Pediatric Diabetes Team looking for answers

See above. Also, what kind of students are you? That would be useful information for us.

ETA: I totally forgot a big one. I would like glucagon in a pen like device that only mixes the amount you want to dispense. Example: I want to give 3 units of glucagon to treat a mild low. I would turn the dial to 3 on the pen and it would mix the powder and dilutent as I press down on the pen to inject the glucagon.

 

1. How old is your child and when did they get diagnosed with T1D? My son is 7 and was diagnosed at 6, two weeks before he turned 7.

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? Trusting someone else to take care of Chris. Before, he could stay at a friend's house overnight, go on playdates and stay with family members without my supervision. Now, I have to make sure everyone is on board with his treatment, how to work the pump, when to call me, etc. Now that he's on a pump, it's easier than when he was on the shots, but it's still very hard for me to trust anyone else to take care of him.

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.)? I'm with everyone else on this. Taking medication on time? Um, do you mean insulin? And by on time, do you mean before, during, or after meals to ensure that the spikes don't happen? This question is extremely insensitive and condescending to those of us who live with this disease. If my child doesn't "comply", his life is at stake. What freaking option do we have?

4. From your child's perspective, what is the biggest inconvenience of having T1D? Not being able to play sports and be active. Christopher's glucose levels are highly sensitive to activity. 15 minutes of moderate play has taken him from 199 to 37. For an active, sports-loving boy, this has been the hardest part.

5.What is the hardest part about having a child who is diagnosed with T1D? The ignorance of the disease. People telling me about this great medicine or shake or something they saw on TV that helps prevent spikes. People making comments asking if he can eat that, whatever it is. People not understanding that Type 2 is completely different that Type 1.

6. Can you think of anything that would make managing your child's T1D easier? A cure. Insurance that covers 100% of what we have to buy to manage his diabetes.

 

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

9 months 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?

getting up 2-3 times at night to check. Every trip even to a grocery store now requires serious preparations which is really exhausting.

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 is 2 years old, so far only bribing works sometimes.


4. From your child's perspective, what is the biggest inconvenience of having T1D?
having to eat something when low

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

not being able to relax even for a moment or forget about it. Diabetes is always on my mind. Realizing that this is how my life/way of thinking will be for the absolute rest of my life is very hard

6. Can you think of anything that would make managing your child's T1D easier?
Faster acting insulin, liquid glucagon, some sort of policy or equal set of regulations to that of US 504 form here in Ontario. We have NOTHING when it comes to school safety for diabetic kids here.

 

It's been 3 days since you crashed this board with your survey. Several members have suggested your questions were insensitive. Others have asked you questions of their own. How about showing the members of this board some respect and saying, "thank you for the responses so far"? Or answering the questions that have been posed to you? Or apologizing for your insensitive remarks?

Once you've done all of that, please share with me the devices that you are currently working on. Or the devices that you are thinking about working on. Go ahead and brainstorm with us. Share with us even the vaguest skeleton of your current ideas.

Thanks.

 

1. How old is your child and when did they get diagnosed with T1D? 5 years, 3 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? Detailed monitoring of her food intake; waking in the middle of the night to check her BG

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.)? For those things that are not negotiable (BG checks, shots, pod changes, blood draws, etc.) I am honest with her and let her know what is going to happen.

4. From your child's perspective, what is the biggest inconvenience of having T1D? I think that she would like to have a snack at a friend's house without having to call me or ask the mom for assistance

5.What is the hardest part about having a child who is diagnosed with T1D?Worry about long-term complications

6. Can you think of anything that would make managing your child's T1D easier? Cure, non-invasive CGM, better methods of administering insulin

 

I emailed this this morning to suggest that they were behaving badly. They replied saying that they would respond to questions and comments soon. I hope they do.

 

In their defense, they are probably some college students doing a research project. That means that they won't come back everyday, etc.

 

..or that they're actually even working on a device.

 

But no - they are college kids at Unv. Chicago. They aren't working for a company or looking for a cure. They just want to complete their thesis or some such.

 

You are not a grump, I agree with you - your words are much nicer than what I want to respond with.

To the original post, reach out to the families at your clinic.

 

exactly. I don't mind helping them out, I just feel bad that some have read the thread thinking that there is actual some device that's being worked on.

 

I'd be stunned if anyone on this thread thinks there is a device being worked on.

 

Thank you

Thank you everyone for your responses! We really do appreciate you taking your time to answer our questions.

We are just doing preliminary research and are only in the first stages of it, so we appreciate your patience with us.

To answer some of your questions, we are a team of 8 graduate and undergraduate students at University of Illinois at Chicago with concentrations in industrial design, bio engineering, graphic design, and business administration. We have 4 mentors (3 professors, and one mentor from the biomedical company we are working with).

We are still trying to define what we want the word "device" to mean- it could be an app, medical product, machine, intermediary, it could really mean anything at this stage. At this point in the research we are trying to pick a direction, and in the next 6 months will develop a working prototype. The company we are working with is an Illinois based medical equipment company with branches in over 30 countries, but due to confidentiality policies we cannot name the company we are working with.

We apologize in advance if we have offended anyone with our terminology. We do not have any trained physicians on our team, but that might be something we look into moving forward. We understand you have had more experience than us with T1D, which is why we appreciate you taking the time to answer this post. If you have any questions, it is easier and faster to reach us via an email message rather than through the post, but we will be checking this regularly (though we cannot access it daily).


Again, thank you for your time!
UIC Pediatric Diabetes Team

 

I thought my electric shock necklace was a goer

 

Why? I guess I didn't read too deeply into it, getting my hopes up. It's a bunch of college students. I figured they are working on some kind of project (that is some type of device, app or other item) that they hope may one day actually become a reality. I guess I wasn't thinking in terms of life changing device. I compared it to the team of students who created the talking bear for helping kids deal with diabetes. I took it with a grain of salt. It may be something small or it may be something huge. But all it is right now is a project. Nothing more.

Though, I do think Jane's necklace is a keeper

 

Edit:

The company we are working with is Baxter Healthcare.

http://www.baxter.com/

 

It would be a smart investment for your team to take 10 minutes and watch this short clip of people living with Type 1 talking about what it is that they need and are not getting from pharma and tech http://www.diabetesmine.com/2013/11/diabetes-patient-voices-2013-video.html

The critical issue raised, imho, is that NONE of the technology we use day-in day-out can talk to each other. Our data manipulation capability is far too limited, far too labor intensive and like so much that we deal with, designed as part of the for-profit medical industrial complex and not with our needs in mind.

 

Hope that helps in some small way.

 

hopefully that helps, we are new to this. Good luck!