That’s really a shame that your doc is not partnering with you. Honestly, I would leave the practice over something like this. Some doctors want to control your choices.
The pump/cgms reps are a wonderful source of info on the endos in your area. I asked them who they would take their child to if they were diagnosed and got more than an earful to pick a new doc. Sounds like you already have a good relationship with the Pod trainer.
Is Gary Scheiner willing to RX it for you?
Thanks to everyone for the valuable insight you have provided. I have scheduled an appointment with a new pediatric endocrinologist who confirmed they find pumps very efficient in BG control with toddlers AND they are okay with using the Omnipod (or allowing the patient to have a choice)!
His current endo did not make the scheduled telephone call on tuesday (or any to-date) which only helped me to make my decision to go elsewhere. I did have the teleconference with Gary Scheiners practice, only made a slight change to his breakfast carb ratio since I have followed his book to the T… too bad they are unable to prescribe, I would happily drive for hours to PA to work with such an insightful practice. Hopefully they will be able to offer me more once we get the pump.
Cross your fingers, that my next post will be to tell you all how great the Omnipod is and how happy I am that your advise pointed me in the right direction!!! Scheduled with VCU on June 16th- anyone go there?
I think that’s just fabulous! You go, mom!
Yay! So glad you made the change to a team that will care for your child in the way you want. This disease if frustrating enough …we do not need the Endo to be something that frustrates us too! 
I am soooo much happier w/ my new endo and glad I made the change. Everyone is different so you have to find the doctor that is the right “Fit” for your son. He is very lucky to have a mom like you willing to fight for him and demand the care he deserves. When you get the Omnipod…there usually is a rocky start…getting used to it getting numbers regulated all over again…doing basal testing… Please know that it gets easier… and that we are here for you. Make sure you find the local Omnipod Pump instructor Availale to your area and don’t be afraid to call and ask for home visits… Most pump companies are obligated to offer in home training…even if you get it at the doctors too. Also… get Skintac and Unisolve wipes… they do not come w/ the Omnipod shipment…but really make life easier… especially the unisolve to take it off more “gentle”…since Taterbug is so young. My heart goes to you… wishing you and him all the best.
I just realized why you seemed so familiar- I read several of your posts on This is Caleb. Forgive me for being new to this whole thing, I either didnt get part of your email/post or I’m to dumb to figure out how to get to it
Congrats to you! Life is too short to spend with an endo that won’t support you
No no - Manny reported that there were email issues. I tried to resend earlier - did the 2nd attempt get through?
And it happens all the time with me - after having multiple conversations on different platforms I finally realize I’m talking to the same person! lol
Wow. My Daughter was diagnosed in September of 2009 and was on the pump by November of that same year. She has the medtronic mini med. I love it. I looked into the omni pod and all that I have read about it is that it is not pediatric friendly. She has gotten used to the pump and clips it onto her pants (or underwear when she has a dress on) She runs with it and plays. We take it off when she is in the pool and put on a little cap and just test her every few hours to make sure that she is OK while her pump is off and she usually is. I know our endo. just gave me the names of several companies and told me to research what I needed to do. I live in Jersey and a lot of parents go to Philly for endo. Dr’s. I go to a Dr. in Jersey. You should look for someone that is going to be supportive of what you feel your child needs. Check out childrens hospital in Philly I am sure they must have someone there that you may be able to use. I can check around if you want with some parents I know around here. It is hard enough when your child is sick you have to fight for everything and you shouldn’t have to fight your dr for what you know your child needs.
Just wanted to update you all and thank you for pointing us in the right direction! Nates (former) endo FINALLY called me yesterday after I left another message. He started by asking how Nathaniel is doing, I told him removing fruit had not helped in the least and that the switch to Levemir had helped with night-time lows but made meals worse- he is still rapidly rising and falling- but going higher than before. Dr’s response was that he was not a fan of Levemir but had heard others have been successful with it and thought he would give it a shot. He said that in trying and doing new things, we often find that sometimes there is nothing that can be done. That if I had not received the CGM, I wouldnt even be aware of it and that it doesnt necessarily mean it will be reflected in his A1C.
SERIOUSLY- THAT WAS HIS RESPONSE! The reason I got the CGM was because I suspected this, and am I supposed to just be okay with my 3 year old’s BG going above 3-400 3x’s a day???
And it gets worse- I asked if he had reviewed my request for the pump, he said that he will be okay with Nate getting a pump, but absolutely will not work with the Omnipod. I asked his reason and he responded that the basal rate has limitations and in a child his age, he knows that it will cause me more frustration than what I experience now. I responded that I was aware of the basal rate limitation and in talking with other mothers and users, I was aware that you could do temporary basals to work around this, and knowing Nates insulin needs will grow as he grows, it was something I was willing to work around. His response was “well, I am not”. I said that I am home with him all day and that my insurance will only cover a pump once every four years, so I wanted to start with the one that I felt suited us best. He said again, he will not do so, that he has 26 years experience in coming up with his decision and that his reasoning was very educated. I asked how many toddlers did he have on the Omnipod? and he said none, but he has put children on the Minimed when it had basal limitations and that it was problematic.
We ended our conversation by me suggesting that I should probably go elsewhere- where I had input on my childs well being, and he said that was probably best- if I could even find someone willing to give the omnipod.
UGH!!! I was so mad! First, the issue is cognitive/emotional development with age- he cant even have a pump, next it is time limitations- they cannot get to me till September to do training, then he is okay with doing a pump, just not the omnipod…He is okay with “experimenting” with a different insulin because others have had success with it, but wouldnt even attempt a new pump? How inconsistant can one be! And he is willing to lose a patient over it!
Thank you all for your vote of confidence with taking his care elsewhere. I now know there is no other option, and am glad that I have already shopped around!
You can do no better than Gary And he can certainly give you a list of qualified pump friendly practices in the PA area. You have the right idea… no time to waste and if your endo is not on board you are going to be proactive and shop around. Good luck and here’s to getting on the Omni pod before summer! And, because the Omni pod is a low initial investment, costing less than the traditional pumps, you can always change if you don’t like it. I would also suggest researching Animas, as that pump is essentially waterproof and he can wear it in the water. It has a very slim clip so you can attach it to waistband, can be worn so it is not seen in pocket or worn inside the waistband. Anim as has the low basal rates, which might be important in so young a child.
UPDATE: Well, switched to a new Pediatric Endo who fit us in right away. He was GREAT. After reviewing Nates numbers, his first response was- "Have you ever considered a pump?"
We were able to get a scripts/paperwork completed in two days and Omnipod (yes- he had no problem with it what-so-ever) was able to train us the day after I received the pump- Saw the Doctor last Thursday and Nate started pumping this past Friday! Why didnt I do this before?
So far it has been a little hairy, lots of high numbers… the first pod fell off in the bathtub- though it wasnt put on the best (was a little nervous), but we did a pod change last night and so far so good. Now just to figure out the basal/bg levels…
Thank you all for your support!!!
My Son Santi is 3 yrs, dx at 18 months, on OmniPod since 20 months. We have been using Dexcom7 as well. You did really good on changing Doctors… congrats!!
You’ve had lots of good feedback. Tudiabetes community is great. I’ve learned so much from all the posts. Please feel free to ask me anything you might be having trouble with.
Thanks.
my two sons are much older and use the animas, so I am replying only to the doctor part. if you are not too far from DC, Dr. Cogen at Children’s is a wonderful doctor and they have a wonderful diabetes educator. We live in Annapolis and our pediatrician sent us to Children’s when our first son was diagnosed, the best decision ever.
Glad to hear that you have a doctor whose views are more in line with yours. Good luck with the omnipod!
Celeste
Our doctors and nurses were against it too, but we prevailed and our son (6yo) has been on the Omnipod and Dexcom since May of this year. He is doing very well with it. I actually forced our endo and push hard for it. THey were not supportive at all but next week is Daryl’s first endo appt since he started pumping so I can’t wait to see his A1c result.
Good luck and DON"T give up.
I
got the omnipod after switching docs- but having issues with him not getting insulin despite multiple boluses. changed sites, pods, getting ready to change insulins.
I dont get whats wrong?
How do you know he’s not getting insulin? Is it possible that his needs have just gone up dramatically for some reason? (Like growing or coming out of the honeymoon?)
That was another variable I considered, but he is extremely insulin sensitive and bolusing using the pump did not do anything, he would continue to slowly rise afterwards. After removing the pump, I manually gave a shot of insulin and he started dropping. He is so sensitive to insulin, I am confident in saying if he was getting the insulin I was bolusing with the pump, he would have bottomed out.
I filled his last pod with Hemalog yesterday afternoon (was using Apidra) and he stayed in range most of last night, even tried to go low…
sounds to me like you need a new endo, the literature in this realm is undeniable,
What I have observed about our endo is they have lots of trouble and hassle with abbots software and they have lots of trouble syncing and viewing data this is one of the reasons they do not like the pod… Anyone else notice this? My daughter is on the pod and it is much better than shots!