I don't want to wait!

[5miraclez]

I know my daughter has only been diagnosed for a week but I don't understand why we have to wait to put her on a pump.

I have been pumping for 16 years so I like to think I know what I'm doing. When my dd was diagnosed they only kept her overnight then sent us home because they said I knew what I was doing and there was no reason to keep her. Well, at that time I asked the Dr. about putting her on a pump and she said that my dd was a good canidate for a pump. She also said we would have to wait for the honeymoon phase to be over. Not knowing how long a honeymoon phase could last (I was diagnosed at 2 and don't remember) I didn't say anything more about it.

Well I called down the other day to give them my dd's blood sugars and I then asked about the pump. The nurse informed me that I would have to wait. That I would have to take a class and do a trial run and that they just don't put kids on pumps until they've had diabetes for at least 6 months. When I questioned her as to why she said that kids just need to get used to taking shots first. WHAT?!? WHY??

My dd takes her shots, she takes 6-8 shots a day and often won't eat because she knows she'll have to have another shot if she does. When I told the nurse this she just said "well she'll eat when she gets hungry enough". THey obviously don't know my dd. She only weighs 32lbs and is 6yrs old. She has gone days without eating because it wasn't what she wanted. I finally resorted to pediasure because she wasn't eating. We finally got her to where she was eating 3 meals a day and then this hit.

Am I just being stuborn to want this for my dd? Is it really too soon? I don't see the Dr. until January and was really hoping we could at least order the pump on this years insurance. Should I ask for another Dr? My brother is a Dr. would it be ok if I had her take over her care or should I really stick with this ped endo?

I can already tell that the lantus isn't working for a basal since her basal needs to change throughout the day. The Dr. also said not to have her take shots at school and to just correct when she comes home, well she is coming home and her sugars are around 300. This just isn't working for me.

[Momof4gr8kids]

It seems like you know what you want, and you know your options. My advise would be to do a saline based on the fact of what are you going to do if your DD has a problem with keeping the infusion site in, and letting you put it in. Since she is having such a hard time getting stuck with a smaller needle she might have even bigger issues with the infusion set. If the saline trial goes well for her, and she likes it then I would say get the pump.
If you don't feel like you are getting the care you want for your DD then yes, change doctors. If you feel like it is something you can work out, and that care is good stay put. Both decisions are totally up to you, that is just my advise. Good luck deciding what to do. Jamie

[zeb'smom]

I am in no way qualified to truely answer your questions, but in my mind your family seems the perfect candidates for pumping right away. Are there any other pedi endos in your area? If so I would speak to them and see if they may be open to starting your dd pumping right away. I can understand why they typically like to wait with young kids, but yours does not seem the typical situatuion and therefore a little flexibility seems in order.

Good luck, I hope you are able to find a doctor who is willing to work with you.
Robyn

[selketine]

I think I would make an appt with the pedi endo directly or talk to him (and not the nurse) and ask about the pump. The nurse sounds like she is giving you the standard line.

At that age I don't think I'd want her running so high in the afternoon either. There is no reason to wait for the end of the honeymoon to go on a pump. It is much easier to raise and lower the basals for the honeymoon if you are pumping.

I think if they are not open to looking at the pump sooner than later - considering your experience with type 1 and pumping - I'd look for another doctor.

[Twinklet]

Our Endo puts people on pumps as soon as she feels they're ready. She told us that studies show pumping actually prolongs the honeymoon period. You might want to do a search on this and if true, present this information to your child's doctor.

The only time constriction we ran in to was that our insurance company required 60 days worth of blood glucose values before paying for a pump, so we couldn't have received it sooner than 2 months after diagnosis.

[Hollyb]

I think Ellen just posted an article somewhere on this site about a study looking at putting children directly on a pump after diagnosis. If you can go to your doctor with some research showing that this has been successfully done in other places, maybe you can persuade him.

I've never understood the "wait until the honeymoon's over" thing. I do understand wanting to be sure people are proficient about counting carbs and diligent about testing first, but you've already demonstrated that in spades!

[Ivan's Mum]

They do the same thing here in New Zealand. Yes Ellen did post something on it and I copied it to a file so if you don't findit, let me know.

I would suggest if you know what you want- that you change endos. I don't know the situation in your country re insurance but you still have the right to change. It's not like she's going to learn to do her own shots so why not get started... there's nothing girls like more than to be like mummy.

Best of luck what ever your decision. If you do find further information about prolonging the honeymoon with pumping let me know as I posted a question about it a few months back and didn't really get any info.

[iamslh]

My daughter was also recently diagnosed, but she is not yet taking insulin with meals. Her doctor and I have talked about when she needs insulin with meals, and decided that we would do injections only for as long as it took to get a pump on our doorstep. I have been pumping 11 years, so a similar situation to yours. I don't even know how lantus injection therapy works! I used Lente! (do they even make that anymore? ) I think that if your doctor's office isn't willing to make that jump with you just yet, is there another pediatric endocrine clinic in your area that will?

[muddymessalonskee]

...what a frustrating situation. Why should your daughter have to "get used" to having shots, if she's going to be on an insulin pump? Why should she wait at all, if you've been pumping for years? Sometimes I wonder what's in these people's heads. Our endo doled out information in little bits here and there: we weren't given the option of using a pen rather than syringes for a year, and the pump wasn't an option for four years, even though Alex's basal requirements are not met by Lantus.

Deborah

[pookas]

Our endo had us wait at least 6 months so WE could get used to the carb counting and he could be ok w/ the shots in case of pump probs and have to get a shot, BUT in your situation, you alerady know about the carbs and stuff. It's our endo's standard prcatice and we knew nothing about D. I did see that article that Ellen posted. It should only be about a day back. Sorry you're having a frustrating time. Hope it works out for you.

[Kaylee's Mommy]

When Kaylee was first diagnosed I asked about the pump at one of her appointments, they told me she'd have to be dx for at least 6 months, most have to be a year.. I was all set to head to Joslin to get my way...I kept talking to her endo and DE.. we were having issues with her because she required little insulin, but many times through the day.. try and get a 1/4U in a syringe, doesn't work very easily LOL.. so.. I then brought up diluted insulin.. my endo does NOT like diluted, and we came to the fact that SOMETHING needed to change, because we were having to wait until K was over 400 to correct with a .5U or she'd crash.. she'd often be in the 300s.. so the endo said that she'd rather see her on a pump than on the diluted insulin.. K was approved for the pump within 4months and pumping before 6months.. If what you are doing isn't working and the endo is not listening, I say yes, change drs.. obviously you kNOW what you are doing, and while you should know how to do things without the pump(which you obviously do) there is no reason why you can't go to a pump quickly..

I am so happy to have K on the pump.. it has its disadvantages too.. but her A1cs went down 1 whole point at the 3month mark.. made me very happy:)

GOOD LUCK!!:)

[5miraclez]

Thanks everyone. As soon as the holiday weekend is over, I'm going to make a call to the Dr's. I have already gotten approval from the insurance company to get me a new pump and get her one. We have to come up with the 20% but I'd rather do that this year while we have met our deductibles than have to pay even more next year (our insurance is going up).
They want me to go to a "Class" on diabetes Dec 1 to learn more about carb counting and how to adjust her insulin. I feel it's a waste of time and waste of money. The endo's I used to see were never any help. I knew myself better than them and the only reason I ever went to see them was to see what new stuff was out. There are just things you learn from having diabetes for so long that no amount of schooling can teach.

I haven't found the article yet although I think I remember reading something about it before. I also read something about how having to give shots instead of using a pump or something like the insuflon, doesn't help people overcome the fear of needles. I wish I could find that article too.