Discussion in 'Parents of Children with Type 1' started by MamaTuTu, Jun 7, 2011.
I did all my pump starts in my living room
Our pump start was also at the hospital. We had to be there at 9:00 in the morning to meet with the CDE and Animas rep. That went on until about noon and then they took us over to our room at the hospital. We had to stay the night and got to go home the next morning after doing a site change with the CDE there. Our endo requires it, but I have found that it is very rare. We were also frustrated that we got our pump, but then had to wait about 2 months to get in for the pump start. Our endo only does pump starts on Mondays and we had to 'get in line.' It was frustrating, but the time went by fairly quickly and it gave us lots of time to study.
This is exactly what we had to do. I'm assuming we might be with the same practice as you are also in Virginia. It is a very antiquated way of doing things and I personally thought it was a total waste of time.
To the OP, you have the entire summer in front of you -- I would really fight to get the pump start sooner. As others have said, try to contact the endo directly and express your concerns. Good luck!!
Yes, I'm sure we are with the same practice. I also thought it was a waste of time, but not sure we could have gotten around it. It was a miracle that they let our then 4 year old get a pump, so I was willing to jump through just about any hoop at that point
It was going to take several weeks to get it coordinated for Hana's pump start (OmniPod). We first had to have the educator come out and show us how to use the PDM. Then she would come back a week later and get us started. I had promised Hana she would be on it by Halloween, and going by this schedule it would be several weeks after Halloween. Plus we were leaving on vacation.
I took her to Gary Scheiner (Integrated Diabetes and author of Think Like a Pancreas). We were up and running in an hour. I don't know what the whole prolonged process our endo's office required was all about. There was nothing complicated about it.
I think the CDE at our endo's office was a bit peeved about it when we went for our next appt., but I was trying to make things easier for my daughter. No reason to prolong the whole process.
You could contact Gary Scheiner. He can do it over the phone or Skype. You will have to pay for his service but it wasn't that much. He is very knowledgable about all the pumps.
I can't see if you say whether there will be a hospital admission or whether this happens on an outpatient basis?
I had my pump start at the hospital but as an outpatient - the appointment for my saline start was around 1 hour long and the same again for when I started on insulin. Everything's different in this country, though.. I probably had to wait quite a while longer than most people here.
We drove 7 hrs to the endo's office for a 2 hr class/written test that I considered to be a total waste of time & money. It was a barebones class (these are the different pumps available, this is an infusion set etc) which my insurance ended up not paying for. Two weeks later, with pump in hand, we met an Animas CDE at a dialysis center that was the halfway point between my hometown & hers, on a Sunday afternoon. She helped with the first set insertion, set all the basals & ratios in the pump (per the endo's orders), & we disconnected the site. At midnight that night, we went live with insulin. 2 weeks after that, we faxed our last logs to our CDE & received our last setting changes from her. We've been on our own (with a HUGE amount of help from another mom I met here & reading posts at CWD) since.
If the endo had even suggested a hospital stay for pump start, we would've been out the door for good. I could understand the requirement if there are other health concerns, but just for a pump start? No way!
We were approved for the pump at the end of December and went live in Feb.
We had to do some pre-pump stuff per our endo team.
Animas came to our home and trained us here, it was great.
Unfortunately, pump starts are slow to start up so to speak. Some offices train you as a group, others have certain criteria you have to meet prior to your saline start, others, but not many do hospital starts. It all depends on your practice.
Talk to your practice and explain you took time off from your studies so that you could get your child up and running without any stress.
We started the pump in the CDE's office. She set an appt that took most of the morning, got everything set up in one appt, then came back a few weeks later and started him on it. I knew enough about it after trying it with saline (she put it on me with saline at the first visit, and allowed me to put a site on him with saline at home) that I almost would've felt fine starting him on it at home, but only almost.
If it were me, I'd push to get started sooner than later. You'll want a little while for both of you to get used to it over the summer (not to mention that's two months less of dealing with shots!). We started about 2 weeks before the end of school (long story) but it went fine. Our pump transition couldn't have gone more smoothly, though. Not everyone's transition is so easy.
If you can prove that you are very knowledgeable in D care, and bring up all the benefits of starting sooner (learning over summer instead of during school, less shots, etc) maybe you can convince them to let you start in the CDE office or even at home (with the help of a rep?). That's way too long to wait to start pumping.
Good luck!!! I'm so excited for you. DS has been pumping for a month and we love it!
Initial pump start with very first pump was in endo's office. The next two trainings were by the pump company trainer at our house. I would speak to your endo and say you want the company trainer to train you at your house. I would say the max wait for that would be a month.
We had an all day pump education at the endo/Children's Hospital, and went home with it on. The pump educator was great in keeping in close touch with us whenever we needed it for the first couple of weeks (adjusting basals, etc), and the transition really wasn't to scary!
Maybe with your child being so young they want a hospital stay?
Stephanie, Mom to Jacob, age 9
Dx since 2005, pumping since 12-10 with MM
After throwing a huge fit to start pump in the summer than in the school year, and fighting with our Endo because my son hadn't been D for a year yet We had to do a pump class where we learned about the pumps, got to put a site in and go saline for 7 days, then mail that pump back. We then had to do a 5 page test (most crazy stupid thing I have ever seen) and mail it back in. Then when we got to order our pump. We had to wait for a time to go in and sit down with a CDE and get hooked up. We had to call in every meal for 2 days, then once a week for 2 weeks.
Our CGM start...I called said I wanted it from our Endo. I called the company said I wanted it and did all the info over the phone. Mind you we had to pay out of pocket for it. We got it in the mail about 1 1/2 weeks later. A rep from MM met us halfway between at a McDonald's...YES...McDonald's and showed us what to do and she popped a sensor in my son. It wasn't ideal, but we had to have a training...
We were told that our endo's practice does all pump starts for those 6 and under at the hospital. DD was admitted for "observation" for less than 24 hours (though we were actually at the hospital more than 24 hours.
We were required follow the endo's procedure for the pump start -- I can't recall exactly what training was required, but I think that there was at least one class. We went to the hospital on a Friday for a saline start and then the following Monday went back for the insulin start.
Although we probably did not "need" to start in the hospital, I was so impressed and pleased with the top-notch CDEs who assisted at the hospital and after, that I actually skipped the post-pump endo appointments in favor of follow up appointments with them.
we met our Medtronic trainer at a public library as we are 2 1/2 hours away from the Endo. We went straight on to the pump. We did have to go through hoops first(with endo CDE), including a pump "test" at the pump class but this was 1 on 1. We also had to SWEAR not to start the pump ourselves, which we didn't. We followed up with the trainer for 2 weeks then back to adjustments with the endo and then one more follow up CDE class. The only thing we paid for were the classes with the endo.
Our pump start was at home with an Animas Rep who is a CDE. She came 250 miles to our house for the initial training and hook up to the pump with saline, stayed the night at a motel in the next town over, came back the next morning for the actual start with insulin and then called every day for 2 weeks.
We went to something like a diabetes center for all the pump stuff. I don't think we could have done a pump start in a hospital. Charlie still had a fear of hospitals and most doctors when he was 3.
We met with CDE, went over everything he/we needed to know about his pump, she asked a lot of questions about basals and boluses, food,etc. She told us the setting we should start with and we programmed his pump, then we went home.
We spoke with her closely for the next week - making adjustments, etc and we did wonderfully. Maybe the hospital start is due to age of the child? Jordan was 14. ????
Do you know WHY you have to wait so long? We had the pump for a couple of weeks before the CDE came to our house for an orientation and saline start. After a week, we went to her office to start insulin. After that, we were on the phone almost daily for a week, and then very regularly for a month or so.
As far as her lows go, if they are at the same time each day, I would just talk to the endo about making an adjustment...maybe she's just getting too much insulin at dinner?
You should continue to try to do what you can to get an earlier start date...you received lots of good advice here. However, remember you are still oh so new to this. Your emotions are still raw from the dx...regardless of your pump frustrations. The pump is a wonderful thing...but try not to see it as the solution to all of your D problems. It's not...and it does take time to get to a good place with basal/I:C and other rates. You may have some other frustrations ahead. I know it's so hard to give those injections constantly and you were both looking forward to giving them up. I certainly hope you can do it sooner than later, but, if you can't...please hang in there. I know you don't want to...but you will be okay with MDI for a little longer if you absolutely have to. We did shots for a year, and it does get more routine for everyone.
I'm so sorry for your frustration and understand your anger. Hope you're successful in finding a way to start sooner. It will be worth the wait in the end!
I wish our pump start had been as easy and uneventful as our CGM start! We ordered the Dex, sent in the records required, and had it within about two weeks, IIRC. I put one on J that day after watching Youtube videos and reading all the material in the Dex package.
Our endo wanted to do the pump start in the hospital since she was so young (3). Our Animas rep fought it tooth and nail. She felt the artificial and scary environment would not give a true picture of anything. She did all the training. I think it took about a month from order date to pump start.
As another poster mentioned the pump doesn't fix everything. I was ready to run over the thing with the car more than once the first few months. It was definitely a love/hate relationship.
Separate names with a comma.