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Pediatric Diabetes Team looking for answers

Discussion in 'Parents of Children with Type 1' started by UIC_PediatricDiabetes, Nov 15, 2013.

  1. UIC_PediatricDiabetes

    UIC_PediatricDiabetes New Member

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    Hello everybody!

    We are a team of students at the University of Illinois at Chicago researching innovative ways to help pediatric patients better manage their T1D diabetes. We are looking to find the biggest problem/inconvenience/concern of having to take care of your child since he/she has been diagnosed with T1D.

    Below we have a few question we would like to understand the answer to and would really appreciate your help in answering any or all of the following questions in order to find the biggest concern you as parents have. This research would help us design a new device that could improve the lives of T1D children everywhere.

    Thank you in advance for your response!

    1. How old is your child and when did they get diagnosed with T1D?

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness?

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)?

    4. From your child's perspective, what is the biggest inconvenience of having T1D?

    5.What is the hardest part about having a child who is diagnosed with T1D?

    6. Can you think of anything that would make managing your child's T1D easier?


    If you have any additional questions, comments, observations, or question we should be asking, please do let us know!

    Thank you
    UIC Pediatric Diabetes Team
     
  2. Lee

    Lee Approved members

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    Even with all of that, my daughter says she does not want a cure.
     
  3. mamattorney

    mamattorney Approved members

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    Good Luck with your research!
     
  4. namegirl

    namegirl Approved members

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    1. How old is your child and when did they get diagnosed with T1D? 4 now, diagnosed at 20 Months

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness? Lack of sleep and constant monitoring of food intake

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)? Bribery (he's 4 :) ). Watching a favorite show, getting a treat, etc.

    4. From your child's perspective, what is the biggest inconvenience of having T1D? Insulin pump site changes.

    5.What is the hardest part about having a child who is diagnosed with T1D? Fear and worry.

    6. Can you think of anything that would make managing your child's T1D easier? Artificial pancreas/closed-loop cgm-pump system. Particularly one that is easy to train others to use.
     
    Last edited: Nov 16, 2013
  5. kiwikid

    kiwikid Approved members

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    I really was only joking about the necklace! A CURE ( a real cure, not an artificial pancreas would be brilliant ):cwds:
     
  6. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    comments in blue
     
    Last edited: Nov 17, 2013
  7. skyblufig

    skyblufig Approved members

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    Hello everybody!

    We are a team of students at the University of Illinois at Chicago researching innovative ways to help pediatric patients better manage their T1D diabetes. We are looking to find the biggest problem/inconvenience/concern of having to take care of your child since he/she has been diagnosed with T1D.

    Below we have a few question we would like to understand the answer to and would really appreciate your help in answering any or all of the following questions in order to find the biggest concern you as parents have. This research would help us design a new device that could improve the lives of T1D children everywhere.

    Thank you in advance for your response!

    1. How old is your child and when did they get diagnosed with T1D?

    He's 3 1/2 now, diagnosed at 2 1/2.

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness?

    Have not slept in more than 3 hour intervals since Nov 6, 2012. Most days it's fine; some days after a rough night of lows, we are walking zombies.

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)?

    Repetition. Also, I'm on the corner with the PP who mentioned ditching the word "comply".

    4. From your child's perspective, what is the biggest inconvenience of having T1D?

    He's not really old enough to find it particularly inconvenient. For now, the biggest inconvenience is having to stop doing whatever he's doing for BG checks and insulin. I do know it annoys him when he doesn't feel like himself if he's too high or too low.

    5.What is the hardest part about having a child who is diagnosed with T1D?

    Knowing that he'll never remember what it was like to just be an ordinary kid. The constant "on-ness" - there are no carefree outings anymore. The worry about the rest of his life. The guilt that my shitty genes got him here in the first place.

    6. Can you think of anything that would make managing your child's T1D easier?

    A do-over, this time with a healthy pancreas and pristine set of genes. Kidding aside, besides the obvious (a cure), a simple-to-use, within-everyone's-budget, available-yesterday artificial pancreas.

    If you have any additional questions, comments, observations, or question we should be asking, please do let us know!

    As future front-line health care folks, I'd be asking why supplies are so ridiculously expensive for this disease. Type 1s are essentially customers for life - it's like shooting fish in a barrel. Things like test strips and insulin should not make people choose between keeping their child healthy and alive, and putting food on the table. And that's with insurance.

    Thank you
    UIC Pediatric Diabetes Team
     
  8. Marcia

    Marcia Approved members

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    Diito with the word "comply."
    I think every pediatrician, and pediatric endocrinologist and nurse practitioner who is not type 1 should spend 24 hours with a child with type 1. They should be given just enough insulin to feel what a hypoglycemic reaction feels like. They should plan, weigh, measure, count every morsel they eat at every meal. They should plan every physical activity they engage in. They should notice stares from their peers and adults as they give themselves an injection in public. They should listen to well meaning advice from strangers who don't know what they are talking about. Every three months they should go listen to someone dissect their compliance with their treatment plan. Sorry, I'm having a bad day.
     
  9. hawkeyegirl

    hawkeyegirl Approved members

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    1. How old is your child and when did they get diagnosed with T1D?

    He is nine, diagnosed at three.

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness?

    Probably just always being "on." Thinking about what his BG is now, what it will be in an hour, how I have to make sure he is in range before he eats, making sure he has his supplies at school...etc. I could go on forever, but it is constant and relentless.

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)?

    He's nine. He is not in charge of any of that yet.

    4. From your child's perspective, what is the biggest inconvenience of having T1D?

    Probably missing class time at school to go to the nurse.

    5.What is the hardest part about having a child who is diagnosed with T1D?

    Lack of sleep.

    6. Can you think of anything that would make managing your child's T1D easier?

    As others have said, an AP. Something to take away the minute-by-minute grind of all of this.


    If you have any additional questions, comments, observations, or question we should be asking, please do let us know!

    The people you are reaching with this survey on CWD are probably in the top 1% of parents when it comes to knowledge of T1D and active engagement in the management of their kids' disease. I don't know what device you are working on, or who your target audience is, but I just wanted to let you know that you are not dealing with a representative population on here. :)
     
  10. Mish

    Mish Approved members

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    1. How old is your child and when did they get diagnosed with T1D?
    age 13, dx at age 5

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness?
    lack of sleep, and lack of family involvement (grandparent)

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)?
    In addition to the dislike of the word "comply" maybe some research into type 1 would help? We don't generally talk in terms of "taking medication on time". Anyway, for the most part, I handle most of the diabetes work. He's 13. I have to remind him to brush his teeth and change his underwear. no way I let him be in charge of diabetes care. So let's put it this way, I set the model for the behavior that someday I hope he will follow.

    4. From your child's perspective, what is the biggest inconvenience of having T1D?
    Just having it. The whole thing.

    5.What is the hardest part about having a child who is diagnosed with T1D?
    Lack of understanding from family and the constant worry about safety.

    6. Can you think of anything that would make managing your child's T1D easier?
    Artificial pancreas, using a decent sensor.
     
  11. MomofSweetOne

    MomofSweetOne Approved members

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    See Marcia's comments above. I agree, except I think 2 weeks would be better. In 24 hours, they MIGHT get calm. Two weeks...there ought to be a few curve balls at least.

    I would also add that the stress of dealing with medical device companies and insurance companies that eliminate choices of drugs or test strips (Express Scripts currently) or charge outrageous prices for devices (MySentry would be an example) is huge, as is the amount of time that customer services calls demand.
     
    Last edited: Nov 16, 2013
  12. BrendaK

    BrendaK Neonatal Diabetes Registry

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    1. How old is your child and when did they get diagnosed with T1D? Diagnosed at 9 months, currently 13 years old

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness? Lack of sleep definitely. Carson is also our oldest child. We don't know life as parents without diabetes. We have been married 17 years and only 4 of those have been without kids/diabetes. I was also diagnosed with type 1 7 years ago. Every aspect of our lives is marked by diabetes.

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)? Carson is entering more independence in the teenage years and we are feeling the growing pains as it relates to diabetes. Reminding (nagging) is no longer effective and is backfiring. Having his own experience with making diabetes related decision is and will be the most effective way for him to "comply" and that is very very hard for me as a mom. He knows he feels better when he exercises and he feels bad when he is high or low. That is a much more effective tool that my reminders these days.

    4. From your child's perspective, what is the biggest inconvenience of having T1D? Having to remember to carry all of his supplies with him at all times.

    5.What is the hardest part about having a child who is diagnosed with T1D?Trying to control a disease that is often uncontrollable.

    6. Can you think of anything that would make managing your child's T1D easier? A closed loop system. Infusion sites and CGMS sites that don't need changing and don't come off. Faster FDA approval for new technology -- particularly when it's already been approved in other countries for YEARS. Not needing to worry about the huge financial burden.


    If you have any additional questions, comments, observations, or question we should be asking, please do let us know!

    Thank you
    UIC Pediatric Diabetes Team
     
  13. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    I think this is very true. No need to apologize - I think many of us would like to see those who "treat" type 1 live with type 1 for a time.

    I almost ignored the thread when I saw the word "medication". Any medical professional who termed my kid's insulin, "medication" would not warrant listening to.
     
    Last edited: Nov 16, 2013
  14. Christopher

    Christopher Approved members

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    That is why I ignored it. Plus the comment about "proper exercise". Plus the fact that I usually ignore the people who come here trying to troll for information, regardless of how it is couched as trying to help our kids.

    Yeah, I'm a grump. :D
     
  15. Wren

    Wren Approved members

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    1. How old is your child and when did they get diagnosed with T1D? 9

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness? Lack of rest - meaning sleep, and less of a break from parenting because we're always on even if we have sitter, camp, school, etc.

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)?

    This question makes me laugh. My doctor given directions fell a little flat last night. DD was running low all day. She did everything right - tested, ate, reduced her basal. We texted all day. At 9 pm, she's 30 minutes away on a sleepover. She's just had dinner, icecream, and juice. She's 61, with a lot of insulin on board, crying because she doesn't want to come home. She's worked so hard - even practicing waking up at 2 am to test her bg the last week. So, DD goes over there, testing and downing carbs for 2 hours, and finally at 11:30 we decide to allow her to stay and hope the dad who we barely know will wake and test her at 2 am. I don't have a doctor given direction or technique for that. I'm hoping empathy and hard work will do.

    4. From your child's perspective, what is the biggest inconvenience of having T1D? Being different. Like having your dad show up at your sleepover.

    5.What is the hardest part about having a child who is diagnosed with T1D? Lack of sleep and constantly being vigilant.

    6. Can you think of anything that would make managing your child's T1D easier? A cure. Artificial pancreas as a consolation prize. I wouldn't turn down a pump that suspends when bg is low and a sensor that sends data to my phone.

    If you have any additional questions, comments, observations, or question we should be asking, please do let us know!

    Honestly, the people who really struggle with this the most say all the time they are afraid to test or go to the doctor or whatever because they are afraid. Afraid of being judged. Or that people won't understand how hard it is. Or that their doctor will take their device away because they are "non-compliant". Or just afraid they've already harmed themselves. They aren't necessarily as irrational and obstinate as you might think. Seems to me you've got to find a way to make these folks feel more comfortable in their doctors' offices, and you've got to offer some solutions that really work. Maybe that's a device and maybe not.

    Thank you
    UIC Pediatric Diabetes Team[/QUOTE]
     
  16. missmakaliasmomma

    missmakaliasmomma Approved members

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    [/QUOTE]

    That's very true. We were very unsure of ourselves with our first endo. We had to deal with her for 2 years. She was a nightmare and I can't believe she actually still has patients who want to see her. She told us we were going to cause brain damage to our daughter because of her lows. Because SHE- the DR, wouldn't take her off nph and put her on lantus. Life has been so much easier with our new endo ( well not "new" lol we've been seeing her for about 2 years now :) ) I thank God we were able to switch.
     
  17. MomofSweetOne

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  18. Junosmom

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    Dear Students,
    Thank you for your studies and hard work in the hope of making the lives of those affected, children and parents, better. You can really make a difference in the lives of people anguished and desperate for answers, cures, and help in managing a relentless disease.

    I have read all of the replies, I can't say enjoyed them, as some made my throat hurt as I look to my future with my son. It isn't going to get better. We parents are sometimes angry, touchy, in pain, grief and sad. It is very hard. I hope as doctors that is what you focus on first - that you are there for us. So far, my doctor team has been wonderful. I've called them in the middle of the night for reassurance. I've asked dumb questions, and always, they are calm and reassuring. I hope you can do that for your future patients. I would suggest as well that you can't/won't fully understand this disease until you have children, and maybe not even then if you are (hopefully) blessed with healthy children.

    We are new, diagnosed only in September, son is 11 years old. And yet, already, I have an answer for your "what device...." This is only my opinion and feelings. The answer is please, spend every working moment finding a cure. We/I don't want another device. There isn't any device that will make it go away, only manage it.

    I want you to find a cure. Maybe, that cure won't be for my son. But please, don't waste your doctor years treating the disease. Keep other parents from living our T1D hell. Keep other parents from shaking in their beds wondering if they gave the right dose or wondering if their child could die daily. Can the devices get better? Yes, but would it not be better to have no devices?

    I know this is probably an assignment, so I'm going around the survey to send you my heart's message to tell you again, thank you for working to help us dealing with T1D. Please reconsider your paradigm and that devices are not the answer to your questions.
     
  19. Junosmom

    Junosmom Approved members

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    I should amend my post to say, I do hope medical students study to help treat the disease, I only hope that research - finding a cure, better medical device, etc - focuses more on a cure and less on more devices.
     
  20. Darryl

    Darryl Approved members

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    1. How old is your child and when did they get diagnosed with T1D? 15, dx at 8

    2. What has been the most substantial adjustment you have had to make to your own life as a result of your child's chronic illness? Sleeping only a couple of hours a night

    3. What techniques do you find effective in getting your child to comply with doctor given directions (ex: taking medication on time, getting proper exercise, etc.)? Exercise is good for everyone but has no unique relevance to juvenile diabetes. Achieving compliance with taking medication (insulin or glucose depending on the blood sugar) is just like anything else with kids, expectations must be explained, monitored, and enforced when needed, just as with anything else.

    4. From your child's perspective, what is the biggest inconvenience of having T1D? I would assume it is the constant interruption of daily life, difficulty with activities such as sleepovers, medical devices, insulin, lows and high.

    5.What is the hardest part about having a child who is diagnosed with T1D? Lack of sleep, being aware of the health risks.

    6. Can you think of anything that would make managing your child's T1D easier? Technology has improved since 2007 but still has a long way to go, especially the user interface of CGM's. Ideally, a long-term biological treatment such as encapsulated alpha and beta cells.
     

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