My 4 years old son was diagnosed August 2, 2023. Thankfully not into DKA, I had a gut feeling something was off when he started drinking so much water and bedwetting so I took him to the doctor for a blood test, frankly just hoping it was hormonal changes or nothing too serious. I received the call that night to rush to the ER and well here we are.
We are starting pump training this week with the Omnipod and hoping to officially have it going by October. I’m starting to worry that I made a mistake choosing this pump for him. It looks huge, clunky and somewhat heavy! I was interested over the tubeless aspect of it but now I’m worried it won’t stay on or cause him discomfort. Is something like the t-slim more appropriate for younger kids? What are some of the best spots to apply the Omnipod to a kid? Will he just get use to it? Is the application painful? Right now we apply an Emla patch before his Dexcom changes.
Hello @Lyrael welcome to Type One Nation! here’s everywhere you can put a pod or easily inject insulin. Essentially if you can pinch it, you can inject there. You have a lot of new language and new technical stuff to learn, as well as understanding how insulin works and what to do in case of too high or too low. Its going to take a year but I promise you by the end of the first year you will be an expert. Then, further down the road, the focus will be on letting him learn to take care of himself. I cannot promise you it will be easy, but there are a lot of us here and if I can do it the last 44 years then you can, and he can too. Check out your insurance. I can go on POD and it is covered by pharmacy… that means if I am using the PODS I can go on a tandem or medtronic anytime I want because it is considered durable medical. part of the solutions is (unfortunately) what your insurance will cover. the PODS are fine, it is as good a pump as any. but you do need to be an expert with a needle. Also, the business of blood sugar testing and recording an observing is part of the new deal. I strongly recommend “Think Like a Pancreas” it’ll be the best 12 bucks you ever spent on amazon. keep asking questions, good luck!
Hi @Lyrael and welcome to the forum. I was 3 years old when diagnosed in 1963 and am still going strong.
I switched from Tandem to Omnipod5 about this time last year. It is large and I thought the size would bother me but now I don’t think about it.
Removing can be challenging - which could be a good thing for a toddler. You can’t just pull it straight off - you have to peel the tape up, which would be challenging for teeny tiny fingers. With tubed pumps it would be fairly easy for a child to yank it out intentionally or by accident.
I frankly find Omnipod’s adhesive painful to remove so I found underpatches on Etsy. The patch sticks to the pod and I use an Omnipod Simpatch (from Amazon - blue in photo ) to hold it in place.
Omnipod used to have sample pods you could try: there is no insertion - you just stick it on to get a feel for how it looks and feels.
I insert on my arm, abdomen and upper thigh. inserting it on my back or my butt would be awkward, not to mention uncomfortable for sitting and lying down, so I don’t use those.
@LyraelWelcome Melanie to the TypeOneNation Community Forum! And welcome to a few years of learning - I’m still learning seven decades after diagnosis. Jst keep asking questions.
Two bits I will add to what Dorie and @Joe posted. Tandem has a patch pump called Modi which is a little smaller than the OmniPod; I’ve only had a brief look at it so you’ll need to call a Tandem rep for information and guidance for selection.
An observation as we don’t have a toddler with diabetes. I’ve been at our local JDRF Chapter events, picnics, and watched many toddlers wearing OmniPods running about unrestricted by their pumps. In speaking with their parents, I’ve been told that their child with diabetes will do everything their other children do.
@joe I’m not sure what you mean about being an expert with a needle when using Omnipod? @Lyrael a each pod comes in its own pre-packaged kit which includes a syringe and needle to draw insulin to load into it, but that’s the only needle you will see. BTW, a minimum fill of 85 units is required and the pods stay on for 3 days - if your child does not use about 30 units a day ask about withdrawing the remainder so it does not go to waste. Otherwise be sure the doctor writes his insulin prescription for 30 units/day so he does not run out.
Here’s a screenshot of insertion sites specifically for kids. It differs slightly from the ones for adults. Your trainer will advise you on what to use.
I mean you have to be proficient in doing thing manually, preferably before you go to an automated system. It helps when you really know how things work, in case these things stop working.
I agree: I do think it’s best to progress: start with injections, and if you choose to use a pump start with it as a delivery device first before moving on to a loop system.
That said, so get a CGM, even if you’re not on shots or a loop.
Thank you for clarifying!
Hey there! I’m a mom of a 4.5 yr old, diagnosed at 14 months; my son is using Tandem Tslim with Control IQ. His buddy is 5, diagnosed at ~2; he is using Omnipod 5. WOW, our diabetes parenting styles are different – neither is right, neither is wrong. Both pump systems are appropriate for the littles, both boys are doing well, both sets of parents are doing well. After a while managing this thing, I am happy to say that both our families sleep at night.
I want to encourage you with this: the littlest bodies are the hardest to manage, you will need some time to figure it out, and it’s okay to take the time you need. Do your best to find support. Here is good. Friends For Life or JDRF local chapters are great. Message me if you’d like to…
My son wears his pump in a tiny SPI belt around his waist, or we put it like a cross-body sling bag for the days he’s wading/sitting in the creek or we want to keep it running during the bath. He uses 6mm TruSteel infusion sets (no kinks / few occlusions). He strongly prefers the infusion sets in his arms and the Dexcom G6 on his butt. He refuses the belly or thighs. His buddy wears his Dex G6 and Pod on his outer thighs – one per leg – or arms. Buddy refuses anything on his butt. Another little friend puts her Dex G6 on her belly. Both boys think she’s nuts, and also very brave. The message for you is: they don’t mess with their equipment. They know it helps them feel OK, they know it’s important to keep it on. My son will even report if his infusion set gets bumped and injured. We trust him and we change it. We have had the tubing caught and the site ripped out 1x in 3 years, and that was during some serious roughhousing.
It’s OK to second guess / ask Qs about the pumps, esp when you get to the algorithms. I think both systems are wonderful. I think they suit different parenting / different management styles. Both will allow you the ability to dose insulin in small enough amounts for a tiny child. The half-unit pens or even diluted insulin is just not precise enough for toddlers/preschoolers. If you find that the pump you choose isn’t working, the pediatric clinics typically have someone who is really good at writing letters to insurance carriers supporting a switch. A hospitalization is wildly expensive, and the drs and insurance companies want to see kids with the equipment that works. You made a great choice, but don’t feel locked in!!
Finally - and you can take this or leave it - there is an opportunity to try the Tslim & Control IQ as part of a clinical trial aimed at toddlers/preschoolers, who are not yet on a pump. I think it is national / remote. I have personally worked with the University of Virginia team running this trial (my son participated in 2 other trials with them). We got started with Control IQ with both our own wonderful pediatric endocrinologist AND the pediatric endo at UVA – the multiple sets of eyes and feedback was incredible.
TLDR - you made a great choice with the Omnipod, Tandem is also great. Your son will figure out how to keep it on. Good luck! It will get somewhat easier with time. <3
@Lyrael I’m both sorry and happy to see you here! Sorry that you have to deal with disease, but glad you’ve found a great group of people to provide recommendations on the challenges you’ll inevitably need to face, don’t hesitate to ask any questions you have. The folks here have probably encountered almost any issue you come across. As you go thru the initial learning curve, it will seem daunting, the good news is you’ll learn quickly and it will become second nature for both of you. Always remember, this is marathon, not a sprint, we’re in this for the long haul. I agree with @joe that learning to use a syringe and needle or a flexpen is a good introduction as a back-up means of insulin delivery, you can even use a flexpen as the means for loading insulin into a pod; then you have a built in back up means you’re familiar with if you’re out of pods or run into a problem with their supply. Your doc can provide advice on this, but you’ll need to decide (in conjunction with insurance/cost) and you can change your mind if needed.
With out wanting to inundate you with recommendations and without knowing you, the piece of advice I offer is “Become your own and your son’s educated and informed advocate.” The “Mom gene!” goes a long way, but we all tend to greatly defer to the medical community as “the experts” and in many cases they are. But many do not specialize in T1 (even endocrinologists) and rely on training they got in med school 5-, 10-, 20- years ago that may be outdated; there’s been an explosion in medical info and it’s nearly impossible to keep up without specializing. That leaves you to find the docs/PAs/nurses that are current and the only way to that is become the informed lead of your medical team so you don’t blindly accept doctor recommendations or decisions for you. Do your own research, ask informed questions of why/why not, reach your own conclusions and judgements on which ones know their stuff that you can work “with.” You’ve made a great start by finding this group and asking questions; there’s a wealth of experienced people here, but verify even what you get here with your own research. It will be worth it in making you an informed decision maker and advocate.
Thank you, Katherine, @sunshine_651 for sharing a parent’s perspective and reinforcing the point that “one size” / one method or one tool does not necessarily fit everyone. It sounds as if your son and his two friends have adjusted well to their pumps and glucose sensors - thanks for sharing this.
And the belt you mention is really helpful, for all ages, especially during activity. I have three belts that have seen many beaches, sailboats, and at least 5 or 6 surgery theaters.
PS - if you go with Omnipod I suggest purchasing a spare controller just in case anything happens. Insulet will send a replacement but you cannot do anything without it, so until it arrives so it’s good to have a backup. I believe mine cost less than $100.00 when I got it last year.
Thank you everyone for taking the time to reply and provide me with this wealth of information, it is greatly appreciated. I’ve purchased the book recommended as well.
I feel a little more at ease with my choice and much less “stuck”. Making all those big decisions feels daunting on top of everything else associated with T1D. I have a feeling that once my son grows up and he’s able to decide for himself some of this pressure will be a thing of the past but in the meantime my focus is to absorb as much information as I can to make his diabetes fit our schedule and not the other way around. It is greatly encouraging to hear that the Omnipod isn’t primarily intended for adults and that it is possible to change to something else if it does not work with our family.
The idea that this is a marathon and not a sprint really resonated with me and provided a lot of comfort. I’ll be using that daily as a reminder to breath and take it one day at a time.
Hi Melanie, You’ve received excellent advice here and there’s nothing I can add- except to say you deserve a HUGE CONGRATULATIONS for going with your gut feeling and having your son diagnosed before DKA set in. You then sought advice regarding pumps here- another demonstration of excellent judgment. With you as his Mom, your son has an excellent chance at a healthy life. Keep up the good work !!
Me again with a couple more suggestions:
I’m an experienced pump user (going on 30 years now!) but did want to see if I could get a feel for the Omnipod5 controller - I particularly wanted to learn how to set it up before I went live with insulin. I got my starter kit a couple of weeks before my training so I asked my trainer if I could use it with sterile saline first and she said that would be fine. So I took the settings from my Tandem pump and programmed them in according to what I had read in the manual (yes, I read the whole thing and found it a good supplement to the training videos); filled a pod with sterile saline; and took a saline bolus with the Omnipod controller each time I bolused insulin with my Tandem pump. It was helpful to get a head start with practice on a couple of pods.
Regarding supplies - my pods come from my local pharmacy - and they deliver! Whatever pump (and CGM) you use, and whether local pharm or mail order, they time refills so you should get them a few days before using the last of your supply. And since my first order arrived nearly 2 weeks before I even had my training, I’m a couple of weeks ahead, which leaves me with a generous cushion.
