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’.

A Hell of a Captain, on a Hell of A Ship—-A Lesson for All of Us—-Even When Not at Sea!!!!

Double D and DanI love it when people are REALLY GOOD at something.  I like to watch and see how they do what they do.  I love to ask questions and find out how they became so good at what they do.  Over the years I have met some really cool people who are the best at what they do.  The phrase ‘natural talent’ surely makes up some of it, but it’s working at what you do until you fully understand every aspect of it, and THAT is what makes you the best.

My brother Stephen has, for the last two years in what we all hope will be an annual event, treated my older brother and I (along with our sons) a day-long fishing trip off of Montauk Point, Long Island.  My first love for fishing came when my childhood buddy Jimmy would take me with him when his dad and he went out.  Mr. R was completely at east and at home behind the wheel of his boat; and his very nature also defined a Captain.  Fondest of memories from my childhood for sure.

There are plenty of boats out in Montauk……PLENTY!   But my brother only uses one Captain on one Boat; and that is Captain Dan of the Double D Charter.  Stephen is out there a few times a year and has been for years.  Stephen, in his career, was also one of those people who were the best at what they did and his personality is such that demands the best.  When he finds something that works, he sticks with it.  Captain Dan and the Double D Charter is such a boat.  Last year’s trip, I enjoyed.  This year I wanted to not only enjoy but know more on why this Captain was so good.  I learned that last year was no fluke (pun intended), there is a reason my brother returns each time.

Captain Dan is by no means the biggest boat on the water and in fact 5-6 passengers is the maximum.  From the moment he heads into open waters and flips on his various machines of travel, sonar, fish-finders etc. etc., he is not just watching them, he is studying them.  On the screens, one color means one thing, another color means another.  But he knows what they all mean.  And while many boat Captains are busy chatting to each other over the radios, Captain Dan is watching, and searching.

“Drop the lines” he demands and his first Mate, Chris is quick to the task.  He is over a spot and he points out to me on the screen that there are few there.  To me everything looks like antique ‘blips’ on an out-dated Nintendo Game, but THIS captain knows exactly what they mean.  He moves his boat at various speeds of slow-slower-speedup-slow and I’m thinking what he is doing cannot be good for the gears of the boat; but it was great for us.

“FISH ON” came the yell from the mate……and we were off to a GREAT DAY.  I’m not posting pictures of our fish because not everyone enjoys that kind of stuff and I understand.  But you can click this link and look at Captain Dan’s Double D Charter FB Page if you want to see some cool pictures and video of people fishing in Montauk.

“I’m actually the one fishing”, Captain Dan shares with me, “You guys pull them up for me, but I’m the one fishing”, as he continues observing his equipment and surveying the water looking for birds, ripples, and anything else that will hint for a good place to go. This attitude explains the absolute meticulous manner of the Merchant Marine Academy graduate and how seriously he takes everything to make sure his passengers have every opportunity to land dinner……..lots of dinners.  Why shop for dinner when you can catch your own….and boy did we.

I’m sure he has days that are not so good.  But his bad days are others’ dismal days and when others are having a good day, Captain Dan has GREAT Days.  Now why is DiabetesDad writing about a Fishing Captain? Simply put, let me ask you how much do you study the people who deal with your child.   How much do you work at what you do with your child.  Know who the ‘lucky ones are’?  Find out why, what they do, and how they got there.  You will learn much.

I have always stated, the harder one works, the luckier they are.  People say many times, “Oh, so-and-so is so lucky”.  As much as some luck enters the picture, no truly successful person relied on luck.  They worked at it, and they worked hard.

Whether it’s taking care of diabetes, or the Captain of a Fishing Boat in Montauk, Long Island….the best wins out.  And for the record; we caught the maximum number in Stripe Bass, and a ton of ‘keepers’ on Fluke and Black Sea Bass.  Great to fish with the best there is……….remember that……..and if ever in Montauk, look up Captain Dan and the Double D Charter…….tell him DiabetesDad sent you.

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

 

Is Dispensing Insulin, and Your Child’s Meals, Still a Race Anymore?

running with foodThere was a time we would give an insulin shot a little bit of time before my daughter ate.  The meal would be given and the insulin would impact the body ‘at the perfect time’ to counter the carbs she was about to eat.  Ideally.

Sometimes it was a race to the finish line (yes I know my picture used today does not depict the healthiest of foods but you try finding a food, with ‘running feet’ photo).

It also opened the door for mini-disasters.  I remember many, many stories about the battles that raged after a child took their insulin and what parents did to get their child to eat so they did not ‘bottom out’ (drop low).  Eat, sometimes, just about anything.   If the child was a finicky eater, those meals and doses of insulin became a battle ground of anxiety quite often.  Which was usually every meal.

In today’s world,  I don’t see, or hear of, these battle so much anymore.  Modern technology, perhaps; or even the fact that I don’t even have a teen-ager in my house anymore, much less an infant, that I just have not been in ‘that’ circle with that topic of conversation for a long time.

Is it still there?  Do you give your child insulin (shots, pump boluses etc) and do you rush to get food inside your child; or with the modern technology now existing, that’s just not a problem anymore?

As I write this, I have this visual in my head of readers saying to themselves, ‘….wow is he really out of touch;  what is he EVEN talking about?’ But when it comes to eating and dispensing insulin, please share your experiences with your child.   What have you learned?  What do you do?  When it comes to dispensing insulin and eating, what happens in your house?

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

 

Are You Helping YOUR Doc???….TV’s Sandra Oh and Jim Turner Help us Take a Look.

jim turner sandra ohWhen is the last time you took your child with diabetes to your doctor?  If, like most of us, it is usually 4 times a year;  are you helping your doctor, in any way, care for your child?  You should.

When discussing a visit to the Doctor’s office, and this may seem elementary, but you would be surprised how much waits for the day of/before the visit.  I’m not quite sure what we expect of our Doctor’s but there are a few thing to always remember.

First, remember, you are not the only patients.  Some practices have hundreds/thousands of patients and here you are, with 5 minutes with your Doctor and/or a diabetes educator.  DO NOT WASTE this time for you or your medical team.  Between visits, you should be writing questions you may have based on experiences over the last three months.

Keep a log.  When you see something or hear about something….jot it down.  A new technology, meter, device, procedure-in-care, and even rumors….write them down.  Shortly before your appointment, prioritize your questions.  You may not get to them all so pick the 3 biggest things you would like information about that pertains to your doctor’s advice.

The first thing is the care of your child.  Have your child’s blood test done 2-3 weeks before your appointment so your doctor is dealing with a present A1C and not one taken the week after last visit; 3 months prior.  Work this out with the office how to best achieve this outcome.

As I have stated before, one of the most creative geniuses in diabetes matters mixed with entertainment is Jim Turner.  Jim’s creative genius is evident here with his friend TV Superstar Sandra Oh in this video about seeing a doctor.  Click the dLife.

The video states clearly things you should do before you see your doctor.  It’s your 5 minutes, make the best of it.

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

Has Modern Technology Made ‘Diabetes Police’ Parents….uhm….Diabetes CIA? Want your Input?

cia badgeThere is a dilemma we face that could use the help of…….well……someone….perhaps you.  With ‘diabetes technology’ at an all time high (pun intended), there are increasing numbers of ways that we as parents can stay in touch with our children to keep an eye on their blood sugar via the cloud, cell phones etc etc to make sure they do not go too high, or too low.

When they are ‘under our roof’, that’s easy…..it’s our call.  As teenagers—they will balk at anything we say anyway….so this can be added to the mix.   They may get pissed at that, calling us the diabetes police…….but with this new technology….we could now be called…..Diabetes CIA.  But what about when they are sort of under our roof……but not really  under our roof?  Also but what about when they are in their dorms, or living alone in an apartment?  Would they not want the peace of mind knowing that someone ‘has their back’ when it comes to their blood sugar levels?

It’s certainly a two-way street.  Our kids do not want us to be calling them when they are just a little low and they do not want to be ‘mothered-to-eternity’, do they  (if saying ‘mothered’ offends you, feel free to interchange with ‘fathered’ or ‘parented’)?  As my dear friend, the great, late Richard Rubin stated, “it’s about balance….it’s about setting boundaries and respecting them.”

I cannot imagine that anyone WOULD NOT want a mechanism where someone could be watching for that ‘just-in-case’ situation.  But I also do not have T1 Diabetes and have not been listening to parents for 22 years either.  Many of the adults with T1 have shared many of their experiences on their blogs, not sure if I’ve seen THIS topic…..I would appeal to them to address this issue, and if anyone has already, please share the link.

Your parents, your spouse, your friends……who has your back?  I remember hearing over the years that many young adults have always feared that something drastic could happen during the night and they not wake up for it.  Okay……now there are ways to monitor that situation for, and with, you.  But how does that work; feeling ‘tethered’ to parents THAT MUCH MORE?????

What are the ground rules?  Where does one start?  How do we engage our children where they do not just ‘roll their eyes’ and tell us for the millionth time, “they got this.”
I know my kids ‘got this’, and I have been confident of that for the million times I have been told, but it’s the millionth-and-one time when they don’t answer that has me asking the question.

As new technology comes into our world, so do questions.  My two requests today…..if you are an adult with T1; are you utilizing something to share your blood sugars with someone else?  Who are you sharing it with?  If so, what is the understanding…..what have you agreed upon when they should step in and text, call, or do some sort of action-step?  Please share?

My second requests are for those parents where they have implemented this with their college kids and older teens in high school.   Share that information please.  We want to know blood sugars because we care…….but being part of the diabetes police….uhm….CIA…..won’t help anyone.  There has to be a medium line where we can help without burdening.  Kindly share your experiences.

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’.

There REALLY IS NOTHING good about diabetes………but……….

Nothing-Good-Can-Come-Of-This-TitleI honestly do not remember me ever saying ‘why us’ when Kaitlyn was diagnosed.  In fact I am sure that we did not say it when Rob was diagnosed either.  It’s how you look at things, isn’t it?

“Life” comes at us all the time.  It has a zillion-and-one things that are really cool that come and go many times without us even noticing.  But when life throws ‘stuff’ at us, well we have a choice.

What is positive about diabetes? Short answer: Nothing.  But if you firmly believe that nothing good can come out of this…….well you are wrong; but it will be your call.

I’m not a big fan of the phrase when life gives you lemons, you make lemonade.  Not a big fan of a window closing and a door opening either.  We have a few choices in life.  We can just float by or we can try to make things happen when life is shoveling it on pretty hefty.

I have heard it said how crappy diabetes is and that there is NOTHING good about it.  But I would challenge that statement and ask, “Okay, what did you do about it once it arrived?”  In addition to learning and managing our children as they grew up there were other choices to make.

It is my belief (key word–MY) that if you choose to somehow get involved in something, it could change how bad you may be feeling.  When I do not like something, I go after it full strength to figure out if I REALLY do not like something or do I not like what I perceive something to be.  When I ‘hear/read’ something; I react the same way.  I want to find out the truth, or it’s not acceptable to me.

It was unacceptable to me on September 26th, 1992 that we would be crushed under by a diagnosis of diabetes.  And I have said it before that we were, at times, on the brink of losing so much.  The dynamic of our family structure completely changed.  I get some people annoyed sometimes when I say if you do not control diabetes, it will surely control you.  But when I say that, it is with no reference to the management of blood sugars, it’s an attitude.  It’s how one reacts.  And I still firmly believe in that statement.

For us, the key answer was knowledge.  With knowledge came actions.  And with actions came the understanding that we CANNOT take on everything.  When someone writes to me, “Tom, we should look into…..”; my feeling is always the same.  “You’re right, we should…….go for it.”   But we should also not take on nothing either;  Just Don’t Do Nothing as I have said.

On this whole situation of missed diagnosis of T1 Diabetes; I state the following.  Those articles written by many of us reached over 100,000 people.  If you wrote how upset you were/are and how horrible you felt/feel about those families who lost their children, but did nothing to make sure it never happens again, even something as simple as printing a poster from GetDiabetesRight.org and hanging it in a visible spot in your community????—-if you DID NOTHING, you wasted your words.  Did you DO anything? Words without actions are dead.

The good news is, you can still do something about it.  But the choice is yours.  And in as much as diabetes really ‘stinkos’, I can also share with you that the people I have met since we have been involved, I would be totally lost without.  THEY DO NOT ‘stinko'; many of them are my lifeline and the fiber of my soul.

So in as much as there is nothing good about diabetes, there is plenty of good surrounding the actions one takes DEALING with diabetes.  I highly recommend it. You will meet some pretty incredible people doing pretty incredible things………and you will learn a thing or two (or a million) along the way.   Try it.  Do something.  What that is, is your call; but no one is coming to your door and knocking on it to ask.  Go out and find it.

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

Tired of the Undiagnosed T1 Entering DKA…….Roll Up Your Sleeves……Some Suggestions.

Roll up your sleeveThere certainly has been much activity surrounding DKA Awareness of late and that is a very good thing; the reason will always sting, but good that change could be coming.  If we are to make a dent in this awareness, work; a lot of work, needs to get done.  I have had conversations all weekend long and people are doing some pretty cool things

Tomorrow (hopefully) I will supply some in-depth info about some initiative’s that I have been working on with some immediate action steps that can be done in your community as well as some legislative action-steps, and if the info helps you, great; if not I, certainly wish you well as you do what you feel can to make a difference.

Some information we know already that may be of some help as you move forward.  In North Carolina, where there is pending legislation waiting to go to their State Senate floor for a vote, the proposed law states the following:

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, physicians 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

A few things: I share this with you because many have asked me about this law.  Reegan’s mom is the driving force behind this law and what she has accomplished is monumental.  the death of her daughter, by a missed diagnosis, has enrolled her into a club of which no one would ever ask to be in; but she has laid ‘it all out  there’ with determination, drive, and grace to make sure it NEVER happens again and she has started in her own state of North Carolina.

WHAT YOU NEED TO KNOW:  
Many have asked about the process of  how this law came into being.  It is important to understand that there have been many discussions/revisions during the process of this proposed bill.  From entering committee for discussion (if ANY BILL does NOT get out of Committee—it never reaches the floor for a vote) to being voted upon in legislature chambers.  There was consideration/dialogue about all sorts of mandatory testing, checking, and yes, even education.  But when it comes to stating something is mandatory (and in the instance of ‘checking/testing’ it means insurance companies/Medicaid would have to pay for it), the opposition to that type of legislation ‘came out of the woodwork’ (as they used to say).  You are certainly free to pursue this law but attempting to make anything mandatory and/or invasive is going to be met with STIFF resistance.
Passing legislation is also extremely labor intensive and takes a good deal of time.  I say that so you know, NOT TO discourage you—-new laws are also VERY POWERFUL.  Should we be successful in North Carolina, it will be the first bill of its kind.  It’s progress.

Should you be making an appointment with your state representative (any federal branch, US Congress/US Senate will  usually ‘kick you back’ to your state level—-FYI) I suggest you go in there with a menu of choices like Debbie Healy did in Pennsylvania.  If they think they can get a blood/urine test passed——-GO FOR IT.

Here is just a partial menu to consider:
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.

Ask your legislature what they think could/might/will work?

Another GREAT idea came from Leigh Szczur in Oregon who is looking into existing laws in her state regarding diabetes to see if it makes sense to ‘piggy-back’ on a law already on the books.  GREAT food for thought.

These are all fabulous ideas.  We will speak more about these efforts this week.  Whatever initiatives you are working on, and if you want me to relay it, I will gladly give you the space here.  A couple of stipulations.  It has to be an initiative, that could garner solid/real results.  I just do not have the time to investigate every initiative, do not just send me a link, send me info as well.  A petition as a stand alone, in actuality, does little.  If you have started one, and there are many, let me know how it is going, how you are getting signatures, how others can help beside ‘just pass it along’, or is that all you need?  What will you do with the petition when completed, send me an outline and pertinent links and I will try to find the space for you.  If you feel strongly about petitions, and have started one; just let us know HOW it will get something done; and I will gladly give you the space.

Sites and FB pages:  Same rule as above, if you merely add a link to my site, it usually will get removed if permission has not been given, this is just fair for everyone.  Many spammers and crawlers (products etc) will add links, so it’s a general rule. I need the content to stay ‘editorially clean’ as I receive no advertising dollars.  Also, if you have a closed FB page, I probably will not share your initiative unless it is highlighted for a specific group; Dads, People who lost a child, moms….etc.  PLEASE DO NOT misunderstand me, it’s YOUR CALL how you run your page and it’s just easier (for me) if wide-ranged initiatives are open for all.  For example, someone suggested a closed page last week and I could not see what it was about…..if I ‘put it out there’, I should know a little about the site and so should people who visit it…….make sense?  Again, it’s totally your call if it is ‘invite only’ and I have no issue with that whatsoever, but I cannot just ‘put it out there’ if I cannot see what it is about.

So email me at tkarlya@drif.org with a write-up on what you are doing and if my site can help at all in sharing where others can learn, I’m happy to share the word.  There truly is no need to reinvent the wheel……many initiatives offer great and powerful tools. www.getdiabetesright.org is just one of them.  All sorts of professionally made posters that you can download and share in right in your community.  Don’t be overwhelmed by ‘initiatives’.  If someone sees a poster posted in a Docs office or at the public library and they are educated and catch T1 before DKA when it looks like a virus or flu—-THAT IS HUGE and should NEVER be understated.

Education is education…..in the amount of time it takes legislation to pass, tens of thousands of posters could be hung in communities all around the world.  Think about it…..no initiative with ACTUAL IMPACT is TOO small.  One small meeting with the National Association of School Nurses has already resulted in programs that  have caught T1 DKA, when it was thought to be just a flu or virus……..how COOL IS THAT?????   “A lotta little makes a lot!!!!!”

We are presently working on a PSA and on reaching out with initiatives for medical groups (Pediatric, family physicians, school nurse ets.); I know that standards of care can be set by Medicare, the chief health officer of each state, and the Surgeon General of the United States—-want an initiative?….pick one and go for it.

So let me know how I can help?  And let others know what can be done?  There are SO MANY roadways we can all take…..pick one.  Again specific data that might be helpful is forth coming.  Please stay engaged.  This MUST BE FOUGHT on so many levels—pick the one that works for you.  Just ‘Don’t Do Nothing’.

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

 

 

 

 

Was Your Child DX via DKA???? Surely Could Use Your Help…..Need this Post Shared, Please.

DKA be sureTHIS 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’.