3.5 month CGMS update!

[EmmasMom]

Ok, I finally decided to do another update for anyone who's interested in our CGMS experience. Please feel free to ask any questions.

It's been 3.5 months now and Emma has only spent two nights w/o it, so that should tell you a lot!! Our results are still amazingly good, and I can't imagine living without it, it's very addicting! We're getting between 7 and 9 days per sensor.
It is a challenge to keep her skin happy and healthy with the extra tape, but since we keep the sensor in one spot for more than a week at a time the other side has time to recover. We are putting about 3-4 extra holes in her hips every month, so not too bad, but it does mean I have to be a bit more creative with infusion sites. I'm using her thighs a lot now and it leaves her hips for the sensor, so far so good. I switched to hypafix tape to cover the transmitter and sensor, it works great and keeps everything secure. The only downside is that it's really sticky and I have to use "remover" to get the residue off. Is doesn't irritate her skin, so that's good.
We did have to replace our transmitter two weeks ago, but MM had a new one to us in a matter of hours. No charge. Other than that we haven't had any technical problems.

Here are some random graphs from this week to show you how the sensor does with various kinds of blood sugar days. It catches and prevents lows like crazy, which is amazing and takes a huge amount of stress out of our lives!
In this one you can see the low alarm during the night, the high alarm at 8pm and then the sensor ended at 10pm and I re-calibrated and we were right back on track.
http://i117.photobucket.com/albums/o74/nabholmes/scan0005.jpg

This is a similar day, but one of the rare times she's dropped below 70, she was alarming from 100, but she had just eaten dinner so I was waiting to see what would happen... obviously she needed a smaller bolus, (I hate corn!). We lost communication with the sensor for about an hour after bed and I didn't hear the alarm, the baby monitor was turned off, oops!
http://i117.photobucket.com/albums/o74/nabholmes/scan0007.jpg
This is what I would consider to be a really bad blood sugar day, lots of highs but the sensor was all over it! The black squares are times that I input the sensor number into the bolus wizard to see if she needed any additional insulin. The circles are finger sticks. This was a bad site, but she was with daddy most of the day and he didn't pick up on it even with the sensor. Bad daddy! ;-)
http://i117.photobucket.com/albums/o74/nabholmes/rollercoaster.jpg

This is a DEAD sensor on day 7. I was trying to stretch it another day and tried to re-calibrate a few times, but I knew it was history. This is also a day that I changed her site right after breakfast and pulled the old one too soon, her breakfast bolus leaked out, as you can see it caused major havoc on her numbers! I just wanted to show what can happen when a sensor goes bad. You can see all the alarms, they are saying "Cal Error", and "Bad Sensor". The new sensor started at 10pm.

http://i117.photobucket.com/albums/o74/nabholmes/scan0008.jpg

That's all the pictures one thread can take, so I'll post again below.

[EmmasMom]

Here are charts of the two weeks prior to the sensor, showing a great average for her age, but a mild low almost everyday, some moderate lows and her numbers were still pretty much all over the place despite the good average. Her A1C was 8.
http://i117.photobucket.com/albums/o74/nabholmes/scan0003.jpg

Here are the two weeks immediately after we got the sensor. She happened to get sick during week two, her numbers went up and then she stopped eating for two days, then she was hospitalized and put on D5, (as you can see by the crazy changes in insulin doses and carbs), but even with all of that her numbers were much better and she had only one very mild low, (the low on 11/11 was an error from her laying on the sensor) truly amazing!!!!!!!!!
http://i117.photobucket.com/albums/o74/nabholmes/scan0001-3.jpg

Here is a good week. It doesn't look great, but this is what it really looks like to be in range 74% of the time.

http://i117.photobucket.com/albums/o74/nabholmes/scan0001-2.jpg



Here is a bad week, she had RSV and was running fever. Most endo's say if you stay in range 50% of the time, (during a complete 24 hour period) you're doing pretty good. Yikes! It's really scary to be able to see the reality of 50%!
Her average for this week is 208, which is considered acceptable for the under 3 crowd. This is why A1C is only a very small part of the picture!

http://i117.photobucket.com/albums/o74/nabholmes/badweek-1.jpg

[rickst29]

Nikos says, you'll get even BETTER life from the Sensors if you can keep the average bG lower a bit lower. He feels that with Minimed, they die (often) from "burning through" the supply of reactant.

I think your management is slightly odd-- but only if you TRUST that Minimed is catching the lows correctly. (Some people think that it's NOT as good at catching lows as the other one is, and so CHOOSE not to let it ever read below about 100.) You're showing numerous excursions near and above 300, but hardly ever a single minute below 70. If you trust this number, maybe try being a TINY bit more aggressive to control the highs, while keeping a VERY CLOSE watch on the machine to keep lows from "getting away" from you?

But YMMV! and you're the mom who KNOWS what was actually going on. I'm just guessing from hundreds of miles away, and your 'good week' was really outstanding! ;) Nice work!

[EmmasMom]

Thanks Rick,
I'm constantly trying to be more aggressive, w/o being too risky, it's a delicate balance. I don't thinks that's odd.;)
I think that for her age, insulin sensitivity (1:260), very erratic eating, constant growth hormone and endless illness...:rolleyes: she's doing pretty good. We're not supposed to go below 100 at all, and don't bolus until she's actually eating so the spikes are all but impossible to get rid of for now. I also have to revamp her basals and carb ratios almost every week at this point, managing a toddler is a completely different animal!
Her "desired" A1C for her age 7.5-8.5 and she was 7.8-8.0 prior to the sensor, I'm guessing our next one will come in in the low 7's with 1/10 of the lows. Our endo is pretty amazed at the results!

I'm not sure I understand what you mean about not letting it read below 100? I usually treat the low when I get the alarm at 100, (depending on our day I may adjust it), on the sensor and then test her, it's usually very close, within 10%. As you can see by the finger sticks they are right on the line. She never has severe lows anymore (knock on wood), so I think it's working quite well. Are you saying I should have the low alarm set higher?

I would like for the sensors to last longer, but since our insurance is covering them it's not the end of the world. I don't know that I can get her average much lower at this point, (she's averages 175-185 most of the time) so we're just going to have to deal with burning through the sensors.
If you saw what her graphs looked like last year you'd probably have a heart attack, toddler blood sugars can be horrifying!

[badshoe]

Very cool.

Thanks for the detailed review.

I think your numbers are impressive on the control front all things considered very useful tool.

[rickst29]

I'm not sure I understand what you mean about not letting it read below 100? I usually treat the low when I get the alarm at 100.
I meant exactly as you are already doing: alarm at 100, and treat right away when it goes off. :D

[Riley'sMom]

wow amy, this data is unbelievable! thanks so much for sharing all the info with us. my husband and i were just checking out all your charts, etc. that's amazing how emma can be in range for so much of the day now and it must be so nice to not be worrying about lows all the time! a couple questions- how do you insert the sensor? how painful is it, or is there no pain because of the emla? on average, how many finger sticks are you doing per day now? i thought from the graphs it looked like 5 or 6? we are working on getting riley (27 months) on a pump this spring, and all your info is so helpful! thanks so much!
jessica

[EmmasMom]

Hi Jessica,

Thanks! I'm glad the info was helpful to you!!:)
The sensor has to be inserted at about a 45 degree angle, and as you can from some of the pictures on other threads, the needle looks pretty big. It's exactly like some of the pump infusion sets, (that I don't like to use ;)), but it's really not that bad. I like to change it when her daddy's at home so he can help hold her since the angle and depth are important and I want to make sure she doesn't move too much.
We use a numbing cream called LMX4 and we use an inserter that pops the sensor in at an angle. It's very fast and once it's in she never complains of pain.
We are doing anywhere from 4 finger sticks in a really great 24 hours, to 8-10 in a really bad 24 hours. On average about 5-6 per day, which is a huge improvement from the 10-12 that we were doing every day before!!

Good luck with your pump process!!:)

[Kaylee's Mommy]

Those graphs are just way to cool.. oh, I so want one for Kaylee.. every finger poke is like a big surprise, we never ever know what we are going to get.. you could predict, but its typically wrong LOL..

Its so nice to see that she isn't having any sever hypos.. thats one of Kaylee's main problems.. and 1/2 the time she doesn't recognize them which scares me..

I have a phone consult set up with my dr for next week to discuss this.. I wonder if I should look into insurance coverage to see if they would cover..

do you mind if I print off Emma's charts, so I can show her endo? The charts are just awesome:)

Kim

[Sam's mom]

Thanks for all the info! I just ordered the CGMS on Wednesday and can't wait to get it!

I was wondering about the sites. Sam is 3 years old and has been pumping for 6 months. Our endo said the only site that we can use for now is his upper butt, hip area, because there isn't enough fat anyplace else (he is tall and thin). Needless to say, he is a mess back there and I am a little worried about putting something else into him in the same area. I am putting neosporin (sp?) on him when I remove the old site and some diabetic cream but his skin has always been sensitive and still looks rough. Any suggestions?

Thanks so much!

[EmmasMom]

do you mind if I print off Emma's charts, so I can show her endo? The charts are just awesome:)


No problem, I hope they'll help!


I was wondering about the sites. Sam is 3 years old and has been pumping for 6 months. Our endo said the only site that we can use for now is his upper butt, hip area, because there isn't enough fat anyplace else (he is tall and thin). Needless to say, he is a mess back there and I am a little worried about putting something else into him in the same area. I am putting neosporin (sp?) on him when I remove the old site and some diabetic cream but his skin has always been sensitive and still looks rough. Any suggestions?

Thanks so much!

Congrats! I hope you love it!:)

What kind of infusion sites do you use? We use quick-sets and I've been using her upper thigh a lot since she started on the cgm. Ill put them anywhere that looks like it will accommodate the cannula, and since it's only 6mm it doesn't need much flesh. Since I've been using her legs her bottom is looking much better.
The new sensor and transmitter takes up about the same amount of "real estate" as an infusion site, but it will need more fat since it's longer and it has to go in at about a 45 degree angle. If you can find other infusion sites for the pump it will help a lot.
If you can't put the sets anywhere else you'll just have to really map out a rotation plan for his backside! Maybe draw a picture and number the sites, or always move a site over 1 inch at a time so the other hip has time to heal.
It will depend on how long you keep the sensor in, but since we're using it for 7-9 days on one hip, the other hip has time to heal from the tape. (I'm so glad the new one won't require much tape)
I try to slather tons of lotion on her every night to fight the skin irritation and I also use neosporin on the little spots. I don't know that there's much more that can be done...

Again, I hope it's wonderful!

[tracy]

Hi Everyone.

I'm new around here AND I have a question. How is it that some of you have toddlers on CGMS's? My son is three and I understood the FDA had not approved CMGS yet for young children. Are you all in trials?

Thanks.

Tracy
Mom to Ben-Bear (dx08/17/05, pumping since 11/01/05)

[EmmasMom]

Hi Everyone.

I'm new around here AND I have a question. How is it that some of you have toddlers on CGMS's? My son is three and I understood the FDA had not approved CMGS yet for young children. Are you all in trials?

Thanks.

Tracy
Mom to Ben-Bear (dx08/17/05, pumping since 11/01/05)

Hi Tracy,

We are not in a trial, I just insisted that Emma needed one, and our endo agreed to write the RX, (with some skepticism). I did a lot of research first, and let him know that I was aware of the limitations of the current devices, and that it was going to be expensive, but that we really wanted to try it anyway.
Emma is the only child in our pedi endo practice that wears a cgm, and our endo has been thrilled and amazed with the results. Hopefully he will be more willing to allow others to try it soon!

Medical devices and medications, (even many insulins) are rarely FDA approved for young children, because it's very difficult to conduct the clinical trials. They can still be prescribed as "off label" though. The Minimed Minlink CGMS is now FDA approved for children 7-17, so many endo's should be more willing to let younger kids try it out as well.

Best of Luck!

[psek106]

Hi and thanks for your notes! I just joined up 2 minutes ago and saw most of the CGMS under your name.

OUr daughter is 4 and was diag. at 17 mos. On pump for going on 3 years this January. (started 5 mos. after diagnosis).

Recently, we have been grappling with catching lows. They come extremely quickly and the CGMS would have been beautiful at catching them. We had to use the glucagon once in the middle of the nite. Basals are a moving target as you know with the growth spurts,sickness and change in activity routines.

After 2 attempts with our insurance (Cigna) still denied. Our dr. at Columbia Presbyterian in NYC has written the letters with our MiniMed rep. The 2nd try I added some mathematical facts showing avergages as well as the # of times she drops greater than 100 points in less than an hour.
Seems like the stories and worded paragraphs about impact of life and how the recent diag of Celiac didn't make a dent to them.

Their response was that it was experimental and that it can be handled with the finger pricks. I don't think it's healthy to test a child every 1/2 hour whcih is what I do at times but they seem to think so.

Can you offer any other info. that comapnies may be lokking for? Was there something in particular that pushed them over the edge to say "yes"

Thanks so much for all your help
sandra

[WestinsMom]

Amy, I have to say thank you, as your posts helped us before we got started! As a mom who has had a toddler with diabetes, you are doing an amazing job! Adults with type 1 just really don't understand HOW HARD it is! I am happy to be out of that stage.

I wish our graphs looked as good as yours! Of course, some days they do, but rarely! This device is amazing!

One tip I saw that we are trying: we put some vaseline on top of the transmitter to keep the tegaderm (or whatever tape is being used) from sticking so it would be easier to disconnect on day 6. I just tried it on day 6 so if we get to day 12, which I doubt, I will know if it helps.

Thanks for all of your input, advice and guidance. You were better than any trainer!

[EmmasMom]

Can you offer any other info. that companies may be lokking for? Was there something in particular that pushed them over the edge to say "yes"

Thanks so much for all your help
sandra

Hi Sandra,
It sounds like you've done everything to fight the insurance. Sometimes they just won't budge!:mad:
We have UHC and they seem to be the most willing insurance company to cover cgms at this point. They did deny us initially, but decided to cover the unit and sensors on a "single case negotiation basis", which means every order has to have prior approval... yuck! The good news is that MM will get the approval of each order for us, so I'm not on the phone for hours every week.

We did make a spread sheet that showed them how much money they were spending on 10-15 test strips per day Vs. 6 test strips per day and 1 sensor per week. I tried to show them why this was going to save them money now and in the long run. In my letter I really stressed that Emma had been hospitalized several times for ketones, (even though the visits were related to stomach viruses, and the cgms wouldn't have made much difference), and how much danger she was in every day because of her hypo unawareness, I also reminded them that DKA is the leading cause of death and hospitalization in children with D and that this could potentially prevent it.

I called often, faxed and sent appeals almost weekly until I got a response. This works for some, not for others, but it's worth a shot!

I wish you luck on your appeal!!




Thanks for all of your input, advice and guidance. You were better than any trainer!

Thank you!!!:cwds: I'm happy to be able to help, even if it's just a little bit!