Is 6 mos to 1 yr delay between dx and pump typical? Why?

i spoke to my endocrinology clinic Friday and was told they won't even consider a pump for 6 months to a year after dx because of potential honeymoon.

does that make any sense? Did other pump users have to wait an arbitrary amount of time?

Thanks!

 

We had to wait due to insurance. At the 6 month mark I was on the phone getting the ball rolling. By the time everything was complete and we had training, it was 8 months (a bit longer for us because of the holidays).

My daughter was honeymooning while pumping. Our doctor felt it was more helpful to be on the pump because we had the luxury of reducing basal or turning pump of completely, and of course having different basal programs based on time of day. For example, my daughter was extremely insulin sensitive in the afternoon, so she barely got any, yet in the am, she needed more. My daughter was honeymooning for 18 months, and there was no way we were going to wait that long!!!

Some doctors feel that a wait is needed because the family needs to get used to doing shots and carb counting. Honestly, after a few weeks, we were comfortable. Day one of meeting our doc we told her we wanted a pump and she was fine (our friend is on one so we were familiar with it) and gave us info that day. Some have antiquated views on D care. You need to do your research, go armed to your next appointment and be firm. If they say no, start looking for another doctor.

 

We had to wait 6 months. It was about 9 months before we were up and pumping. Our clinic's reasoning was that they wanted us really familiar with carb counting and giving insulin with shots so we would know what to do if the pump failed and we had to go back to the old fashioned way.

At the time, it completely annoyed me and I felt we were ready sooner. Now, I'm glad we did it and I'm comfortable with shots. However, now that my son is pumping I don't think we'll ever go back. He really loves having the pump and it has made managing diabetes so much easier for us and less obtrusive for him.

FWIW, we go to a large hospital for care, and they have a very standard way of doing things and do not like to deviate from their protocols at times. You may find a different answer by going to a different endo.

My only advice would be to make sure you are really comfortable with carb counting and giving shots. It is a learning curve, and although it makes it easier in the long run in the beginning it's a lot to learn.

Good luck with your decision!:cwds:

 

Our practice told us 6 months after diagnosis, to have time to become very proficient at carb counting, dose calculations, and such. Ididn't really know enough to question it, but thought it was weird that it was so cookbook. My husband and I both work in the medical field, so shots, calculations, highs/lows aren't unfamiliar to us.

At 6 months, I asked, and they seemed surprised, but set us appointments to meet with the CDEs to discuss options. They had a specific pump in mind, and I was interested in a different one. I wasted another month convincing them that an Omnipod would work for a 2 year old. We got the prescription written, and then waited another month or so to do the saline trial they required, then to be in the pump start-up class they required. After all was said and done, we were pumping about 10 months after diagnosis.

We had the same sort of go around when we finally had insurance to cover the CGM. This time, I knew more about the system, and insisted on the CGM we wanted, and if we could not have it, would transfer out of the practice.

I think 6 months is arbitrary, and needs to be adjusted based on the family's ability to use a pump and understand the basics of insulin dosing. The requirements for specific time frames, intro classes, and such need to be tailored to the family, not blindly applied to all.

 

Agreed. That's why many refer to MDI as pumping without a pump. You are essentially doing what the pump does, just via shots (of course you can't tailor the long acting like a basal program, but you are doing carb ratios).

One additional thing is when you start pumping, it doesn't magically fix everything. As pp says, there is a learning curve. In the beginning there are many changes in order to get the right balance for the pumper. But, it does get a bit easier.

 

Our endo pushed the pump from day 1 so I think it really depends on the philosophy of your office.
For us, starting during my son's honeymoon was the best thing we could do because his insulin needs were so small, we could give much smaller doses with the pump. On MDI he was down to .5 unit of lantus and his insulin for food was so often less than half a unit- with pens we could only give 1/2 or 1 unit and then on the pump he could get .2, .8 exactly what he needed.

 

Insurance dictated it for us, 6 months, and it was right at 9 months when we were pumping. I personally believe that it's a good idea to be skilled at MDI before going to pumping though I'm sure others will disagree.

 

This was us - however, I don't think being skilled at MDI is any more important then learning the pump. There are quite a few people who get to start Pumping day 1 - mostly adults and some of the folks in European nations, if this boards history is any indication.

I would search the topic here - it has been well discussed over the years.

 

Honestly I think if we were put on the pump in the hospital it would be no more daunting than doing MDI, everything was being thrown at us anyway and our head was spinning. It's what you are taught, you learn it. My kid was so traumatized by the whole experience that doing a set might have actually been a bit easier than the shots.

 

I've heard lots of reasons but I honestly haven't heard a good reason ever. It may be great for a particular family or you may be glad you waited and yes it is a lot to learn, but the pump is basically an insulin delivery system, like a shot or a pen. You will be dealing with this FOREVER. Believe me, you'll have plenty of time to learn everything you need to know--until the next pump/cgm/meter/new insulin comes out. Then you relearn it. If some ppl want to put off pumping until they are more comfy or if they aren't tech savvy then fine. But there is no reason for a doc to have a rule that everybody should wait 6 to 12 months.

 

Does your husband pump? You've already been counting carbs for his diagnosis for how long? I find out your insurance company's policy, not the doctor's office policy, and go from there. If you want it now, appeal with your experience. If your husband's is already pumping and you have experience carb-counting, it doesn't seem to make sense to not allow your child to have a pump.

The honeymoon reason doesn't make sense to me. Kid's insulin needs change all the time. The pump would allow you to dose for smaller amounts MORE accurately, not less.

We asked to start CGM and pump at the same time. It caused some tensions because our team was on our side against the standard protocol, but we were allowed to. I was told at our last appointment that they're now doing it on a case by case decision rather than a blanket protocol for everyone. Maybe you'll be the one to change policies.

 

I actually agree with this--I was horrified when I saw all the syringes and supplies and stuff. LOL, the nurse said, OK I;m going to get the insulin from the fridge--don't look in the box. When she came back and saw my face she said, You looked in the box didn't you.

But I think it should be up to the parent. You can decide to wait a week or a month or a year. You can be encouraged to give it a few weeks, think about it, do some research, and then decide. But I don't like any doc saying "6 to 12 months is the rule." By 6 months you'll know more than most docs.

 

I agree endo practice philosophy can vary. We our a little over 4 months we our starting the pump next week. We want the convenience of eating on demand and avoiding so many shots.

 

I pumped from day 1 (well I was on IV insulin initially but never did shots).

My pump was also delivered about 12 hours before I started it and less then 3 days after my parents learned I would most likely have diabetes post surgery (they didn't know the extent of the procedure beforehand).

We had no problems whatsoever with the pump start. We had the advantage that I wasn't eating actual food so we didn't have to worry about carb counts. But other then that we were doing temp basals from day 1. I picked up the pump myself when it arrived and started exploring the menus and entering settings.

I know my situation is different but I think it does show that it is possible to start pumping very early on. I think everyone should have the option to leave the hospital on a pump if they want to. We had no insurance coverage for my first pump. The hospital covered all my treatment related expenses and the pump was paid for by them. My parents paid for pump supplies for the first year and then we got insurance coverage for them.

 

Ours was at 6 months due to insurance. A friend of hers had a pump so from day 2 in the hospital that was her goal.

Honestly I don't really know if it would be better to learn shots first or go straight to the pump. I'd think it depends on the family and the support of the doctors.

So at 6 month appointment we said we wanted Omnipod. We had to meet with the dietician to prove we could count carbs and with a social worker to sign off on it. I have zero idea why we had to meet with the social worker but we did.

We started the pump about 8 months after diagnosis once we did the saline and training.

 

We got the pump about 9 months after dx. That was almost 10 years ago though so the practice may have changed. I know my friend has been discouraged from pumping because her son is honeymooning which I think is ridiculous. My dd never honeymooned but she was so young her doses were very small and the pump was a life saver. I would think the pump would only help in that situation. I do know in our area (new england) different practices have different characters, meaning some are more cutting edge. If you live in an area with much choice in endos you could ask around.

 

At the big Children's hospital where my daughter was diagnosed, 6mo-a year was the standard. When we requested a pump at my daughter's first follow-up, we were told that pumps were never prescribed to honeymooning children. I had a stack of research with me from Europe that said otherwise, and it was not well received. We found a local doctor who supported pumping as soon as parents and child felt ready and switched to his practice. My daughter started pumping just shy of 5 months post dx, and was using a cgm a few weeks prior to that.

Recently, there was a study in the US that also found pump starts at dx prolongs the honeymoon and helps maintain a lower A1c:
http://forums.childrenwithdiabetes.com/showthread.php?t=72683

 

My daughter wanted a pump ASAP. We left the 1st practice for many reasons but one of them was the requirement to attend pump class that was scheduled once a month, but was arbitrarily canceled the month we wanted because apparently only one person could teach it, and she was going on vacation. Yale lets us do all our pump training at our home with the pump company rep. They almost made us come in to do the Omnipod training but we live almost an hour away and they were very nice about it. and let us just do it at home even though they were as curious to see the new size of the Omnipod as we were. We did have to wait six months because of insurance, she was pumping seven months after diagnosis.

 

We were pumping at 3 months but had to appeal our insurance denial for that to happen! I was told that the medicare standard for allowing a pump was 6 months, and that's why we were automatically denied. As others have said, the Honeymoon excuse makes no sense to me! On the contrary, having the ability to be more flexible with basal rates is helpful in a honeymoon period in my opinion!

 

5 months (because my husband was a holdout!). We were given the literature at our 5-day-after-discharge endo visit, and we were told that the timeline was our choice. If DS had been 2 years older, he would have likely left the hospital with his pump.

We also had no pump classes, no saline start, and no instruction on carb counting (we were on a very loosey-goosey version of NPH and a sliding scale until then). I don't think our experiences are typical, though!

FWIW, I don't subscribe to the belief that you have to learn to do diabetes care with syringes/pens first. A person with half a brain can figure that stuff out if and when necessary, especially with the help of his or her clinic, and while the pump does the math for you, there is no reason why you can't learn to have carb ratios, correction factors, etc. in the back of your mind to double-check what the pump is doing.