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?

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...

..to see if I get the Veo. Stay tuned this afternoon and cross your fingers!

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!

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?

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?

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?

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?

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!

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.

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.

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.

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!

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?

Another Dexcom Pro and Another Con

I forgot something in my last post about the Dexcom Seven Plus. PRO: I love that I can wear the sensor for two weeks. Shhh! It's kinda a secret, but some folks I know get three weeks out of it if the glue holds.

However, CON: the receiver needs to be charged, so if you can remember to plug it in at night next to your bed, you are safe. Forget and the battery can go caput and you are out of luck until you can charge it again. I was out of town this weekend and forget the power cord, so it ran out of juice into day two and I was left hanging.

Not a huge issue, but a different one from the Minimed which has you charge the transmitter.

FYI- My site is getting hammered with comment spam. Hundreds of posts a week, so forgive me if I can't get them all deleted in a timely fashion. Don't click on them, it only encourages them. Blogger/Google, get your S*** together and stop this crazy madness!

I like Dexcom better than Minimed! Yeah, I said it!

Jury is in! I have worn the Dexcom 7 Plus off and on for a few months and also switched out with the Minimed CGM. Frankly, the Dexcom is just more user friendly for several reasons. It has cons too, so let me lay them out Pro and Con style:

Pros

• Sensor is TINY and doesn't hurt (much) going in. Much like an infusion set.
• Lasts at least 7 days
• Very, very accurate. Only a couple times I've had it off the mark and it was after the seven days of wear. Often within one or two mg/dl.
• Alarms are quite and unassuming, but you know they are there. This is a big one for me. I hate the alarms on Minimed. They are obnoxious and difficult to program. Not impossible, but it requires a lot of effort to shut the thing up. I would need a whole other post to talk about the difference it makes to have the alarms more like Dexcom, so I'll leave it here.
• You still get readings after a calibration request. This is also huge. I press the button to check my numbers and a polite little message says "Check BG." I can't, so I don't, but the graph ticks along doing its best without my calibration. I get out of my meeting three hours later and it is still holding my numbers, but I know that I need to calibrate, so I check my blood sugar, see it is really close tot he Dexcom, but I forgot to enter it in the Dexcom before my next meeting. I check the unit half-way through my meeting and see my polite little reminder and think, Darn it! I forgot to plug in my reading. Oh! Well, I can do it when I'm through." AND get no annoying, blasting reminders every 30 minutes. Really, this is BIG for me.

Cons:

• Separate unit, which I have lost and then found. Bad for me!
  
• Doesn't talk to my pump.
• Can't merge the data

Running out of steam, but that is it in a nut shell. Minimed better get off ther asses. I have been waiting for a VERY long time and upgraded to get their technology coming out. But they have always failed on UI and don't seem to listen to their market.

I still love my pump, but I desperately wish Medtronic Minimed would step it up A LOT!

Better Success with Accuracy

Well, the Dexcom caught a low in the middle of the night and it was right about the low, but 30 mg/dl off. But juice was administered.

I have to say, my daughter is being a champ with middle school schedules. Rough second day, but overall its been great.

For the first time I can remember, she is feeling self conscious about pulling out her meter and pump. She's worried, because the rules are so strict and kids think she is using a cell phone, which means an automatic detention. So many new kids she doesn't know, so the looks and questions like, "What's that?" get annoying.

Glad its Friday! Saturday, my girl is doing a roller derby camp all day. Should be fun!

Not Accurate, So Far: Dexcom 7 Plus

Last night I was awakened by an alarm that said 47. Actual blood sugar was 90.

Today, alarm says 401, actual reading is 234. Calibrated and its back to 254, but still.

Like trending arrows: Dexcom 7 Plus

I like the constant trending arrows; pointing east for level sugars and northeast/southeast for going up or down steadily, but not fast and of course, north or south, which is pretty way to figure out.

I know folks have been blogging about this product for years, but I might as well document mine.

Also, to clarify, I have great insurance, so this experiment is largely affordable. I still like my minimed cgm, but my daughter tried it once and that was the end of that. Harpoons don't play well with kids, do we are giving this a try.

My girl had never really cared about taking her blood sugar in front of folks, but 6th grade its so different. Eyes are on every move she makes and we need diabetes to be as discreet and private as possible.

Can't hear alarms on Dexcom 7

Well, accurate  readings, but the alarms and not loud enough and the vibrating is absolutely not strong enough.

Also, the receiver is easy to put down and walk away from. Potential problem.

Trying out Dexcom 7

We are trying out the Dexcom 7.  My daughter won't wear the Minimed, so we are giving this a try. She just started middle school and I really want her to have this technology, and I am furious that the FDA has held up the approval of the new, rumored improved, Minimed sensor.

First report of the day; couldn't feel the vibrating alarm to calibrate and it was very close to the body. Not a great sign, if you need alarms privately.

More later.

Disorienting Low and a Car

I had a doozy of a low this week. It has been a LONG time since I got low and felt out of control. When I was younger I had some lows that had me begging for help or caused amnesia, but it really has been years. Now, I usually get low, feel it, drink a juice and move along or more often than not my CGM catches me as I fall.

This week I have been dropping a lot. Don't know why, hormones or absence of them, who knows, but Thursday my CGM was giving me alarms about predicted lows and I was in full work mode. Trying to solve a problem and I just wouldn't stop until I had it fixed. The CGM was reading 70 and I really should know better, that 70 probably means 50, but I didn't stop to take care of myself.

On a mission, I drove home from work to pick up my daughter from school, dropped her off at the house and headed to the computer store to buy a cable. I had a problem to solve and I needed that damn cable.

In the car, I felt so out of sorts. Despondent, anxious, weird, but not so obviously that I recognized what was happening. I had been having a hard week, really under pressure and I was thinking to myself that maybe this feeling I had was a new normal. That I'd feel this way forever. It was weird.

I got to the store and I asked if this cable would fix my issues and they showed me the package and pointed to the info I needed, but I couldn't read it or focus and just asked them to be sure this is what I needed.

I got home (THANK GOD), sat down at the table with my hubby, pulled out my blood sugar kit and I was 37. I looked at the meter and said, "Wow...37." My man got me a juice box and I drank it, but as I sat there I felt strongly that I was supposed to be doing something. I asked him, "Am I supposed to be dong anything?" He said, no. Quiet. I asked if he was sure and he replied yes. Quiet. I said, "I am just supposed to sit here?" He said yes and so I sat there, waiting for the juice to hit.

This is the first time I can remember since I was in my 20s that I was actually "disoriented." I really didn't have a clue what was going on. My CGM was still saying 70, so it was just a little off (HA!), but I somehow instinctively got out my kit.

I am so grateful for adrenaline when I was on the road. Without that, I could have met a very sad and disoriented end.

My 10 Year Old is Now Hooked Up: CGM

Well, we pulled the trigger and got our daughter the upgrade for her Minimed insulin pump to a Revel with the Continuous Glucose Monitor. I warned her it was coming, but I was not prepared for the resistance to putting the sucker on her.

The pump is great, the CGM sensors, not so much. They are freakin' huge needles and it took me one hour to convince her to let me put it on her. We iced her bum, we talked, we cajoled, we pleaded, we reasoned, but the only reason she consented was because we had a birthday party to go to, the clock was ticking and I refused to back down.

We had to establish the rules of engagement. Three kisses, then I had to count to three, but I couldn't touch her with the inserter until three. Then I had to say "ok" before I pushed the button.

She did it and cried like a baby. Said it hurt like hell. It bled a little, but she said it hurt for a good 20 minutes, but she was fine by the time we reached the party.

We didn't start the sensor until after the party and the sensor had its wick wet, so calibration was immediate. She thought it was pretty cool when the blood sugar numbers finally popped up on the screen of her pump.

She watched it through the afternoon and into evening. We'd ask, "Have you taken your blood sugar lately?" with a smile and she would whip out her pump and tell us the number.

We calibrated at bedtime, but she lost the sensor around 11:00 pm. I positioned it closer to her Minilink Transmitter and she was fine, until 3:00 am. She came in and said she was high, so I wanted to check against her meter and it was off. CGM said 315, meter said 230. That was significant enough for me, because the calibration had about the same difference earlier in the evening. I sat in the dark and decided to turn off the CGM and restart the sensor.

By morning things seemed to match, but she was still running high. She took some Advair for breathing difficulties and I know that was shooting her blood sugars up. She called me from school and said the thing was beeping all morning. High blood sugars, missed bolus warnings, even though she bolused. I reminded her it is going to take time to balance her insulin levels to match what is happening in her body. When that happens, she hopefully won't hear any beeps at all .

More in my next post, but I'm not sure I will be able to convince her to put that sensor on again. We'll see. More later.

Ten is a Magic Number and When Girl's Brains Drain Like a Sieve

I've fallen off the blog for awhile, but I have a new mission and I welcome your help. My daughter just turned 10. She has been an amazingly compliant and helpful kids with diabetes. She knows more than most people about the disease and has always been very independent in her management.

On one of my previous posts, a reader told me to, "Let go. If you don't want Mutiny how about listening to your child instead of being a constant nag." Fair enough. My post was mostly sarcastic, but the fact is that every single day this week she forgot to take her insulin at one point each day, we ended up having lots of talks. I asked, "What would need to happen for your to remember to take your blood sugar and insulin?" She looked me in the eyes and said she honestly doesn't know.

I asked her what the benefits would be if she remembered and we talked about those. I also asked what the downside of not remembering is and we discussed all the ways that it sucks.

She is a SUPER kid. Bright, fun, loving, not rebelous at all, but she is just not remembering the task at hand. So I started asking friends about their girls, kids without diabetes, and it appears that 10 year old girls develop holes in their brains.

I did some more asking around, teachers of fith grade included, and they all agree that at this life stage, that self-centeredness abounds; that they really can't think the way they did even just a year ago, which explains a lot.

Another friend, who has a 10 year-old girl and a 12 year-old boy, told me he has been reading a book, Getting to Calm: Cool-headed Strategies for Parenting Tweens and Teens, which takes you into the emotional and mental world (brain) of our growing kids. I haven't read it yet and I tend not to enjoy books full of good advice (I read the first 30 pages of How to Tall, So Kids Will Listen. How to Listen, so Kids Will Talk about eight times). But here's what my friend, who has read a lot of it said.

He said that the girls at 10 are in a stage of "pruning and blooming." Their prefrontal cortext is said (simplified) to "orchestrate thought and action in accordance to internal goals." At this age, this is being "pruned," so to speak, meaning that developmentally, this part of the brain is somewhat out of order for a period of years often referred to by parents as teenage hell.

He said that beginning around age 10 for girls, they are very challenged at staying on track; starting one thing and moving to the next and then to the next. Diabetes is very much a series of steps that align with an internal goal of staying healthy and keeping mom out of her business.

So here is one scenario this week.

Snack time at school, 10:00 am
R: "Hi Mom, my blood sugar is 218.
Me: "OK, just please remember to put your blood sugar in your pump if it has gone off screen."
R: "Ok, Mom. I will. Love you. Gotta go!"

Lunch Time, 12:30 pm
R: Mom. Uh. Mmm. Uh, Mom? I don't know how this happened, but I'm 428.
Me: Ok. Did you take insulin for your snack?
R: Uh, I think so.
Me: Can you check your pump please?
R: Uh. Ok, hold on a sec. Mom? No.
Me: Ok. Didn't we talk at snack time? I believe you said you were 218. Don't you remember me telling you to be sure to put your BG in your pump?
R: Yes.

You know how the rest goes. Correction and everything is fine...until Wednesday. Same scenario, but she was at a friends house for dinner.

R: I'm 400.
Me: What did you eat?
R: Barely anything. A few crackers.
Me: Did you have milk?" She shakes her head, no. "Did you have any other carbs?
R: No...Oh! wait! I did have one of those, mmm, what do you call them? Mexican breads with the sugar on top?
Me: What kind of bread? Pan Dulce or the crispy ones rolled in sugar?
R: Uh. Those.
Me: Did you take Insulin?
R: I guess I forgot.

I am actually ok if she has a treat, but she knows full well, that that means she has to take care of that snack. She KNOWS this!

So, I need some strategies to help her remember, because it is obvious to me that everything has leaked out of her brain.

Today, I gave her a green rubber O-ring bracelet and told her that this is a physical reminder to take her blood sugar and take insulin. Her teacher is going to help remind her, but also give her something to tape to her desk which will remind her of these important tasks.

So, any advice you all have is welcome. I am totally willing to support her until her brain is whole again (18 or so they say), but finding ways that don't embarrass her, make her diabetes overt to anyone else and aren't hard for me to manage are the goal.

I'm hungry because I'm low, not because I'm hungry.

But here I sit eating a bowl of cereal. My blood sugar is 56. I feel low and I feel hungry. I drank a juice box, but no, I could not resist the call on Honey Bunches of Oats and milk. In fact, I think I'll have another bowl.

No, the juice hasn't quite hit yet...

Kids get easier...right?

Seriously, today has been a long day. We had citywide swim championships today and now my girl is over at a slumber party where cake will be served at midnight. She is nine, almost 10 and she is an amazing kid. She forgets stuff, like taking your blood sugar or bolusing, but she tries. I just hate leaving her in the hands of other families.

It isn't that I think anything will happen per se, but I worry that nothing will happen. They won't remind her to check her sugar before cake and won't remind her to check before sleep, but most important, she won't remember to call me and tell me how its all going...blood sugar wise. Uggh.

Three minutes before cake-o-clock. She was low all evening. She was 58 when I was at their house. She was 63 at 9:30 at the pool (they checked her when I asked!!!!). Wonder how she is doing now. Really, I wonder.

One more minute before cake-o-clock.

Wonder if she'll call me? I feel like a lovesick teenager waiting for a boy to call. "Does he like me?" "Is he thinking of me?" The answer to both ruminations here is, "No! She is at a birthday party! She isn't thinking about you, or your worry!" But I do bet she is taking just fine care of herself. Mommy has some letting-go work to do, but it can wait until she is 25. Goodnight!

Minimed Revel: Jury still out, but underwhelmed

I hate to judge something without ample time to use it, but I am pretty underwhelmed with the Medtronic Minimed Revel and CGM package. I have been using the Medtronic Minilink CGM since it came out, ordering a new one after my other konked out after 18 months.

I had the 722 Minimed Paradigm pump and it has worked really well for me. But, back when I started this blog, I was testing the Freestyle Navigator. I loved it; for the most part.


I LOVED the predicative alarms. I actually stopped lows before I had them. What could be better. So when the Revel promised predictive alarms, I thought, "Hell ya!"


I have received predictive alarms, but many came when I was already low or moments from the threshold. I'm not 100 percent sure exactly what was happening with many of these, because I don't tend to take my BS when I wear the CGM (slap my wrist). It has been really accurate for me the majority of the time. Not perfect, but really good. So several alarms I got were maybe five minutes before the actual low alarm, but I don't know what my actual BS was.


So, I decided to check sugars when I got the alarm and the first time I did this I got the Predicted Low alarm and I was 55 mg/dl. This thing is supposed to warn me 30 minutes before a low and I was already 55. This happened several times with similar results.

Benefit of the doubt wants me to say, "I need to get used to it," "its a new machine, give it a break," but a big part of me is saying send it back.


It isn't any more helpful that the 722 at this point, it just has more alarms.

OH! Big issue, I can't hear the freakin' alarms at night.

I went for two hours with No Delivery and I didn't hear or feel a thing. The alarms were not great to begin with on the 722, but they were WAY too soft on the Revel. They have different low and high chimes, but they are not better and sound softer to me because they are so high pitched.

So, I haven't put a sensor on for two days because it makes me tired thinking about verifying the readings. Easier not to know, but I better figure this out soon, I'm running out of decision time.

Anyone using the Revel have some thoughts to share? I'd love input.

Minimed Quickset Problem, Not Lot 8

I have had four "No Delivery" alarms out of one box of the new infusion sets Minimed has sent me. I reported it on the third time and just reported another.

It is with a box of 9mm, 23in. Quick-Set Paradigm with Lot Number: 9200558

It happens when I am bolusing only and within the three day window of normal infusion set function.

The Lot 8 issue was a fiasco and I wonder how long it took folks reporting their problems to get a adequate response. I bet if the problem had only been "No Delivery" vs. Spontaneous over delivery if it would have taken a lot longer for a recall? Any lack of delivery can be blamed on my scar tissue or improper insertion.

My experience has been that a No Delivery alarm is notice of a serious problem. I only twice or three times have gotten No Delivery alarms with an occlusion. I can be high for hours and never get an alarm, so when these alarms happen, I stop and pay attention.

Just curious if anyone else has had any problems.

Symlin and CGM: Digging it

So, I finally (finally) started trying out Symlin again. I really like it. I decided not to follow the instructions to bump up the dosage of Symlin (15mg, to 30mg to 60mg). I instead bumped up the dosage only if my blood sugars began climbing after meals.

I bumped up to 30mg about a week ago and haven't gone higher yet and I've been on it for three weeks so far. 30 mg makes me a tiny bit nauseous, but not like 60mg. 15 mg didn't make me feel sick at all. My blood sugars are SO stable. I have found when I eat a snack and don't take the Symlin, I bounce above 200 almost every time. With the Symlin I ride with barely a bump in the road.

One of the reasons I was so hesitant to try Symlin again is because of the drastic lows I had. They were scary. Scary enough for me to quit taking it.

My goals are to take less insulin, stabilize my BS and if I lost weight, I would be really grateful. Really.

I would not, under any circumstances, use Symlin without a CGM. It completely freaks me out to think of someone dosing 60 mg after a week or two on Symlin and not knowing their blood sugar afterward. Scary stuff if not monitored.

To conclude, if your doctor recommends it, take a look, but pay attention to your body AND your CGM.

CDC Webcast: H1N1 and People with Diabetes

Late notice, but today, November 18, 2009 at 1:00 pm eastern the CDC will offer a webcast for people with diabetes about H1N1 Flu and the issues faced by folks with diabetes.

In a nut shell, if you have diabetes, it is recommended you get an H1N1 vaccine. See the CDC-Diabetes site for details or the link to the Webcast.

Another diagnosis

On Facebook tonight I learned that a colleague's son was diagnosed with diabetes at two years old. He asked for warm wishes and helpful" We'll get through this" advice. He had 23 comments at last check.

I sent him a message and said I am happy to help them anyway I can. My experience with diabetes for the past 26 years and three days (Oct.13, 1983) will be helpful. My experience with a daughter with T1 for five years and two months will be welcome, I'm sure.

However, my long message offered very little advice; that two of the three available doctors are best, and that it really will be ok.

What more can you say on the eve of diagnosis?

Diabetes Envy? Kids are weird.

My daughter has a friend who is rather enthralled with her diabetes. Her mother told me that she created a blood sugar kit with an old bag, made a fake meter and also put a calculator or something in her pants to look like a pump.

When she came to our house one time, she tripped and cut her leg. Instead of crying and screaming, she immediately jumped up and asked if she could take her blood sugar with the blood.

Today is her Birthday--Party!

Today is my daughter's 9th birthday party. I have the biggest cake on order you can buy and 40 plus people and kids coming to celebrate.

We also just recognized the 5th anniversary of her diagnosis. I remember her 4th birthday party, which was 20 days after her trip to the hospital. We served cupcakes, because I could figure out the carbs easier.

Looking forward to celebrating with friends and family today. It's been a tense and stressful start of school. Diabetes, teachers, nurses, 504 adjustments, big highs, and big lows and no pattern for making adjustments. Looking forward to week two when adrenaline isn't such a factor in BG levels.

Looking for cooler weather too, but I need to give it another three months in Austin. 66 days at over 100 and I think today will put us to 67!

Nervous

I can't help myself. My daughter is spending the night at friends tonight, I got her last blood sugar reading at 9:15 pm and it was 137, but I can't help but be nervous when she isn't with me.

Ugg. She is becoming so independent (4th grade this fall) and she is so capable of taking care of herself, but I am still nervous. I guess that comes with being a mom. To add diabetes to the layer of complexity between a mother and a daughter is a lot to ask of any human being.

"Control" The Dreaded, Overarching Theme with Diabetes

Wow! Control is such a loaded word in diabetes care.

¹con·trol

Pronunciation:

\kən-ˈtrōl\

Function:

verb

Inflected Form(s):

con·trolled; con·trol·ling

15th century

transitive verb1 a: archaic : to check, test, or verify by evidence or experiments b: to incorporate suitable controls in controlled experiment>2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule C: to reduce the incidence or severity of especially to innocuous levels <control an insect population><control a disease>
In diabetes care, it isn't that simple. My daughter (8, almost 9) feels very in control of her situation. I am very proud of her, but my husband and I have very consciously worked to empower her and have made LIFE first, diabetes second.
I would LOVE to hear from parents who have figured out the "control" balance; parents who give their kids space to be, take care of themselves and found a way to "let go," so they can fly.
Please share your stories, I have readers who desperately need to hear from you. How did you move away from diabetes running your lives and go back to living?

First independent shot

My daughter's blood sugar was high adn she needed a new infusion set tonight. She ate a snack and declared that she was going to give herself a shot. She dialed up the Novopen and injected herself in the arm.

I'm so proud of her taking control and doing it herself without my prompting. I have oodles of pride in her this week about so many things. I pinch myself, completely amazed at how in love and fortunate I am to have such an amazing kid.

Pinch!

Self-Care Gift for Moms

This post is especially for moms living with Type One Diabetes. Whether you have diabetes yourself or you care for a child with diabetes, self-care is vital to our survival. It is something that took me a long time to learn and I still have to remind myself that if Mama ain't happy, ain't nobody happy!

With that, and the approaching Mother's Day holiday, I wanted to post a very special offer for Moms (or Dads that have the sense to take this offer and give it to their lovely wives).

FREE MOTHER’S DAY BOOK OFFER
Download a free copy of life balance expert Renee Trudeau’s award winning The Mother’s Guide to Self-Renewal: How to Reclaim, Rejuvenate and Re-Balance Your Life for 48 hours: May 8th-May 10th at http://www.mothersguidetoselfrenewal.com/ Sign up today!

I learned most of what I know about self-care from Renee Trudeau, a career and life balance coach in Austin, Texas. She introduced the concept of filling my cup first (yes even before my T1 child's) and also how to say "NO." She put all she knows into the very loving month-by-month Mother's Guide to Self Renewal.

Happy Mother's Day! Oh! My girl and I are featured in Month Four of the book.

Time goes by...

It is amazing to me how fast things move. A week just shot by in a fraction of a second and it scares me when I hear things just get faster with age.

I'm a less than a month away from turning 40 and have 25 years with diabetes under my belt. I just went to the eye doctor and my eyes are perfect, except for my need for progressive lenses (I'm getting old, duh). Went to my Endo and spent 20 minutes talking with him about a lot of things. Wasn't a ton to talk about with my diabetes. We made some adjustments because I am running high after I eat a bedtime snack. I need to make more adjustments still.

I don't wear my CGM as much these days, but when I do, I seem to run in really good control most of the day and night, except after bedtime snack.

My daughter on the other hand, has been swinging like a monkey in the trees lately. I made some changes to bolus and basal, but I haven't seen things even out. I am watching the trends and then, *snap* a week has gone by and I haven't figured her out. My only thought is hormones must be raging as she tops 4'6" and 87 lbs at 8 years old.

We suffered a serious loss in the past 6 months. My daughter's diabetes educator left the practice we go to. Anyone with diabetes knows that our doctors don't know diddly compared to the Diabetes Educators. She was really our life line. I would call her day or night and she always had an answer. Perhaps it was many years taking care of diabetes peds patients, many years with diabetes herself or all the training she got taking care of her son with diabetes. She is AWESOME and I can't call her anymore. :(

And since she left, I don't feel connected to that office anymore. I like the doctor fine, she is brilliant and loves my girl, but I feel like I lost my "go to." As time slips by and I watch her blood sugars bounce, I start to feel lost and have no desire to call the office for help. THEY don't know my kid like SHE did. Kinda angry about it still, but again, time moves so fast for me now that I can understand how a grudge could linger for half a year or more.

My months may be gliding by, but that has also served me well. Nights and days of worry over fever and flu, days of lows that just never seem to come up. Super-rubber-ball 400s, then 30s in a three to four hour period; they all smooth out over time. I have found, that if I can stop and hit the pause button, breathe, and look at what is going on , do what I have learned to the best of my ability, that things always seem to work out fine. It isn't the individual blood sugar readings that matter so much, it is what is happening over time.

My last A1C was 7.2 and I was thrilled. I know, we are supposed to shoot for 6.0 to 7.0, but 7.2 made me jump for joy. Remember, I ran high for many, many nights at bedtime, but the rest of my 24 hours in a day I did very well.

Can I make improvements? Always! But my averages are good, I have no complications, I am enjoying my life, I am able to care for my girl AND I can stop and hit the pause button occasionally and appreciate all I have learned. I can live with this without being afraid; I am not afraid.

Diabetes Management is FUN; I sweat playing Wii Fit!

Ok, I have to admit, I wanted the Wii Fit as much as my daughter did for Christmas. She almost has me beat doing the hula hoops, but I gotta tell you the yoga and strength training are F.U.N.

I like that the "trainer" can tell you if you are shaky (not from low blood sugar, but I'd pay extra for that) or imbalanced. The balance board tracks your progress in the form of BMI, weight and balance or posture. It really is a marvel.

I did seven yoga poses and six or seven strength training exercises and then did the turbo hula hoops and got a high score. I was actually sweating a little. Amazing.

NOW, imagine if there was a Wii Fit Diabetes Management Edition. You heard it here first! An edition that let's you put in not only fitness goals, but HbA1C goals, average blood sugar goals and meal planning options. Oh! My God that would be so cool.

What if, it was internet based and bluetooth enabled so you can download your pump/meter and give access to your doctor. Ok, fantasy over, but if Nintendo is listening, get busy! There are 23.6 million people with diabetes in the US alone and more than 230 million in the WORLD!

Woke up thinking about diabetes complications at 3 a.m.

This morning I had a first; worry about the future impact of complications on my body. Perhaps it is the pending New Year and the resolutions that always hover. Perhaps it was my husband, who said that he is sick of sitting in front of the computer and wants to get moving. Perhaps it is the Wii Fit and the fun games that are making me think a lot more about my diabetes and my overall health.

I have three months left of my 39th year. I was in the bathroom this morning and wondered if I need a mammogram now. Making my poached egg, I scrapped off half the butter I was about to use.

I put my CGM on four days ago for the first time in months. I thought the transmitter was about to konk out on me when I had a couple iffy sensors and bad readings, so I tucked it away and feigned self-control by "knowing my body." I have to say though, my blood sugars are darned normal most the time and the CGM confirms this for me nicely.

So, in bed this morning around 3:00 a.m., I started thinking about how my body was aching; really in need of a massage (which I got for Christmas). My ankle was stiff and the more I twisted it and stretched it to try to loosen up, the more I realized I don't like to be in pain, or really even discomfort, AND I don't like taking pills to make me feel better. This led to thoughts about how I'm going to feel if I am in pain all the time because of complications. I actually thought. "I'm not sure if I could live with that." I thought, I hope I get killed by a bus or freak train collision rather than suffer as I get older.
Don't worry, I'm not imbalanced or depressed, but it made me think about how much control I take over my health and life. Where does diabetes care fit into my priorities. To be honest, not very high on the list. My health fits in right about where most people fit it in, between kids activities, work, doing dishes and beating myself up over the things I *should* be doing.

I don't spend an inordinate amount of time beating myself up; gave that up years ago, but I have slipped to the other side to virtual complacence. Don't think that is the best place to be either.

My daughter takes most of my energy, time and stamina. Her diabetes takes the rest. How do I teach a kid to make the right choices, when they aren't a priority for me?

So, the Wii Fit really kicks some butt. I ought do be doing yoga now, but I just wanted to start a dialog about reality, not fear. A little voice in me is saying that I should be more mindful, thoughtful about my choices. That self-care is a high priority, no matter my other obligations. I think the example of the oxygen mask on the airplane is perfect here. If I don't get air first, how can I help my child?