My 13-year-old son, who was diagnosed 4 months ago, is now eligible for a pump. Since day one he has been really looking forward to getting a pump and not having so many injections. Today I signed up for the class, and so he and I decided to watch some YouTube videos on different pump options (He’s had an Dexcom since Dx). Unfortunately that did not go as I anticipated. He’s said all along that he does not want anything with a tube (we’ve discussed his reasons), and so the Omni pod is his only option (right?). He saw the size of it in the videos and has decided it looks bulky and would be too uncomfortable while he was sleeping, or doing anything, really. So now he is second-guessing getting a pump at all, and his disappointment is palpable. I reiterated to him, and he fully knows, that I support whatever choice he makes 100%. But he’s feeling really torn at the moment.
So what I was hoping for is if there was some way to get like a sample pod that he could hold in his hands and get a better feel for the size of it and what it’s like. Does anyone know of anything like that? I know it’s probably a huge stretch. But it seems strange to me to ask somebody to make such a big choice without ever getting to see the actual pumps. The only classes that are offered are virtual classes, so he wouldn’t get a chance to see one in person.
Again, I don’t imagine that anyone offers such a thing. But I figured that if it does exist, you all would be the ones to ask!
@SarahSMS It used to be that Insulet had a dummy pod (non-working) same size, shape that they would provide. I’m not sure if they still do or not, but it would be worth a call. The O5 and Dash are, I think, the same size, so that would give a good idea to him; the unfortunate part is the adhesive is only good for one location try, though if you’re careful in removing it you could still use overpatches to try different locations. Whether there are other “patch” pumps available, depends on where you are in the world.
Omnipod used to have non-working samples - it can’t hurt to call to see if they still do.
FWIW, when I first saw Omnipod I thought it was bulky too. But I tried it last summer out of curiosity and stuck with it!
You can insert your pod anywhere you would take an injection, including upper butt and the fleshy parts of the back. Those would be awkward for me since I sleep on my back, so I use my thigh, abdomen and upper arm. Occasionally I do notice it on my arm if I turn a certain way while lying down, but more than 90% of the time I don’t even notice it.
I recommend doing training with a trainer in addition to the video sessions - the videos were good but I still had questions afterwards. Mine was online - not in person - but Omnipod set it up for me and I was glad I did it as she addressed all of my questions.
There is no commitment with Omnipod, as opposed to tubed pumps. So I would suggest your son try it out first and if he does not like it be won’t be locked in for 4 years as is typical with others.
I was still under my Tandem warranty - although close to the end - when I checked out Omnipod, and that month my insurance covered Omnipod in lieu of my Tandom infusion sets (Dexcom continued as before). But if you get another pump first and decide to check out Omnipod shortly thereafter, you will have paid a co-pay for the other pump, which could be substantial (if applicable).
Sarah @SarahSMS, I don’t know what you mean by “now eligible for a pump”. An infusion pump use is usually decided between provider and patient and is prescribed by a provider when the doctor sees evidence that the patient is capable of using the device properly without causing more harm than the benefit received. An insulin pump, any type or model, will not solve diabetes issues he is experiencing and is not a plug-'n-play instrument - a pump takes considerably more effort than injections. His preference for a patch-pump rather than the traditional pump with tube will restrict his options.
I suggest that he, and you, meet with as many “pump people” as possible so he can hold each option and make a good decision before finalizing his decision - other than patch-pumps most other options are an hefty investment meant to last for years. I suggest that you use the “Events” tab at the top of this page and see if there is TypeOneNation Summit that you can attend, or another event where all device vendors are invited to provide “hands-on” introduction and information for diabetes products.
@SarahSMS Glad you got one! Did they offer or did you ask for overpatches to for your son to try different locations? Not sure they’d supply, but I’m sure they’re cheap enough to produce that to make a sale, they’d provide a couple. I think @wadawabbit provided info on locations that most folks use…depends on whether he wants to “hide them” or “expose” them; people go both ways. I’m not shy about my T1 status, but I’m older, retired, and tend not to worry about what others think, plus they can be a conversation starter to educate people. Others are concerned about the exposure in the workplace, friends, or to just the general public due to concern how T1 might be viewed (there are many out there that don’t understand the disease, how it comes to be, the effects, there are some that still think you “catch” it (unbelievable!).
To sort of add on to what @Dennis shared (if you’re new to the forum, know that Dennis is both extremely knowledgeable and has a wealth of wisdom to share about diabetes) - while pumps - particularly combined with a CGM - are generally considered the best tool for treating diabetes, many people do just well on injections - in some cases better. Not trying to discourage you - just suggesting that if he does not like the Omnipod or want a tubed pump, injections don’t have to be taken off the table. On the other hand he may be thrilled - keep us posted when he’s tried it out - and he might join the forum himself to share his experiences personally.
Expanding response a little more; yes, some of the larger medical practices as well as “local” hospitals have diabetes education as part of community education services. Occasionally these group meetings [although frequently directed at Obesity Type Diabetes] will have pump company representatives present - watch your local newspaper. Also, did you locate a JDRF Chapter near you? I quite regularly attend monthly sub-chapter meetings that invite device company representatives to speak and bring pumps, etc., for us to handle and ask questions - the Insulet representative gave anyone who wanted OmniPod Patch Pumps to bring home and try - with doctor permission. Personally, I’ve allowed - with caution - people inquiring to hold my pump and get a feel of operation. You will find many of the attendees at these meetings wanting to help.
@Dennis I appreciate all the concern and information, but also please understand that the information I provided was only a snippet of our situation, condensed down for the sake of just asking the one question that I was wanting to ask the community. Which was if anyone knew of a way for me to get a sample pod for my son to be able to wear for a day. I would never jump into a situation without doing a ton of research on all of the different options. He has an appointment coming up with his Endo and I have a list of questions that I will be asking him re: a pump. I also plan on doing a lot more research online on his different options and having conversations with my son about them. His decision of not wanting a pump with tubing is just a personal preference for him, and he’s aware of that cutting down his options for a pump.
When I said he is now “eligible“, I was just referring to the fact that he was not allowed to be considered for a pump until a minimum of three months after his diagnosis (per the rules put in place by his diabetes education team for all newly diagnosed patients), at which time we would then be allowed to start the process of taking the necessary class/s if we chose to do so. We have gone beyond that three months because I wanted to be sure that both him and I were comfortable with giving manual shots and everything that comes along with it. And knowing that this process will likely take another one to two months to complete besides.
He may very well choose to just continue injections, which is something that I told him we will continue to discuss.
He has my 100% support on whatever decision that he makes. It’s all about walking a fine line between making decisions for him, because he is my child, and allowing him to make some informed decisions of his own, and me supporting him. Either way, it’s not a decision that either of us are taking lightly, and if my original question came across that way it was only because I didn’t provide much information. Which is certainly something that can happen quite easily online. But I do thank you for all of your experience based knowledge.
My 12-year old son is newly diagnosed too. Our Diabetes educator showed him the pod online during one of our check-ins and when we were at our next in-person appt, she gave him a sample Omnipod to take home so he can feel its weight, try placing it on all recommended sites to see what it would be like, etc. She also showed us samples of all the other pump options so we could compare sizes, weights, receivers, etc. I hope you can get a sample from your doctor or someone on your Diabetes team or if you have an educator like ours, reaching out to them would be my suggestion. Or maybe Omnipod directly.
The tube is no big deal buddy. I wear a t-shirt & drop the pump in its pocket. The tube is under my clothes so nobody sees it. It also fits perfectly into the watch pocket in genuine Levis. You can pop a small hole in the back of the pocket and run the tube through there. The infusion point is painless & comfortable to wear. The Tslim X2 and G6 are the best. The G7 is just around the corner…a much smaller sensor.
It’s your choice of course. Your decision. This just works super for me. After a week or two of great readings you’ll almost forget you’re wearing it.
Hi Sarah, My son was diagnosed with T1D at age 11 he is now 15. This was very difficult for him because he knew what he was facing because his dad is T1D. H dwas very depressed for a while. Just like your son he could not wait to get a pump because he felt like it would be so much better than injections. We chose the Omnipod and he still uses it. He seems to not be bothered by the size. Sometimes feels relief to have it off for a day just for a break and we use injections during that time. He did get to try a pod for a three day period to see how it felt before getting it full time.
I feel what you and your son is going through. It is so much like what we went through. I feel like between my son and I we would really be able to help if you need someone to talk to regarding the decisions. Since he has used the omnipod and dexcom for several years we both have pros and cons to them.
Please reach out if you would like to discuss this or have any questions at all. I remember how hard this was and still can be to navigate.
I didn’t read through every response, so apologies if there’s repeat information here. I saw that you managed to get a dummy pod from Insulet. The advice about using overpatches for repeat use is good. If you need a second pod, though, try asking your son’s doctor’s office. My diabetes educator took an actual pod, programmed it to go through the catheter insertion process, and then applied it to my back afterwards. So no catheter or insulin, jut the pod. Like your son, I’m also reluctant to use a tubed system and I was worried about the size of the Omnipod but unlike your son, I’ve had diabetes for 30 years. The bulk was annoying, but not as uncomfortable as I expected and I was able to get used to it in time. I wound up using the Omnipod Dash for about a year and then went back to MDI for other reasons. Both transitions were rough; I understand your son’s disappointment and the difficulty of the decision he’s trying to make. I also think it’s wonderful that you recognize the weight of the decision and are trying to support him in making it himself. Feel free to PM me if either of you want more info about my experience with podding. I’m happy to help however I can.
My very first pump was a Minimed 504, and when I first started I wore it for a couple of weeks using sterile saline so I could get used to programming, bolusing and wearing it before using actual insulin.
When I was considering Omnipod I wanted to try that as well: I did the online lessons and was put in touch with a person who would continue the training, but we couldn’t meet for a week or two. In the meantime though I got my starter kit and the trainer said I could try it with sterile saline, so I did. It was super helpful to see how to program the controller, take a bolus, etc before going live. I did use up a couple of pods with saline, but because I didn’t actually start using the system for a couple of weeks I was ahead when it was time for my next order😉.
For a person in your position, there is a fantastic resource on Facebook called Juicebox Podcasts.
Join this group. You will find balanced discussion about the various pumps on the market.
Also, what is your son doing for §504 plan? There is a group with ADA-Safe at School national subject matter experts also on Facebook. This will be increasingly important as the time for national standardized ACT/SAT and state achievement testing looms big. Accommodation is important and must be requested in a timely fashion.
504 plans are for in school. They detail accommodations and procedures. For example, I get extra water and bathroom breaks and I’m allowed to take a test a different day or get extensions on hw or assignments. My 504 also explains what my pump and CGM are and lets me have my cell phone and food with me at all times.
Note that a 504 PLAN WILL NOT get you accommodations when taking the PSAT or ACT/SAT or AP standardized tests. Because the company that administers these tests (named College Board) is a private company, they are not required to follow section 504. They have their own process for approving accommodations. You must submit an accommodations application form and provide proof that you have T1D and proof that you have diabetes devices like an insulin pump or CGM and that those are necessary. I submitted a PDF of my 504 plan as proof, but a doctors letter or other documentation would also work. Your school administration team will be able to help you with all of this. But make sure you go to them 2 months before you take any tests administered by college board because it can take them 6-8 weeks to approve. College board is super strict. If you don’t get accommodations you can still take the test but you won’t be able to stop in the middle if your BG is low. You’ll have to step out of the room to eat and then you won’t be able to come back in to finish the rest or get extra time to make up for what you missed. I took the PSAT this fall and they wouldn’t let one of my friends bring a box of tissues into the testing space because nothing but a pencil and specific type of calculator are allowed in. They don’t want anyone to have an advantage or ability to cheat. I was in a separate room with my own proctor.
Sorry for the long post
Thank you @6yGodsGr. You are you are absolutely correct, College Board controls the test environment. However, because they are a ‘public service’ entity, they must allow ‘requested’ accommondations and publish a procedure. The procedure is the school guidance counselor is responsible to funnel the request and documentation.
I taught at an exam site and was the liaison with the College Board. Our rules told the College Board they had certain controls, however, there were some places where there were rubs. College Board had to pay for (but did not want to pay) for an individual proctor for a pumping diabetic using a cellphone as a medical data relay. The CB did not want to allow the pump emergency kit to be within arms reach at all times.
Bottom line, the CB chief proctor and I, as host accommodation compliance officer, completed a testing environment exception report. It flew, there were many feathers in the wind. The students needing accommodation were served. CB was not happy.
Your post was not too long. CB must be met with firm and consistent, damit, do it by schools for their students needing accommodation.
Lise and J @6yGodsGr@987jaj although your comments stray from the posted Topic intention they will remain here as they carry significant information. Both of your comments really deserve a dedicated Topic.
I also will contribute; both the College Board entity and the site where the testing is done are subject to P.L. 101-336 - The Americans with Disabilities Act. Among other requirements, both organizations must listen to requests for “reasonable accommodation” and act appropriately.