NEWSBREAK: The Story of (Kisses for) Kycie; from her Mom and Dad

kycieElizabeth Stein was diagnosed with T1D at age 10.  Elizabeth did not like to dance, Elizabeth LOVED to dance.  In 2000, as a neighborhood fundraiser in her Orlando community, she created Dancing for Diabetes.  Diabetes would stop her…..from nothing.

Elizabeth holds her event every November, this year’s being number 16, to better the awareness of diabetes.  I will write about the event in an upcoming article, but something happened at the event that I would like to share with you and Elizabeth, wanted me to share it as well.

Each year, at the start of the second act, young people, all with diabetes, present a dance number especially for them, this year there were 24 kids showing diabetes as Elizabeth has, will stop them from nothing….and dance they did.

The second act always begins with a video to make her audience better aware of an aspect of diabetes. Her awareness this year was about the missed diagnosis of T1D.
She interviewed some people about this and I was fortunate to be included.  We knew what it was about, but was not told the entire story.  You see Elizabeth also flew to Utah and interviewed the parents of Kycie, who we all knew from Kisses for Kycie.

This is 16 minutes long and be aware; it’s not an easy watch.  But PLEASE know this; Kycie’s parents do not want this story to end, they want it to begin.  They want, just as Reegan’s parents want, the world to know and to be aware of diabetes.

Yes, get angry, and surely feel free to cry; but when it’s over also know that you can help accomplish what Kycie’s parents want, what Elizabeth wants, what Reegan’s family wants—-to spread the word about T1D being missed as a diagnosis.  Without anything further, I present Elizabeth Stein’s story regarding Kycie.  Click Kycie’s picture to begin the video.

I am a DiabetesDad.
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So Many Have Asked about Missed T1D Dx Legislation…..A Suggested “Here’s How To……”

two kidsAfter Pennsylvania became the second state in the Union yesterday to have some sort of Legislation or Resolution passed regarding education of DKA and  the missed diagnosis of T1D, many people wanted to know “How do I do this in my State?”

There is no ‘one way’ but I put together a little bit on what we have learned thus far.
Consider this an “A” how-to article; certainly not “THE” how-to article to get you started.  The reading below is long but it’s a map that can be used to get you started.

You have decided that the rules in your state need to be changed regarding ‘missed diagnosed’ T1 diabetes.  You want to change the paradigm of children entering diabetes ketoacidosis (DKA) and you want your state legislator to be involved.  Great.

Now what?

The only way ANYONE became GOOD AT THIS is by doing it……know that as you start.  Do not be afraid to make errors.  Relax.  You know this disease, you live with it every day.  Below are JUST SOME IDEAS.  Add, remove, use what helps and don’t use anything with which you are uncomfortable.

Keep the message straightforward and stay on message/point: Too many kids are being diagnosed in this country with T1 diabetes by going into DKA because flu/virus symptoms are masking the onset of T1 Diabetes DKA. It results in hardship, hospital stays, and even death. A few steps could help prevent it from EVER happening. Stats are not even kept on this phenomena, but we surely know it exists.

The next thing to do is be prepared.  Assume that your representative knows nothing.  Do your homework and see if you can find some statistics from your state about diabetes.  If not, there are plenty of sites that can supply information for you locally, nationally, and globally. Some links: http://www.cdc.gov/diabetes/data/statistics/2014statisticsreport.html – National https://www.idf.org/worlddiabetesday/toolkit/gp/facts-figures – Global

You will try to arrange a meeting with your representative; when s/he is in the local office is best.  If they cannot meet personally with you, but one of their representatives will; take that meeting.  Get to know SOMEONE in that office. Arrange a sit-down; and discuss YOUR story.

Even if you have not experienced DKA at diagnosis but you have a loved one with T1D; that’s fine.  You are speaking of the rise in T1 in this country and why we need to do something about it. After your story, discuss facts about diabetes–share information. From Medicine.net type 1 diabetes: An autoimmune disease that occurs when T cells attack and destroy most of the beta cells in the pancreas that are needed to produce insulin, so that the pancreas makes too little insulin (or no insulin). Without the capacity to make adequate amounts of insulin, the body is not able to metabolize blood glucose (sugar), to use it efficiently for energy, and toxic acids (called ketoacidosis) build up in the body. There is a genetic predisposition to type 1 diabetes.

The disease tends to occur in childhood, adolescence or early adulthood (before age 30) but it may have its clinical onset at any age. The symptoms and signs of type 1 diabetes characteristically appear abruptly, although the damage to the beta cells may begin much earlier and progress slowly and silently.

The symptoms and signs include a great thirst, hunger, a need to urinate often, and loss of weight. Among the risks of the disease are serious complications, among them blindness, kidney failure, extensive nerve damage, and accelerated atherosclerosis. The long-term aim with treatment is to avoid these complications or, at the least, to slow their progression. There is no known cure.

From Mayoclinic.org Diabetic ketoacidosis is a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. Diabetic ketoacidosis develops when your body is unable to produce enough insulin. Insulin normally plays a key role in helping sugar (glucose) — a major source of energy for your muscles and other tissues — enter your cells. Without enough insulin, your body begins to break down fat as an alternate fuel. This process produces a buildup of toxic acids in the bloodstream called ketones, eventually leading to diabetic ketoacidosis if untreated.

Explain the difference between T1 and T2. Share other pertinent facts/information. Now ask how s/he may help:
Here is just a partial menu to consider, go over it with your Representative: 1) Parental Education – Physicians provide this education to parents since parents are the “first responders.” Example: Proposed NC Bill that encourages parent education during well-child visits at specific intervals regarding Type 1 Diabetes.

2) Require physicians to give either a finger prick blood test or a urine test to every/any child who enters the office showing flu/virus like symptoms. This would allow the doctor to know if the child has an elevated glucose level.  Although it cannot be a diagnostic tool for T1D, it will surely show that more testing is needed.

3) Educating school children about Type 1 Diabetes at the elementary, middle school, and high school levels. Should this be part of the core curriculum? This may already be in our curriculum. However, to what extent is this covered in school? In what grades is this taught?

4)  Require Physicians to learn about Type 1 Diabetes (and Diabetic Ketoacidosis) as part of their initial and continuing professional education utilizing it for education credits awarded as is required.

5)  Screen populations for children who may go on to develop Type 1 Diabetes by testing for the auto-antibodies of T1D.

6) Seek laws already in existence where new laws may be ‘piggy-backed’.

Ask your legislature what they think could/might/will work? Enter the dialogue and leave with, “What happens next and when should I check back with you?”

You are on your way.

This is the wording that passed the house in NC; it stands ready to be presented to the NC Senate. A BILL TO BE ENTITLED REEGAN’s RULE AN ACT ENCOURAGING PARENT EDUCATION DURING WELL-CHILD VISITS AT SPECIFIC AGE INTERVALS REGARDING TYPE 1 DIABETES The General Assembly of North Carolina enacts: SECTION 1. Chapter 130A of the General Statutes is amended by adding a new section to read: 130A-221.5. Diabetes education as part of well-child care. Each physician, physician’s assistant, or certified nurse practitioner who provides well-child care is encouraged to educate and discuss the warning signs of Type 1 diabetes and symptoms are with each parent for each child under the care of physicians, physician’s assistant, or certified nurse practitioner at least once at the following age intervals: 1. Birth 2. Twelve months of age 3. Twenty-four months of age 4. Thirty-six months 5. Forty-eight months 6. Sixty months.  Section 2. This act becomes effective October 1, 2015 – See more at: http://diabetesdad.org/#sthash.GCSHKyh8.dpuf (We are well aware that his is a very ‘soft law’ but it is a start.  When this bill passes, we can encourage the State’s Health Commissioner to follow-up with educational material to the medical professionals in the State of North Carolina.  Hopefully son we can say, one down and forty-nine to go. Pediatrics; The Official Journal of the American Academy of Pediatrics wrote in the conclusion of their study on the subject matter of DKA in Youth upon Dx:

CONCLUSION: The frequency of DKA in youth with type 1 diabetes, although stable, remains high, indicating a persistent need for increased awareness of signs and symptoms of diabetes and better access to health care……… Cite:  1.   Published online March 31, 2014 Pediatrics Vol. 133 No. 4 April 1, 2014 pp. e938 -e945 (doi: 10.1542/peds.2013-2795)

A recent study to explore the pathway to diagnosis of type 1 diabetes (T1D) in children from the perspective of the child, family, and general practitioner (GP) concluded in their study, “… that the difficulties for parents and GPs in recognizing the early symptoms of T1D suggests that future interventions should be targeted at parents in the appraisal interval and include the importance of timely presentation to a healthcare professional and the differences between type1 and 2 diabetes.
PRIMARY CARE PHYSICIANS SHOULD ALSO TAKE PARENTAL CONCERNS SERIOUSLY AND DO URINE DIPSTICK TESTS DURING THE CONSULTATION FOR CHILDREN WITH SYMPTOMS OF T1D.”   Cite: (Full study can be found: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3855567/pdf/bmjopen-2013-004068.pdf ) SCIENCE DAILY: (in context) Type 1 diabetes….is estimated to affect around half a million children worldwide, increasing in incidence by an estimated 3% every year. Cite: Society of Endocrinology, Science Daily March 19, 2013 40,000 people are diagnosed each year in the United States Cite: CDC National Statistic Report, 2014

5 Million people in the United States are expected to have T1 Diabetes by 2015, including nearly 600,000 youth.
Cite: JAMA –2014–311: p. 1778-1786

Between 2001-2009 there was a 21% increase in the prevalence of T1 diabetes in people under the age of 20
Cite: JAMA –2014–311: p. 1778-1786

3 million Americans have T1 Diabetes Cite: JDRF.org

Okay: You do not want to go the legislation route, that’s fine.  How about letter writing campaigns to the hierarchy at these organizations painting the picture that something needs to be done.   And enlisting their help to make a difference. The American Association of Family Physicians: http://www.aafp.org/home.html
The American Academy of Pediatrics: www.aap.org
The Society of Pediatric Nurses: www.pedsnurses.org

All of these organizations have state level ‘chapters’ as well.

Do not be afraid to ask the major diabetes organizations that have advocacy departments to help.

Start a campaign today.

I hope this gives you a start.  I surely do not know all the answers and feel free to go in a completely different direction if you wish but ask yourself constantly: Will this accomplish something tangible.  Follow your heart. Follow your brain.

Saving one person is monumental.  My goal and thought process when I started was; “if we can just see one person’s flu/virus-like symptoms and intervene and see if it is T1–and it is—–I would deem the entire effort worth it.  Just a year into it we know of six children.   That does no help to little Reegan or Kycie; who lost their battle—-but in their names (and others) we can change this and we will change this because we choose to just ‘Not do Nothing.”

God bless you on this journey.  And thanks for caring.

I am a diabetes dad.

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

 

NEWSBREAK: PA House Passes Resolution Regarding Better Education For Missed T1D Diagnosis

Debbie Healy When Debbie Healy’s son had a blood sugar of 1400 and his diagnosis of T1D was missed, she realized later on in life just how lucky her family was.  She also grew to know others who were not so lucky.

Not taking ‘no’ for an answer she led the way for PA House Resolution 569 to pass today in the State Capitol in a whopping 196 Yay and O Nay vote encouraging better education of diabetes in the State of Pennsylvania so a diagnosis of T1D is not missed or mistaken because of flu-virus like symptoms.

Based on a similar process where a law was passed in North Carolina, Debbie felt the presence of little Reegan and her family today as she heard the vote; “I just kept thinking of Reegan and how her mother wanted something good to come out of something so senseless.  How we both wanted to do something to make sure it did not happen again.”

Indeed!!!!

Pennsylvania State Representative Ryan MacKenzie not only sponsored the bill, but gave Debbie 15 minutes on his TV station to spread diabetes awareness (see picture above).  “He is such a genuine, caring person; he was with us EVERY step of the way”, Debbie says of her new-found colleague in this crucial battle.  “He was brilliant.”

The passed resolution makes Pennsylvania the second state undertaking such action and other states are in line as well.  Debbie was quick to add, “I am very happy that this resolution passed, but there is still work to be done…..my eyes are on the PA State Senate next.”  You go, girl!!!!!

Hopefully it’s only a matter of time that this leaves being left to individuals and gets tackled by more powerful diabetes advocacy organizations seeing the need—-feel free to drop them a line with a copy of this story and ask them, ‘When are we getting involved organizationally?  When are we going to do this for the Kycies and the Reegans of this world.  How many more must die?” Ask them (and I mean it) and let me know what they say.

Pennsylvania learned today, as they did in North Carolina, Mama Bears set their minds on something, it will surely come to be.  Congratulations Debbie Healy and everyone else who helped this become a vote today, Resolution 569; passing 196 to 0.
The Resolution:
PA Res 569 pg 1
PA Res 569 pg 2

I am a diabetes dad.

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

 

What State DO You Live???……We Need Your Help!!!!!

United-States-mapWe are looking for crucial data on DKA.  PLEASE share this link in any group where there are moms (and dads) of kids with T1 Diabetes.  Local Chapters, Support groups, hospital groups, as well as FB pages and other diabetes gatherings.  It is crucial that we get a good amount of participants from every state.

Please click this DKA SURVEY and answer the few questions if your child was diagnosed with T1 while in DKA.
Also they need to have been diagnosed within the last 10 years and you need to live in the United States.  If your child’s dx was originally missed because of flu/virus-like symptoms are specifically needed

I also want you to know in advance that the last question of the survey is asking for your email.  The reason for that is simple; if these results show what I think they will show, opposition is going to challenge the validity of the survey.  You can submit the survey without the email but it will help add validity to it…..OF COURSE KNOW THAT NO ONE GETS ANY OF YOUR INFORMATION UNTIL WE SPEAK FIRST, IF THE SURVEY EVEN NEEDS VALIDATION.  Again, the survey CAN BE SUBMITTED WITHOUT an email if you so desire.

If anyone has any questions——feel free to ask me; tkarlya@drif.org

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

DKA — REALLY NEED YOUR HELP–WE NEED VITAL INFORMATION–FROM EVERY STATE.

NEED YOUR HELPTo say the last two weeks have been an incredible journey would be an understatement.  I have just learned so much from you all regarding the topic of undiagnosed T1 and being in DKA.  The pictures you sent of your children in the hospital upon Dx with DKA crushed, ABSOLUTELY CRUSHED, me.  Know that they are hugely powerful and I could not even include half the pictures because there were so many….but I have them all in case needed. They WILL make a difference.

The stories you sent were so incredibly vivid and sad.  Your stories also give me the strength to continue and to spread the word.  Someone is in California today, Pennsylvania has a few people, North Carolina should be coming out of committee soon for a vote in their State Senate, I have another meeting with my State Representative contact as soon as I return from the AADE conference.  Other states are doing other things as well.  People are spreading the word.

I learn from each of you in so many areas.

My Child’s Cry for Change report will be a comprehensive and hugely powerful one and I need you help but again.  This is a simple survey of a few questions surrounding DKA and diagnosis.  I am learning that officials are VERY INTERESTED in the financial impact of these such things.  Cost of hospital stays, loss work days, Medicaid, Military, these are hugely powerful in presentations.

Please click this DKA SURVEY and answer the few questions if your child was diagnosed with T1 while in DKA within the last 10 years in the United States.   I need a lot of answers on this to be published and shared.  Even if you emailed me information recently, please take this survey  (and THANK YOU because it was those emails that led to this survey being created).

I also want you to know in advance that the last question of the survey is asking for your email.  The reason for that is simple; if these results show what I think they will show, opposition is going to challenge the validity of the survey.  You can submit the survey without the email but it will help add validity to it…..OF COURSE KNOW THAT NO ONE GETS ANY OF YOUR INFORMATION UNTIL WE SPEAK FIRST, IF THE SURVEY EVEN NEEDS VALIDATION.  Again, the survey CAN BE SUBMITTED WITHOUT an email if you so desire.

Please take the time to answer this short survey and PLEASE SHARE, NOT JUST ON YOU FB PAGES, BUT IT IN ALL OF YOUR CONTACT GROUPS THAT ARE VERY ‘STATE CENTERED’ (THIS is VERY important)Support groups, organization chapters, hospitals, this information will be extremely crucial to our efforts TO GATHER THIS VERY IMPORTANT DATA.   So please share it today.

This information will allow us the tools to make the points we need and it is VERY important that we have date from EVERY STATE.

Thanks again for your help.  We can only defeat this unnecessary situation that has caused so much grief if we continue together.  Over the years I have promised many that we would try to turn this paradigm and recently I made THAT SAME promise to Reegan’s Family and Kycie’s Family.  Let’s GET THIS DONE.  Thank you!

SO again, please click this DKA SURVEY if it applies to you and share everywhere so we can capture as much data as possible.

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

I’m Sorry……….I just had NOTHING Else Inside Me Today.

IN MEMORYI have to tell you all; as those who share this journey with me.  I just could not write anything else today.  These three little faces have kept me up all night.  I understand how ALL OF THIS works.  I have been at this a long, long time with two kids living with diabetes.  But it just made no sense for me to write anything else today.  WE WILL DO something about this….we will continue what we started.

Forgive me for just not writing about something else today……it just was not in me.

IN MEMORY….WITH LOVE; REEGAN, KYCIE, DAVID
ALL THREE, FROM TYPE 1 DIABETES THAT WENT UNDIAGNOSED.
NO ONE’S FAULT……..IS NOW EVERYONE’S RESPONSIBILITY…….TO MAKE SURE IT NEVER HAPPENS AGAIN.  HOW MANY MORE DO WE NOT KNOW ABOUT?
Reegan's RuleKycie

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

Little Kycie Changed the World. Period.

KycieAs most of you know by now, Little Kycie has lost her battle.  In a statement released by her family:
Her mission on this earth was complete.  We have found inspiration and strength from her courage.  We are thankful for the last 5 months that she was able to be home with her family and at the same time change the world.—The Terry Family.

I was in my hotel room when I heard.  I cried.  You may have cried also.  I know in all my heart and soul that Kycie, Little Reegan, and others will change this world—-our world.  They have changed it already.  They have saved lives already.  They will continue to do so.

I have just a few thoughts today, but mostly I would ask that you hold the Terry family up in prayers; they need our prayers right now.

First and foremost, our deepest condolences to a family that has acted with the most amount of grace, respect, and in manner that has captured all of our hearts.  Their grief now must be insurmountable.

There is much more I want to say and will say……..but I will not do it today.  This week is for prayers, thoughts, and holding up a family that has meant so much to all of us and who have inspired all of us beyond measure.

As I read the posts over the last two days, I wanted to share something that Kycie’s Dad shared with me while they were going through everything that they were going through.  He wanted Kycie’s story told but it was very clear that they wanted her story to be uplifting and educational without pointing blame.  We need to give their family the respect of acting as they have wished.

Action?  There will be plenty of time for action but I wanted to share what Josh shared with me a little while back.   They have opened their story for us to watch unfold.  They have shared their hearts.  Let’s remember what thy have asked of us as well as we all move forward to try to change in honor and memory of the Reegans and Kycies of this world

Within the last few weeks, I was asked and accepted, being the Keynote speaker at the National Association of School Nurses in Philadelphia.  I was discussing A Child’s Cry for Change (addressing the very issue of making sure a T1 diagnosis is not missed).  I stated to the audience, telling Reegan’s and Kycie’s stories and so many like them with Josh’s request in my mind, that this is not anyone’s fault but it has become everyone’s responsibility to change it to make sure that it doesn’t happen again.  The school nurses agreed.

The second thing I want to share with you today is about Deborah.  Deborah lives in Pennsylvania and she is meeting with her Elected Representative today.  She is meeting to tell her story today, and she will also tell Kycie’s story and Reegan’s story as well……..to, hopefully, make much needed changes.

We will talk much more about this up-coming but I felt compelled to share a few thoughts today.  May Kycie’s family find some sort of peace as they learn to cope with the journey ahead of them.  May we learn and accept what we each must do individually to move this process forward.  May we each hug our own children just a little tighter today.

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