A Child’s Cry for Change……Next Steps in this Battle and How You Can Help. Please Share Everywhere.

child's tearI have been pursuing the best possible in-roads to make changes when children visit their doctor’s office with flu-like symptoms and I had an in-depth discussion with someone  recently who gave me valuable advice for action.  

Our initial go round has been submitted for approval by the grants committee for a publicity campaign to doctor’s offices.  This will take some time and at least there is movement in this state-wide initiative.  I will keep you posted.  We need to do more.

The next step is larger in scope and it is here where I MUST ask your help; for without your help this will go no where.  I need official letters of YOUR experiences if the diagnosis of your child was missed at the doctor’s office and what ensued afterward

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 missed diagnosis stories without naming the physician or treating facility.  Please send your email, including your name and address, 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?

I am a diabetes dad.

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

20 thoughts on “A Child’s Cry for Change……Next Steps in this Battle and How You Can Help. Please Share Everywhere.

  1. My son was diagnosed at a well child checkup. I told his awesome dr he was “off.” Eating/drinking/going to the bathroom a ton. She had him pee in a cup= keytones and a finger stick that read HI. Off to the hospital we went…

  2. My daughter was diagnosed in January. Exactly one month prior to diagnosis I took her to an urgent care center where I decribed several flu like symptoms. A blood test was performed but it did NOT include blood glucose test. She could have been diagnosed that very day. very scary.

    • Lilly,
      would you be willing to find the instructions in thi spost and send this story to me as I listed in the article? I need EVERYone who has this type story to share it with me.
      Thanks

  3. Do you JUST want flu-like symptoms and near-death stories, or other symptoms that triggered a doctor visit with diagnosis missed until a later date and a less critical hospital admission?

  4. My granddaughter almost died after being sent home from the doctor’s office more than one time for the same symptoms as most parents take their children to the doctor for. Excessive thirst, urinating profusely, lethargy, etc. My daughter whisked her to the E.R. just in time, she’s now just a little over a year and doing well thanks to her pump and her monitor. Not to mention her Mom & Dad & Me!

  5. Tom, while my daughter’s diagnosis was not missed It was because of one thing and one thing only she had already been diagnosed at 18 months with Hosimotos thyroid disease and we had an Endocrinologist who immediately tested her for Diabetes when we reported her excessive thirst and bedwetting however her primary care doctors failed to diagnose her thyroid disease for the first year of her life and I’m sure would not have tested for Diabetes I’ve always felt like her thyroid disease saved her life.

  6. I don’t know if our story helps because we are in Australia and maybe you are wanting to know about cases in America. Our daughter displayed symptoms for many, many months and I took her to two different doctors with both telling me that I was “very lucky to have a baby that drank water. Many mothers can’t get their babies to drink anything other than milk or juice.” A few months later we didn’t feel so lucky. We had just moved back to my home town when the vomiting started. Bree seemed to be drifting in and out of consciousness so we called our doctor who said to bring her straight in. He then left us in the waiting room with her limp body draped over me (he could see her when he came out to get other patients). When he finally saw her he thought she might be a little dehydrated, but perhaps it could be pneumonia, so he decided to call a paediatrician to visit her in the hospital that evening. But he thought we would probably be able to go home later that evening after she was hydrated. When we arrived at the ward the nurses also thought it might be pneumonia, but when the paediatrician arrived he stood in the doorway and had his diagnosis, even before testing her BGL’s. He said had we not been sent to the hospital she would have died in an hour or two, and he refused to discuss diabetes with us that night because “We had to make it through the night first.” Bree was 17 months old at the time of diagnosis. I have never told our diagnosis story before because it is a night I would rather forget. No Diaversary parties in our house I’m afraid. But if you would like to use our story I would be happy to help and write a letter.

  7. The “letter” is now on my to do list and will get done within a week or two – that’s a promise – this is wonderful that possibly our voices will be heard about missed diagnoses and/or close calls. Thank you for making this book!!!!!

  8. I will be following your instructions and send you our story. It’s a great thing you are doing! I try and tell our story to as many people as possible to help other potential type-1 diabetics. For others reading this post: my 18 month old went in to her regular pediatrician for a well baby check up and I told him she wasn’t her normal happy self (lethargic, peeing a lot, not hungry) and he said she’s a toddler and her attitudes and food pickiness will get worse, so basically she’s a toddler and that’s the way it is. We went home and over the next 6 weeks she just got worse by stopping walking, no appetite, peeing out of her diaper every hour, she lost over 6 pounds (she was only 25 lbs), & severely constipated. We went to see her doctor every single week for those 6 weeks & he just chalked it up to “severe fecal impaction”. His words were “she will get better after she goes”. He was actually getting annoyed at my persistence. I did what it took to get her to go and she didn’t get better, just worse. Mind you she was looking extremely ill, and he didn’t notice? Looking back at the pictures I took of her, he obviously was on auto pilot not even looking at how dehydrated and sickly she was and not walking after fully walking and running for several months before this. My husband insisted we see a second opinion doctor, so I took her immediately. Within 5 minutes in the new doctors office, she said “you need to take her to the ER across the street, I will call over there to get her seen immediately. Over $10,000 worth of tests later they rushed her to the PICU with severe DKA. It was a trickle down effect of several other problems that she developed while being helped. Thank the Gods we saw the second opinion md and she helped us get into the hospital immediately. Afterwards the “pediatrician” that misdiagnosed her for 6 weeks called and left a couple of messages apologizing. There was no way I would be able to speak to him without blowing up, so I just left him wondering. With physical therapy she began walking again about 6 weeks to the day. This could have been a tragic story, thank the Gods it’s not. My toddler is a happy, pump wearing child that happens to be type-1. I hope our story helps others.

  9. Pingback: A Child’s Cry for Change | Diabetes Advocacy

  10. Pingback: Around the Diabetes Online Community - November 2013 Edition : DiabetesMine: the all things diabetes blog

  11. My son was misdiagnosed via phone several times at the age of almost 18 months. I called his pediatrician to ask about his eating habits: he only wanted sweet, wet foods, stopped eating almost entirely and just wanted milk, milk, milk and water. I was told it was a phase and typical of 18 month olds. Finally after several days of calling, I again called reporting all eating had stopped and he was asking and crying for milk and/or water plus his diapers seemed unusually wet. My last call reported him finishing off 20 oz of water in no time and wanting more. The doctor got on the phone and told me to bring him in, it was probably nothing but he wanted to see him. In my case I just couldn’t get past the nurses to the doctor until the final call. Needless to say, he went the the ER that night and right into the NICU. Luckily for us he had high ketones, high glucose but was responsive and only stayed in NICU overnight before being moved to the Ped floor.

  12. Our son was dx with Coeliac Disease when he was 5….Really he had been “off” for years and although there was a family history of it I had him tested many times and results were always negative. However, the physical symptoms were telling a really different story. Finally, he was Dx and started to improve but then started to slide downhill again about 2 months later…in hindsight it was obvious – all the symptoms he had could be written off against other things…drinking more – weather was warming up, cranky and tired – end of first year at school, really pale and greyish – he is a fairly pale kid although when you look at photos now how grey he was is alarming. I had taken him to the Dr’s (GP) for about 4 months on and off as the end of his penis was ALWAYS bright red and hurt / itchy. All I got told was change the soap, no soap etc…….no one ever did a urine test. I actually rang his gastro dr and asked if I was mis managing peads Coeliac in any way – based on the info I gave him he said take him to dr and demand these test – we did and the rest his history.

  13. In January 2010 Our 1 year old son passed away due to being miss-diagnosed and then treated wrong in the NICU. They caused his death. We shared our story withPNDRI in Seattle that I can send you, it doesn’t give the whole story but it is very powerful. No child should ever be lost to this way.
    Below is the link of our story , Rocco’s Story

  14. My daughter’s story is one of misdiagnosis. I would LOVE to talk to you and find out how to get this very thing started in our state of GA!!! Thank you for all you do :)

Leave a Reply

Connect with:

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>