I need help!

Diabetes Technology Insulin Pumps
1

My 7 year old son, Spencer, was diagnosed back in March. He has just been given the “green light” to get a pump. He wants the Omni-Pod, because as he said, “Other kids won’t see it, and I don’t want any tubes.” Everywhere I looked on the web today, all I saw were “horrible experiences” thank God I found this site. We had a company rep. come to our home yesterday (10/19/11) and put a pod on his arm and inserted the canula. He wants to wear if for the 3 days, (she de-activated the pod).
My questions:

  1. Is the Pod okay for him, age wise?
  2. How will we know if it is “working properly”
  3. Those of you that have used other pumps and switched to Omni-Pod, did you do the right thing?
  4. The final question & the biggest concern is his Endo. doesn’t really like the Pod, she said it has to do with the rep. (not the one that came to our home, she is new) not being available.
    This is still new to us, I want his life to get back to “near” normal and I know pumping is not a cure all. I just want to be sure.
    Thanks from a scared/concerned parent!!!
2

I know that you will find a ton of folks that love the pod and a ton that do not. I changed over from the Animas Ping and it was the worst exp of my life. I’ve been pumping for 18yrs now and have been basically on almost every pump make and model there is. My exp was that it did not work “for me” and that customer service was the absolut worst that I have ever come accross. Sorry to start out with a bad exp but if you ask me the best bet would be to go with a pump that has been on the market for a long time and has plenty of resources to keep making things better. MiniMed has the one with the cont monitor and Animas has just gotten aproval for Europe for their Vibe that is integrated for the Dexcom sensor. I’m on the Ping and I love it. I was on the Ping before I changed and went back to it. Yes it has a tube but for me it works MUCH better than the pod ever did and the pod is way too bulky again "for me"
Good luck. I would say give ALL of the pumps a test run. Then make up your mind.

3

Hi Mike. Our daughter started using the OmniPod right after she turned 4 (she will be 5 on 10/31, so we’ve been using it for almost a year.) We love it and cannot recommend it enough. It is discreet and easy to use. It is the only pump we have ever used, so I don’t know how it compares to other pumps. But we chose it for its tubeless feature. Keep us posted and best of luck to you and your son.

4
  1. I’m sure others will chime in too regarding the age thing, but I am positive in saying that children younger than Spencer have worn the pod (and still wear it) with great success.
  2. You’ll know it’s working properly by testing his glucose. That’s how you know that the shots you’re giving him are working too, right? Same process. Just different ways of making adjustments.
  3. I previously had used some minimed pumps for about 5 1/2 years. I changed to the pod b/c of my lifestyle, and I LOVE it. There are pros and cons with every pump, but for me the pros definitely outweigh the few cons.
  4. Don’t let a doctor’s opinion of the pump rep (of all things) cloud your judgement. Remember that you, your wife, and spencer are the ones living with this disease. NOT the doc. Sure it’s good to get advice and guidance from the individual. But to let politics (between other people!) stand in the way of successful (and convenient) diabetes management is just silly.
    You are correct that pumping is not a “cure all”. It still takes work. But it can be SUCH a major and useful tool in managing the disease! And from someone who has lived with it for over 16 years, I can say that pumping is definitely a tool that I both utilize and am thankful for, every single day.
5

  1. Yes, the pod is fine for a 7 year old. My son started at 9, but if you haven’t already watched them, there is a mom - Lorraine, who is a member of TuDiabetes, and has her own blog, whose son started pretty young. My son and I watcher her videos (you can find them on her blog, or on youtube - his name is Caleb) and it was great for us just starting the pod. There are also other parents on here that have had good success with small children.

  2. You will work to figure out basals on the pod and it can take a couple of weeks - you will figure out if it’s working for you.

  3. I would be wary of judging your experience based on the experience of others. My son absolutely LOVES the pod - would never go back to shots or even consider a tubed pump. He’s had 2 shots in the past 2 years, and even when things go wrong with the pod (nothing’s perfect) it has given him so much freedom that he didn’t have before. However, there are people like you said, who have had bad experiences.

  4. I don’t know how hands on you are, but I’ve never met my rep - I have stayed in contact with a ton of people online, done a lot of reading (Think like a Pancreas is AWESOME) and call Insulet if there’s a problem with a pod. If you aren’t comfortable doing all of that on your own, then the rep might be a critical part of your team, and you should make sure you get along well with them.

That’s my 2c. I think if your kid is interested and he likes it, it’s worth a shot. I can’t tell you what a difference it made for us.

6

My son has been pumping for over 3 years (started when he was 7) and the OmniPod is great for him! I have had great customer service, but that was only when I called Insulet directly for unexpected pod failures, I have not dealt at all with my local rep. The CDE in our Endo’s office recommended it to my son when he also expressed an aversion to the pump because of the tubing.

You know it is working properly when your child’s numbers are in range. Of course, it will also alarm and deactivate when it thinks it is not working properly (occlusion, loss of communication to PDM, etc). From what I have read, every pump has its challenges. We have very few problems with ours and it is completely worth it to us.

I asked my son about going off the pump, back to shots and he says he ‘never’ wants to do that!

7

Thanks Sandy for your honesty.

8

Thanks so much to all of you for your input. As I told my wife, ultimately, it is Spencer’s decision. I truly love this site and all that it has to offer.

9

I was diagnosed last year and I started the pod this June and LOVELOVE LOVE IT! I feel like more people are likely to go online and say something bad about something versus if they had a good experience which is why I think there is so much bad rap, not saying people don’t have bad experiences though.

I’ve never had a pod fail on me due to something wrong with it, it was always my fault like filling it wayyyy too fast or bumping it off and dislodging the cannula and that is rare.

I love the pod and forget I’m even wearing it (it’s on my arm) although the first couple days I hated it. Took me a whole two weeks to find the spot I loved and fall in love with it. I had it on my stomach at first and really disliked it there. I wear it on my arm now.

You know if your numbers are off as with any other pump. What’s really great is a lot of the times, not all, but a lot if the cannula gets dislodged or kinked it will alarm and tell you :slight_smile:

I think trying the pod first wouldn’t hurt and if you come to find you love it, awesome, if not, thats cool try something else. But i can’t say enough how much I love the dang thing!!! :slight_smile:

Good luck!

10

Hi Mike. My 9 year old son, Bowie, was diagnosed when he was 2, went on the Deltec pump when he was 5, and just switched to the Omnipod in August. Overall, he loves it and so do we. It’s not perfect, but his traditional pump wasn’t either. We are very happy with the change. I think a person’s experience hinges a lot on whether it’s an adult or child using it. I think adults don’t find traditional pumps to be all that cumbersome. We’re used to carrying tons of crap in our pockets anyway. Adults also don’t have the crazy spontaneous activity that most kids do. Just my two cents on that one.

Anyway… The Omnipod cons: we’ve had quite a few pods not activate when the insulin is injected. It’s frustrating for me, but doesn’t affect Bowie, so it’s not really a deal breaker. Also, we had one PDM report an error and stop working altogether one Friday night. When I called they told me they would ship a new one out on Monday and we would get it Tuesday. They said I should revert to injections until then. I freaked out. His old pump company would’ve called a rep and the rep would be at my house within hours with a loaner until a new one was shipped. Ultimately, they shipped one overnight that night and I had it at 10am the next morning. Still not great, but better. I solved this problem by buying a second, backup PDM. Our biggest “con” is site selection. Bowie is skinny and muscular. His only options are lower back, butt, or arm. The butt is not a good choice when he does karate and the arm is not a good choice when he plays baseball (he pitches). So he wears it on his lower back a lot and then it’s a juggling act trying to figure out when he can do an arm or butt site.

The pros: He doesn’t have to take it off for sports, showers, swimming, etc. We used to disconnect his old pump a lot and sometimes in the spring and summer it seemed like he had it off more than on and his BG was very difficult to control that way. Also, he is more comfortable not wearing a pack around his waist. As he got older, his old pump/pack was awkward during gym class, playing with his friends, anytime he ran around, it just got in the way. We’ve also noticed a lot less problems with bubbles now that there isn’t any tubing. We used to have to check the tubing every day for bubbles. If we didn’t and there was one, his BG would get very high very fast.

I’m not sure how to answer the “working properly” question. I guess if the PDM is reporting an active pod and dosing correctly, and his BGs are in range, then it’s working. You can hear the pod making clicking noises when it delivers insulin. I guess that helps too.

Regarding the sales rep…Now that we have a backup PDM, I’m not sure I’ll ever contact the sales rep again. I get more accurate info from people actually using the pod. I suppose it would be nice to have the support of your Endo, but maybe you could convince her to keep an open mind. Also, Omnipod has a 45 day trial period. If it doesn’t work for you, you send it all back and can start over with a different pump company.

Hope this helped.

11

Mike
I also am on the Omni. I have been using Omnipod since 6/10/2011. I am happy with the pump and like the convenience of no tubes. Omnipod is not the best pump. Having said that, it is the best pump for ME! That is how you should look at this decision. You will find many people of this site who love Omnipod, hate Omnipod, and others who share stories on both sides. You and your family must decide what is best for your son. I too have had failures of the pod (alarms, not beeping on filling, occlusions) and other times my blood sugar went high due to some problem of mine (bad site, pulled pod off, etc.). It IS an electro-mechanical device and they do fail! Our bodies are different and our blood sugar changes with diet, exercise, stress, etc. I think your son has already made his decision, so let us all know how it goes.
Hank

12

I’ve worked for both Medtronic and Insulet, and I can tell you the the OmniPod system is FAR superior. Yes, you may hear from some people that they had problems learning how to use the pod. Just remember, 0.1% of people complaining about something can usually be much louder than the other 99.9% that are happy, and therefore keep quiet.

13

Thanks Allie,
Knowing you have had the experience of “traditional” pump an now the Pod is what I needed to hear. Neither are perfect. I just think the simplicity of not having the tubes and other parts, makes the Pod “better”. And the statement that Gil made makes sense, those that are happy will not complain. Thankfully, I called our Endo today and she clarified they were not against it, they were not happy with the service. They did say they had just put a young girl on the Pod and that we could do as you suggested, try it, and if Spencer is not happy, we simply start over. Pray for us. WE NEED IT!

14

Go to my blog and search OmniPod or click on the tag on the lower right side. www.ardensday.com

OmniPod is the way to go in my opinion… Good luck!

15

Wow Scott…your site is amazing! Thank you! Thank you! I will look at the plan, and again I feel like this is not MY decision, it has to be my son’s. He feels comfortable with the pod that is on right now. To the point that when I want to look and make sure the canula is still inserted, and has no blood that his reaction is,“It’s okay dad, it’s okay.” I have two friends in our hometown that their children have Type I, and they have the conventional pumps. Their position is go with one of those, but my heart says we would be making a mistake. Thanks again Scott your info and knowledge of this disease, it’s people like you and all of those that have responded to my question that make this bearable. Thanks again!

16

Scott I forgot to ask you in my reply, does Arden have the CGM system as well as the Pod?

17

She does. She uses a DexCom 7+ which is also an amazing tool for making our days better.

I appreciate the nice words about the site. Thanks for taking the time to look around!

I’m glad that you’re taking SPencer’s lead… he’s a lucky boy to have a great dad. Let me know if you need anything…

Scott
@ArdensDay

18

Scott, I hate to keep worrying you, I too am covered by Blue Cross (Va. State Trooper/State Employee insurance) do they cover the cost/expenses of the CGM?

19

No problem.

I’m in NJ and they cover it, we did have to prove the medical necessity. Which we accomplished using a 7 day CGM study that showed her overnight lows.

20

Hi Mike,

I was two years old when I was diagnosed (I’m 37 now) so I didn’t have the value of being discreet. I can empathize with your son but what I did was let everyone know that I had diabetes because I felt like I was “different” than everyone else, but in a good way. I have my parents to thank; since I can remember, they instilled that I always keep a positive outlook my diabetes and in life. There will be hard times, but to get through those difficult times is to try - and try hard - to keep his chin up. You hit a major point to live a near normal life, and that’s how I’ve always lived.
I used insulin injections for 32 years and crossed over to Omnipod in 2008 and what a relief. My main reason to go with the pod was because it is tubeless. I met with a diabetes educator - different from an Endo. I was the first patient my that educator was exposed to the pod, so it was a learning experience for both of us.
As far as your Endo not liking the pod because of the rep, well I think that’s silly. I only contacted my rep once when I first started my pod, and that was to provide my insurance info. The tech support from Omnipod, for the most part, is pretty good. There are times when the pod isn’t functioning as it should but it alarms when this happens.
You’re on the right track and I think you’ll do fine. This is a great website to acquire anything related to diabetes.

Good luck!!!

Troy