What am I Doing Here?……..for Kycie, for Reegan……the Fight Goes On!

Kyce ReeganThis is the question I asked myself as I looked at the many attendees at the American Association of Diabetes Educators (AADE) Annual Meeting who stopped in to the presentation of the incredibly knowledgeable Susan Weiner and myself at our missed diagnosis of T1D.  People believe that speaking in front of a large crowd is easy for me, in reality it is not, for reason that those who are close to me understand.  It is even more daunting when the audience is full of professionals.  REALLY SHARP PROFESSIONALS.

The week before I was to speak I reached out to two parents who lost their child to this disease being misdiagnosed and to fill them in on what was happening. It is always a stark reminder to me that this work should not, and will not, stop for me until the paradigm is changed to a direction where each and every person showing stomach virus like symptoms (and more) are checked for elevated blood sugars.

What makes it easier for me to present is when I reflect on each and every person I have met in this battle who has a child who and is no longer here because a simple blood check was not done.  I also reflect on the many people who have joined this fight, and have been in this fight, long before we have arrived where we are today…….but make no mistake; the surface is barely scratched.

Presenting at AADE allowed a very unique opportunity.  Hopefully, and eventually, every state will hear the message and carry the banner.  The list keeps getting longer of those who help and when it comes to AADE, Susan has been my mentor and guide through the maze of people more educated than I could ever become and true community leaders.  My thanks to her are endless.

I also know I have a story to tell……..and as long as I have a breath in me, the story will continue to be told………it’s owed that much energy, and more, to Kycie, Reegan, and the so many more who can no longer fight for themselves.  Are you still in the fight? Because we surely need everyone willing to spread the word.  Let’s not wait for the next Kycie or Reegan to happen to say, ‘this is horrible’.  Let’s get rid of ‘horrible’.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Flu/Virus-like Symptoms do not Just Mask the diagnosis of DKA/T1D—-THEY ARE SYMPTOMS.



diagnosisI need to rethink how I am going about the warning signs of DKA.  I was out with a dear friend, an attorney and mom to 3 children with T1D as well as a husband with T1D, when Danielle states, “You know, signs of flu/virus-like symptoms do not mask DKA…….they ARE signs of DKA.”

And I have not stopped thinking about that line since she said it.  If someone visits the doctor and has a fever, sore throat, and difficulty swallowing they are tested for strep throat.  Symptoms dictate what is tested….right?  Talking to decision-makers and people within our community, I have been saying that flu/virus-like symptoms, in some cases, are masking the onset of T1D and we need to do something about it.  That message is now changed—my message needs to be that those signs ARE SYMPTOMS.

‘Masking’, actually, is not the case.  The case is actually quite clearer than that: The ADA defines the signs of DKA being:
KA usually develops slowly. But when vomiting occurs, this life-threatening condition can develop in a few hours. Early symptoms include the following: (NOTE the “But when Vomiting Occurs…..”) 
Thirst or a very dry mouth
Frequent urination
High blood glucose the main sugar found in the blood and the body’s main source of energy. Also called blood sugar.  (blood sugar 1. A class of carbohydrates with a sweet taste, including glucose, fructose and sucrose. 2. A term used to refer to blood glucose.) levels
High levels of ketones in the urine
Then, other symptoms appear:
Constantly feeling tired
Dry or flushed skin
Nausea, vomiting, or abdominal pain (Vomiting can be caused by many illnesses, not just ketoacidosis. If vomiting continues for more than 2 hours, contact your health care provider.)
Difficulty breathing
Fruity odor on breath
A hard time paying attention, or confusion

KA usually develops slowly. But when vomiting occurs, this life-threatening condition can develop in a few hours.  So the flu/virus-like symptoms do not only mask what could be T1D, THEY ARE THE ABSOLUTE LIFE THREATENING CONDITION warning signs.

So the question and argument needs to be made, why is the diagnosis being missed?  Missed by parents and medical professionals alike?  How many times have we heard that the key to medical advice is ruling out what one does not know.  The message to drive home is not that this could ‘be something’ but rather DKA MUST BE RULED OUT MOVING FORWARD.

The warning signs are clear…….if someone has any/all/some of the symptoms stated above, the only acceptable practice must be for either ‘keytone’ stick or a simple blood test with a glucometer to rule out DKA/T1D.  Neither one, to my understanding, can be used to diagnose but surely the flag of red would be waived vehemently that further testing needs to be done.  The point is ‘that it will be caught’ BEFORE a real problem occurs.  Again: But when vomiting occurs, this life-threatening condition can develop in a few hours.

Flu/Virus-like symptoms (nausea, vomiting) are not masking the diagnosis; they are SYMPTOMS which should/must make the only acceptable practice to take the steps to confirm or rule-out the diagnosis of DKA/T1D.  Period.  That is the message to deliver across this great land of ours.

Feel free to email this column to a family practice/emergency room/pediatricians’ offices today…..and let me know you did.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Messages on the Way to Washington…..Your Messages.

Capitol hillThe names jumped out at me; Grace, Kylie, Samantha, Callan, Shelby, and so many more.

Stories of kids.  Heartbreaking stories.

There seems to be an ongoing dilemma in the diagnosis of diabetes.  Or should I say ‘missed’ diabetes.  A while ago I asked if people would be willing to share their stories.  Stories of kids who went to the doctor, or hospital, or walk-in clinic, with symptoms that would eventually lead to the road of the ‘new normal’….diabetes. 

But the diagnosis was missed when they first went.

Would you be willing to send a story and picture and I would find people who were going to Washington who would share your story there too.

And the stories kept coming.  Most were from parents willing to share.  One touched my heart because it was from Alyse, she wrote the letter herself, and she is 8.  I thank everyone who took the time to share something so personal.

I want everyone to know that there are carriers of the stories. People going to Washington, and who knew others going to Washington, also contacted me and stated they would be willing to carry these stories to be told.  

The stories that need to be told about being misdiagnosed, that for the most part, eventually found their way back to the path of going home with the new normal.

Some, and it is these stories that were the most troublesome, did not. 

Mary Kathryn’s story just broke my heart. You can read her story by clicking the link, it is a rough story to read.  My heart broke.  It was the strength of her mom, Deborah, that weakened my knees.  Her last line, “…….but please feel free to share it in any and every way possible.”
Who would do that?

Who would be out there in this wa?.  Someone who wanted to make a difference?  Someone making sure her pain is never felt by others….ever.   Makes one wonder, after reading something like that, if we are working hard enough.

I was hoping I would have stories and when I had them and shared them I wanted to end my column by saying, “The good news is that these stories will be read in Washington and State Capitols…….”  But in truth, it is not “the good news……anything”.

The stories are horrid.  They will break your heart.

So I will end this way, as discussed, the stories people provided will be taken and delivered to those in the decision process.  We are planning other things also to get the word out but in this month of March, elected officials will listen to these stories.  Let’s hope they really hear them also.

And that’s a start.

I am a diabetes dad.

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