INTERVIEW WITH THE hONEYMOON BOY

Early in his diagnosis, about June 2020, Jr wanted to share some videos with other type 1 kids. It took me a long time to edit the video, and is at the end of this post. This was filmed just 2 weeks  after leaving the hospital. We didn't know as much as we do know, so as you can see, we didn't prime before every shot.  In the hospital, we were told by the nurse that trained us to only prime the insulin pen with a new pen. Surprisingly, Many other parents are told this as well, I have no idea why.  Beware that manufacturer instructions say to prime your pen every. single.  time. Really!  Many are surprise to find out and although many will black parents and the new overwhelming diagnostic, I have a witness (husband) and my son that both remember the same thing at training. Check this link out for the correct manufacturer instructions, if this is new to you: http://pi.lilly.com/us/humalog-kwikpen-um.pdf

 The second thing that changed since this video was made, is that We also learned that the pen doesn't work it's best with very small units. We did our own experiment by measuring the amount of insulin expelled at 0.5, 1, 2, 3,4,5 units. We observed that if you need very little insulin the pens don't seem to be as accurate. This was confirmed by other Parents with kids in very small dosages. When experimenting, 0.5 to 1 was the worse in accuracy, often times shooting a zero amount, even after priming 2-3 units. Good Accuracy was less than 5 times out of 10.  When selecting 2 units, accuracy was not terrible, and correct 8/10 times, but not as great as if  you just extract the insulin out of the pen with a syringe (10/10). They were fair accurate above 3 units and I think most folks out of the honeymoon stage use 3+ units. I've read people sharing they use up to 30 units per meal or more, but we are not at this stage in life so for obvious reasons we switched to syringes, and we just pull them from the insulin pen. Honeymoon Boy applications are often 0.5 to 1.5 units. We prefer the pens because they don't have to be refrigerated like vials, and they are more resistant/harder to break. 

We discussed this with his endo team, but Initially we used purchased the syringes out of amazon or local pharmacy (most pharmacies don't require a prescription except CVS). This is hat we used: 

 

It was easier and cheaper to just get the syringes out of pocket initially. But after we requested from his endocrinologist and had so many long talks with the Express Script Pharmacist to explain it was a prescription error, we were able to add this to his prescriptions. If you have a child with Type 1 Diabetes, get used to having long talks with the insurance company, and pharmacist until your child gets what they need. Budget 2-4+ hours a month to do that if you have monthly prescriptions, or ask your doctors for a 90 day supply... then it's only 2-4 hours every 90 days (much better!)

Presently, Honeymoon Boy still uses the insulin pens however he uses them with syringes every time. We also do this because of the better accuracy, but also to avoid waste... it seemed silly to prime 3 units of insulin out of the pen just to get 0.5 units out.

Here's his video interview. We are very fortunate that he was trained to do his own shots right at the hospital and he was willing to do that. I did have to show him a few videos of other kids doing it because he tried to apply his own G6 receiver. 

Watch till the end, his response to "what do you want to say to other kids with diabetes". That really made me tear up. I didn't expect that, and I didn't want to tell him otherwise. Hope is what he will have and I won't take that away from him. 

Turn the sound up, he speaks a little softly.