Hello. We are trying to get our 4 year old who was diagnosed with T1D in August on a pump. We have all of our supplies and are ready to go, however due to COVID exposures at daycare we have had to cancel her saline run and pump start appointments twice. Our endocrinologist office is not very flexible and requires these to be in person and the pump start appointment is 3 hours long, which seems crazy for a 4 year old to sit through. We are not 100% satisfied with our doctor’s office and are looking to see what other T1D parents/kids have had to go through prior to being able to start using their pumps. Is this normal? Is everyone out there required to do these same education appointments (including length of time) prior to using the pump or is it just our specific endocrinologist? Thank you for your help!
Hi @amanda.friend . Wishing you all the best as you get started. I’ll let parents respond to questions about current state of training as I was an adult when I started 30 some years ago. I just wanted to say if you’re not satisfied with your endo don’t be afraid to shop around. This may not be the best time since you’ve already started the process with them, but if you don’t find your doctor is responsive enough to your concerns or sensitive enough to your cares, there’s nothing wrong with making a change. Something to keep in mind on this new journey.
That said, I would hope that a large part of the training is technical info about how a pump works, diabetes education and that sort of thing that your son doesn’t need to be present for - and the rest would be the “hands on” of use.
Check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 and works in the field so he has a unique perspective - and I found the book surprisingly fun to read! I was diagnosed at 3 myself and took shots for 30 some years before pumping, and I’m doing well.
All the best to you!
Hi, Amanda, and welcome to TypeOneNation! My daughter started on pump therapy during the pandemic, and we were trained 1) by teleconference, and 2) without a saline start, 3) in about an hour. So it certainly can be done. And it was fine — though in all honesty, I would have preferred in-person, if that had been an option, and my kid was a lot older than yours, and had been managing her T1D with injections for many years already, too. So please take that fwiw.
The saline start is not unique to your endo: a lot of places insist on it. The idea is that it’s a safe way to get the hang of how the pump works, so you don’t inadvertently overdose yourself. But it seems to me you could overdose with a syringe, too, and no one ever says you should use saline for a week before you start taking insulin by injection.
I guess the bottom line is, if you don’t like your child’s endo, try a different one. Even if the requirements ultimately do make sense in your situation, if no one is explaining them in a way that makes sense to YOU, then that’s no good. You really need someone who can teach you/you can learn from. Good luck, and post back to tell us how it goes!
@amanda.friend Hi Amanda and welcome to the JDRF TypeOneNation Forum!
First, I’m “older” and had lived with insulin injections for 47 years before I began using a pump, and none of my four pumps have ever seen saline solution. As has been said, the saline might be to give practice so that you don’t accidently cause an overdose of insulin, but in my opinion you would never know if you had used too much insulin; each of the pumps I’ve used have had settings for maximum bolos dose permitted and for maximum basal insulin dose per hour. These are “safety features” that should be properly set. The 3 hour training is for you and your adult family/friends who may be helping, not for your child.
I strongly suggest that you read and [try to] understand the User Manual, writing down questions you have, and make yourself aware of the features and setting menus of the pump before you begin its use. I have never had any training class for a pump, although before I began using my first pump Medtronic sent a nurse to our home to assure the manufacturer that I, and my wife, understood the features and operation - the nurse was with us for less than an hour and watched me fill a reservoir, place an infusion set and begin use.
Just remember to ask questions and use commonsense; many Members here have experience with the several pump models and can offer tips and suggestions.
@srozelle (hi Susan!) mentioned saline. When I started on my pump - again years ago I wore it with sterile saline for two weeks. It gave me plenty of time to learn the functions (I started on Minimed and now use Tandem), and when I took a shot with meals I programmed in the amount of carbs so the pump determined the saline dose instead of insulin.
It gave me time for me to see first hand of I was comfortable wearing it and to get used to using it, and if I programmed 90 grams of carbs instead of 90 I learned how to back out and enter the right amount without panicking. I found that time helpful and valuable but as @srozelle said it may not be necessary for everyone. That said, I would encourage you to have him use it with saline for a while so you can also see the best way to wear it so he won’t pull it out and he can get used to being attached “to something.”
When I “went live” it was at a hospital so they could take quick action of our settings were off. My doctor had two other patients starting at the same time and the woman and I shared a room. We were allowed to roam freely and have lunch in the cafeteria - at just had to record what at had and how we dosed. I remember joking with “R” that I hoped or endo wasn’t in the Cafe as we checked out the ice cream stand😊. From what my friend @Dennis described it sounds like startups vary widely - but we get the hang of it all the same.
If you don’t mind my asking, which pump did you decide on?
Thank you! I appreciate you providing this detail. I don’t mind in person, but I wish there was some more flexibility given the pandemic. I also understand the reasoning around the saline run. My husband and I are just having a hard time because we feel like we are jumping through hoops. We already had 3 pump appointments, 2 of which were not beneficial and were a waste of time.
Thank you Dennis! Unfortunately our endocrinologist requires our daughter to be at the 3 hour appointment with us.
Hi again - the peat is back. Apologies for multiple replies but my ideas come in bits and pieces. Often I just tack on to what I wrote before but thought I would try something new. In wondering if you have a pediatric endo? Just as a general pediatrician is more knowledgeable about kids in general (I saw one until I finished high school), a pediatric endo should be better able to handle the needs of a child growing and growing up with diabetes and I would expect them to consider the challenges of having a toddler at a visit for such a long time.
Hi Dorie. Yes we do have a pediatric endo. Thanks!
Hi! My now 8 year was diagnosed with T1D 2 years ago. This spring we did our pump training. It was about 4 1 hour sessions and then the saline start and then the 3 hour start up with insulin. It was all helpful, but probably not all absolutely necessary, but I actually like my pediatric endocrinologist and my daughter loves their office. They actually have a play therapist who came in and played games with her for part of the time during 1 hour classes and during the 3 hour stay she came in a few times. had nice coloring stuff she could do on her own and in general made it a place she enjoys going. I think we even walked around the complex for a while for something to do while we were hanging out for the 3 hours. It wasn’t as bad as I thought it would be a we had her 6 year old sister with us too. I used to have her bring stuff to do, but she never used it because they had better stuff to do. It was all worth it, first month on tandem pump it fell out/didn’t work 18 times ( tandem sent me replacements) after that first month ad a few tips from a tandem rep we have absolutely loved having her on a pump. It makes our life so much easier.
Even with an exceptionally brilliant, dextrous, careful and disciplined 4yo, I would be super-cautious and intensely observant – more so than if you were an average parent like 96% of us are.
Way beyond a ‘mere’ endocrinology doctor is a professional in rearing of an exceptional young child.
One example: a dislodged infusion set will never cause an alarm and wiil be hidden most of the time. Only when a fingerstick can accurately tell you there’s trouble, and even then cannot tell you how long the delivery has been stopped, can you even know there’s a concern.
Seems to me the unitary sensor+pump approach is an automatic first application for a young child.
Please confirm this aspect with a ‘disinterested’ third party, an expert voice from JDRF or Joslin or the like.
Best wishes for a warm holiday season. And note: this will develop successfully, for sure!!