A Blue Flame that Should Never Be Lit……Your Input is Requested to Extinguish it.

Blue flame extinguishedI had just read about a 7-year-old child that was diagnosed with diabetes upon their death.  I was livid. 

This just seems so unacceptable to me.  My experiences from hearing prior stories go something like this:
flu-like symptoms take place, it gets worse, trip after trip happens to medical offices/hospitals, no one can figure exact cause, and by time anyone can figure everything out……the individual passes away.   Now I DO NOT know if that is what happened in this case but I am informed the diagnosis was at death.

Unacceptable.

I am so angry that I decided reading about it and not doing anything about it is just not in my DNA.  Just ‘Don’t do Nothing’ has been written or stated by me a million times.  I reached out to The American Academy of Pediatrics to discuss the matter.

I am in the process of figuring out what we all might do.  Poster campaign, public service campaign, and I am not sure what….but SOMETHING.

I’m not stating that someone or a group is doing anything wrong.  All I am saying is that we should do all WE can to make sure it doesn’t happen again.  There are many laws on the books named after people who, upon their death, the families felt a change needed to be made.

In our diabetes community, that law (or action needed) would have an entire list of names. 

You know it was really incidents on playing fields that made the defibulators placed everywhere.  It was death in kids that made a rallying point to become a reality to make defibulators placed everywhere.

I might be wrong, but if a blood test would have revealed something, it needs to be done.  I may be way out of my league, here but something needs to be done, what do you think?

I learned, AGAIN, yesterday that his community can make a difference.  Not merely hundreds, thousands of people, responded trying to help yesterday in an incident now resolved.  When we as a community set our minds to do something we can change the tide.

Once I figure out a course of action, I will let you know.

Are you in?  Do you think that we as a community SHOULD try to do something?  Reply to this blog as I want/need to hear if I am just angry or DO YOU think something can/should be done?  What are your thoughts?

I am a diabetesdad.

NOTE: Hit ‘Like’ on my Diabetes Dad FB page to stay informed

46 thoughts on “A Blue Flame that Should Never Be Lit……Your Input is Requested to Extinguish it.

  1. We were sent to the ER after a pediatrician said my son had a bug and needed an IV. He was diagnosed in the ER because a doctor there had a hunch about his labored breathing. I later talked to the pediatrician to tell him about his diagnosis and he claimed he knew it was diabetes but didn’t want to scare us! I think he was CYA, and I did write a nice review about him on multiple websites. A baby coffin would be more scary than a diagnosis.
    So yes, we need pamphlets to know the signs and symptoms, pediatricians need to be further educated about this. There is no reason anyone should die at diagnosis. If we had papers about this I would gladly drive around to every medical office in this valley to distribute them.

    • Connor primary missed his Dx and by the time we finally got to the ER he was in very bad shape. That doctor on his own purchased a blood glucose meter. 4 months later another patient was having on going issues he couldn’t figure out. He did a finger stick in his office and he was able to see her BS was out of normal range and acting according by sending her directly to ER.

      I think really a simple BS reading in a primary office would catch many of these issues.

        • An article in Pediatrics would be a good (and cost effective) start. Many pediatricians read it, and would take it seriously. Parents of T1s can also help to educate their own pediatricians, particularly if they missed the diagnosis to begin with. The rate of T1 is on the rise, so chances are ALL docs are going to see T1 more and more. Count me in when you figure out what you want to do!

    • I am so glad to hear this and am very interesting in being a part of raising awareness for this serious issue. This is happening all over the world so it is not just a rare occasion. I live in Australia and I read about a month and a a half ago about a 8 year old that was taken to the doctors several times and sent home being told it is just a gastro bug. She died! I can’t begin to tell you how angry and sad this makes me. I cannot believe that in 2012, now 2013 that people, children are dieing because they didn’t get a simple blood glucose test. The little girl would be alive now if that doctor gave her that test. A blood glucose test is a standard test and every doctors surgery has one so why are they not using them? It is unacceptable! It makes me so sad that precious children aren’t even getting a chance because of this. I was misdiagnosed, ended up in DKA and almost on a coma but I was lucky so many aren’t and are losing their life. I’m in! We need a plan.

  2. For starters I think we should all start at the local level with our own children’s pediatricians or family doctors.

    We need to teach them the warning signs, we need to have a sit down with them and say listen and act!! Have a blood sugar meter in your office, maybe we can provide them with a few somehow, and say if you see ANY of these signs PLEASE CHECK DON’T GUESS!! A simple 10 second glucose check could save a child’s life!! A HUMAN LIFE!!

    When my daughter was diagnosed she went undiagnosed for over 2 weeks because when I took her in I was told that she had the flu (horrible diaper rash, lethargic, drinking excessively, puking randomly, wight loss, yes the whole 9) and we were told she had the flu and given a diaper rash cream (she was 2.5). All it would have taken was a simple 10 sec blood sugar check to save her the agony and DKA that she endured because of them not understanding the signs of T1D!!

    I say everyone who is ready to make a change call your pediatrician and set up an appointment and MAKE THEM LISTEN!! MAKE THEM UNDERSTAND! Offer them advice and offer to help them should they need it with more education.

    WE CAN MAKE A CHANGE!!

    Start local and work our way up!

    • This very true! My son’s doctors ONLY tested him after I informed them that my mother was dx’d at 13 (53 years prior) and I lived with her all my life…I KNOW THE SYMPTOMS; PLEASE TEST HIS SUGARS! He was 2 1/2 at the time (now 9) When they came back in the room, they had already called the ambulance to take him to the ER. Luckily, I had suspected it because they were going to send him back home with me citing his symptoms; excessive urinating was due to it being hot so he “drank more”, the lethargy was due to heat exhaustion & his rash was “onset chicken pox! (he received the chicken pox vaccine 2 weeks prior).

  3. It is unacceptable. I just don’t understand how so many cases can be missed by professionals. It’s very simple what needs to be done in these cases, a simple blood sugar or even a urine glucose/ketone screening; the latter of which can be done in any medical office setting (even if they don’t do their own blood draws, they do their own simple urine screenings). AAP needs to include it in their routine standards of care when children present lethargic, and with other classic symptoms of T1D onset. Perhaps parents can be better educated via PSA’s in print/on-line/TV from various Diabetes organizations on signs and symptoms, and what to ask/demand of their PCP’s and/or ER staff for testing.

  4. I’m in. My daughter had her yearly physical 2 months before she was diagnosed. She didn’t even get a finger prick to test her blood. She had signs of her diabetes then and no one caught it. She ended up in severe DKA and was hospitalized for a week. She survived but obviously others have not. They should be screening kids every year an ALWAYS check ketones in kids when they are so sick. It’s all $$$ related. BUT WE CAN DO SOMETHING! Sadly, one of my nieces is a reason for those defibrillators on fields today-my family made a difference then – we can make a difference with this!!!!!

  5. I’m in. My son was misdiagnosed, I was lectured on high metabolism following an illness, almost 2 weeks later after researching his inability to put on weight called Dr and asked for test for diabetes since I surmised he had that or cancer.

    Was told they were busy that day and to come in the next morning. After they heard me crying, and I didn’t used to be a cryer at all, transferred me to nurse where I got ANOTHER lecture on how to feed my youngest of three who had just turned 11.

    Fast forward next morning, 10 minute lecture on metabolism, I asked if they could just give him the test (didnt even know what.it entailed) and we were then rushed to ER. Severe DKA, ER docs couldn’t believe he wasn’t in coma and that I hadn’t heard him panting, PICU and guarded condition. Most traumatic time of our lives and he was so dehydrated they couldn’t get proper line access. This, right outside our Nations Capitol.

    These are simple and basic symptoms every doctor and ER should know. )we had a prior ER visit during initial sickness due to crazy mouth abscess that appeared and no urine or blood was tested. This could have caught things early.

  6. Our daughters dr diagnosed her over the phone and with the second we just knew. I see your point! I wonder how many parents think their child can’t have diabtetes because they are not fat, or the get enough Vitamin D there’s no way. Maybe this is a good time to have a skype or google hangout symposium to discuss some ideas. I find it absurd that a Dr can’t figure out a child has type 1 diabetes. Maybe this is a good thing for all the diabetes organization to work on together. Stop the deaths now!!!!!!!!!!!!!!

  7. My heart is broken. How can this happen? You are right and I am with you 100%. I keep hearing so many stories about how children are misdiagnosed for weeks or months. My grandson had the same story.. flu, earaches, antibitiocs, and ended up in the ICU for weeks. That was six years ago. There is no excuse for a child to die due to be undiagnosed for type1. Can you please let me know where this happened? Was it in Reno, NV

      • I am a grandma, whose grandson was very lucky to be diagnosed very quickly because of my daughters awareness of type 1 and by his wonderful pediatrician taking a blood test immediately. I am always surprised at the lack of symptoms of type 1 being printed somewhere in the hospitals ER, in pediatricians offices, or anywhere symptoms of other diseases are listed, and where parents can become aware of the type 1 symptoms. What really scares me is the pediatrician that does not immediately test for diabetes when a child is brought in with symptoms. A child dying without ever being diagnosed is unacceptable. I want to help!

  8. Im all in to help anyway I can. Something definitely can/needs to be done! Thankfully my daughters pediatrician knew the symptoms and tested her right off the bat. I was the one that was clueless 🙁

  9. Symptoms: tired, ‘worn out’, ‘a bathroom behavior problem’ (excessive urination), ‘always thirsty’, losing weight or the parent saying “she eats all the time and never seems to gain weight”…things in quotes or half quotes are phrases I’ve heard throughout my life or in clinical medicine…also, patients who are vomiting…or complain of feeling flu-ish…hope this helps to clarify…

  10. I’m in! I don’t ever want to light the blue candle again. That is why I post the symptoms for all my FB friends every time I light the blue candle. I start with the people I know – but I would love to go bigger. We need to go bigger. What can we do?

  11. I have too many friends who have lost their child at onset. Too many friends who had to advocate for their own children. Jesse diagnosed TWO of his own friends before a doctor did. When he was diagnosed i knew all the signs. All of my aunts and uncles had type 1. I went into denial. Parents do not want to think the worst. It is the doctor’s job to think the worst. Education starts with the doctors. Period. The test should be mandatory. The test is cheaper than any other outcome.

    • Thaks Michelle—you are absolutely correct and I have an idea that might work in a specific area….actually it was in response to someone on thie blog post. We can test it in an area and roll it out if it works—keep posted. As always—thanks for chimimg in.

  12. I knew the symptoms so we were lucky. If obstetricians inform moms and dads to be, pediatricians inform parents, schools include it in health class, and all funded infant and child programs actively educate parents that is a start. I am in the process of pushing kids walks in my county to help educate kids. If there are pamphlets and posters, I’ll spread them around. How about an official recommendation by the AMA that at EVERY visit where symptoms are present, a test be done.?

  13. My daughter had no symptoms (her dad is T1 and we were watching) but still had her diabetes caught on a routine physical. A simple finger stick was all it took. We avoided DKA, had minimal hospital stay for teaching. This is how it should be for everyone! Until we have a cure, being proactive about diagnosis is the only acceptable option!!

  14. My son was dx at age 6 at an Urgent Care Center. Doctor knew right off it was T1D and got us an appointment right away with a pediatric endo. A smart Doctor at the Urgent Care helped my son avoid a scary hospital stay, or worse, because he knew the symtoms of diabetes, My son was one of the lucky ones.
    Off to school, and I guess luck ran out. Many issues with following his medical plan and a total lack of understanding of what a T1D needs to be successful in school.He was given insulin, but then not allowed to eat the food the insulin was given to cover. Much confusion about the difference between type 1 and type 2.
    As a family, after dx, we focused our efforts on raising $$ for a cure–but after all the problems with school-we realized we need awareness and understanding of diabetes as much as we need a cure. We took action. We asked the Mayor to commemorate Diabetes Awareness month, we asked for the Village Pond to have blue lights in Novemeber, and started a Facebook page to give information about diabetes. My son wrote to local newspapers, went on local TV to talk about his T1D, and rallied for businesses in our town to join in the fight against diabetes. My now 9 year old son, who has T1D, his 12 year old sister, my husband and myself participate in health fairs, community events, and the like with the message ‘What’s Your Type?’ We share information about all types of diabetes, warning signs of diabetes, and advocate for certified diabetes education in our schools.
    Our family is with you Diabetes Dad! We believe that if all of us in the DOC begin to advocate and educate in our communities we CAN make a difference!

  15. I think that it should be standard to do a finger prick and testing of glucose at every visit to the dr’s office when it comes to kids. There are too many kids being diagnosed NOT to do it.

  16. I think that more education should be provided (no such thing as too much education in my mind) to peds doctors, general physicians, school nurses and any other medical staff that interact with children on a daily basis. A simple informational letter (like the one created by Mary Kathryn St. John Type 1 Diabetes Awareness Initiative) is very powerful, easy to read, and can be sent to doctors and placed in medical offices for parents to read. As a parent with a child diagnosed almost 2 years ago, I was somewhat aware of the symptoms of diabetes and noticed them in my child. I was somewhat in denial and put off a doctor visit for a few days. Once I realized that something was really wrong, I made a doctor appointment requesting that a urine and blood sample be taken. However, I never knew that delaying the diagnosis of type 1 diabetes or not treating it right away with insulin could be deadly!

  17. Thank You Tom, I am not much of a writer but here we go!, We have been pushing for mandatory awareness for the Sudden Onset, DKA for sometime now and we will continue to do so. We are trying to get all of the major folks involved with “DIABETES” this includes organizations such as Govt. Congress, JDRF, ADA, CDC, FDA, NIH, etc… parents, advocates, schools – so much needs to be done. We have a domain that we are launching March 25, 2013 = My sons birthday. The campaign is “CHECK DON’T GUESS” It will be run by myself, moms and dads of a loss and anyone else who is interested in supporting the cause and we want to bring everyone together to support them too. It is un-acceptable to be diagnosed with T1D at DEATH or TOO LATE , either because of not checking, (not knowing), or being mis diagnosed, un educated, ignorance or just plain UN-AWARENESS. The missing of the signs and symptoms for Sudden Onset, DKA.

    We have been trying to get everyone involved to work together for awareness for some time now, to let the world know the seriousness of this disease, not just myself but parents from the loss of their child to warn parents, teachers, doctors, ER, advocates, the Un- Edcuated, The big organizations such as ADA, JDRF, CDC, FDA, NIH, etc… we are all looking for help to stand and work together to to spread awareness and UNITE and push World Wide “CHECK DON’T GUESS” Why does it take for a Death or a bunch of pissed off, upset folks or the parent who lost a child to realize enough is enough to start doing the right things and to do something about it, we are all trying, it needs to be done proper “Diabetes the Parents International” have been trying, the parents of a loss have been trying, We all have been trying. It is like pulling teeth out of a new born and all organization think about is funds for cure, diets and excersize rather than more awareness first. There is NOT ENOUGH air time for T1D or for the Sudden Onset, DKA.

    Diabetes the Parents Side International is here for AWARENESS, for a cure someday and to hopefully find the causes to stop this horrific disease, but most of all to UNITE, to Educate, to Support and be Supported and Spread more Awareness for the Sudden Onset, DKA “The Onset that happens before being Diagnosed as type 1 diabetes” If one survives it, they are insulin dependent for life = . It is still better than DEATH.

    Today T1D, it is on the rise and seen in many, many children ages 5 years and younger, non genetic, no family history, environment triggered – many have died even teens because of it. WE NEED TO DO SOMETHING NOW!.

    Thank you for writing this article Tom and for taking the time and concern into the matter, It is much needed to be discussed world wide everywhere. I almost lost my child at 3.5 years old, many of us have almost been there and many, many have lost their child for no reasons or unacceptable reasons – no history non genetic and un aware. – David my son, he was in a coma at 3.5 years old (we had no awareness) = folks need to be aware of the signs and symptoms (mandatory awareness) for everyone, it should be part of everyday life or any way we can get it to work – all organization front page (AWARENESS for ONSET) and we need mandatory “CHECK DON’T GUESS”

    Please join us in the launch of our domain and event that will never end till they get it right for World Wide mandatroy awareness and “CHECK DON’T GUESS” to mandatory make changes where needed everywhere, World Wide.

    This continues to happen everywhere and everyday 24//7 and it needs to STOP.
    Diabetes does not sleep neither do we!

    Please contact us so that we may all work together properly, we need much support from everyone, folks need to understand the seriousness and do something now “THIS IS NOT A GAME” – You do not have to have family history for this to happen to you or your child or a family memember or friend. This Onset happens Sudden, it should be caught and stopped before it is too late for anyone.

    Thank you!
    Diabetes the Parents Side International, Michael Zorich

    Our Event! https://www.facebook.com/groups/259395740774523/permalink/457831580930937/#!/events/370377356385735/

  18. Yes, something needs to be done!
    But please don’t forget the adults who were not diagnosed appropriately, and when finaly diagnosed, were told they were T2s as adults don’t get T1.
    I am one of those people and have much damage that makes my life difficult because no one thought to run a BG test no matter how many times I came in saying I felt something was horribly wrong.
    By the time I was diagnosed I was in very dangerous condition.

  19. My son was diagnosed by the wonderful doctors at the hospital. His pediatrician (we had never officially met him-this was our first visit because we had just moved…My son had a clean bill of health from our other ped where we lived pervious) took one look at him, felt his belly-my son was so thirsty, he had drank 2 apple juices, and about 5 or 6 cups of water- the dr told me he had cancer and I needed to get him to the hospital asap, or he would die. My world stopped, I asked for a second opinion, I wanted more tests…It couldn’t be the end of my 4 year olds life, and the dr told me this in front of my 3 year old and 1 year old boys. So another man came in and felt his belly, he told me it could be a lot of different things and I should take him to the hospital because that would be the best place for him. They could run every test asap, and be able to tell me for sure what was wrong with him. So I did, I took him to the cancer dr they refered me to. We were admitted to the ER, and they started running blood work, and xrays, ultrasounds and who knows what else. We made it as far as the blood work, and xrays. Then the dr came in with a big smile on his face and said we found it. He told me he had to tell me in person, cause it isn’t often in his feild he gets to do that. He said it was diabetes-I felt like screaming and running around the halls for joy. They started an IV, and with in 45 minutes my baby sat up and told me he didn’t want to lay down anymore. His color came back, he opened his eyes a short while later and was wanting to watch TV and he was back. I couldn’t believe it. From not keeping anything down, and breathing really labored, and not wanting to do anything-I had to bring him in the ER using a stroller cause he couldn’t walk. The next day we both walked out of the hospital. We have only been back in the hospital 1 time-that was with the flu. He is now almost 9 years old and his sugars we still struggle with, but he is here with me.

  20. There is something that needs to be done and it may take all of us dealing with Type 1 parents to push it over the edge.I asked my daughter Ped to do a check in August at her 7 year check up. He thought I was over reacting to her behavior, no energy, throwing up in the middle of the night,occasional bed wetting,weight gain( yes she was not the norm she gained weight and a lot.) she was getting ill all the time,UTIs,ear infections,strep throat ect. Finally after 2 weeks of her being sick constant I took her back to her pediatrician and said “I am not leaving here until you tell me what is wrong with her.” 15 mins and a urine sample later we knew what it was and I was not over reacting!! Her ped said he would never second guess my mothers intuition again. I think they should make a yearly test mandatory and not just a finger poke a fasting glucose check should be done.

  21. I want to help. we were fortunate enough that the ER doctor who diagnosed my daughter at age 10 recognized it was not the flu, though by them her BG was 915.
    is there a way we can get public service announcement on the TV? or radio? or some kind of legislation where the doctors do have to regularly test when children come in for their appointments? hat at family reunions my daughter used to test everybody!

  22. My son had went in for a wrestling physical and that is when they caught on because I mentioned that his breath smelled odd, like nail polish remover..that day after they tested him, he was rushed to the ER. He had other symptoms yet because of very little awareness, we assumed it was just the virus that was going around, he also had puked the night before. Maybe someone can go around to the schools and be a public speaker and invite parents to come to and then send information home with the children? Could we post flyers on the pediatrician’s /hospital’s bulletin boards with bold letters that read :ARE YOU HERE BECAUSE YOUR CHILD HAS FLU LIKE SYMPTOMS? IT CAN BE TYPE 1 DIABETES.GET THE FACTS. Yahoo news is viral, maybe we can write Yahoo news, they put up simple stuff like pets being cute…I think maybe they should post a clip about Type 1 symptom awareness? Post flyers on bulletin boards everywhere that there are children present, day cares, Maybe if the media received an abundance of letters to the regard, or write blogs in local newpapers? Hope this all helps, I will do my part to help. My son loves to write music, perhaps we will write a song about it and post it on you tube and share with a lot of people.

  23. My then 13 yr old daughter had her sports physical in our home town. They did neither a blood or urine test. A few days later, she flew to Denver to visit her sister. While there, she became ill. They called us 2 nights in a row and my husband finally told her sister to take her to the ER either that night or the next morning. They decided to wait till morning. Her sister woke up at 5am and found her unconscious on the floor of the bathroom. They called an ambulance and she was taken to the closest hospital where she was diagnosed with type 1 diabetes. She was then transferred to another hospital that had an endo on staff. The endo told my older daughter that Reann would have most likely died if she (the older one) had woken up at her usual time of 8:00am.

  24. I completely agree with your statement that this child’s death is completely unacceptable. I have heard many stories of children also misdiagnosed before being admitted to the ICU to bring them back from death. To have a cure will always be my ultimate goal. However this is out of my hands and I wish the Doctors and Scientists all the best as we move forward towards a cure. We as parents however do have an important role to play in creating awareness. This movement you are purposing is an essential step towards this. It is extremely difficult to educate the public when our health professionals are unable to consider a small test to confirm or rule out a serious disease. I support your motion and will endevour to help in any way that I can. Good Luck

  25. Like Shannon, I was also clueless – completely! The nurse on the phone was reassuring that it was probably just a bug, but thank heavens!! she said, since he hasn’t been himself lately, maybe he should come in. He was just about to turn 11. The nurses looked very puzzled when we got there, because he did not have a fever, but appeared to have the flu or something and had gotten rapidly worse just on the drive over there. Our pediatrician came into the room and knew right away what it was (smelled the acetone breath – we all had colds at home and could not smell it.) and told me my son needed to go to the ER right away and called the ambulance. Later he told me he used to treat the diabetes patients in his ped practice so was fortunately very familiar with it. My son was in severe DKA and over 700 blood sugar. I will never forget that day! Shock, denial, yet also so, so thankful that we at least have insulin.

    I think the symptoms should be repeated in health news stories just like heart attack and stroke symptoms, cancer, etc. are now, and in books like What To Expect the First Year and such. Thanks so much for your heart for helping T1D families! No one ever thinks it’s going to happen to them…until it does.

  26. Thankfully my daughter was diagnosed at her yearly well child checkup . Our drs. Office always does a urine and bg test . When he told me she had type 1 diabetes I didn’t believe him , unfortunately all I knew about diabetes was type 2 and I believed he mis diagnosed her . She had a lingering cold that just wouldn’t go away . I had excuses for every symptom she had , bed wetting , emotional etc . To many near death stories out there . It does make me wonder if many SIDS cases are actually diabetes related . As we all know , diabetes doesn’t care how old you are , it lives in all ages and all races 🙁 great article diabetes dad ( I shared it on fb ) .

  27. 29 years into t1 and i am still amazed at how many “medical professionals” know absolutely nothing about t1. I understand it is a little ridiculous to expect everyone to know everything, but I think they could put a little more effort into it. It’s pretty stupid to not include a routine blood sugar test at every yearly physical for every single human these days. T1 really is not that complicated to break down and understand the basics. It is up to us to educate the people we interact with daily to help them know right from wrong.

  28. A fingerstick test on an ordinary BG meter is SO cheap and easy, it should be standard equipment in all pediatricians’ offices. And they shouldn’t be allowed to be licensed as pediatricians without knowing how to use it. SO darn easy — anyone who has diabetes or has a family member with diabetes could test someone and send them to the ER if they were suspicious of diabetes. So why are children who ARE seeing doctors dying of it?????

  29. It is as simple as a Glucometer being used in a Doctor’s office. Every Doctors office should have one and it should be used liberally!!! It is an inexpensive test and can be done right away. I thank GOD our pediatrician checked my daughter’s sugar that day. At 15 months of age she couldn’t tell us what she was feeling. Her sugars were at 600. Our doctor sent us directly to the local children’s hospital. All doctors need Glucometers and strips. They also need to use these tools if even one sign of diabetes is present. My daughter’s extreme thirst is what clued my doctor in. I will do what I can to help accomplish this goal.

    • Yes Gina—that is an idea that I am looking at to try in a designated area of the country. If we start in one area nd prove its impact; the rest of teh country can follow. Stay posted.

  30. I’m in! Our son was diagnosed 2 weeks past his 1st birthday. On the privious Wed. he was happy & enjoying pizza. Thurs. he would not eat anything, only wanted to drink. Friday was his 12 month well baby check. He was a foster child at the time & we had to take him to a Dr that takes MediCal (California’s version of Medicaid). He had never seen the Dr he was scheduled with before. The Dr asked how he was doing & I told him I didn’t think he was feeling well because all he would do was eat. He asked me how many bottles he was drinking. I told him 6-8 (I didn’t want him dehydrated after all). No OTHER fact finding. Dr said he looked good and told me not to give him so many bottles. As my mind was reeling from the comment he walked out & sent the nurse in to give injections. It wasn’t until I left I realized he thought I was drowning out his hunger with fluids.

    It was a long weekend as I WORRIED profoundly for my sweet boys welfare. He was getting less and less energetic and happy. More and more lethargic and sad.

    I spoke with several medical professionals I know telling them I was worried. They all said the same thing. Don’t worry he is not running a fever, no cough, no rash, no vomiting, …. etc. they told me there was nothing the ER would be able to do. Plus I did just see a pediatrician who dismissed my concerns.

    Sunday afternoon I was on WebMd & KNEW it was diabetes. DKA kept popping up in the reading but I DIDN’T even read abt it. I wanted to know abt diabetes and skipped over it. I was so worried abt my baby I was anxious to know abt the disease without realizing he was in DKA. I determined I was calling the pediatrician first thing in the morning & not leaving until they did a blood test.

    It was a LONG night holding him & trying to comfort him all while my mommy radar was in crisis mode.

    Monday mirning as my hubby cared for him while I showered he vomited for the first time. His eyes were rolling back in his head. His breath was labored and fruity smelling.

    I was able to get an 8:00 AM appt. We saw the same Dr who ordered blood tests and an IV. I sat with him through lunch in the Dr office while an IV ran and DJ was sleeping on my shoulder. They told me he was dehydrated and I didn’t understand why. What seemed like decades the Dr finally came & told me what I already knew. He had diabetes. What I didn’t know us how critical he was. He was sent by ambulance to the ER while I followed.

    In the ER while my head was spinning & tears were near falling I could hear two hospital personnel asking why he was there & how they didn’t want him there.

    His regular pediatrician was on call & met us in the ER. She was arranging getting him a bed at on of two children’s hospitals, whoever called first got him. Both abt 200 miles away opposite directions.

    At one point in the day I remember wondering why everyone was wearing green. It was St Patrick’s Day. Our lucky day, the day we did not loose our son.

    As evening approached he was flown by helicopter to the Children’s hospital. My husband had joined me and was videotaping the helicopter take off. He knew one day DJ would think it was cool he flew in a helicopter (and he does) I could not bare watching it take off or I would have run after it begging to go with him. Nothing prepares a Mother’s heart to turn her baby over to strangers & have him be so far away.

    It was a very long drive to be reunited with him. I’m grateful for every Dr, nurse, lab tech, anyone who was involved in caring for him & getting him out of DKA, teaching us how to keep him alive and for our son who is stronger then diabetes. As St Patrick’s Day 2013 approaches we near 5 yr mark.

    I often wonder if a simple blood test given at his well baby check could have spared him so much suffering. We DO need to do something! The AM Diabetes website lists statistics stating since 2007 there has been an EXPLOSTION of children 5 and under being diagnosed. Surely there is something that can be done.

  31. Unfortunately same same as so many people. 4 Dr visits and everyone sent us away, one even sent us home with a sucker!! I remember driving Cara to the ER and trying to make up symptoms so they would take me more seriously. I told my mom “I’m NOT leaving this ER until they tell me what is wrong with my little girl” Luckily for us they didn’t send us away and Cara was dx with a blood sugar of 53.2mmols (957.6) I’m IN!! 100%

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