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Diabetes Camps / Social Network Questions

Discussion in 'Parents of Children with Type 1' started by Deleted member 15278, Nov 17, 2014.

  1. Junosmom

    Junosmom Approved members

    Joined:
    Oct 21, 2013
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    133
    Hi Chad,
    I am pleased that there are engineering students out there considering ways to help children and families dealing with T1D. Thank you.


    I’m happy that I learned that BG was something that really can’t me tamed and should not be focused on. To my defense, I had talked with a few teen diabetics and they told me they’d always send pictures of their high and low BG to their friends, which gave me my initial (bad) idea.

    Yes, well, we're human. It is hard not to crow or feel relief over a "good" number. Though BG number is really just an indicator of actions to be taken or lessons to be learned, we are also all aware of the target range and that staying in that range provides the best long term care and avoidance of complications. I'm sure those teens do, and that's fine! As others have stated, T1D is so very complicated because there are many variables, most of which you cannot see or know. It is like trying to solve a very complicated math problem with multiple variables and equations and not enough "knowns".


    I liked hearing about your children’s social life and experience at camp/school. I’m also happy that you included the pains and emotions that are felt when dealing with diabetes. It helps encourage me to do that much better on this project My son has this year attended both a one week stay away camp and a weekend family camp. He did not stay in touch with the other kids as he felt that they didn't have as much in common as his friendships based on interests rather than having a common disease. You see, I want to announce to the world how my son is a hero and what he has to experience to do a hard tae kwon do workout, what he worries about, that he is always aware...but he, he doesn't want anyone to know (he's 12 and an introvert). He considers "success" to be that he can do what he wants to do without anyone even noticing he has T1D. He has gotten a little better about testing and bolusing in public, but because of technology improvements (pump). He is very open with his close friends.

    He did enjoy the T1D family camp we attended because he like the activities and the snacks and food that were everywhere. And the food was good~

    I’m interested in exploring the suggestion that mamattorney had in regards to focusing more on diabetes lifestyle habits:

    At the bones of whatever I choose to pursue, I think I would like to influence the user’s diabetic lifestyle. I think by creating a routine, supplying data, giving suggestions/reminders, logging information, etc. could be useful and important to a diabetic's health. *Do you have any comments or suggestions?*

    Well, first, consider motivation: intrinsic versus external rewards. (See book "Punished by Rewards" by Kohn). For example, I want my children to love learning, to read, to explore because it has its own rewards. My children are/were homeschooled. All love to learn and read but not because I make them. It is how we live as a family.

    Diabetes management for older teens and adults can come from habits (if diagnosed when younger) because they understand the implications long term. For my 12 year old, he understands that he feels bad when he is either high or low, and that either can be very, very dangerous. That is enough to motivate him to act or think about his BG. Even then, he will sometimes, as adolescents do, become distracted and forget. So - that is an area of improvement for us. But, as for recording, analyzing, habits, well, that is my job as a parent - to help analyze, problem solve and decision making but I involve him in some of it, teaching him by doing. But not all of it. He is 12. I try to make his day as normal as possible. If we can go out into the world and no one knows he has T1D, he's a happy camper (no pun intended). As he ages, he is taking on more responsibility, but rewarding him for things out of his control (growth or sickness, for examples) well, I think you got the message. I did ask him and he said he wouldn't do any kind of game or online because he doesn't want anyone to know his BG.


    I want to focus on setting goals and rewarding those that achieve them. I want to create something that gives positive encouragement and support along the way to achieving those goals. I have talked to a few companies about the idea of supplying rewards or discounts to people that achieve health goals and they were very interested in supporting.
    Again, you are talking about external rewards. As a non-T1D, I've been asked by employment related companies to fill out health questionnaires not related to my insurance. I consider it a terrible invasion of my privacy and will only do it if forced (they will increase my premiums).

    The reward has to be intrinsic to last: I feel better, my overall results are good (many use A1C but that is another conversation), overall I can eat well and do activities that I want to do, I can live a normal life. For example. If my son has BG too high, >250 or 300, he knows I will make him sit out his TKD class. Because he wants to do TKD, he is motivated to not sneak food, to report if he feels high/low, to take recommendations from me, and.....to check his data supplied by his CGM, numbers reported on his Pebble watch.

    My suggestion:
    1. You need to consider your target age. What I expect from my 12 yo is vastly different from what I'll expect when he is 16, driving and out with friends.
    2. Long term goals versus short term goals?
    3. Are your ideas about rewards supported by psychology?
    4. We deal with TONS of data. We often already have routines, at least those of us on this forum. The question remains how to interpret the data, help us in decision making, fill in some of those variables.
    5. Ultimately, technology that corrects BG automatically just like a pancreas (artificial pancreas project) Until a cure of course:)

    Spend some time on "CGM in the Cloud" on Facebook. This is a group of T1D parents, software developers and engineers, who are using available technology to give better bio-feedback. My son can see his BG on his Pebble watch, as can I. I won't go into length here, as this is already long, but I urge you to learn how we parents and children are using CGM technology to affect BG.

    Another project that is coming out of this group is a DIY artifical pancreas, that is, a computer model to predict/adjust BG. Deciding what to do, not when to do it, is the challenge sometimes.

    The other possibility is this: there are a number of T1D adults (see groups on FB) and just by observation, it seems they are kind of left hanging sometimes. On their own now, perhaps that group warrants a look.

    *If you could answer any of the following questions related to diabetes that would be great!*
    • What are things that you would be happy your child did Lived a normal life. Loves to learn. Has a few great friends. Is kind and compassionate, helps others. Finds a purpose in his life.
    • What are things that you wish you didn’t have to worry about your child doin Dying because of a low BG or a mistake I made.
    • What are things that you often nag your child about? Leaving his wet towel on the floor.
    • What information about your child’s diabetes would be useful to know when planning the day (activity, BG, food, etc.)? If out, that we have all supplies, that we have food for lows, that we know when and where we'll eat, that we know what activities and level of activity, etc.

    All of this feedback is GREAT and I will keep everyone posted on my project’s status. I will be in a position to actually make something possible once the project is complete, so your time will no


    Consider that these parents found that their greatest need was to find a way to unobtrusively monitor BG while going about a normal life. This allowed them to make corrections in real time, peace of mind, and the social support (which is where you started) is incredible. They congratulate each other a lot (see 100 club) but the real reward is knowing you are learning and moving towards know what to do and when and saving your child from a dangerous situation.

    Look up Rajat Build on FB CGM in cloud build. Engineering student helping T!D parents build their "rigs". But how can we take Nightscout to the next step?
    Some brilliant people there.

    Cathy Alger
    '84 Chem Engineer, University of Cincinnati, whose senior project was to distill brackish water :( Wish I had worked on something more important - so GO CHAD!

    (sorry for length)
     
  2. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
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    I want to add some nuance to the point about continuous glucose monitoring (CGM).

    First, while CGM is often quite accurate and does provide real-time data, and while the leading CGM manufacturer is rapidly improving its accuracy, CGM is not (yet) a substitute for fingersticks. We still check my daughter's blood sugar with a blood glucose meter about 10 times a day. Some CGM users have gotten comfortable enough with CGM accuracy, which seems to vary from user to user, that they do fewer blood sugar checks a day; but most endocrinologists advise Types 1s to only dose insulin based on a blood glucose reading.

    Second, and probably more relevant to your project, the last I heard, substantially less than half of Type 1s use CGM technology. The uptake might have increased in the last few years, but CGM is definitely not universal. Purely anecdotally, in one local T1 parents group that we belong to, only 2 of 6 families use CGM. For one thing, CGM is expensive and not all insurance covers it or covers it fully; and for another, some T1s simply don't want another device attached to their bodies.

    Since I don't know any teenage T1s, I don't have useful suggestions on exactly how social networking has a role to play. But I do think it's worth noting that CGM isn't (yet) a replacement for encouraging regular blood sugar checks. And your target population might be the group least likely to be using CGM.
     

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