual drive to Capitol Hill.  I know it is to ask for funding, but is there anyone else out there that thinks these organizations may want to find one of these parents who lost their child and ask them to join in the efforts.  To tell their horrible and compelling story.

I get it.  Great photo ops and kids and people with diabetes talking to congressional leaders.  More money for funding.  More money for treatment.  Makes sense, but more needs to be added.

I beg these organizations who are experts on approaching Capitol Hill and our elected leaders in Washington to also remember that there are children and people with diabetes who cannot speak for themselves.  Because when they were diagnosed, they were already dead.  SOMEONE NEEDS TO SPEAK FOR THEM.  If not a diabetes organization……….let me know who?

If you agree with this please pass it on, share,  comment, yell, scream, and kick your feet because if we can get one legislative on national health initiatives to hear us and help us to inform Doctors to run one simple blood test for diabetes than perhaps we will safe a life.  Pretty tangible result, don’t you think?

Anybody hear me out there enough to help do something?   Contact any organization you know going to Washington next month and show them this article………what do they think? A diabetes organization that will be on The Hill anyway; will they add to their agenda an idea that practitioners and pediatricians will add a simple glucose blood test to save one life so no one is ever again diagnosed at death?

Contact someone because if we don’t speak for those who cannot; someone else will be added to the list.

I am a diabetes dad

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51 thoughts on “It Happened Again……..DAMN-IT……This MUST STOP….Do something!

  1. This takes me back exactly 6 months ago. My son was diagnosed with a virus…rest, fluids, he will be better in a few days. Less than 48 hours he was in DKA and spent 3 days in ICU. Thankfully, he is doing well now, but with that simple test he would have received treatment 2 days earlier. One simple test. Yes, I will pass it on!

    • It took months Of Us pushing concerning my daughters weight loss, Fatigue, And strange symptoms and being fluffed off as 1 virus after another Before her obv. Symptoms slapped them in face. I Never know the symptoms of diabetes I only knew that something terrible was wrong. Months later they ran blood work after we demanded something be done..diabe
      y ran blood work.

  2. This was almost us 4 months ago. Our diagnosis from the pediatrician was an ear infection sent home with amoxicillin. Less than 24 hours later we were in ICU for 4 days watching my daughter fight for her life! Pissed off can not even explain the anger I have at that pediatrician. Thank God I found the St.John’s story online. That is what saved my daughter. After reading it we rushed her to the ER. I hate that this is such a familiar story for so many of us. I HATE it!

    • Amanda, I passed this comment on to Debrorah St. John to let her know that speaking out about her daughter saved your child. Bless you for posting.

    • Amanda, I am so glad that you found our story! The reason I’ve been so open about our tragedy is so that others might have a different outcome. Thank you for letting me know and please continue to share it!

      • Thank you Sarah for passing that along. Thank you Deborah for sharing your story. I owe you more than this little post could ever say. Thank you a million times over and may God Bless you and your family.

    • Thank you Sarah for passing that along. Thank you Deborah for sharing your story. I owe you more than this little post could ever say. Thank you a million times over and may God Bless you and your family.

  3. I am in total agreement on this.
    BUT I have to take a minute to give a shout out to the city of Pittsburgh EMS. I work in an office where we see clients. A few weeks back we had to call 911 when one of clients was having a seizure. EMS was quick to respond, though she had stopped seizing by the time they arrived. The very FIRST thing they did once they made sure she was stable was prick her finger & check her blood sugar. I was in awe, because I KNOW this is not the norm.

  4. How does this keep happening. I am with you! Totally furious about it. Do you know if there is a way to get numbers on how many children this has happened to ? Anything? If we have more information, we would have more ammunition to take to our legislature. So so sad.

  5. We were lucky – the doctor on call the Sunday evening we called in 8 years ago just happened to be a pediatric endocrinologist (not practicing in that specialty) – she suspected diabetes from the phone call, send us to the ER at Children’s Hospital Pittsburgh, called the ER to let them know we were on our way & instructed them to get a blood sugar on Meri as soon as we walked in the door. Literally, she was diagnosed within minutes of our arrival.
    Sadly our story is not the norm, kids are send home from a doctor’s office – misdiagnosed – it’s the flu, it’s a virus – wait it out. The child continues to get worse, the parents follow doctor’s orders & wait it out – sometimes until the child is critical & it is too late. A simple inexpensive finger prick CAN save lives.
    Yes, I want a cure – but more than that TODAY I want a protocol in place that doctors have access to blood glucose testing IN every office and when a child comes in with vague symptoms, weight loss, excessive thirst, urination – prick their DANG finger & get an answer. IS this diabetes????

  6. Heck, blood test? How about a simple urine test….even easier! Doing a routine urine test at doctors visits would be of minimal cost to the doctor and parent. It would be of little cost time-wise as well. You go, you dip, you get a result, and you possibly save a life!!!! That’s a no-brainier!! It would be sooooooooo easy to incorporate this into appointments whether for a sick or well visit. Why not?

    • My daughter had a urine test, I guess they didn’t look at the sugar in her urine they only seen that she had a UTI and gave us antibiotics and sent us back home and told us that was why she had a high blood sugar. Told us that we was being paranoid parents for thinking we could possibly have another child that was T1D.

  7. Blood test? How about a simple urine test….even easier! Doing a routine urine test at doctors visits would be of minimal cost to the doctor and parent. It would be of little cost time-wise as well. You go, you dip, you get a result, and you possibly save a life!!!! That’s a no-brainier!! It would be sooooooooo easy to incorporate this into appointments whether for a sick or well visit. Why not?

    • That’s right Jennifer I took my daughter to the dr & mentioned to the pediatrician that my three year old son wet the bed every night did he have aniny tips. He said he wanted to do a urine test & as simple as that he was diagnosed!

      • The only problem with urine tests is that you have to wait for the child to go! And if they’re very dehydrated, they may have stopped peeing. A finger prick is quicker and more accurate, and for some of these children, the minutes count. I’d rather see a thousand finger pricks to save even one child!

  8. Thanks for posting this Tom… This is an issue I’ve struggled with and I believe you are right, there are not enough speaking for those who have tragically passed on. There is very little public awareness about how deadly Type 1 can be, let alone how QUICKLY it can become deadly. It strikes me as something of a dichotomy. We see Type 1’s achieving the pinnacle of human achievement doing things like climbing Mt. Everest, running marathons and even becoming world-class triathletes.

    We normally don’t see people who are suffering from physical complications, depression, eating disorders and other emotional and mental illnesses. These people who are living and succeeding with the bad, with the dark underbelly of diabetes.

    I often have concerns that there is only a partial picture displayed in the media. Not to mention the stigma attached to people with diabetes and then the additional stigmas of having complications or mental illnesses on top of that.

    And while people do blog, make Facebook posts and tweet about these issues, it seems to be an in-one-ear-out-the-other situation for most people. And the circle of people who do discuss does not seem to grow very much.

    It’s disheartening at times, but if we don’t keep making loud noises about these issues then no one will ever hear about them not will they hear about the people and their loved ones who are affected by diabetes.

    Great post Tom, keep shouting!

    • It is why I suggested for those who are active with organizations heading to DC—offer up the suggestion that they meet with the Congressional and Senate Heath Committees—-bring someone who is will willing to share their story. I will get the person to share if someone in the know will get the organizations to include it on their agendas.

  9. I am supposed to go to Call to Congress this year. Not sure what to do.
    Even when my own daughter was dx, my Dr didn’t believe me when I said she had diabetes, He said she was too young. Seriously? I’m a T1, there are no age limits. When they tested her the meter read “HI”.

  10. My son was misdiagnosed when he was 3 years old. He is now 15. If we had not taken him to the ER at 3 a.m. he would probably not be with us any longer either. He saw the dr. that day. When we called him at 3 a.m. about his dehydration and hold his kidney area he wanted us to wait and said it may be his appendix. We did not listen and rushed him in to the ER. I can still remember his little face telling me “II’ll be ok mama”. I am crying reliving this experience. I have vocally told every dr. and nurse that I am contact with to check children’s sugar before leaving. How do we make it a “law” that any child that comes in with symptoms to check their sugar either urine check or finger stick? This needs to be “universal” knowledge to all doctors. I worry every day for my son and check him alot when he is sleeping. He has had two low blood sugar seizures and I will never forget it. One paramedic argued with me that a low blood sugar doesn’t cause a seizure. ? Another paramedic on a different call did not know what glucagon was when I told him I gave it to my son. He didn’t understand if he had a “low” why is reading in the high 200’s. ?? Education needs to happen now !! What can I do?

    • OMG!!!! My son did the EXACT thing when he was DX at age 3!! We were sitting in the triage in the hospital and, sensing how worried we were, came up to us, gave us a hug and said; “Don’t worry Mommy and Daddy, it’ll all be alright.” I’ll never forget that day even though it’s almost been eight years. The one thing I’ve learned is that the ignorance about type one transcends all genres, professions and sectors of the population yet the ones who are second only to doctors in their arrogance about their ignorance are educators. Being a military family, our son has been to several schools due to the moves and school year to school year, school to school, we end up fighting the uphill battle over and over again. This year, his 5th grade teacher accused Lane of using “task avoidance” by having to go to the nurse at specified times for testing or when he feels low. Of course we had him removed from her class and he’s doing much better in his new class however this is just indicative of the widespread problem. The battle continues…

  11. It’s been almost eight years since our son Lane was diagnosed and I can’t believe doctors CONTINUE to be so ignorant. We went through the same situation, Lane’s pediatrician said it was “just the flu” and wouldn’t even take the time to see him as she was so booked so she just prescribed antibiotics by phone. His symptoms progressed and I was sitting at work googling his symptoms and it was pretty obvious on every webpage I brought up; he was a type one Diabetic. JDRF had chronicled a story about an 18 months old girl who was misdiagnosed and ended up dying of DKA. Armed with this information, I sent the link to my wife and asked her to take our son to Urgent Care ASAP if she couldn’t get him into our peds. Once at urgent care, they poo pooed his symptoms once again, mirroring the pediatrician’s diagnosis of the flu. My wife then DEMANDED that they test for diabetes just to “rule it out” and once they reluctantly did, proving what we already had suspected, their attitude changed dramatically (never got an apology but…) and made the arrangements to get him to the hospital. The bottom line is, doctors who misdiagnose should be held criminally liable. It’s a simple, 10 cent test and should be the FIRST thing to be ruled out, not the last. With the prevalence of kids with Type One these days, I’m just floored that doctors continue to make this fatal mistake and it’s gotta change!!!

  12. Yeah, that’s hideous and unbearable. And a malpractice suit won’t bring the child back. Although malpractice suits might start making more pediatricians aware that “vague” symptoms are not to be ignored. The most tragic thing about this is that routine, in-office testing of children who seem to have the “flu” would not be all that costly, and it would take a LOT of negatives to pay for one malpractice suit. But then, the docs pass on the cost of malpractice insurance to their other patients anyway.

    What I’m rambling about above is there needs to be a LOT more education for both the public and the docs about how to spot the possible onset of T1, since it can be so rapidly fatal. Most people don’t even know what it is, let alone what to do about it. Docs, especially pediatricians and GPs are another story — they’re incompetent if they can’t spot T1 — all it takes is a couple of questions about the child’s behavior (peeing, eating, sleeping, wetting the bed), and a simple meter test, and very little time. And I guess incompetent docs SHOULD be sued — it goes on their record, and is a wake-up call.

  13. We weren’t in the pediaticians office for 5 minutes when we had our diagnosis. I am thankful for them everyday! It’s such a simple thing to do. Maybe med schools need to do a better job of educating those studying pediatrics or family medicine??

  14. At Connor’s Dx 9.5 yrs ago his Dr didn’t pick it up. I finally took him to the ER on my own because we weren’t getting any answers from the Dr. who was totally stumped….Credit to my Dr though he immediately went out and purchased a Meter for his office…Within 5 months he Dx another patient in his office we she had symptoms that just didn’t fit…..

  15. Unfortunately it will take lots of malpractice suits to get doctors to change. But it also might help for some really good PR campaigns from ADA, JDRF, etc. Focusing on the undiagnosed tragedies. :'(

  16. The same thing happened to me when I was 11. My parents were told that it was the flu and puberty. We were sent home. A few days later my father carried me into the nearest emergency room. I was in a coma. I woke up a few days later afraid and confused. My parents later told me that my Endocrinologist said I had been hours from death. This shouldn’t have to happen to anyone especially with all the advances that we now have. This really breaks my heart!

  17. I am the 3rd diabetic in my family there is 4 of us my baby brother was diagnosed of diabeties the day he was born and he is now 5

    I hage been in DKA 3-4 times in 1 year i thank you for sending his post as i was in a diabetic coma for 4 months i am so lucky to be a live i am now 18 and have been diabetic since i was 5

    Its my dad then my sister then me then my brother and skipt my other brother

  18. You know that expression, “There ought to be a law?” There ought to be a law that anytime someone goes to a medical professional with the symptoms that could be Type 1 Diabetes or ? that the blood test for type 1 be mandatory! I am going to contact my Congressman about it right now.

  19. It brings tears to my eyes, both in sadness and anger. My daughter, at the young age of 15 months began to get ill. She stopped eating, losing weight, and doctors sent us home with antibiotics. A week later we return, she still wasn’t better. Again, they sent us away with yet another prescription. Several days I plead to be seen again. I was a young mom and don’t know if they just didn’t think I knew what I was doing but I knew something wasn’t right! Almost sent home again when an angel of a nurse came after me and asked to check one more thing. She tested her and immediately my daughter was sent to the ER where she was admitted for over a week. One more day and she could’ve died. Fourteen years later, she is a healthy teen. I just would of hoped that by now things would’ve gotten better. Just over two years ago, my son was also dx with T1D and I felt lucky I was educated to catch it myself fairly early.
    With the number of new dxs on the rise in children, checking a simple BS has got to be part of a normal routine at any medical facility!!

  20. I believe that – in ANY doctor visit, there should be a blood glucose test done, or even a urine test as a previous commenter suggested. Make it standard protocol for doctors: after using the stethoscope and blood pressure cuff, use the glucose tester. It’s so fast and easy, how can you NOT?

    But is Congress the way to go? I’m not so sure that would be effective – it would be a bureaucratic and governmental mess that goes nowhere. Maybe approach the American Association of Pediatrics, which sets guidelines and procedures for pediatricians throughout the country. That group always takes the most extreme precautions (they’ll probably have my kids, currently 6 and 1, in car-seats until they’re old enough to drive at the rate they’ve been changing guidelines) . Surely they would be willing to amend standard protocols to include blood or urine glucose tests at the doctor’s office.

    You’re right, though. Something needs to change.

  21. Our story is similar to others. Our daughter was 2.5 years old and I had to convince the doctors office to see us, and then to test for type-1. We should start a campaign and call it “Test Every Time” or something. Send a message to all hospitals, doctors, EMTs, etc., that any time a person comes in with flu like symptoms, no matter their age, that they test that person for diabetes.

  22. Wow…..how scary……our pediatrician took Zachary’s urine as soon as we arrived. All I had to say was he was peeing every 5 minutes. They knew right away. I too thank God for ours and Children’s Hospital of Pittsburgh. Tom…..maybe we should start with senator eichelberger again.

  23. We were given bed wetting alarm information for my son, he was 11 and having accidents nightly. A week later we were sent to the ICU, my son had DKA. It’s scary that doctors are missing these signs and our kids are suffering!!

  24. This happened to us too.. luckily my son lived. I think we are going to sue because until we start suing these doctors that fail to recognize dka and kill or almost kill our kids it will not stop. After 2 phone calls to the ped. and two er visits they figured it out.. then 3 days in the picu and a horrible nightmare for my son. It could have been caught early we could have just been trained. WHY DON’T DRS KNOW WHat TYPE ONE IS???

  25. My son didn’t die thank God but we had a similar situation. My son was 4 years old, and little did we know but he had been showing signs for months but we didn’t know what it was. One day he just out of the blue walks up to me and says mom I feel …. and before he got it out he was vomiting in the floor. I thought oh its a stomach bug and I cleaned it up, 5 minutes maybe he again he was sick, still I was thinking flu. We went through that all night. The next morning I told my husband I was taking him to our family doctor and I did. The doctor said I think your right there is a lot of stomach problems going around, in 3 to 5 days he should be all better. So we went back home. Every time he would take even just a sip of water it come right back up. The next day which was the third day of this my husband said we are going to the ER something is not right. By this time my son was so weak that I had to hold him up over the toilet for him to even get sick. I carried him into the ER as soon as they seen him, they took him straight back, no waiting in the waiting room this time. It wasn’t even 30 minutes until the nurse was in our room hooking up a IV and the doctor came in and said that they was transporting my son to the Children’s Hospital about an hour away because he was in DKA, that he was Type 1 diabetic. We spent 4 days in the Intensive Care Unit. It was a very scary experience.

    Then when my daughter started showing signs we took her to the local ER and told them what she was doing, etc. they did a urine test and said she had an infection and gave us an antibiotic and sent us home telling us we was being paranoid parents. The antibiotics did make her feel better for a couple weeks (we didn’t know but she was in honeymoon phase). Then one night she wet the bed, my husband was like oh no not again. So we checked her blood sugar and she was over 600 so we took her straight to the Children’s hospital our self and they confirmed that yes she was type 1 also. I do not understand these doctors and why they don’t do more test and why they don’t trust parents that already have a diabetic child to know what they are talking about and that they know what the signs are.

    Sorry for the long post, but is my story.

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  27. And sadly, it’s not just children or folks with an unknown status… My father, who was diagnosed as diabetic back in the early 80’s after going into his first coma, was suffering all sorts of problems in the late 80’s after we moved. We repeatedly mentioned to the doctor he was seeing at the time that, yes, he was diabetic and maybe some of his problems might be related to that. Our concerns were brushed aside. We got lucky that for one of his appointments, the doctor he’d been assigned was out of town and he had to see someone else. First thing they did was order a series of blood tests, and yes, low and behold, everything was out of sorts. We were in a small town so there wasn’t a lot of nearby options for medial assistance and if his original doctor had continued to ignore the _known_ elephant in the room who knows if he would have survived much longer. I’ve learned to VERY insistent and pro-active when it comes to my medical care

  28. I agree, but I feel doctors need to be better educated as well. I mean like the young ER doctor that told us we was being paranoid that our daughter just had a UTI and that was what was giving her elevated blood sugars. I knew in my gut she was diabetic just like her brother but they wasn’t listening to me and so I thought well maybe they are right and took her home and gave her the antibiotics. She did seem to do better for a couple of weeks, but it wasn’t long until more signs was showing up. If they had just checked the sugar in her urine test when they did the UTI test then they would have seen all the sugar and she could have been dx a month before she was.

  29. Its not even necessarily a blood test, but a simple urine dipstick will do! That is how I was diagnosed 23 years ago. Its not as though getting a sample would be difficult as you’re making repeated trips to the washroom anyhow. “Here, pee on this” is all it takes.

    • “Hey, pee on this” might be hard for an infant or toddler who is not really in control of their urination. And if they’re dehydrated, it’s hard, too. A blood test is much more accurate, and there are machines that can test for ketones as well. In addition, some people do not spill sugar in their urine until they are quite high (I’m one of them), and the whole goal is to catch them BEFORE they’re in crisis! Which is why routine BG testing for everyone is not such a bad idea. I have a friend whose T1 was caught during a routine physical when he was 19 — how lucky he was not to have to get so sick or go into DKA. As a result, he’s now in his 60’s and has never had DKA, and has no complications. Would that it were so for everyone!

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  31. I am thankful each and every day that our pediatrician’s son is unfortunately also type 1. She was not the pediatrician who diagnosed my son, but I know that her experience has put the entire practice on high alert and they fully recognize the signs and symptoms. My son was diagnosed within 5 minutes of being in their office and our pediatrician has been an amazing support to us in the last 6 months. We are lucky but not everyone is and it is so hard to hear that some doctors still don’t see what is sitting right in front of them.

  32. I was diagnosed as an adult one year ago. I was lucky: I knew the symptoms of diabetes, for one thing, so I suspected diabetes myself when I made the appointment with the doctor to discuss my unexplained weight loss, uncontrollable thirst, frequent urination and nausea. I actually asked the doctor to do a quick finger stick just to see where my blood sugar was. I’m impressed with my primary care doctor, too, because she suggested running blood tests and figured out that I had type 1 diabetes even though I was over 20.

  33. My daughter was diagnosed at 5 yrs old, she will be 8 yrs old next month. She was thirsty, always wanting water, and wet the bed twice. I took her to the doctor, and told them I wanted her sugar checked for type 1, the doctor looked at me and said, “I’m thinking a UTI, don’t think you should be concerned with those symptoms, but I’ll check it to ease your mind.” Her sugar was 479, the doctor apologized and said it must be a mother’s intuition. I was aware of the symptoms, and all the doctors in the hospital all commented that all her labs were completely normal (except her glucose), and they said they never see any children present in this way. Made me wonder why then isn’t there more education and to make it part of the usual checkups to check glucose, it takes but a second.

  34. This takes me back to 3 1/2 mos ago . Just a simple test would make my sons near death experience would not be as worse when he finally got admitted . We were at the ER one Sunday and discharge us and misdiagnosed of flu. Really? My son was lethargic , no fever, weight loss of 7 lbs in 2 days, sunken eye, skin was so white and horribly dry and never mine in his records he has endocrine problem so if I was a doctor or physician assistant I would be more extra careful with this 11 yr. old child of mine which means more testing but instead nothing not a bit thing they’ve done that night but made it worse gave my son 2 servings of orange juice and advice him to drink more Gatorade when we get home.
    So following day in the afternoon I notice there’s more to theses , this is not just a flu so he was admitted to ER and stayed at the ICU for 4 nights. BG of 1800 and ph of 7. My son saw his angel name Jacob so this is near death we at blessed at the stage he was diagnosed he made it to live again.

  35. In March 2009, my 2 1/2 year old daughter had been “sick”. Soaking through pull-ups, rubbing her eyes, saying her stomach hurt, hungry, thirsty, tired. I finally took her to the pediatrician, and Type 1 Diabetes wasn’t mentioned even one single time. And this is in Houston, where my pediatrician was on staff at the prestigious Texas Children’s Hospital in the Medical Center. She was also a family friend. But yet, diabetes never entered her mind. A few more days go by and I’m sitting at my computer at 1:00 am in the morning, googling my daughters symptoms, with an intense feeling of unrest. I keep hearing in my mind “she has diabetes….this is diabetes….google the symptoms for diabetes”…….just a constant nagging thought. So I googled it. I sat there and read for about 15 min until one site gave this advice “If you think your child may have Type 1 Diabetes, get them checked now”. I got up, rushed out the door, and sped down to my local 24-hour Walgreens pharmacy. I bought a blood sugar meter that came with strips. I zipped back home. I am not kidding when I say that I never encountered one red light – not even one. I went straight to my daughters crib and pricked her finger. The only way I knew how to do this was I’d seen it on TV commercials (Patti Labelle, One touch, etc…..). When I pricked her finger she woke up and cried. The reading was 360. I woke up my husband, told him what had transpired, and said that I was taking her to the ER. He was dumbfounded and in a sleep induced stupor. We spent several days at Texas Children’s Hospital. They said she was DKA on arrival. I right all of this not to make those who lost their children feel bad, but to say to those who are worried their child might have diabetes……..get your purse, your wallet, your keys – right now……RIGHT NOW……and go. Just go. You don’t need a doctor to confirm this for you. Go get a meter and check. If it comes back normal, check again in a little while. Keep checking till you you can safely rule it out. If you wait to see a doctor, they will make an appt with you that may be a week later. You do not have that kind of time. Beyond that, I get SO MAD when friends I’m at a playdate with friends and one of the moms says “Oh my gosh…..you know, I think my son may have diabetes too!”. So I say, “well, I can change out the lancet on this finger pricker and check your son…..right here, right now”. And they say “Oh no, I will just call the doctor”. Then I say to them “Ok, it’s your choice, but you need to know…..if your son really has diabetes, then he might die while you’re waiting to get the appt, and waiting for your pediatrician to GET A CLUE.” And that’s my story!

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