no confidence

[Reagan's Mama]

So the nurse that started Reagan's pump called this evening to see how things are going.

He said that he couldn't believe that they told me yesterday to lower her basal!

We changed everything back to the original numbers tonight when we changed her site.

Who am I suppposed to trust with my daughter's health if I can't trust all members of the Endo team?

They have it set up so that you can't call and specifically ask for one nurse. I guess I will rely on mine and Dh's gut feelings and what I can learn from here for the most part.

I am feeling pretty helpless tonight. At least her numbers were back in range at post dinner check. We will see how many lows we have tomorrow.

[Kaylee's Mommy]

We run into this same problem at Kaylee's Endo office.. I try and call the DE because she is the only one of the nurses (actually not tech. a nurse, but still) that knows really about the pump.. the nurses do not.. they know about injections but nothing about the pump.. so I always call and ask for Laurie.. sometimes I get her and sometimes I don't.. but some of the nurse have had me completely change things that made no sense at all.. and I KNEW they didn't make any sense, so I didn't make the changes and called the next day to speak with Laurie.. they have it set up too if you call it goes to the first nurse available.. and I don't like that.. ireally wish they would assign people nurses so that they can get to know your child.. I know its impossible to get the same nurse all the time, but for the majority of the time it would be a benifit.. as you get use to pumping you and you DH's will get to know how things work and to figure out where you need to make changes.. and now I actually make my changes if I know where they need to be made and then call and let them know.. sometimes the nurses will ask why I changed it and i just tell them the reasons why I changed it.. I don't think they like that very much.. there are other times that I will talk to laurie will come up with a plan and then in a day or so I'll make the change call and let them know what I did.. and they still wonder why I didn't it on my own.. I just tell them that we've already discussed it..

Laurie is very happy that we are confident in making most of our changes.. you need to rely on yourselves.. so if you are confident in what needs to be done.. do it:) you know your daughter best and once you get use to the pump things will be al lot easier on you:)

[Momof4gr8kids]

We had the same problem at our old pedi office. It made it really hard when we would go for something sirious, and then we couldn't get back in to see the same doctor if something went wrong, or we needed it looked at again. If it was something that was urgent we usually had to see a P.A. and all calls were taken by nurses, and you never got the same ones.

Did MM set you up with a trainer to help you adjust basals, and stuff? Our care went through a trainer who we could call 24/7 with any issues we had. I liked that because we had the same person each time. All of the adjustments were ran by our endo the next day. Now we are able to make adjustments on our own, and are doing pretty well.

I hope you can get everything figured out. Maybe Carb ratio or basals need to be changed by a tiny ammount for a small time during the day rather then all the way around the clock? I know Julia tends to run highest at night, and then in the morning her basal drops down, then at 10 in the am her basal drops again, and rises again at 7pm for the time when she runs higher at night. I hear it isn't uncommon to have different basals set for different times of day.

Good luck, and big ((hugs)) to you all. Jamie

[selketine]

Your child is *very* young and you are still new to all the diabetes stuff so you do need some good assistance and people you can trust. I think it is o.k. not to like or trust everyone at the dr's office but find those 2 or 3 people (at least 1!) that gives good advice and rely on them as you learn.

I do think that your ultimate goal (not for right now but down the road) is to learn enough to make those adjustments for yourself. It seems some people have ped endo's that always want to know anytime you sneeze and others that don't need to know (I guess mine is on that end - we don't contact her with any changes unless we have a problem - we do discuss his rates and so forth every 3 months at the appt though).

I'll also add that I think there just are VERY few people who know how to treat really young kids with type 1. I don't know how much experience your office has with kids your child's age but those are the people to seek out. The others - although perhaps competent with older kids - will not immediately comprehend the special challenges of treating such a young patient.

[sammysmom]

we have "phone hour" everyday excep wed from 7-9am...a different cde answers ever day (they rotate..only 3 cde's)..we tend to only use one of the cde's there..sam likes him a lot and trusts him, i trust him to, so if i call and it is not him that answers i just ask to speak with him..if the other cde has a problem with that i always just say "he is familiar with our case" seems to be no problem at all....i also have the endo's e mail addy and cell phone for anything i may need..i tend to rely on the cde though........you have to remember that the endo team is not there to dictate to you..they are there to help you, and to do that they have to have a good realtionship with you....if that means relying on a certain nurse, than so be it....

shannon

[EmmasMom]

I completely understand your frustration! Our endo office is not pro-pump to begin with, and typically only allows much older children to try pumping. They'd also never had a child as young as Emma...ever. When we started her pumping at 14 months we got no help from them because they had no idea what to do with her. The nurse was too afraid to give any advice and the endo would ask me what I thought, or make a few changes that made things worse... very helpful!:rolleyes: I relied on the MM nurse/rep to get things started and anytime I needed help.

Have you uploaded to carelink yet? I think you can learn a lot by uploading and seeing all of the different graphs. Maybe it will help you decide where to start making adjustments.
I'd bet my MM rep would be happy to look over all of Reagan's numbers and graphs and see if she can help you. She has been a RN, CDE for years and has put many small kids on a pump. She also has a daughter that was dx'd at 3, so she has an unusual amount of insight. I'd be happy to call her and see if she can offer some advice. Just send me a PM!

[hrermgr]

How frustrating! Reading all of your posts really makes me thankful that my hubby has type 1 (okay not really--how can you be thankful that someone as diabetes but you know what I mean!) cause he knows SOOOO much and asks questions I would never dream of. I'm also glad our endo team is pro-pump and has experience with little, little kids on the pump.

Find the people you trust and keep working through them. And trust your gut. We live with our kids and their D every day so I think we do know best (most of the time!).