THIS NOTE ADDED ON 8/2/15: I HAVE ENOUGH FOR NOW…..DO NOT NEED ANYMORE PICTURES/STORIES AT THIS TIME. As many of you know, about 18 months ago I began the Child’s Cry for Change campaign which tackled the missed diagnosis of T1 diabetes head-on. Shortly there after, Kim May (a mom from Texas) and I started Get Diabetes Right which is a site FULL of professionally made flyers that anyone can download and post. There are many to choose from and many different phrases so you can choose the ones you like, download, and spread them all over town.
A few times I have requested stories and photos for different reasons surrounding this campaign. Many people have asked for a copy of the almost 50 page report surrounding this entire DKA at diagnosis situation that I have created, especially in light of the past few months.
The stories that people sent in, I made it clear that the stories would be shared (with all pertinent particular information removed). The few times I asked for photos, they were for different reasons but now I need them to add to this report. So today I am asking for anyone who had a child who was diagnosed via the DKA (AND MISSED DIAGNOSIS), route and was hospitalized for ANY LENGTH of time, to send me a photo to be included in my “Child’s Cry for Change” report, if you sent it before, PLEASE send it again.
No names of anyone will be included, just the photo will be added to the report in a collage of photos to be added to the many stories/news items already collected. The report will be available to others to use as we all work together to make changes across the country/world about the diagnosis of T1 diabetes being missed. SO by submitting your child’s photo, you are agreeing for it to be included in the Child’s Cry for Change report knowing that it will be circulated to include elected officials, media sources, and elsewhere. No matter where you live in this world….please send a photo.
Send your photo to tkarlya@drif.org and in the subject line just write DKA.
IF YOU HAVE A PHOTO OF THEM IN THE HOSPITAL…..AND ARE WILLING….PLEASE SEND THAT ONE. I will only use photos that COME IN VIA this email so please do not post them or add them in a reply. I would need them by midnight Sunday night so please do ASAP.
Some incredible doors have opened and are continuing to be opened to many of us who are giving energy to change this paradigm; and trust me when I say much more will be following. Any questions, I will surely answer, just email me. Again, please do ASAP—you do not need to do include ANYTHING the photo, no stories, residence, age,……nothing is needed but the photo.
DKA—Be Sure!!! (remember that phrase)
Thank you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
15 replies on “Was Your Child DX via DKA???? Surely Could Use Your Help…..Need this Post Shared, Please.”
So my son was in DKA but I wouldn’t call his a missed diagnosis, do you still want his pic. I have one showing how ill he was the day he was diagnosed and a hospital pic or two…I’m just asking for verification, the decision is his.
Thanks for all you do
Same here. Dka at diagnosis but it was dx’d immediately. Does this apply? If so, I’d be happy to send a pic.
I can use these because in essence, it was missed. The idea is not to say the medical profession failed here, parents missed the dx too….so education has to be for everyone. Thanks.
my son was diagnosed at 6 months old in DKA. for months after his birth he was always small and wasn’t “thriving” he always had an odour that was starchy sweet. We nicknamed him out little potatoe. It took a BG of 800+ to finally get diagnosed. Because of his young age we have fought against a tide of complications from atophy, to learning disabilities. He is 10 now and still holds the record for the youngest diagnosis in my state.
Thank you for sharing….a ‘record’ I am surely you would have ever wanted.
Do you want a current photo or from dx. age? Ray was 9, now 21.
I have enough for now….thank you.
I have a different side of this story which also goes to explain why a routine Urien test is so important @ check ups and when a child is sick. My daughter was diagnosed @ the age of 4 during a routine kindergarten check up. We did know she was sick and had no symptoms of type 1 diabetes other then she seamed to like to use the bathroom in side Walmart. During her routine check up to start school the nurse did a Urien screening and came in right away to fallow up with finger prick. Dr came in conferred and told us she had type 1 diabetes and we needed to go directly to the are right away. They ran down the symptoms and I knew they where wrong my bouncy full of life 4 year old was not sick and had no symptoms. As I tried to think about what she had to eat before I remembered the .25 machine candy. Yes that must have been it I said. Dr replied you could of given her a box of chocolate bars and it would not have made a difference if she wasn’t type 1. Off to the Er confirming be was over 700. Then a week stay at children’s hospital. U may be asking what this has to do with miss diagnoses and DKA which she didn’t have. Well about 3 weeks later we where back @ dr office when the same nurse treated us to see how my girl was doing. It was here he informed me that the same day he ca ought her diabetes he had revived an email from the state of California saying it was no longer madatory for Urien screenings to start school. He said he always checks emails around lunch but they where so busie that day he didn’t get to check it. He said had he read the email they would have never done the Urien sample that fought our daughters diabetes so quickly. I was thanking God for this. However it sad ends me to know there will be and probably has been so many missed diagnoses since they no longer do this very cost effective test. Ever child should have this screaming at check ups and when Sick. It took 2 seconds and saved us from what is usually a much harder and much worse diagnoses. This simple test very well could have been what saved my daughters life. Our Endo told us she is like a 1 in a million case people normally don’t find out so quick and easy. Not that I say why not. It should be 1 in a million that are missed. I do not know if this will help your cause but it is a perfect example of what could and should be.
Thank you for this—I sent you an email.
My son went to the Dr regularly and was tested for everything and was always normal until DKA but we will send his picture.
My son was dka diagnosis – we had no clue. Not a single idea it could have had anything to do with diabetes. Symptoms need to be posted in every single waiting room. Screenings need to be a part of well-checks. Let me know how i can help. I am in Ohio.
Thank you Lisa….I will be outlining some ideas in my column this week…..if they work for you—great. Thanks again.
Ok, I will talk to him and if he approves, get the pics out tonight. He’s had it 5 months tomorrow and he struggles with people knowing, we’re working on it and hope the diabetes camp he’s attending in a few weeks will help him be more comfortable with his diagnosis. 🙂
My granddaughter was dx at age 2. Fortunately she did not have to be hospitalized! She has been in DKA one time when she was 11, due to the Flu………Please let me know what I can do to help. I have shared your blog post on my page. Also, I would love to have a copy of your report! Thanks for all you do, Tom!
It will be available in the very near future.