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’.

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’.

Walking Thin Ice Here…….Are Dads/Spouses Doing More In Day-to-day Management??????

Thin iceNow I know I’m absolutely skating on thin ice here at the deepest part of the pond, but I found myself asking a question based on recent observations.  It seems that with the recent and ever-growing use of technologies to manage day-to-day diabetes; dads/spouses seem to be playing more of an active role than before…..has anyone else found that of late?

Now before I get beat up; let me say that I also know that there are many cases that dads do most of the care and also many who ‘chip-in’ equally.  THAT is not to whom I am referring.

But I also know there have been times that we dads…..well……don’t/didn’t do as much as we should.

Now I know there are still many dynamic-hurdles needed to be jumped, but I have noticed a lessening of posts, comments, and meetings of how little the spouses are doing…….and those of us who have been around a few years know that there used to be quite a bit; methinks.

So I had two thoughts.  And remember that these are just ‘over-all’ observations and just that–observations.  Is it that dads are doing a little more helping with the care or is it that moms have better things to do than ask advice of one not willing to help?…….or is it that my observations are completely off the mark (which surely could be the case as well).

I asked a few people privately and they informed me that, indeed, recent technology has engaged some of the husbands/spouses more…..so I thought I would ask.

I’m asking your opinion more of an observer of the conversations out there rather than just an individual reaction.  Anyone have any thoughts on this subject as an overall observation?  Inquiring minds want to know………okay……I want to know.  🙂

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

A Mom Needs Our Help!!!!!!

epilepsyI have always stated that the number one service I could ever provide to this community is connection…..today is such a day.

A mom has a child with diabetes.  Recently epilepsy has been diagnosed as well.  As you could imagine there is much to know on mixing various meds; plus the fear of the unknown; plus, possibly, just speaking to someone else who is not ‘guessing’ at all of this can be a huge help.

If you have a child with epilepsy and T1 Diabetes and will allow me to share your email with her; kindly send to my email at tkarlya@drif.org.  In the subject line, write Epilepsy and Diabetes.  Include your name, and how old your child is and I will pass it along to the mom with whom I discussed.

We have all been through ‘stuff’ where having a kindred spirit surely helps.  Thank you in advance for your cooperation.  In this together, as I say.

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’.

Four-Wheel Drive will Do Little on Ice—Like Diabetes Technology—It’s How You Drive!!!!

car on iceI have often seen four-wheel drive vehicles in accidents during times of cold weather and ice in the New York area where I live.  The reason is simple.  In sand and snow a four-wheel drive vehicle is ions ahead of the crowd but when it comes to ice, it will matter little when you start to slide.

There is a false sense of security to the driver who is unaware that ice is ice and it is dang slippery with whatever you are driving.  Not too unlike much of the technology we have today to manage diabetes.

No matter how good the technology is, or becomes, it will always only be as good as the person who is using these tools.    In as much as the AP, Bionic Pancreas, closed loop system all are in capturing our imagination of managing diabetes; it’s a false sense of security to ever thing that managing diabetes will be done ‘completely on its own’ with no help from ‘the driver’.

The same with the insulin pump and CGMs.  Nothing will manage diabetes for you better than YOU!  Do NOT MISUNDERSTAND me as I love technology and these tools all surely help us with exponential understanding to have better outcomes on the day-to-day management for our kids and all PWDs.  But it’s not uncommon to find those who start using these tools to also have their A1C rise because the user takes their eye off of their own responsibility when it comes to actually managing their diabetes.

The message is a simple one today.  Technology is great but at the end of the day it will always come down to how these great tools get used.  Never think it will be done for you……it won’t.  Food for thought.

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

If You Liked Frozen’s ‘DO You Want to Build a Snowman”……..You Will LOVE THIS!!!!!!!!!!

 

Olaf 1Do You Want to be My FFL? (pronounced Fif El).  It represents the acronym Friends for Life.  The video attached is something that anyone with diabetes can relate.  It was written by Sarah Loebner, a very special young lady.

The introduction read at Friends for Life Conference was as follows:
She—-was diagnosed with T1 diabetes at age 9 1/2 in 2002. Presently pursuing a career as a Physician’s Assistant and she is the pure genius behind what you are about to hear.
He—was diagnosed with T1 diabetes at age 11.  He was a finalist on American Idol’s 5th season but most kids in the room will recognize him from his reoccurring role on Disney’s Good Luck Charlie.
With special apologies to Disney, I present Sarah Loebner and Kevin Covais singing a special song with special words.  Listen closely to the words.

I share it with you (click the picture above) because the diabetes community needs to hear this, your kids need to hear this, I needed to hear this.  A FFL does not always have to happen at a conference, this conference; but in our so incredibly complex lives, we all need a FFL.

Nice job CWD allowing this song to be presented at the highlight of your conference.  Nice job Kevin and super nice job Sarah Loebner at creating something so special.
So share this with someone you know and love because when it comes to diabetes, some people are worth melting for.

Take THAT diabetes.

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