Tried CGM? Pump?…and Went Off…..YOU FAILED!!!!!……..Hmmmmm Really?

failureI have a friend; let’s call her K.  K has a son, let’s call him Z.  I have known K for a very long time and she was an incredible actress.  I thought nothing could ever surpass her talent, but it did, it was K’s incredible and wonderful heart.  She is an incredible mom and her family has become her life.  It’s not surprising in the least.

Recently K share a story about her son who was on a football team.  Z decided that playing football was not for him.  Despite the uniform, the money laid out, and the time invested, once Z stated and meant that he wanted out; K allowed him to get out.  She applauded her son for letting her know how he felt and she backed his decision.  Z no longer plays football.

Now to some this may seem a very easy choice.  But I also know parents who kept their child involved in things that the child absolutely hated.  “I need to teach them that they cannot quit something once they commit.”  Is their thought process.  This is a very fine line to walk and the discussion relates directly to our diabetes world.

Laying out money for an insulin pump and/or a CGM is a big investment in both time and money.  At what point are we doing what is best for our child and what point are we absolutely torturing our child?  Now it’s understood that our children may absolutely HATE checking blood sugar and taking insulin and of course we cannot ever stop that process no matter what, but………when it comes to the devices that our children wear, when is the decision a must; and when is it a cooperative decision with our children?

A tough line to draw in the sand….yes?

Okay.  So the decision has been made.  You are approved and you receive the device, your child wears it.  Tries it.  And after a given time………THEY ABSOLUTELY HATE IT.  Hate IT!!!!!!

What do you do?

IN actuality, I’m not asking THAT question.  That’s for you to conclude in your house.  My point is for those who come to the decision to remove the device and try managing without it.  It’s crucial that should/when that decision be made that neither you and especially your child, are ever made to feel as though you failed, and even more so, that your child failed.  I’m a HUGE FAN of both the insulin pump and the CGM.  But it’s easy to be a fan when I do not have to wear either/both 24/7.

My dear, late, friend Dr. Richard Rubin’s voice is very loud and clear in my head in these instances.  “It’s about choices.”  Discuss the choices ahead for you and your child.  If they are absolutely against it, forcing them could have an adverse impact for a long time.  Be careful.  I’m not going to even attempt giving you a formula for what works and what does not in these instances because it’s just so different with each person/family.  I am going to say that people lived very long lives without, and before, the addition of these incredible tools.

Not using one, or going on one and going off one, is not the sign of failing and do not let anyone tell you otherwise.  How you handle this situation will set the framework for the possibility of using a device in the future.  People, our kids too, can change their mind.  Allowing them do so, for or against, is a very important part of their management.  The only non-negotiable (outside of checking and taking insulin of course–and even at that, my friend Joe S. and 50 years with diabetes states that a ‘vacation’ to some days is worthy to do very carefully—-ask Joe about how to do that!!!!) was the wearing of their ‘alert’ bracelet or necklace.

Everything else became a choice.

For the most part we came to a mutual decision and even when Kaitlyn was pretty young, it went that way as well.  Easy?  Nope.  So the take-away here is defining what a failure IS NOT.  It’s not about deciding against something.  Just as K’s son, Z, made the choice that football was not for him.  Not a life and death decision surely, but how K let this play out was very important and a lesson to be learned.  It was handled perfectly.

Failure is staying in something that is just wrong.  How you define that is up to you and/or your child.  Think about it.

I am a diabetes dad.

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

 

Insulin Pump? CGM? One Choice……What Do You Choose? A Needed Dialogue.

pumpsSo, say you are speaking to a newly diagnosed parent.  They are slowly coming around to understanding this new thing called diabetes and the doctor starts to inform them that it’s time to start thinking of having their child consider an insulin pump.  The conversation and the plans begin.

But is that an error?

Well not really an error, but let’s just say we have a choice of one because you do not want to experience your child being on two different devices from the get-go; you have a choice of one.  Is the insulin pump the choice?  Or do you go with a continuous glucose monitor (CGM)? Conventional wisdom seems to be that ‘the pump’ is the way most practices tend to lean and I’m just not so sure anymore that the insulin pump is my first choice anymore; and I want to tell you why?

Very quickly; the insulin pump has insulin entering your body 24/7 and before each meal you dose more to cover the food about to be eaten.  The CGM is a device worn that checks blood sugar continuously and blood sugar readings are constant, and also if one is trending high and/or low the device informs of that as well.

To be clear—-they are both incredible marvels of research and development and given the choice, I think anyone would/should be wearing both.  Because I believe knowledge is good and the more knowledge in front of you, the better care in making decisions.  I also do not have diabetes and I have never worn either device for any length of time over 5 days; so the decision to wear both, one, or none; is up to each individual/family.  I want to be clear about this from the get-go.

But I also believe in dialogue for that is how we all learn.  So for the sake of this discussion, the choice is that your child will not hear of wearing two devices; the choice is one—–which one is the choice?  I get that if your child is old enough you will speak to them and discuss it, and a decision will be made.  But is there a choice of one device over another?  Yes, it is everyone’s individual choice; but what do you choose and why?  I would REALLY love input from adults living with T1D, as well as parents.

But before I tell you why to my reasons, I want you to know that I want you chime-in on this because it is a very important issue and decision.  I’m not saying I’m right, and I want to present all thoughts because newly diagnosed families will see this and I want them to see both sides of the discussion.   But you cannot just ‘chime in’ with just a choice, kindly give the why as well.

If I was back at the beginning (when Kaitlyn was diagnosed; CGM was barely a dream and pumps were really in their infancy on general use—-the take-away here is also that the development and research in the diabetes world is moving faster than you think, although never fast enough) and the choice was only one, I would choose a CGM.  I say that based on a few observations.  With one child choosing MDI (multiple daily injections) and one child on an insulin pump; I have the luxury (THAT is not the right word here) of observing both means of insulin delivery.

When done correctly, both seem to work with people very well.  They adjust and they make both means of delivering insulin work, and work well.  The ‘pain’ of shots with the ‘pens’ is so much less than it used to be.  The decision of both is based on the level of glucose.  No adjustments can/should be made without knowing one’s blood glucose level.  If you were able to know what your blood sugar was, not only at a given-moment-in-time, but also knowing which direction one was ‘trending’ in a certain direction; you can make choices to avoid swings.  If you can avoid swings, you can also avoid(lessen) those horrible feelings of being both very high or being very low.

Getting the ‘insulin in’ is crucial, but having a window of seeing blood glucose is worth its weight in gold.  It is ‘those numbers’ of which everything you do is based, so it just makes sense to me that the clearer that picture is, the better the choice of ‘what to do next’ can be answered?

So given that I must make a choice, I’m wearing a CGM.   But that’s me.  What do you say?  Kindly post your answers as a reply to this article so everyone can share in reading the discussion.
I am a diabetes dad.

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

 

This Man Saved Your (Your Child’s) Life…..What Do You Know About Him?

BantingNovember 14th, as World Diabetes Day, was not a random day.  It’s the birthday of Dr. Frederick Banting.  Dr. Banting was the lead scientist in the discovery of Insulin in 1921.  The amount of lives that have been saved since that tome could probably never be counted.  There is a movie floating around out there, ‘Glory Enough for All”.  It was a TV movie in 1988 and if you go to you tube you can see many segments of the film which is a scenario surrounding Banting and Best’s work.  With Doctor, or Sir, Frederick Banting’s birthday just two days away……I thought I would give you some facts about the man who saved so many…..facts that you may or may not know.
>He is Canadian and was born in Ontario.
>He was married twice and had one son, William (First one lasted 8 years—ended in divorce)
>He was actually killed in an air disaster on February 21—-he was only 49.
>He was a painter
>In 1923 the Canadian Parliament granted him a Life Annuity of $7,500 (according to dollar times.com that would be worth 103,424.11in today’s terms).
>He served in both WWI and WWII
>In 1923 he was elected to the Banting and Best Medical Chair (and here is what I love about this); which was endowed by the Legislature of the Province of Ontario.
>He was an M.D. and also a Lecturer in Pharmacology
>Best, with whom Banting did his work was a medical student at the time and, of course, would become Dr. Charles Best.
>interesting enough, the Nobel Prize in Physiology or Medicine he won was shared with J.J.R. Macleod who gave Banting the facilities for his work.  Best received little recognition compared to these two but IT IS stated Dr. Banting shared his money from the award.
>He was Knighted in 1934

So now, perhaps—you know a little more of the man who saved my children, your children, and millions of others and is responsible for keeping them alive each day.

In his honor why not commit to doing just one thing on his birthday to help educate someone else about diabetes. Hang a poster, speak to someone,  and/or do something that spreads the word about diabetes education.  Education was a big part of
Dr. Banting’s life. Sharing education is the least we can do to pay homage to a man who has done so much for us, like saving the life of our loved ones……….don’t you think?

Happy Birthday Dr. Banting…………………………………….and THANK YOU!!!!

I am a diabetes dad.

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

 

 

 

There Was a ‘Back Then’, Before……..Who Would Live Like That????????

Back in timeBefore.

Heavens; what did we do ‘before’?

When I was at dLife, Richard found his way into our forums and chats and once I became a regular in the online community Richard would always ‘pop in’ here and there adding his golden nuggets of incredible information.  You see Richard has been living with diabetes for 67 years.  That’s right, 67!

This week, while at the Children with DIabetes Friends for Life Conference he had a ‘first timers’ ribbon on.  Now being in his seventies, the man still looks to educate himself and be part of the diabetes community; doing something for the first time after having diabetes for 67 years.  If that doesn’t humble you, nothing will.

After meeting Richard, I was thinking on the plane ride home from Orlando; what it must have been like living with diabetes when Richard was a young boy.

I know all of the changes that have occurred since Kaitlyn was diagnosed 21 years ago and there have been so many more since Richard was diagnosed during the 1940s.  It makes me wonder what in heaven’s name we all did before……..before……..SO MUCH!

Imagine our world without devices like pumps, fast-reading glucometers, small needles, CGMs; Imagine our world without CWD, JDRF, DRI, The Diabetes Advocates, The Diabetes Hands Foundation, and so many other areas; Imagine our world without Twitter, Facebook, Instagram, and Pinterest; Imagine our world not connected and not being able to be with each other in the many ways available to us.

Imagine.

We now live in an instantaneous world which readily is available to supply and share information.  Our meters are the fastest they have ever been, and there is even discussions of things like the Bionic Pancreas and the BioHub; words that did not even exist 5 years ago, much less sixty-seven.

The world is forever changing and changing at a pace that on one hand does not seem fast enough but in another; faster than anyone could ever imagine.

When people like Richard were testing urine in a test tube 40 years ago, what would they have said when told that someday you will have something that will dispense insulin automatically?

We are now living in the fastest world of ‘now’ becoming ‘before’ than any other time in our history.  Just a shame that it is all not fast enough……isn’t it?

I am a diabetes dad.

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

Why is November 14th Such……or Some Things You Might Not Know About Sir Frederick.

Happy Birthday Fred.  Yes it is November 14th, the birthday of Sir Frederick Banting, one of the major forces in the discovery of insulin.

Thank you Fred for saving our children’s lives.  Were it not for you, we would REALLY have a problem. 
Here are some items you may not know about Sir Frederick Banting that you may find interesting. 

He received the Nobel Prize in 1923 and was the youngest to ever receive the award in physiology/medicine.

He received the award in his 33rd year of life where he dedicated his life’s work to perfecting insulin to be distributed to the masses.  (Thank you for that too Fred!)

He was married twice and had one child.

He loved to paint.

He was knighted in 1934.

He died in his 50th year on February 21, 1941, as a result of injuries received in a plane crash while in route to test aviation equipment.  He worked with the Royal Canadian Air Force in testing equipment that would help pilots at high altitudes.

He was nominated as one of the top 10 Canadians who ever lived by a poll run by the Canadian Broadcast Corporation.

So I thought on this day, Diabetes Awareness Day that I would give you a little inside information on the man who saved the lives of our kids and all those who have diabetes. Thank you very much Dr. Banting for all you have done.  You have saved millions of lives…….including my two children.

The picture above is well-known to Canadians and sits in Sir Frederick Banting Square in Ontario, Canada.  It is the Flame of Hope, which was lit as a tribute to not only Frederick Banting but to all those who lost their lives to diabetes.    It would seem that those who worked to preserve his name also knew that in as much as insulin is probably one of the greatest life saving medical advances ever discovered, it is still not a cure. 

The wording on the plaque includes these words: “…..This flame will burn continuously and only be extinguished when it can be declared that a cure for diabetes has been found…..”

Amen!   Thanks Dr. Banting.

I am a diabetesdad. 

P.S.  Hear a message from Dr. Camillo Ricordi of the DRI for this special day.  Click here.

 

Information from Flame of Hope Committee, Wikipedia, Nobel Prize Foundation, Biography.com

 

Tomorrow is…………Yeah, so What?

Tomorrow is Diabetes Awareness Day; November 14th, the birthday of Frederick Banting one of the few credited with the discovery of insulin.  At the time, the headlines stated insulin was a cure.  It wasn’t; still isn’t.   But when one has nothing, it surely was a great step in saving lives; still does. 

November 14th, tomorrow, is by no means a holiday to me.  When I was a child and Mother’s Day rolled around I would say to my mom, “When is Child’s Day?”   You all know the answer to question as I am sure every mom has the same answer; (all together now) “Every day is Child’s Day.” 

That is somewhat how I feel about diabetes.  I do not need a specific day to be reminded about diabetes.  I do not need to see ‘something special’ done on the fourteenth of November each year.  We, as a community need to continue rowing together demanding the best from the companies and the organizations we support.   We need to continue to work together to make sure ‘the media’ gets right and we see diabetes painted in the light according to the specific types and what that represents. 

Because when it comes right down to it, in my life, November the fourteenth is the same as every other day.  It will remain like every other day until there is a cure; 100% every day.  How about you? 

What have you done today to try to make a difference in the world of diabetes; or in the life of your child with diabetes above and beyond daily management?  I might be for starting something on this date if never done before, but when it comes time for ‘doing something’ we better be doing that every day of the year or we will never move the needle (pun intended) when it comes to diabetes care and a cure. 

I know, that management in itself is much to ask isn’t it?   But we all need to “not do nothing”—-if our child deals with diabetes 24/7/365—-why are we not doing more?  It will not go away until we all work diligently to that end.  Cure, better management tools, and getting involved–never be satisfied with where you are at.  EVER.  In it to end it…..need help to get involved, just ask me–I have plenty of ideas.  

Each soldier has to take care of their own well-being, but when together they become an ever forward moving army ready to do battle.  Nothing less can be expected by anyone else who ‘has skin in the game’. 

Let’s work to making November 14th about a week before Thanksgiving and nothing more. 

The diabetes battle is every day.   Get involved today. 

I’m a diabetesdad.

Diabetes Awareness Month—How About Something Different this Year….Yes?.

November is Diabetes Awareness month thus deemed so by the American Diabetes Association a long time ago and followed by the world.  November 14th is Diabetes Awareness Day–in honor of Frederick Banting who is the youngest Nobel laureate in the area of Physiology/Medicine for his discovery of insulin (he did not do it alone but that is a different story for a different time).

Over the years I have watched as; the blue circle struggles to gain traction as an international symbol of diabetes; various media attempts to capitalize on this time with advertising supplements about diabetes (am I the only one who thinks that EVERY newspaper who has a diabetes supplement during this month should donate SOMETHING to a diabetes cause?); event upon event attempting to educate about diabetes; and so much more?  My question is; “How’s that all going?”

There are still miscommunications and misrepresentations across the board when it comes to diabetes and it seems no matter how hard we all try; each November comes and goes…..and here we are again.  This should not be during one month a year, it should be all year round.  The diabetes advocates try very hard to do this and I am happy they allow me to be part.

I am going to do something different this November, diabetes awareness month.  I’m not going to try to change the world, I’ll leave that to better minds than me.  I’m doing something very simple.  Very, Very simple.

Each day of diabetes awareness month I’m going to send a note or an email to someone who has helped along this pathway; this journey.  Not a blanket thank you across the board…just one person each and every day will get a note or an email that just says, “Hey, thanks.  You made a difference in our lives battling diabetes.”

Want to join me?  It’s not going to be a huge blue circle of umbrellas in central park with press releases, hype, and do this or do that………just a thank you.  I might even use blue paper.

I’m a Diabetesdad.

PORKED!–Pig Insulin, Pig Islets, Pigskin, & a Pig Roast—A VERY PIGGY DAY!

Michael Otten (far right) with Vinny, Robert (and Gigi) were up bright and early organizing their PIG ROAST 2012 to benefit the Diabetes Research Institute and the Children with Diabetes Foundation.

After I spoke with him this morning I had this thought of the irony of an event to end diabetes and the connections.

Many of you may not know this but years ago insulin was made from pork.  We certainly have come a long way since we had to give Kaitlyn those shots.  One of the biggest challenges with curing diabetes is having enough islets cells when that procedure is perfected for our kids and a solution being touted right now is purified porcine (pork) islets.  Michael and I are huge Jets fans (hence the pigskin) and today over 200 people will gather throughout the day at The Otten’s annual pig roast.

Now there are a zillion different fund-raising events through out the United States but I have to admit, what Michael, Gigi, and family and friends pull off here is truly one of the truly unique events out there. 

A PIG ROAST.  Really?

A full brick coal-pit and a roasting pig and more food and drink than you will ever see in one place at one time.   People all through the United States give so generously to so many different diabetes organizations.  The volunteers.  They amaze me with each and every event I am fortunate to attend.

Toady at a Pig Roast on Long Island–I will toast to all those who ‘don’t do nothing’…..to benfit those who live with diabetes everyday; to thank them.

Toast to a cure…..and there is nothing piggy in wishing for that, is there?

I am a Diabetesdad.