I would first like to say thank you to the warm greetings I received when joining your community!
My son Nate was diagnosed in October last year at 2 1/2 years old. To say it has been a struggle is an understatement, but in March we received a CGM and I finally feel like I have control- as much as possible with multiple daily injections. He is on Lantus in the am, and hemalog at mealtimes. Despite how diligent I am about his care, I feel the Lantus is always working against me. His dose is too high, that I am sure, but if I lower it, his mealtimes are terrible- extremely rapid rises and drops- so fast the CGM cannot keep up (faster than 3mgdl/minute).
I have informed my doctor after thoroughly researching that I feel a pump is the solution for better control. Their initial response was they do not do pumps for children under 8 (how did they come up with that?) Now they (somewhat) approved, but are completely opposed to allowing for me to choose the omnipod. Knowing our lifestyle far better than the doctor, I truly feel the omnipod is the pump that will work best for Nate (he swims, plays in the dirt and sand, not to mention already has to carry around his CGM). I know there are drawbacks with not having as low of a basal rate and it is bulky, but the benefits of being tubeless and not having another device seem to outweigh the cons.
I am asking for feedback from others who use/ have used the Omnipod with toddlers that can either vouch for it or advise against it and why.
They also want me to wait until after September when they offer a pump training and they are very busy during the summer with vacations. I hate for him to suffer through the summer (feels really bad when rapidly changing bg- he can no longer feel his lows because of this) his doctors office suggestion was to put him on Levemire instead and wait a few months to see what it does. I understand having a busy practice, but not at my sons expense.
I have even made arrangements with Gary Sheiners practice to receive one-on-one pump training and assistance to shorten the wait, and suggested this to his drs (they have not responded). So… I also am looking for recommendations on pediatric endocrinologists in the VA/MD/PA area incase I am unable to get my drs on board.
Any feedback or advise would be helpful. And again, thanks for inviting me in to your wonderful group.
He is seeing a pediatric endo, but Dr isn’t too keen on younger children using pumps.
Taterbug & Momma,
My son Austin (5) was diagnosed just before his 3rd birthday. He was using th OmniPod within 3 months of diagnosis. Of course, the doctor mad it clear that the only reason we were getting so soon was the confidence he had in our understanding of the disease and treatment. Also, we had already paid our deductible ($6000) for the year, and if he didn’t approve it then, we would have to pay it again next year to get the pump!
We love OmniPod! It makes it SO much easier to bolus because of the small amounts possible with the pump. Bfore, we would sometimes give Austin a little more food after a meal, to round up to bolus amount to an even .5u. Not anymore. It goes all the way down to 0.05u. Fantastic. (BTW, basal rates are not a problem. My son gets 0.10u (NovoLog) for much of the day, and works much better than Lantus did for us. 1 or 2 units of Lantus made him drop SO fast)
I am sorry you are having to deal with red tape on top of all of this. My only suggestion is to be persistent and be sure that you can show extreme knowledge about what to do in every scenario. Sick days. I:C ratios. Ketones, etc so that the docs feel comfortable accepting your suggestions. Good Luck!
Our kids are older and our endo is a big fan of the pump, but not the OmniPod! It is important that you be completely prepared to handle pump therapy, and a good first step is arranging for training. Get in touch with your OmniPod rep and make an appointment with the doctor to discuss his concerns. It worked for us.
Since your son is younger, that lower basal amount is a big consideration. Have you tried to modify some of his other ratios to deal with the big swings in his numbers?
We have two OmniPod users in the house. Although it is a big improvement over other pumps, it is not perfect.
Good luck!
I agree that you may want to look for another pediatric endo. My son who is 13 years old just started the pump on 3-21-11. He loves it. He chose the Animus Ping. My son is very tall and very thin. He is not able to put the site on his belly due to not having enough fat. He had to go to the upper buttocks. I am mentioning this because the other little girl in his class (8 yrs old I think) was also too thin to wear the pump on her belly. This girl had the omnipod and I remember thinking wow too have to wear that on her buttocks and still pull up pants/jeans. It may work just fine, but I don’t know since we don’t have that pump. Just something for you to research since your little guy is still so little.
Also, I know our doctor told us that she recently started a 10 month old on a pump, so I don’t believe our doctor would agree with the 8 year old criteria. Best of luck to you and your little guy. Hate to see them suffer with the bg rollercoaster.
Hi - My 4 yr old in on the Omnipod - since she was 35 months old and it is(Ithink any pump is) so much better than needles -she still can go up and down very quickly but there is more we can do to affect her numbers with the pump- if we see her numbers are going low and she still has some mealtime insulin acting - we can turn off the basal for a while or if we see her running around we can turn down her basal rate.
here are my personal pros and cons of the Omnipod
Pros
I have the device - she cannot push anything accidentally (though I understand the other pumps have locks)
automatic insertion of cannula
comfortable - she often forgets where it is
allows for additional sites (we love the arms!)
waterproof
Cons
Defectives - we find between 10% -20%
The way they calculate Insulin On Board does not include meal boluses which is a big problem for preschoolers (especially if someone else is caring for him - they can’t correct before 3 hours after a meal)
Please make sure you can devote a fair amount of time (at least 2 weeks) to getting used to the pump(any pump) - getting the inital basal rates took 4 very frustrating weeks for us. We went on the pump around Thanksgiving which I would not pick if I had it to do over. Her eating and activity was all over the place so it was probably harder to determine the basal rates.
I think any pump is better than no pump - it will give you a lot more freedom as a family. Getting them to eat is less of an issue as well as if you are running late with dinner, etc.
No pump is perfect and you will have problems with sites (all of a sudden a site won’t work well or the insertion will be in a muscle or something) and then you will have to give shots to help bring him down but overall life is easier with a pump (after the adjustment period).
Best of Luck - look on the Omnipod forum on here to see what issues people encounter - this website is a great resource!
Celeste
Three months ago, I would not have considered a pump for Nate, however since receiving the CGM I know that the Lantus is a big factor in the problems we have with his control. I have made changes to both basal and bolus, and lowering the basal makes the rise and fall really bad (I’m talking rising to 400+ within an hour of eating, then dropping 5-10mgdl/minute), increasing the basal I chase lows all day and night. This has made him immune to feeling his lows. He got down to 45 without any symptoms whatsoever!
The CGM has provided so much information and has prevented so many lows, but I can only do so much with the tools I have now… i know there are issues with basal increments with the omnipod, but his insulin needs are going to grow with him, so I am prepared to work around them until it is no longer necessary. And if its not the solution, its out of my pocket. Whats the harm in trying? I’m the one who will be doing all the work!
I am happy to hear that the omnipod works so well for you guys! I have seen that most people are very satisfied with it, and I really think no tubes will suit Nates lifestyle sooo much better. He lives in the pool during the summer and the sandbox and dirt the rest of the day. I hate to think about disconnects, sand getting into the pump, etc. Not to mention he already carries around one electronic device (Dexcom CGM), I hate to overload him with devices!
Lantus just seems to be a big part of the"lack of" control I have with Nates BG. I have tried everything- foods, timing of insulin/food, I:C changes- it just seems changing one thing makes another thing worse.
Thank goodness I have 20/20 vision- measuring out less than 1/2U is next to impossible! I am a wreck whenever he visits family, imagining anyone else trying to measure out the increments I do!
Just a couple questions, where do you place his pod? Do you have a lot of pod failures? And is the insulin on board an issue for you?
I wonder why the hesitation of Doctors prescribing the omnipod. I see so many happy parents with it???
And yes, I have modified his carb ratios, but it doesn’t help the rapid rise/fall. He can go above 400 after eating, then drop as fast as 5-10mgdl/minute! I have changed insulin delivery/food consumption times without any success. When the Lantus is higher, the rise and fall are not as bad, but then I am chasing lows all day/night. I know the lower basal rate is part of the recommendation of the Ping, but were talking .025/unit- and his needs will grow as he grows. I am prepared to work around this if it is an issue- I am home with him so it will not be a problem. And if it is- I know there are other options, or we can go back to shots.
Thank you so much for your reply and honesty about issues you have found. Being home with him I am sure will be a big help in the adjustment. Technology is not perfect, thats for sure- but a snag here and there will be well worth him feeling better, and me feeling better about having more control.
What sites do you use (other than arms)? Does she have a lot of fatty tissue? Nate is fairly thin, I currently put his CGM on his upper rump which works fairly well. Does she ever knock it off or do you use extra adhesive/bandages to keep it on?
Also, did you have any problems with the basal rate? Nate is on 2.75U lantus, which calculates to .1 Basal. At 35 months, was here insulin requirements similar?
I know our doc was not happy with the way the omnipod calculates the insulin on board. It’s different than other pumps, but as long as you are aware of it, it’s totally doable
My 10 year old daughter started on the Omnipod this past February and we both LOVE IT! Before her POD start date, her Lantus dose was only 1 unit. We did not have any problems with her basal rate. So far, she will only use her stomach for site changes. We do not use any extra tape unless she goes swimming - then we put Cover Roll Tape on half of the POD and she’s good to go! My daughter is very active - plays softball, basketball, and volleyball.
Did your son’s doctor give you reasons why they feel a toddler should not be on a pump? Parents know best! I suggest that you educate yourself as much as you can about “pumping” and the Omnipod (if that’s the one you want) and tell you doctor that you want your child on a pump and if he/she doesn’t agree, then find a new pediactric endo. I would suggest reading - Pumping Insulin and Think Like a Pancreas - and go to MyOmnipod.com and locate your sales rep for Omnipod (they are very helpful).
I have read Think Like a Pancreas, and actually have a teleconference scheduled with Gary Scheiner (author) at 2:00 today! It is a wonderful book that makes so much sense out of diabetic care. I talked with a Omnipod Rep/User for over an hour about concerns I had and problems I read about and he was very helpful. Believe me, I have done my homework!!!
His doctor is supposed to call me direct this afternoon (all conversations to date have been through the nurse practitioner). I am prepared to go elsewhere if need be, I know his doctors are extremely knowledgeable- actually participating in the research for the artificial pancreas- which is why I cannot understand why they wouldn’t push parents toward using the tools available for better control. You are right- parents do know best. We live diabetes- it consumes our every action and thought!
Thank you so much for your feedback- hopefully todays phone calls will amount to something positive!!!
You have done your homework - great job! I hope all goes well with the doctor this afternoon. Please keep us updated. I also forgot to mention that Omnipod will send you free demo PODS that you and your son can wear for 3 days to try them out (my daughter and I did this. My daughter also wore a Medtronic demo Pump for a weekend and hated the tubes and having it attached to her clothes.)
Funny- went on myomnipod.com last night to order the demo units! Good to know about the medtronic. I worry about him pushing buttons as well, he does some with his Dexcom (though there isnt really anything that can be messed up with it). Thanks for the advise!
My son was dx at 20 months, but he did not start pumping (OmniPod) until he was 7. We love the OmniPod!
Having said that, I would think that finding real estate for the OmniPod and the CGM on a 2 year old’s body my present a bit of a challenge. In fact any site plus CGM might.
To this day, my son will not allow his stomach to be used for shots or Pod placement. We use… backs of arms, upper bottom and fronts and sides of thighs, all with great success. My son is quite slim and has virtually no belly fat but all of the spots work quite well. The other spot I would like to try, but my son will not entertain it yet, is right above the left and right waistline on the back (where Nick Jonas wears his 
). I would think that could work for a toddler too.
When swimming, i recommend jammers (the long tight suit that swim teams use). This helps keep the pod close to the body (assuming the pod placement below the waist) and less likely to pull off from the drag of the water. We also use Bands4Life bands around his arms when he is swimming and the pod is on his arm. They are great and reusable.
Above all else, you need to be sure you have a medical team that will support you in wanting the best fit for you and your child. As parents, we know what fits best into our children’s lives - this is not a one-size-fits-all disease!
Thank you for your response, started calling around yesterday… pediatric endocrinology is a good market to be in! Most practices are booking into august and September! Was hoping my doc would call back yesterday, go figure no response… so frustrating!!!
My daughter wants to be a Pediatric Endocrinologist when she grows up! And, her 12 year old brother wants to be a scientist and find a cure for type 1 diabetes!! Yeah!
We use the upper butt area - though I find we usually need an extra bolus when we use that site (don’t on the arms) - she does not have a lot of fat - she just had a growth spurt and is looking downright skinny lately - hard to find any fat. We have just started using flexifix tape to help keep it on which works better than the medical tape we were using. She knocked it off yeaterday after playing in the water but I had not put any of the tape on. She has knocked it off about 8 times over the last year and a half ( well knocked it off 5 and had three alarms when I heard the pod smack into something)- most when there was no additional tape applied. We did not have a problem with the basal rates - hers right now vary from .05 to .25 throughout the day. We have it broken down to 3 hour segments.I think near the beginning we did have a 3 hour period overnight with no basal. She uses between 8 and 10 units a day total (basal and bolus).
We were with a pediatric Endo at first. My son was 15 at diagnosis. When he was approved for a pump…we chose Omnipod…the doctors weren’t keen on it… or trained w/ it and tried to talk us in to a diffrent system…but my son really really wanted the pods. When he started to leave the “honeymoon period” things went crazy and he had a low that he went unconcious with… well… they assumed it was the Pods fault and made him go back MDI for a period (which was no better…actually worse) then we switched doctors… the new doctor is not blaming everything on the Pods and actually w/the help of the Omnipod Instructor…getting him in the best control he has ever been…and we are loving PODDING… I feel… in my oppinion…that if you son already tollerates the CGM… He will be fine w/ the Pods… My son had a trial CGM and said it hurt in comparison to the pods… and as long as you have the help of a cgm…to know if highs or lows that might be pump related are happening… then I think he is ready for it. Don’t forget Skin Tac and Unisolve wipes! They make the pods stay on… and come off when YOU want… not when they want! 
Good luck and yes… the Omnipod Peeps here are great… I am currently trying to get more Twitter Omnipod users to use the #Omnipod for communication too… so check it out there too.