need advice

[Mojo's mommy]

I need advice please...

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I am having issues with Courtney's school, I will try to condense this into a nutshell for you.

Courtney has been on the CGMS for about 2 months now and while I think it is wonderful from my stand point the school is telling me that it is not working as it should.

I always check her BS with a finger poke at meal / snack time and compare with what the pump says. The school (nurse) is adamant that there should not have to be any finger poking happening unless verifying an alarm.

My issue with this is..50% of the time the numbers do not match ! I know there is a lag and there is going to be somewhere in the neighboorhood of a 5 - 20 % difference but they are saying I am mistaken .

I am not at all comfortable with them looking at her # on the sensor screen and allowing her to bolus based on that alone.

Am I going about this all wrong?

Should I be going by the sensor # alone all the time except for calibrations and alarms?

Am I doing something wrong that the numbers don't match?

Let me know what you all do and what you think..Please

[Riley'sMom]

hi! wow that nurse has nerve! you are definitely right, the CGM number is never supposed to be used alone to give insulin/food. you are always supposed to do a fingerstick before doing any kind of treatment. that comes directly from minimed! i am guessing your daughter is the first student the nurse has had with a CGM? yet she thinks she knows better than you! how frustrating! if i can find anything written stating that (i am sure it is in the MM literature) i'll let you know!
as far as i am concerned with my daughter, the school should not be relying on the CGM at all.
good luck!
jessica

[sweetpea]

You should be able to go to Minimed's website and find information that supports your position. The sensors have not been approved to take the place of blood glucose testing. Your training manual may say something about verifying the blood glucose level prior to any treatment decision.

[Barry]

I'm not 100% positive, but I dont think the CGM systems are approved by the FDA for corrections and boluses. I dont think any of the companys can say anything different w/o risking some legal exposure. I'm I wrong?

[LJS118]

Sounds to me that your school nurse is trying to get out of doing her job. You have the final say in what kind of care your child gets not her.

[Heather(CA)]

I haven't read any of the other responses...But, I would calmly but FIRMLY explain to the nurse that it is NOT up to her how you decide to test your childs sugar...Right or wrong, it's not up to her...Your right by the way, as far as I know, the cgms is for watching trends and avoiding severe highs and lows...IMHO it's not accurate enough to bolus using just that number:rolleyes:

[Ali]

You are absolutely correct. I am an adult and have used CGMS. I never bolus, eat, or correct based on the CGMS numbers alone. I use it to give me trend information and I judge the numbers it gives me based on my fingersticks, what I know I have done relative to food and exercise, etc. Sometimes the numbers are very close between sensor and BG finger checks but just as often the difference-even accounting for lag time is off or even in opposite directions, so that I would never use it instead of a fingerstick. Even if your experience is great with the CGMS they do go out of calibration, they do go off with rapid changes etc. Your nurse is not well informed re the CGMS. You need to have her call and talk directly with your physician or your CGMS supplier to get the real information. Good Luck.

[Jensmami]

Maybe the online pump school can help here?? Tell her to check it out!

[Mama2H]

Your nurse is freaking retarded (sorry having a bad people day :( ) You never ever should dose, correct, etc... off of the CGMS.....says so right in the user manual AND in the FDA approval. Google "FDA approval Minimed" "FDA Dexcom" and "FDA approved continuous glucose monitor. One of those three will give you the FDA approval page that states that it is not for use in dosing or correcting. Also, I would call your Endo's office tommorow and ask for a letter, directed to your nurse, stating that finger pokes must always be done and that she is to take YOUR direction at ALL time. GRRRRRRRRRRR I am so sick of nurse's thinking they KNOW more about what we LIVE. k, I am off my soapbox now *blush*

[jeep_bluetj]

Your nurse is freaking retarded

lol... Funny, but true. Your nurse is freakin retarded. (And that's from somebody that DOES use cgms info for bolusing... But I'm just a bit naughty, not retarded)

Bottom line, get the Dr's orders to read "Parent is end-all-be-all on care." And tell the retarded nurse nicely that "Yes, I know the CGMS is outputting a value, check it anyway".

[jendean]

I am pretty sure that Wilf is right,
This is one of those times when you have to ooze with self confidence, stand tall, and tell that school that they dont know what the @#&^$%
they are talking about!
This is YOUR kid, and YOUR kids diabtes, and it does not matter HOW many kids they have dealt with, and WHAT they have done in the past, they will do what YOU say and what your doctor says to do, because they DON"T know, and they need to respect YOUR wishes.
Please, oh please, give them my phone number.... ;) I'll let them have it.

Nicole, (bad people day) It will get better. This time next week you will be lying in bed thinking about all the cool things that happened that day, and how much fun the kids had... :cwds:
(((((((Nicole)))))))))

[Riley'sMom]

sorry, not trying to take over your thread, but-
a couple previous posts referred to "your nurse is retarded." (sorry not sure how to cut and paste other threads)
not trying to make anyone feel bad, but as the parent of a child with Down Syndrome, i just had to point out those kinds of comments can be offensive. it just uses the word "retarded" in a negative light which may be hard to explain to our kids with DS when they are older.
again, not trying to point fingers or anything (and we were guilty of saying things like this before too), but the teachable moment just presented itself. it's just like when others make comments about T1 and we educate them, that's all i am doing...
thanks!
jessica

[Abby-Dabby-Doo]

Teri~
You've gotten some wonderful advice from prior posters. I don't know what stage you are with the nurse- if it's already heated, or if your still being polite.

I would simply ask her what kind of literature would she like for you to provide to prove your point for the safety of your daughter? You could very easily show her the FDA findings you can print off the internet, from the maker of the product-Minimed, or a letter from your doctor.

I guess what I would most remind her is that there is a lag time with the sensor, and a lot can happen with blood sugars during that time. It is strickly trend information!

Good luck Teri!

[momofphoenix]

We are starting a trial with the CGMS this friday and when I spoke with the pump/cgms nurse she said

Do not rely on the CGMS alone do a fingerstick to verify a high or a low!! any questions the school has call me and I will inform them that fingersticks are still needed. there is about a 20 minute lag time between a fingerstick and the CGMS

I hope you find a way to work this out with the nurse sometimes they can be such a pain... :D

[Mama2H]

sorry, not trying to take over your thread, but-
a couple previous posts referred to "your nurse is retarded." (sorry not sure how to cut and paste other threads)
not trying to make anyone feel bad, but as the parent of a child with Down Syndrome, i just had to point out those kinds of comments can be offensive. it just uses the word "retarded" in a negative light which may be hard to explain to our kids with DS when they are older.
again, not trying to point fingers or anything (and we were guilty of saying things like this before too), but the teachable moment just presented itself. it's just like when others make comments about T1 and we educate them, that's all i am doing...
thanks!
jessica

I appologize Jessica, that was not my intent in any way shape or form.

[Mojo's mommy]

After several phone calls, confirmations with Minimed and several meetings with the nurse that oversees our schools SEA's the decision is to apply for another 2 1/2 hours a week for Courtney's SEA so that she can be taken care of the way that I want her to be taken care of.

(ie) finger pokes before consuming/bolusing for food...supervision on the playground (from a distance) by somebody who knows what to look for and that has a source of fast acting sugar to give her right away.

There seems to be this great need for a 6 year old that has spent literally 1/2 her lifetime with diabetes to become self dependant. Yes, there is probably some truth behind that but she is 6, has just started grade 1 and she did not ask to be set apart from the other 500 kids in her school.I'm sure there will come a day very soon that she will be completely independant( I have 2 girls that are both teens) (non D but teens regardless).

This whole experience has just made me really , really sad...

There is enough worry in a day of D without putting them out there for a free for all :mad:

Thanks for all your support and feedback, very , very much appreciated:cwds: