Last Call for Undiagnosed Stories—–PLEASE Share Yours.

child's tearI call it, simply enough: A Child’s Cry for Change.  Too many close calls; too many missed diabetes diagnosis.  I will be sending all of the stories these to a number of people in January seeking to reverse this trend; and this is the last appeal to have your story included.

There are numerous families who suffered the ‘missed diagnosis’ by their doctor of their child’s type 1 diabetes, resulting in hardships and even death.  Under a project called A Child’s Cry for Change, an attempt is being made to change this trend.  The goal is to amass a large number of these missed diagnosis stories and present them to leadership in medicine, health agencies and/or government in the hopes that change occurs; the very least being the administration of a urine test (ideally a blood test).

 
We are seeking families to send us their ”diagnosis stories without naming the physician or treating facility.  Please send your email, including your name and address at the end of your story/email, to: Tom Karlya, (aka DiabetesDad) at karlya@optonline.net.  In the subject line please write: My Diagnosis Story. Thank you; together we can make a difference.

I am tired of this happening and I will not sit still any longer; I said it a million times, just ‘don’t do nothing’.  Will it work?  I am not sure but doing nothing is unacceptable to me and we should certainly try.  Will you join me?

Thank you.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

0 thoughts on “Last Call for Undiagnosed Stories—–PLEASE Share Yours.

  • jennifer quintero says:

    It was may 24 2010 my son was diagnosed with Type 1 diabetes .this is how his story went he was very sick is what we thought he had all the suspense going to the bathroom alot i mean alot alway thirsty i mean thirsty he was losing lots of weight, foaming to the mouth, throwing up i called his dr. And told the nurse what was going on with him( but i didnt know nothing about type 1 diabetes ) so the dr check him out looked him over and diagnosed him with food poisoning or maybe virus going around .so so remember he was thirsty going to the bathroom and throwing up foaming from the mouth this is what i told her so she prescribed him some medication and then I took him home gave him the medication to keep

  • My son was sick with what I thought was the flu; very achy but no fever. On Tuesday, Feb 22, I took him into the local emergency room because he never had a bug like this. He had such a range of symptoms. We were basically told a bug… no bloodwork or urine or labs of any kind. He was given a pain killer for his sore muscles and a steroid. This was a Tuesday am and by Thursday pm all he would do was lay in the dark. I took a digital scale to his room and weighed him knowing what he weighed in the emergency room two days prior…he had lost 9 pounds in two day. I called our pediatrician on call line and listed all his symptoms: lethargic, no appetite, extreme thirst. I told the doc on call that my son was dying; he was almost 12 and didn’t want his cell phone, xbox, wii or DS. After listing all his symptoms, I was asked if he was constipated. Knowing what I do now, I had just listed every classic symptom of Type 1 Diabetes… we went into our pediatrician’s office the next day. One of our regular physician’s listened to me and took one look at my son who could not even muster the strength to sit up and said “I think he has diabetes”. Thank goodness someone finally saw what this was. Needless to say, within hours we were in the Pediatric I.C.U. at Lutheran General in Illinois. We were lucky to survive that week and I am grateful every day we did.

    My daughter was diagnosed the following year after I saw it unfolding. I myself took her in and we caught it so early.

  • My son wasn’t diagnosed until February 2013 at which time he was 14 months old. We had spent the previous 6 months back and forwards from our GP Doctor who kept diagnosing throat infections. Finally he got so sick he slept for a whole day, was breathing heavily and so so lethargic. We went back to the GP twice that day where the doctor told me “not to let him sleep too much” and it was that it was another throat infection and fever. First thing the next day I was back at the doctors and again was sent home. Went back in the afternoon and saw the nurse first who was obviously panicking about the state of my poor baby, saw the doctor and he sent us to hospital for a chest x-ray thinking it was Pneumonia!! As soon as we walked into the hospital they knew it was diabetes, they could probably recognize the smell of ketones but the sent us straight through and were amazing! I was so upset that all the GP had to do was a simple blood test to see my sons sugar was through the roof. In his defense he said he was so rare in a child so young it didn’t even cross his mind, he even went over our case with the rest of the doctors at the clinic and none came to the diagnosis of Diabetes. GPs need to be doing blood tests just to be sure, even if it is distressing for a baby to have a blood test they can’t think like that as it is worse if the diabetes stays undiagnosed.

    • Peter & Carolyn says:

      It was the end of winter, August in New Zealand. Nicky our 2 and a half year old daughter was lethargic. Even her first trip to a snow resort failed to excite her, we don’t get snow where we live. Several trips to doctors resulted in responses like “she is looking thinner because she is in a growth spurt transforming from a chubby baby into a growing girl” or “lots of kids wet their pants at this age” or “Mum has asthma and it looks like she has it as well, an inhaler should fix the gasping for air”. Even one after-hours emergency doctor said it could be a psychotic problem stemming from over anxious parents and he gave her a LOLLY POP, telling us to bring her back after 3pm if there was no improvement. We later learnt that his Sunday shift on duty ended at 3pm and it would be another doctors problem then. Who wouldn’t be anxious when their two year old was losing weight hand over fist and lethargic with a raging thirst and gasping for air.

      Finally we went back to our own family doctor who was still at a loss and told us to take her straight to the emergency room at the local hospital. After a long, long wait we had to carry her into the consulting room and a very young doctor, barely out of short pants (we called him Dougy Howser) walked into the room and made the diagnosis within seconds. Her blood resembled tomato soup with melted butter floating on top. The expert care in the hospital’s intensive care slowly stabilized her and then another week in the general ward. It was the week of 9/11 in fact, it reminded us that there was a lot of people in the world suffering more, we were thankful still to have our little girl.

      Five months later we noticed Kim our 9 year old daughter taking a drink bottle to bed and we knew immediately that we were on the roller coaster again. A simple prick test with Nicky’s BG monitor confirmed diabetes but we caught it early and with our knowledge gained, and this time with the assistance of their great pediatric team just a phone call away we managed it ourselves without hospital admission.

  • My sons and I went on vacation this Thanksgiving to visit my family in Florida from Texas. In the months leading up to our vacation my little guy became very fussy from the happy baby he was just a few months prior. While we were visiting my 15 month old cried almost the whole week and was screaming for water. He would pee through his diaper 2 or 3 times a night and was so tired during the day that he went from his one nap to a few a day. One night after peeing through his diaper I took him into the living room to sit with my sister in law for a few minutes while I changed his bed and he saw my water bottle and 6completely lost it because he was so thirsty. The next morning we went to an Urgent care and I told the doc that he was thirsty, screaming all of the time, and peeing like crazy and he was also pulling at his ear. The doc checked his ear and said that it was infected and gave me antibiotics. He said he was worried about dehydration but not about diabetes because kids are usually 6 or 7 before they come down with diabetes, but if he became more lethargic to take him to the ER. The next day with the antibiotics the little guy was almost back to normal and playing with his cousins. The following day he could hardly keep his eyes open and all he wanted to do was sleep on the floor or being held. I rushed him to the ER and the admitting nurse said I should know better because it takes 3 or 4 days for antibiotics to work. He actually said, “so what do you want us to do? It is an ear infection.” I said “please take blood work” and within a few minutes the results came back and my little man’s blood sugar was 940. An ambulance from the closest children’s hospital came and we were in the ICU for 2 days.

  • My Daughter was diagnosed December 13th 2012 , She had been constantly thirsty and hungry she couldn’t get enough to drink, have ing leg cramps and muscle spasms, she was getting thinner and her mood was not herself. She had started a new school and puberty , her grades were slipping her personality had changed .I took her into the pediatrician and was telling her everything going on and she basically accused me of starving my daughter!! I told her to run blood work because I thought it might be thyroid disease since myself and several other women in the family have it, the doctor told me that she thought she needed counseling because she was loosing weight, she thought she was trying to, then she started asking me if I had food in the house and was I feeding her when i had just told her she was eating everything she could get her hands on! At this point I was a wreck here I am trying to get help for my obviously sick child and before she even ran tests she thinks abuse , why would I be begging you to help her if I was mistreating her? Well after I pushed for the blood work and had them check for EVERYTHING! It came back she had keytones and her blood sugar was around 630 , then sent us straight to hospital where we spent the next three days learning how to manage her diabetes! I never would have thought Diabetes! What if I hadn’t pushed for the bloodwork? How much more sick would my daughter have had to be before they would have figured it out? When she was in a coma?

  • It kills me to read these. We were the lucky ones. My son’s Dx was textbook-perfect (if you can use a word like that considering the circumstances). 3/30/11 was a Wednesday and was 13 days past my son’s 6th birthday. We were scheduled for Tyler’s annual well visit to the doctor. We arrived and, for the 2nd time in his life, he went in the bathroom and peed in a cup for the nurse. Our pediatric office starts that procedure at age 5; or so they did then. It might be earlier now. After that, we were brought to an exam room and went through the usual questions and answers and checks, etc.. We completed the appointment and left the office. We had just gotten in the car and I had started to pull out of my parking spot when the receptionist ran outside and called us back in, telling me that the nurse needs to talk to us. Lo and behold, the pee in a cup test had worked. Tyler’s test strip was brown. The other ones on the counter were blue. A blood test was the next step: BG 409. Right to the hospital we went for a 48-hour crash course in diabetes care.

    We brought Ty home that Friday, confident that we (1) had a terrific support network in place and (2) were trained well enough to handle the, overall, necessities of his disease.

    Yes. We were the lucky ones. And in my opinion, for as long as there isn’t a cure, every family should have as easy a diagnosis and as excellent a training plan in place for them to learn.

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