Wednesday, July 4, 2012

What is it like ...

To be the father of 2 T1 diabetics?

Today we will have the interview of the Vice President of the Diabetes Research Institute and the father of 2 type 1 diabetic kids.

The Diabetes Research Institute (DRI) is the largest and most comprehensive diabetes research center dedicated to curing diabetes, the DRI is aggressively working to shrink the timeline toward the discovery of a biological cure for this disease. Their multidisciplinary teams of scientists, together with international collaborators, are bridging cell-based therapies with emerging technologies to restore insulin production in patients with diabetes.

So Tom was nice enough to contribute to my multi-segment blog piece ... We asked and he answered so here we go

Q: Your First Name:
A: Tom although many know me as Diabetesdad

Q: How long have your children been a Type 1 Diabetic?
A: Kaitlyn was diagnosed September 26 1992 at age 2; Rob was diagnosed on March 20th, 2009

Q:  How old are your children?
A: TJ my oldest is 25 (no diabetes); Kaitlyn is 22; Rob is 16

Q: For the management of your children's Type 1 Diabetes are they on an insulin pump (If on pump which one) or multiple daily injections?
A: Animas Pump

Q: What made you choose this method for management?
A: Choices have been up to them (mostly) since a very early age.  We would leave literature and websites and they would choose what is right for them after they ‘did the homework’ on what they felt would best fit their needs.

Q: How confident are you with managing your child’s diabetes?
A: Again, this was a hard lesson for us to learn but it is not our diabetes.  It surely has an impact on the entire family but we have learned that the younger (and quicker) they understood this disease and took on the responsibility the better they would be.  Kaitlyn started giving herself shots at age six.  Now when we need to manage their diabetes because she was too young, we educated ourselves as much as we could.  But as important as it was/is for us to have the knowledge it is exponentially more important for them to have the knowledge and to understand what THEY have to do to take care of diabetes on a daily basis. We have striven for this from the first day each of them were diagnosed.

Q: What does a "typical" day look like in your household in regards to diabetes management?
A: Our day is not much different than a typical household anywhere else in America.  Kids going to school, working, are seeing friends, much activity in and around our house.  What is different are the two shelves in the refrigerator full of diabetes supplies and the 20% of closet space filled with diabetes supplies.  If we made diabetes the central point of concentration than it would be just that.  We have worked diligently to keep the lives of our kids as normal as the next.  There are many discussions with the schools and questions trying to help Rob and Kaitlyn stay on top of diabetes but I think we have lived our lives with a mantra I learned a long time ago at CWD; “Kids with diabetes are still kids”.   I do not want it to appear that we are cavalier in our approach to diabetes; we are laser-focused on what must get done.  Over the years there have been more bathroom stops on long trips, episodes of hypo/hyper glycemia, diabetes supplies in school and in cars and making sure blood sugar levels are checked before meals and when feeling ‘different’ at a period of time.  The major difference with any house that has a person with diabetes is that you are on constant ‘watch’ for signs that relay there could be a potential problem.  Signs in the middle of the night that there is a problem, I think the anxiety any one of us feel is not the day-to-day management—it is the fear of what can happen when either our children with diabetes or ourselves stop paying attention for just that one second that diabetes will take control and something will happen.

Q: What does a "typical" day’s diet look like?
A: Much carb counting.  Whole wheat now instead of just flour enriched foods, skim milk, much fruit and vegetables in the house, We strive for more balanced.  It was different before they wore insulin pumps but now pretty much like any other family.

Q: Besides a cure what 1 thing would you like to see researchers working towards and why?
A: This question is asked a lot to me and people always say ‘besides a cure’.  And I think the world has said “Yea-yea we want a cure” and it has been said so much that we are allowing ourselves the idea that it is okay to work less on a cure and accept less than that and substitute for better management.  I believe the artificial pancreas is a prime example of this point.   I want a cure for my children.  I do not want this to ever stop and should be the prime focus that families with loved ones with diabetes and people with diabetes should demand to happen.  Back to my point about the artificial pancreas (AP):  The artificial pancreas would be a wonderful tool should it ever happen but it is not ‘really the be all and end all’ that parents and people with diabetes want and the perception of that ‘want’, in my opinion, is being twisted for people to believe it is a cure.  It is not and is not a substitute for it.  I believe it is playing on the most desired fear in people with diabetes and more so with parents of children with diabetes.  What is that fear?  Straight out and on the line; we are afraid our children will die in the middle of the night from a glycemic reaction.  The AP is being portrayed as the panacea to this fear and certainly there is an aspect to the AP that would solve the problem.  What we want, I believe, is so much simpler than this entire AP package that is being sold to us in the media and elsewhere.  I do not want to wake up to a dead child in their room.  There I said it and it is the truth.  Solve this fear and I will be okay until a cure is found. Create a means/mechanism for a nocturnal(nighttime)turn-off of the pump via something that can detect an upcoming low blood sugar that will also send off a loud alarm at the same time to alert others and I think people would be okay with that device.  This seems so much easier to engineer and create than what is being done as a full package with the AP, in my opinion, and could be done in a much quicker time frame.  We want this device and we want it now.   The AP is being portrayed/sold as the most incredible new device and surprisingly many are calling it a cure.  That’s crazy.  And with that; even less money is being directed to what we DO want in the ultimate scenario and that is an actual cure or something more biological.  The AP is no more a cure than insulin was and many touted insulin as a cure when it was discovered.  They are fabulous tools to help manage diabetes better.  The marketing efforts of the AP as ‘the’ answer is such an injustice to those so concerned with diabetes management that we will latch on to anything that is being sold that will prevent nocturnal death.  First we were told it was 3-5 years away and that was two years ago.  Yes, two; and now being said is that it is unsure when it will be and much will depend on how fast the FDA approves different aspects of this.  Really?  I mean really?  The FDA did not ‘just come around’ it has been here and why was not that factor considered when parents were told 3-5 year when these efforts started?  The story also changed from the onset and we are now being told it will come in stages.  Every inch of success is rolled out as huge advancement to perpetuate a very false hope on how close it actually is.  Do I want an AP---I would love it; two times more than most.  What I do not want is this “while we work on a cure” disclaimer put out by many on something we really do not know is any closer than a biological cure.  And cutting funds to curing is not helping anyone at all.  Here is a question to ask?  Every parent and every person with diabetes has said at one time or another; “if I could only have one more day without diabetes”, correct?  And yet there are so many that have lived anywhere from two to ten years without taking insulin, had A1Cs below 6, and had almost perfect blood sugar levels, and certainly were not worrying about dying in the middle of the night.  Why is not every possible resource given to correct what is not perfect about this process to make it viable and work in those with diabetes?  It just makes no sense to me.  In the meantime, give me a device that will turn off and wake me, the parent.  THAT could be done much quicker I would imagine.  Help me to know my child will not die in the middle of the night while more efforts are given to cure it. 

Q: What tips or advice would you give to other parents of newly diagnosed Type 1 Diabetic children/teens?
A: Great question.  When your child is diagnosed, information will come your way from a million different sources simultaneously.  Thank people for giving you the papers, the websites, the phone numbers of ‘you need to speak to……” and start a pile for information and a list of websites and phone numbers and put them off to the side for the first 30 days.  Just concentrate on your medical team and your child for the first 30 days.  Learn just what they are teaching you and be the best you can at ONLY what they are teaching you.  Master the first 30 days on what is being taught and you will be off to a good start.  If you run to the website at diagnosis, your head will explode with the information---you cannot possible process it all.  Just you, your medical team, and your child for the first 30 days.  And perhaps if there is just one person who has been through what you have been through---you CAN search for this person to talk to.  Everything else can wait.

Q: What would you like to see more of out of the Diabetes Online Community?
A: Unity on taking a stance.  This is tough as everyone has an opinion (and that is okay and a good thing) but clearly the world at large (outside the DOC) needs to do a better job differentiating T1 and T2 in so many areas---this might be a good place to begin focus.

Q: What is your favorite thing about the Diabetes Online Community and why?
A: It is the post incredible and powerful resource in existence for anyone living with diabetes.

Q: What is your least favorite thing about the Diabetes Online Community and why?
A: One’s opinion is not wrong; it is merely different than yours.  This needs to be respected more.  And those of us who write MUST understand that we are not medical experts and should not ever try to portray that experience alone trumps professional advice and that there is a healthy balance between the two that should be sought.

Q: What 1 thing would you like to see discussed in the Diabetes Online Community that is not discussed enough?
A: The psyche aspects of those with diabetes and where to go to get help. Diabulemia was an example of a ‘taboo’ aspect that some undertook----that was hugely helpful.  As PWDs and parents what is not talked about that should be. Diabetes and alcohol and teens, thoughts of suicide, etc etc.

I hope you all enjoyed reading Tom's thoughts and keep on the look out for more thoughts/views soon from T1D's, Spouses of T1D's, and much more.

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