Monday, December 24, 2012

Technology Only Gets You So Far: You Can Bring A Horse to Water...

So my daughter has been wearing the Dexcom Platinum G4 for about a month. It is SO nice to have her numbers, but it hasn't improved her memory. It is better, but she can't remember to take insulin before, or sometimes even after, she eats. Dude. What do I have to do? She has a thing buzzing at her to remind her! Ahh! 12.

Merry Christmas and Happy New Year to all!!

Tuesday, December 4, 2012

Amazing! Love Dexcom G4 Platinum

Anyone who has followed my blog for some time knows my daughter, 12, has T1 and refused to her core to wear a CGM. I forced the Minimed one on her in 5th grade for exactly one week and she promised me to never, ever wear it again. It took me an hour and a half to get the thing on her and the only thing that worked was a threat that she could not attend a birthday party until she had it on.

The threat worked, but I did damage. The whole, "this hurts me more than it hurts you," may not have been true. It broke my heart. Here I had in my hands THE thing that could make my life easier as a mom of a child with T1 and she didn't want it. She resented me forcing it on her. It also hurt.

Well, she is in 7th grade now and this morning her blood sugar was 135. In fact, in was in that range all night. I checked it by rolling over and looking at a hot pink Dexcom G4 Platinum Continuous Glucose Monitor!

My daughter and I were headed out of town Friday with her best friend. We planned to leave at 4:30 p.m. and she got off the bus at 4:00. She hopped in the car and I handed her the already charged receiver and she thought it was too cool!

I had everything ready to go to put on the sensor on and was all smiles when I said we needed to get it on before her friend arrived at 4:30. We danced in anticipitation for about six minutes, but I didn't lose my cool. I stayed smiling and encouraging and finally she said, "Just do it!"

I counted to three, pushed the plunger, pulled back the collar to remove the needle an carefully removed the inserter from the sensor base. Putting in the transmitter is awkward and was probably the worst part, because you have to push down hard to get it to click twice into the sensor base, but she was OK. We agreed, that was indeed the worst part.

She and I were both surprised that the transmitter is so much thicker than the Dex Seven Plus. Really, it is tall, but right now, in winter, it isn't an issue, but come summer, we are going to have some issues I suspect.

Anyway, we hit the road and she calibrated in the car two hours after starting the sensor and about an hour from our destination. Interestingly, her first BG check was 237, so she entered it as one of the first two calibrations. Her next BG was 135, so she entered that. The receiver asked for another check, thanks to the wide disparity, so she checked again and it was 132. The calibration took! I think the Minimed would have just said Cal Error and I would have had to wait and try again later.

Spending the night at my sister's house was to be the highlight of our trip. I was going to stay with my mom and my daughter and friend with Aunty, Uncle and baby. Her first night, my sister was up with the baby at 5:30 a.m. and she heard this crazy beeping. She text me to ask if she had an alarm set, but I was zonked out. She finally went in to investigate the sound and found her Dex buzzing and beeping. It said LOW in red letters, 55. My sister had trouble waking her up, but finally got a glass of juice in her. I am SO grateful! So, so grateful!!

It has been within 10 points accurate and is supposed to be stellar from day four to seven.

I asked my daughter last night what she thinks of it so far and she said she loves it!

More later about the pros and cons. I downloaded and used the software, have issues with the alarms and the transmitter size, but need a few more days to evaluate. For more info, read Kerri Sparling's blog Six Until Me for her first and second impressions of the Dexcom G4 Platinum.

Sunday, November 25, 2012

Adolescent Needs: We're moving on Minimed to Dexcom G4 Platinum

I'm buying the new Dexcom G4 Platinum Continuous Glucose Monitor (CGM) this week. I've been waiting on the Minimed Enlite Sensors to get FDA approval, but my daughter (12) and I can't wait. I am floored by the changes her body is going through and how that impacts her blood sugars. One thing I know, she needs the latest technology available TODAY. I don't even want to wait for shipping.

I was up at 3:00 a.m. last night as her blood sugars have been near 300 for a few days. I keep bumping her basal to 120 percent, but last night, she was 275 after adjustments and I overrode the adjustment my a unit and set the temp basal at 130 percent. Then went back to bed and said a little prayer that it wasn't to much. She was 120 when she got up.

I've been sitting and waiting for the Medtronic CGM, but the FDA is too slow. I actually wrote a letter to President Obama with tears streaming down my face asking him if he could put a bug in the FDA's ear to hurry the hell up! It was more polite than that. I know it was going to fall on the desk of an intern, but as a mother, I have to do everything in my power to protect my child, so I'm buying the Dexcom G4 and she actually said YES to wearing it. YES!!! She called it "her CGM" the other day and you have no idea how big this is for us. She wants it!

I can keep this by my bed and if my daughter's blood sugar goes low or high in the night I'll hear the alarm! It was 20 foot range! I won't worry in my sleep anymore! I'm going to keep all alarms off and download nightly to see what she needs, but I don't want it interrupting her in school. I just hope she'll look at it once in awhile. I'll update when we have it, but I can tell you that I'm happy! The Dexcom Seven Plus works great. I just really dislike having an extra device to carry around.

Saturday, October 13, 2012

Medtronic Survey of New Pump Style Options

So, I got an email from Medtronic Minimed yesterday to take a survey. It was supposed to take 25 minutes, so I as hesitant, but decided to go ahead and do it on my smart phone. I couldn't believe my eyes and I am SO mad I didn't take the survey on my desktop so I could capture some screen shots, a task I have yet to figure out or need on my phone. Anyway, the survey was comparing four different styles/functions of pump/Continuous Glucose Monitor (CGM).

There were technically two styles, but one offered artificial-like pancreas functions and one was just a pump with no CGM options, which just seemed weird. They both offered color screens on a remote control to manage pump/CGM functions. One was a rectangle about 1 1/2" x 2 1/2". It sat on a baseplate infusion set and had a "pump" with 200u of insulin inside. This affixed to your skin directly via the base plate infusion set. You had options to bolus from the pump directly, but there as no screen, so probably just an audible system. This would come in handy if you left the remote at home and were out.

The second style was a 2" round disc. It also had an infusion set that went with it and looked like the ones now, but the disc was a pump that held 300u of insulin. The pump could also be affixed directly to your skin or you could clip it to your belt, put it in your pocket and maybe your bra. It had no function for bolusing on the pump, but shared the remote shown with the other one.

The biggie deal here was when selecting which ones you liked best, it was clear they were trying to see if you were really interested in a CGM based artificial pancreas, because the questions said the pump would cease insulin delivery if blood sugar dropped below determined levels, or would correct for high blood sugars if it went above certain levels. The options given were one step beyond the Minimed 530G, the American version of the Veo.

So, while anxious to just get the 530G and the Enlite Sensors, this is exciting stuff. I was really confused why they would ask if I preferred a pump with a CGM that could shut off or auto bolus vs. a pump with nothing but a remote. Dude. That is so Omnipod!

Tuesday, October 2, 2012

One Last Idea on Manual Insertion of Medtronic Minimed Enlite

OK, I'm going to try one last time to get a sensor on manually and I think I might have an idea about how to fix this. I have been flattening my skin to make it more taught, like I do when I put on a Quickset infusion set. I think that could be my problem; creating too much resistance for the spring loaded needle.

I'm going to try to squeeze up a pooch of skin, so it is softer and squishier. Maybe that will allow the needle to slide in more effortlessly and not trigger the release of the needle. Wish me luck!

Oh! Someday these post may be relevant...when we can actually buy these in the U.S.

Just sayin'...

Monday, October 1, 2012

For What It is Worth, I Asked the President for Help

Tears streamed down my face this morning as I wrote a letter that will be read by an intern and probably never be seen by anyone who could offer help. I had to try though. Maybe if I write every single day, the White House can knock on the FDA's door and ask them what the hell is taking so long.

I simply can't understand. I won't understand how a product being successfully and readily used since 2009 in Europe, can take so long to approve here in the US. What is WRONG with this picture. And, when it is finally approved, American's will be falling over ourselves thankful to have four or five year old technology. I certainly don't blame the President for this, but I do think he could help. Just asking the question, "What is taking so long?" and "When is the Medtronic Minimed VEO and Enlite Sensor being approved and made available to Americans." It would be nice if there was a question about what the hell took so long, but I'm not picky. I just want this pump and CGM for myself and my child.

My frustration is palpable. My desire to take care of my child and myself with the most comprehensive technology available is beyond words. My anger that I can't have what has sat on market shelves for more than three years in Europe literally brings me to tears. Problems this illogical really get to me.

So, I better get to work and hope that someone is doing something out there for the millions of people living with this disease. Something beside making another stupid glucose meter in a new shape or color.

Manual Insertion of Enlite Sensor...Fail.

I have only found this video online and not one single set of instructions for manual insertion of the Medtronic Minimed Enlite Sensor. The video is helpful, but I have found that on my adult skin, her technique was just not that simple. Repeatedly the needle would spring back into its holder as I plunged it into my skin. She does not show the insertion, but does a good job of explaining her process, however, since I have only had success with one sensor manually, I'm pretty frustrated.

Does anyone in Europe have the instruction manual and does it offer a manual insertion technique? What if you were traveling and left the Serter at home? There must be a way to do this without launching the needle back into its casing. I'm not leather, but I do think that a two year old might have the softest skin on earth. So, if any of my European friends who have the Enlite can share their experience, please comment.

My daughter is 12 now and I am watching her blood sugar spike for reasons that can only be hormonal. It is hard to manage. I can't be with her or monitor her anymore. Some days she has band sectionals at 7:00 a.m. and doesn't come home until after a volleyball game at 7:00 p.m. I sure would be nice to have this CGM. Seriously, what is the deal?

Really, an expert advice from lucky folks in Europe, would be appreciated!

Wednesday, September 12, 2012

Bayer's Contour Next LINK Meter Now Medtronic Standard

Looks like Medtronic is moving from the One Touch Ultralink to the Bayer Contour Next LINK I used in the trial! According to medGadget, it will now be the Medtronic standard, even shipping all of us the new meter. I want to thank for linking to my blog post on my meter use during the trial!

As I mentioned in my post, I liked the meter. It was a nice change from the boring, no-frills Ultralink, but I have about a million One Touch strips to use up. I'm trying to be patient, but it isn't the meter I want, its the Enlite Sensors. Happy for the new meter, but let's hope it is the next step before releasing the Enlite!

medGadget posts meter benefits as:
  • Enables fast and easy bolus dosing and continuous glucose monitoring calibration
  • Pass-through feature allows for easy downloading to Medtronic’s convenient online CareLINK software, replacing the CareLINK USB device
  • Bayer’s No Coding™ technology makes testing easy by automatically setting the correct code each time a test strip is inserted
  • Easy-to-read display with large, clear numbers (my favorite feature and the only thing "new" enough to matter)
  • Fast 5-second countdown and small 0.6 μL blood sample
  • Optional pre- and post-meal markers with audible reminders
This isn't a revolutionary product, but it is much more pretty and readable!

Here is the news release from Medtronic, posted on Tu Diabetes by Emily Coles.

Playing With Leftover Medtronic Enlite Sensors

So, I found another Medtronic Enlite sensor from the trial I packed up for a trip I took this summer and I have been playing with it a bit.

First, I had to insert it manually and this is much more difficult than it looked without proper instructions. But I got it and have worn it for nine days. Shhhh! Don't tell anyone. I'm actually going to restart it again this morning and see if I can sneak another three days with accuracy.

I am of course, using my old Medtronic Minimed Revel 723 pump, so it thinks the sensors end after three days, so I have to restart each time. At the end of the sixth day, I disconnected the transmitter and charged it, then reconnected it and started it like a new sensor. I got three more days, so now I'm going to try another restart and see what happens.

I'm so desperate to keep these sensors, I want to stretch them as LONG as possible. Over the trial I wore a sensor every single day and got mighty used to always knowing my blood glucose. I have grown reliant to the alarms to tell me when things are awry, so not wearing it creates a problem. I stubbornly refuse to use the harpoon sensors, but may be forced to if the FDA doesn't get its a** in gear and get this approved.

I'll let you know how it goes, but I want to be clear, I am stepping outside recommended protocols for using this sensor. I don't recommend doing this. I simply have nothing to loose as the end of my sensor life is very near and I want to see how long I can stretch it with accuracy!

Saturday, September 1, 2012

Medtronic Enlite Trial: Over and All I Got Was Deep Longing!

The Medtronic Minimed Enlite Sensor Trial was great, but I am truly missing the whole set up. I did have a few sensors I found tucked in a suit case after my trip and have tried to insert them manually, but it is HARD to do it well. So I lost one, feeling like an idiot, and am wearing one now. I've had it on for 9 days. Shhh! Don't tell anyone.

I am wearing them with my old transmitter and when I say old, I mean old. Like 2009, old. But it works well, I just have to restart the thing after three days (I'm back on my pump that doesn't know they new sensors work for six days without restart). At the end of day six, I unplugged the transmitter and charged it, then plugged it back in a started over. Seems to be working very well.

To wrap up my thoughts about the Enlite Sensor:

1. It is simple and painless to insert with the serter. Harder, but not impossible manually.

2. Six days works great and I am certain you could try for more, but that would be a personal choice because this would only be approved for six day use.

3. The accuracy is spot on. Seriously. The variance I see with my harpoon sensors can swing, not wildly, but with more frequency. This Enlite is accurate with very minimal issues. I did have some, but they were temporary and fixed with calibration. One time I had to End the Sensor and restart, but I think that was somewhat a user error issue.

4. I want it for me. I want it for my 12 year old daughter. I want the MySentry for both of us. I want it now.

I can't understand what takes so long. This product has been available for three, going on four years, in Europe. New pumps are being released by small companies with better looks and cooler UI, but I want this. It isn't fancy looking, but it works. We can blame the FDA, but I blame Medtronic for not starting all this sooner. They move much too slow and the FDA brings progress to a trickle.

I am optimistic. The time is passing the same as ever, but I have worn this CGM since April with few breaks and I now rely on it to keep me safe. I can be a mom, focus on my child's care and not worry about myself. If there is a problem, it will be and I love the beeps are minimal.

Friday, May 11, 2012

Medtronic Trial: Enlite Sensor Questions

Still a little bummed I didn't get the Minimed Veo, but I've been thinking more and more about the Enlite Continuous Glucose Monitor Sensor and what it's introduction might mean.

Well, it would mean freedom from harpoons, but really, technologically, it would mean a pump upgrade. Rumor has it they would use the Revel in the US, not the official Veo from Europe, but that wouldn't mean we get to keep our current Revel model.

The current Revel's are programed for the Minilink CGM with a sensor life of three days. The Enlite is six days.

Also, I wonder if they will upgrade the transmitter technology. I'm not thinking so, because I still have issues with weak signals on my trial version. I really need a new transmitter for my personal system, but I don't think I want to upgrade until all of this stuff comes out.

While I totally appreciate the trail on the Veo, and I want it bad, I more than anything want the Enlite sensors for me and my 11 year old. However, I just bet the next major upgrade offered is a combo of a new "Revel" (with Low Glucose Suspend) and the Enlite together. I guess I initially had this thought that I could just order new sensors when they came out, and maybe a new transmitter for extra juice, but that is pretty wishful thinking.

I have amazing insurance (my husband works part-time for UPS and coverage is KILLER), so I'm actually not worried about cost, but this might mean we have to wait for both to be FDA approved, which scares me. I'm eternally sick of waiting on the FDA for new technology. Oh! So weary!

Will you upgrade if a new pump and new sensor system comes out as a packaged deal?

Monday, May 7, 2012

Medtronic Trial: No Veo

Coincidentally, my headline, "No Veo," or "I don't see," in Spanish, is true. My number wasn't drawn in the randomized trial for the Minimed Veo Low Glucose Suspend Insulin Pump. So, no new pump today. Apparently, very few people in Austin got their number drawn in this national study. Boo hoo!

However, I will continue with the Enlite Continuous Glucose Monitor (CGM) sensors and the Bayer Next Link  for another 13 weeks! YAY! I really love the Enlite.

I really would love your questions. I take a lot for granted and may not be telling you everything you want to know. I have a really busy week coming up, so if you post some questions you might have, I'll get answers to you before my next full post. Thanks for all your support!

Medtronic Trial: Headed to Appointment... see if I get the Veo. Stay tuned this afternoon and cross your fingers!

Tuesday, May 1, 2012

Medtronic Trial: Upload Complete! Now the Wait. Veo or No Veo?

Today I uploaded my pump for the trial folks to analyze and see whether I am able to continue and be put in the random selection for the Veo Pump with Low Glucose Suspend. If my Carelink log meets some mysterious criteria, my number goes in a hat. If I am picked, I go Monday, May 7 to get trained on the Veo.

Either way, I will continue with the trial, but I may only be testing the Enlite CGM with a Revel pump and not the Veo. I hope to make the trial, mostly so I can tell you all about it! Cross your fingers for me!

Sunday, April 22, 2012

Medtronic Trial: Bayer Contour Next LINK Investigational Meter

I promised details on the investigational Bayer Contour Next LINK Meter provided with my pump for the trial, so here you have it. A picture says a thousand words, so I'm going to take advantage of that. Forgive me, however, for the not-so-great picture quality. I had to use my phone camera today, as the other camera's batteries were dead. FYI - If you click on an image, you can see it in a larger format. You also have the option of clicking through all the image up close.

Bayer Contour Meter has a USB connection for charging and downloading readings,

Results are displayed across the screen first in a big bold font, then it shoots to a smaller font as seen as it sends the results to the pump. Tough shot: Green bar says, "Results Sent."
There is a useful "Notes" screen that includes this and the following image.
Notes also includes "Activity," which isn't pictured
The meter also includes a reminder to recheck your blood sugar. I haven't used this yet, but this is a new feature, so I'm trying it out.
This is the Menu screen.
This is what you see when you select "Trends."
The is an image of the Logbook. The text under this reading has a scrolling, "Sent, High Blood Sugar."
Same scrolling text and amber color for a low. Font is white if reading is normal.
Easy on/off button, which seems like a silly thing to show you, but if you have the One Touch UltraLink, you understand. Just try turning the sucker off without throwing it out the window. Such an incredibly simple thing to make so hard.

Pretty cool! I didn't give it enough credit in my first post, but I also hadn't played with it much at that point. I don't upload the meter into Carelink, all results are sent to the pump, so they are uploaded with the pump info. However, if you needed to upload the meter only, you could. Whatcha think?

Friday, April 20, 2012

Who Knew Hormones Could Do That to My Blood Sugars?

I can't believe the last several days.

Here is a snap shot of my blood sugars in mg/dl:
Tuesday: 468 - 55
Wednesday:  478 - 45, 15% of my readings below 70
Thursday: 218 - 40, with 13 % of my readings below 70

The highs were easy; occluded infusion sets. The lows, well, I spent three nights with blood sugars I could not bring up over 80. I drank a total of 15-18 juice boxes, ate cereal, whole grain bread with Nutella and I even did a temporary basal rate last night of 45% so I could sleep. This drastic measure kept me normal and I never climbed above 150 mg/dl until morning. I was SO low and it was exhausting!

The alarms on the CGM; thank God for them, but they drove me bananas. I woke up to a screaming alarm that had been pressed underneath me and my covers with a 45 mg/dl BG, I drank two juice boxes and hoped that would be the end the alarms for the night. After all, I'm tired people!  I crashed back to a 45 mg/dl induced sleep, and BAM! Twenty minutes later, screaming alarm wakes me and I'm 55. Drink another juice and the cycle continues for three nights.

Boy Alert: I am going to discuss hormones, as they relate to blood sugars and, yes, my period!

Finally, I decided to call my doctor and he adjusted my basal rates, but could all this be because of dropping estrogen and progesterone levels? I got my period today and I'm wondering if I would have the same problem tonight. I'm not going to risk it, I changed the basal rate, but this is kinda concerning. I really, really had trouble handling this.

I have a history of BG's being high the week before my period. I also know of one other time I had this exact trouble with lows happening overnight that weren't fixed with a juice box or two, and it was the day before I got my period. But this time, we are talking three consecutive days of overnight lows before my period! Yikes.

I have always wanted a better understanding of how female hormone cycles impact blood sugar levels. I track my cycles and I track my blood sugars with the CGM, I need software to marry to two sets of data and show me some correlation. I want to know how to cope with this before it is a problem. I used to have a couple different basal patterns for the week before, but I switched pumps and never reprogrammed the rates.

I'm just going to call this a freak accident and hope I don't get disqualified from the trial because of this wacky stuff. It was weird and I hope its over!

Ladies, what are your experiences with blood sugar fluctuations throughout your cycle? Ever had anything like this happen?

Thursday, April 19, 2012

Medtronic Trial: Minimed Enlite Sensor ROCKS! So Tiny and Comfortable!

How do I love thee, Minimed Enlite Trail Sensor? Let me count the ways...

Seriously folks, I love this sensor. I've had it on since Monday and I have had some hard diabetes days. I'll get to that in another post, but so far, I can't feel a thing and it works like a charm.

I'm not going to go into how to put it on, because all of that is in a video on the Medtronic website.

Some things I love about the sensor:
  • 69% reduction in size compared to previous sensor. We are talking a HUGE difference in size, which meant a HUGE difference in needle required to plunge the thing in your body.
  • Adhesive tab that holds the Minilink Transmitter in place.
  • Specially designed adhesive that slips over the sensor head before you put on the Minilink. Although, it is super soft and easily gets stuck together, so you have to be quick and hold it on all sides.
  • Can't feel a thing. Going in, or wearing it. Nothing. Completely comfortable.
  • Six days of wear.
Some things I love about the Serter (although I think that is a silly name):
  • Hidden needle.
  • Easy enough to load, but requires thought.
  • Needle retracts after insertion and you don't have enormous needles to dispose.
  • I like that you press the button to unlock the sensor, then let go of the button to release the needle and sensor. Don't know why this matters, but it feels less scary that pressing the button and waiting for the scary click. I only have done this once in the trial office, so I'll fill you in on my next experience.
Other than those things above, it works just like the previous sensor on the pump. Same requirements for calibration, but they are recommending we calibrate multiple (as many as four) times per day, but only two are required for wear. Another thing, I think I can get this on my daughter! Really, this is huge.

Do you wear the Medtronic CGM now? What do you love most and what are your biggest beefs?

Thursday, April 12, 2012

Medtronic Trial: End of Second Week

So, I am ending the second week of the pretrial where I am just wearing the Medtronic Minimed Revel with no sensor and no Veo trial pump. I just have to be sure to check my blood sugar four times a day with the Bayer meter mentioned in my previous post, my ketones each day and log everything into a trial version of Carelink each Friday.

Monday I get the Enlite Sensor. I'll try to take some photos to share. Really thrilled about this and the easier to insert sensors.

FYI - Diabetes Daily has asked me to guest blog about the trial, so I will post a link to that next week.

Curious if any of you have tried or even seen the MySentry yet? I would really like to know how this works, especially for parents with T1 kids. Do you want one as much as I do?

Tuesday, April 3, 2012

Medtronic Minimed Trial Part two: Got Some Stuff

I had my second visit for the Medtronic Minimed Veo and Enlite Sensor trial on Monday. I was given a new Revel pump and a new meter from Bayer that links to the pump. It has a color screen. It is under investigation as well. I was also given a binder full of papers and log sheets, a blood ketone meter, ketone strips (I have to check every morning. Ugh.).

I will have to upload my readings to CareLink under a trial username each Friday and log my ketones and notes, like the fact that I have a cold right now. Also need to record exercise, lows, etc.

In two weeks I go back and get the Medtronic Minimed Enlite Sensor and can't wait to tell you about it. If you've read my blog long you know how much I hate the harpoon of a sensor they offer now. I like the results, but the UI is sucky.

One bit of info that isn't confirmed, but intriguing is that Minimed intends to continue to use the Revel model, not the Veo, but upgrade the technology in the Revel. Not sure why, but I guess the study is for the technology, not the device itself.

I just want all of this to come to market. I want the Medtronic Sentry for my kid and I want the hippest thing out there to help us manage this pain in the ass disease.

FYI - I am wearing the Dexcom 7 Plus CGM until I get the Enlite. Wearing it makes me remember why I really like the Minimed; it is all in one. I am constantly losing my Dexcom receiver in my bathrobe pocket, in my car, in my jeans that almost made it to the wash. Sigh. Hurry Minimed!

Tuesday, March 27, 2012

First Visit: Minimed Veo and Enlite Sensor Study

Well, I passed all my screening questions for the Medtronic Minimed VEO and Enlite Sensor study. They asked me 4,000 questions that all ended with the answer, "No." They drew three tubes of blood and then gave me 47g worth of carbohydrates in the form of one and a smidgen of a bottle of chocolate Boost. Then I had to wait two hours.

I thought I was free to read or something, but then came out a stack of paper, seriously 2 1/2 inches thick, with a bunch of yellow sticky notes. It was my entire medical history! She went through every single sticky noted page asking if I was on this medication anymore or that, when my knee surgery happened, etc. Lordy, I'm glad I'm not sickly, because this took almost an hour!

Interestingly, the majority of our conversation was around why I don't take my cholesterol medicine. The answer, "I forget" over about six years was not amusing to her. She said, "Part of eligibility of this study is compliance with its protocol." I replied, "It's the pill popping I have trouble with. I can check my blood sugar regularly."

Anyway, I will go into more detail about the requirements of the study, but oh! Joy! No confidentiality agreement, other than their obligation to protect mine. So I will write with Revel (get it?).

My next visit will start with the results of my blood work, which are measuring kidney function. If I am okey dokey, I will be trained and outfitted with a Revel pump, which I already wear. I kinda begged not to have to sit through two hours of training on a pump I own. She said she would see what she can do.

Then I have to comply with study protocol, which includes four BG checks per day and probably downloading into a guest Carelink account and uploading my pump info. If I comply, they will give me the Minimed Enlite Sensor and watch me for a couple weeks. I think I then get my name thrown in a hat and I will be randomly selected for either the VEO with the Enlite or the Revel with the Enlite Sensor. In my mind, I win either way, but I hope I get the VEO pump.

Have you ever participated in a trial? Let me know what you tried and if you blogged about it.

Saturday, March 10, 2012

Type 1 Diabetes, Motherhood and Control Don't Mix

Yesterday morning at 6 a.m., some rumbling thunder woke my daughter before I could come get her out of bed. I was in the office downstairs and sighed deeply, gratefully, because waking an 11 year old takes about half a century every morning. I usually roll her around, push on her, tickle her and check her blood sugar until finally, after threats of missing the bus, she pulls herself up.

It isn't over at that point, because she has to be physically out of the bed before I can walk away. Her snuggley green blanket and pillow are just too tempting.

But this morning, I heard her sleepy feet hit the floor and she called down good mornings. I replied cheerfully with a reminder to check her blood sugar. A few minutes later, as I take the couscous off the stove for her lunch, I hear her call down.

"Mom. I'm 439." I head for the stairs and She is standing there and I can see she is already thinking of how she can avoid an infusion set change. Such a pain in the neck, and it was only two days ago we changed it.

I give her a shot of insulin for half the correction and change her infusion set, giving her the other half of the corection. She sits down, looking pale and tired and says she feels nauseous. We check her ketones, and of course, they are high. I get her some water, and even a bottled green tea, and tell her its the best medicine we have next to insulin. That if she can just sit tight and sip the water every few minutes, it will help her feel better.

She has about 10 minutes before the bus comes and she says, "I'm okay. I'll take a bottle of water and get to feeling better on the bus." She struggles to put her things in her 60 pound, 6th grade backpack. She looks at the clock, sighs, and continues to stuff. I take her hand, gently pull her up to a standing hug, which she doesn't resist and I say, "Go watch TV, drink water and we'll get you to school late." She relents.

She is in a middle school magnet program for the Humanities and Law for International Studies and really likes school. Missing school for any reason is tough, as every minute in class is crammed with content, but she felt like crap. So, she trudged upstairs, kicked off her rain boots and curled up to watch TV. I implored her to drink. Again, nothing except water and insulin will help, but I know her and she won't.

So the struggle begins for me. Just last night she told me a story about her best friend in theater class the day before. Her friend attended one day of a diabetes summer camp with my daughter and got this awesome backpack, along with all the other families. Her friend's regular backpack broke last week (under the weight of eight classes of books) and she pulled out the camp freeebie to use. In theater that day, her friend had left the backpack open and some girls saw inside and started taunting her, "Ooooo! You got diabetes! Mmmm, girl, I can't believe you got diabetes!" The freebie backpack was labeled inside with "I Have Diabetes" and a list of doctors and phone numbers to call in an emergency.

Her friend quickly stammered, "No, no I don't have diabetes. It is just a free backpack I got." The mean girls kept it up and her friend was left to "defend" herself against the attack.

This story gave me pause. It shook me to realize how fragile middle schoolers are around fitting "in." It made me think, why the hell is this a big deal, but my daughter has told me often enough, that you have to lay low. Anything that sets you apart as different, can turn into a problem. You don't want problems in 6th grade. You have two more years with these growing kids and smooth is the best path.

It upset me that her friend had this reaction, but I know it couldn't be helped. She was being "accused" of having diabetes and the stupid freaking two different diseases have become one in most people's eyes. I get very defensive about the metabolic disorder, T2 and the immunosuppressive disorder, T1. Defensive is what I get. Pissed off really.

I remember being at a loss for words after this story. Delicate lines to dance around when dealing with self confidence and a chronic disease. I think I simply said, "Well, I guess she is lucky she doesn't actually have to deal with diabetes."

So, as time ticked by yesterday morning, which felt like forever to me, her blood sugar was dropping slowly, but she still felt nauseous. I implored her to drink, and she wouldn't, because of course, she felt like total crap. I got angry that she wouldn't even try and this is the circle of motherhood that I wish I could jump out of. I wish I could quit feeling so completely compelled to tell her what to do and expecting her to do it. She doesn't. Not because she is defiant. Not because she is contrary, but because she has her own mind and can think for herself. Her thoughts are often different from mine, which infuriates me (and overwhelms me with joy). Every time I open my mouth, I think that maybe she will really "hear" me this time. It is important. My words matter and can help her, if she would only listen. And it never works. I am a communicator, and my words don't matter.

However, over the long haul, I know my sage advice does make a difference. She makes great choices, does awesome in school, is loving, kind, compassionate and extraordinarily independent. But in the moment of this morning, with pale skin, nausea, all curled into the fetal position, I want her to drink water. I want her to try to help herself feel better. I know how to do it. JUST LISTEN!!

She takes a tiny sip from her bottle to get rid of me. To love me. To quell my need for control.

I relayed this story to a friend at dinner last night. It's been weeks and weeks since I spent time with my friend and she listened to me gap-mouthed. When I was through, she said, "Uhh! I had no idea. You never talk about diabetes. I thought she was doing really well." To which I replied, with realization that I don't talk about it, "This is part of what we do every single day." Many, many days are good, more than we would care for are not so good. It is a struggle that we handle very, very well, but the struggle, the care, the energy to maintain diabetes is constant.

It took my girl about three hours to feel well and see her blood sugars in normal range. She was starved, so I picked her up a fast food breakfast (parental guilt reward for enduring diabetic nightmare) and dropped her off at school. I beg her to take her blood sugar at lunch, and she does, like she does everyday, but really that only happens about 40 percent of the time.

I kiss her cheek and send her off.

Now, here I sit to unload all the layers of the last 24 hours, which mirror that last 27 years of my life and the last six years of hers. There is no sadness in this, I am not depressed or hopeless. I'm very proud of my daughter. Frankly, I am proud of myself. But this is real. The challenge to manage and control so many things that are completely outside of me. The challenge is containing all those layers of love, care, concern, compassion, and frustration; keeping them from containing me.

Friday, March 2, 2012

Minimed VEO and Enlite Study Start Date at End of March

Well, I am officially signed up to start the study at the end of March. There is an initial meeting, then a pump training. I think I get the new Enlite Sensor then and have to wear it for two weeks to see if I am a compliant study participant. I need to check my blood sugar four times a day and log "events" like low symptoms and exercise.

Check out this video on inserting the Minimed Enlite Sensor. Dreamy!!!

I don't log anything now, but I think I can handle it. If after two weeks I am a good girl I will be randomly picked to either wear the new pump or continue to wear the Revel and the Enlite Minimed Sensor.

Either way, I am stoked.

The other night, I went to bed with no CGM or BG reading (I was low apparently at bed). I bolted up at 1am and discovered I was 39. I drank two juice boxes and went back to sleep. At 4am I had exactly the same dreams that woke me the first time, and I check and was 50. If I had the new pump, it would have prevented those extreme lows. Dude. Better than my mother!

Anyway, I love a good study, but I really hope this is FAST! I want this technology for my girl. She is amazing and is doing really well managing her diabetes. 6th grade has been a challenge, but I am so incredibly happy with her self sufficiency, even if not perfect.

Lately I have been asking her to be the investigator. If she is high, I ask her to figure out why. She searches her pump history and has to relay what caused the high. No judgement. Just facts. Gentle, consistent investigation.

One recent change offered by our awesome CDE was the she automatically click through every blood sugar on her pump. What I mean is she checks her BG, it is 167, she continues to press activate until she gets an insulin delivery number or not. Not matter what, she just corrects every number. Sometimes it is no correction, but this is to establish the habit of at trying to bring BGs back to normal range.

Getting insulin in her during/after/before meals is another story, but we make progress and she is doing just fine. She is an expert carb counter, but her memory is another story.

I recently learned that as soon as we *think about* or smell food, our blood sugar starts to rise; the digestive process begins. Really we should be shooting insulin 15 minutes before we eat. I remember as a kid I had to take it 30 minutes before eating.

Anyway, I'll update after my first office visit and hope they don't throw a confidentiality agreement my way. I love tracking my experiences in studies.

Thursday, February 23, 2012

Participating in Medtronic Minimed VEO and Enlite CGM SensorTrial

Yippee! I am going to participate in a four to five month trial that may put me on the Medtronic Minimed VEO, which has been available in Europe. The thing that makes me most giddy is the opportunity to try the new Continuous Glucose Sensors, called Enlite. YAY!

The Enlite CGM Sensor can be worn for 6 days and has a much different profile in terms of the size of the insertion needle and the inserter. YAY!

The VEO offers a Low Glucose Suspend (LGS) feature to halt insulin delivery when the CGM senses you are low. Both devices are long overdue to the American Market, so if I can help speed this sucker to market, SIGN ME UP!

I want this technology for me, but mostly I want it for my daughter. She is 11 now and middle school is so trying for a T1 kid. I can't hold her hand anymore, so I'd love it if the technology would give her more support.

I'll post more after my first appointment. Of course, there are lots of hurdles to qualifying, so cross your fingers for me!

Monday, January 9, 2012

Medtronic Minimed MySentry $2,400!

I just got off the phone with Minimed and was pretty surprised to find the newly announced Minimed MySentry costs $2,400 and is not covered by insurance. It is cool, but I think I am more surprised by the lack of insurance coverage than the price. Hmm. Not surprised, but disappointed. Do you know what would have been smart, to annouce the upcoming release with the price, so we could get the sucker budgeted into our flexible spending accounts. The year just started and I've already ordered $500 in diabetes related supplies. There is no way I can forgo $2400 of my yearly allotment to buy this through flexible spending, but I might have budgeted for it in October. Shame!

I would love to have this thing, except I will never get the existing Minimed CGM on my daughter. I am so glad they are working on new products, but they REALLY need to fix the harpoon.

Really, what I need is an app that will read my daughters CGM or even her blood glucose meter and I will get alerts from it or be able to check on her when she is away.

Medtronic makes good products and really are industry leaders, but I am so incredibly sick of waiting for upgrades and better technology.

It is painful to wait for Medtronic Minimed to move and the MySentry product is a huge advancement (that I was promised five or six years ago), but they need to pick up the pace.

Oh! my goodness it is painful to wait. I swear the blood glucose monitors are exactly the same as I had in 1983, except 40 percent smaller and 40 seconds faster. Painful!

What are you waiting to see?