I still have no idea what is up with Adam's blood sugars...judging by the numbers, his endo thinks something isn't working. Animas says it is. BUT the moment I mentioned that the little plastic cap on the radio button came off (gotta love 5 year olds) she said, "Well, we have to send you a new pump because it's no longer waterproof!"
And really, even though he's only been pumping since January, his pump looks like it's been through WW3. Seriously...the sand alone that gets in that thing. I have no idea how pumps are supposed to last 4 years on small children. Wild ones, like mine, that is!
So, we shall see. One thing that really made some sense was regarding his infusion sites. He uses the 6mm Insets, and honestly...he pulls on his sites A LOT. She said that the tugging is enough to remove that short cannula from it's place without being obvious. We may have to switch to the Contact Detach sets. Who uses those? Are they as easy as the Insets? Do they hurt more?
This also leads toward a discussion we have in our home right now regarding switching pumps. Jason is gung-ho to switch to Omnipod. Especially since the new release will have the IOB feature fixed (so said the rep a few weeks ago - is this true?) I'm not ready to turn our lives upside down again AND train the school AGAIN.
However, it's starting to become a quality of life issue for Adam. He HATES the tubing. Hates it with a passion. He pulls it, twists it and cannot keep his hands off of it (which makes me wonder how often his numbers are bad because he pulled the cannula). He has trouble dressing himself with the tubing, and has gotten the tubing twisted in his..uh, man parts....more than once. Sounds painful to me. :)
We are coming to a crossroads - he is becoming more vocal about what he wants. We showed him the Omnipod and he was ALL for it. In fact, he said, "Wow....I could be like a super-spy diabetic person! No one would know I had diabetes!" So, that kind of stuff is becoming important to him, and I wouldn't be a good mom unless I acknowledged it.
I'm not sure where it will all lead, or when/if we will switch...but it is on our radar for now. So much to think about.
All those tubing issues are exactly why I didn't want a pump with a tube. But, I'm glad you're getting a new pump. Sounds like you needed the upgrade.
ReplyDeleteOur DD never had a problem with tubing and prefers the smaller footprint on the body; but since your DS hates tubing I would definitely given Omni a try. He could wear an empty pod attached to him before switching to see if he truly prefers it; they will send you a pod. For us, the smaller basal rates would have been an issue. Omni pod has been promising the reduced size pod for quite some time. Hope it comes out soon. That would make a big difference.
ReplyDeleteMy son really likes his omnipod.. He is very active also..and did not want the tubing...Glad your getting a new pump...and if you decide to give the omnipod a try-it is VERY user friendly... :)
ReplyDeleteYou can order the demo Pod for Adam to wear for free from their website. They're not exactly the same as they're empty and don't insert. My demo Pod also came off eventually but I've never knocked off an actual Pod. I'm a keen swimmer so I swear by SkinTac and Bands4life, who make colorful bands you can wear to secure Pods.
ReplyDeleteOmniPod also have a great offer running now so it would cost much less to switch which runs out at the end of December. And with OmniPod most of the cost is in the Pods themselves the inital outlay is less, so you haven't got as much to lose if it doesn't work out.
I'm a former Ping user. The tubing was a major reason why I switched and also the insertion. I liked the Inset 30's with my old pump as I'm thin but they were too fiddly to insert. The straight sets were easy to insert but kinked a lot as I hit muscle often. With the Pod, I get the angled canula and easy insertion. The Pod has a long canula too, 9mm.
Because you're already pumping, the learning curve won't be as steep if you switch, even for the school. The functions of all the pumps are similar as far as basal, bolus and temp basal goes. The menu layout is different but the PDM is so easy to use, very intuitive. It talks to you in full sentences and there are fewer button pushes for everything than with the Ping. I also love the Freestyle strips (no error 5) and light on the strip port.
About the IOB, I actually like the way OmniPod does it. I found the Ping subtracted too much insulin sometimes when I was eating more carbs soon after another carb bolus and I had to ovverride it or I'd go high. Once it actually suggested no bolus for a 10 crab snack, not long after a big dinner. I wasn't low so that could have ended badly.
Of course, there is the possibility of an unnecessary correction with the Pod but it will only suggest it. You have to confirm to deliver it. It also doesn't suggest a correction if you enter the carbs without a BG or if you take a BG but then say 'No' to using it for the calculation.
The super-spy comment comment was hilarious.
I think I could have written the comment above. I didn't but now I'm just happy because I don't have too. I'm sorry you've been having issues and I'm sorry I've missed them all. Had a few things going on over here. :)
ReplyDeleteI'm hoping the new pump will help with the issues --- who knows? Good luck!
Oh and when you're ready to talk Pod --- :)
If you're in a position to have both, I'd say go for it! The monthly supplies would just be a matter of switching scripts. I know people who go back and forth with different pump supplies. You won't know until you try it!
ReplyDeleteMy daughter started pumping BEFORE tubeless was available. She was 3, and the tubing hasn't been an issue for her -- ever! YDMV!
Handing over independence to my daughter means that I absolutely MUST have IOB. Period. I canNOT have her staying after school for Drama Club or going to friends house, and being the one responsible for giving herself insulin without IOB.
She also needs the pump attached to her. We don't use Dex half the time because she can't remember to bring it with her all the time. If that were a PDM, I can't tell you how many times we'd need to give insulin, but wouldn't be able to.
I've been hearing Insulet talk about smaller pods for YEARS...and as far as the new IOB, the last time I emailed them, they told me it wasn't something that would be changing. I've heard rumors, but haven't seen anything come to fruition. Aside from 1 PDM screen upgrade, there haven't been any other product improvements or upgrades in the past 5 years. It's time to move beyond the 1st generation.
I'm glad you're getting a replacement. Sounds as though it's truly needed, no matter what Animas says.
ReplyDeleteTo pod or not to pod?! We have been going back and forth on that one, too. I completely understand what it's like to have a wild, active boy, whose pant pockets and shoes come home from school with sand, sand and more sand.
It's me again who posted the essay above. Sorry I tend to ramble. Thanks for your comment Laura.
ReplyDeleteNeither IOB system is perfect. The Pod's works better for me because I only really need less insulin if I am actually low when I dose. I also struggled with having to override 'IOB' that had actually leaked out of a disloged site and why does the Ping forget IOB when the battery is changed?
That said, the Pod does give the user more of the responsibility for bolusing. I can see how a child could be led into giving a correction too soon after a meal, especially if they've been taught to always take a BG before a bolus and don't say 'No' to the correction.
Not having the pump attached has been less of an issue than I expected as someone who loses stuff all the time. Keys, phone and so on I can never keep track of but I've never lost that PDM. I'd wanted one for so long and it's practically my right arm. I get anxious if it's just in another room. I found it harder to keep track of the Ping remote which I gave up on after a while because of the One Touch strips.
The lack of updates in recent years is quite frustrating but it's not unique to Insulet. The new Enlite sensors from MiniMed have still not reached the US nor has the Animas Vibe and they haven't upgraded the Ping remote which could be a lot better with a decent color screen like the Canadian version. These and Insulet's Pod-Dexcom combo are all being held up by the FDA, as well, I imagine as the smaller Pods. I'm sure Insulet would be sending them out if they could.
Judging by the fact the FDA still haven't even managed to approve the new Freestyle strips for the PDM and they've been around for ages now, we'll be waiting a long time. The OmniPod has also reached Europe now and I expect they'll get the next generation first. The new Dex sensors already have the CE mark for the Vibe.
Anon (who are you?? LOL!) Thank you SO much for your input. I love hearing about how it works for you and good to know you've never lost the PDM. :) Actually, we are like Laura in that I don't often check BG before bolusing if it's been within an hour or two of the last BG check - I just add on the carbs that he's going to eat, so that wouldn't change too much for us. I'm counting on the fact that it's more intuitive to use (ie: asking questions) so that others will find it easier to use. The Ping meter remote is small, hard to read and understand - which has actually caused a few problems for us with the health assistant at school. So I'm hoping the bigger PDM will make it a bit more user-friendly for her.
ReplyDeletethanks so much for taking the time to reply! ((Hugs))
Thanks for your reply, Stephanie. I'm glad I've been of some help. I'm quite young but I'm an old soul and I'm on the autistic spectrum so I don't find socialising easy and rarely comment even though I love reading what the DOC have to say.
ReplyDeletePeople with autism can get very interested in certain things and since I got diagnosed, I have had to find out everything I can about D. The pumps have really caught my attention because I also love gadgets.
Well, feel free to comment anytime! I never imagined I'd have a blog, but was an avid blog reader. :) So, I totally get it. Thanks for sharing your expertise!
ReplyDeleteCruising through while I wait for a doctor to call me back so I can finish my shift...
ReplyDeleteJust to clarify...we don't usually test within a 2 hour window from bolusing, unless she's feeling symptomatic.
She's a very cautious child - especially when she's away from us. If she feels the SLIGHTEST twinge that something could be wrong, she'll test immediately.
That being said, she's also a child who is just learning how to master addition skills, read the time on a wall clock, and keep track of time in general...she may not realize that lunch was 3 hours ago or that there was a class party with a cupcake 30 minutes before school was over.
BUT she WILL test if she suspects something is wrong...and, if she's high, she'll try to correct in order to fix whatever caused her to test in the first place.
There's also the concern that a growing child has ever changing basals, ratios, and correction factors. Too much of any of these factors can cause lows...giving unnecessary insulin if you're about to bolus for a meal/snack only makes the situation worse.
Many of the most successful stories of podding children rely on Dexcom to help catch the lows the pod will miss.
I've been asking Insulet to fix this issue for YEARS. The Ping gives you a choice. You don't HAVE to deliver insulin minus the IOB if you don't want to. I think the pod should offer the same option.
super spy diabetic person! love that spirit! <3
ReplyDeleteHi Wendy,
ReplyDeleteI'm glad the Ping works so well for your family.
It did have its good points for me too and was certainly better than shots.
Although I was not a fan of having to scroll up to the dose myself on the Ping, it did help when I was amending the dose. And it wasn't hard. I just would have liked to see the correction IOB without the meal IOB, to help me decide how much to include and ignore. Only when the pump would not let me correct a high, due to IOB which I knew had actually leaked out, did I get annoyed.
On the other hand, I found myself overriding it a lot and while it was not the reason I finally switched, I knew all the pumps had their own IOB systems so I did start to look elsewhere. This article on diaTribe has the best explanation I found of the differences and made it clear that all the systems have their pros and cons.
http://tinyurl.com/88czbsb
I think MiniMed's system to some extent offers the best of both worlds. All IOB accounted for and subtracted for corrections but not for meal boluses. But I'm sure it too has its potential pitfalls and because I need waterproof and the remote, I could never consider it anyway.
I have Dexcom although I can't use it as often as I'd like for cost reasons. I use it about once a month for as long as the sensor lasts. I feel more confident pumping with Dexcom which I got while I was Pinging because it helps so much with finding the right settings and detecting a bad site. It was often my first clue to pulled tubing, my numbers slowly heading up.
But I don't think I rely on it any more with the Pod than the Ping, possibly less. I can't CGM on swim race days (I swim with a club) and feel better about that now I'm not disconnecting from my insulin too. I think the success rate of pumps improves for young children with CGM's as they're often hypo-unaware so it gives the carer a window into what's going on. Carrying Dex with a Pod is perhaps easier for a small child than with the Ping. MiniMed might be the easiest as it's all in one but for the needle which I find too big.
The ideal scenario would be the best features of all the pumps in one but as that's unlikely, we just have to pick one. And if necessary, another one after that. Choosing a pump for your child must be even harder and all of you d-parents are heroes to me.