CGM in the Cloud & Now On My Watch!

People! It is here! I can see my child's blood sugar all the time!

The Nightscout Project, developed by a group of engineers and hackers with T1 or are parents of kids with Type 1 Diabetes created a way to plug a smartphone into the Dexcom receiver and have it upload to the cloud.

Now I have a website that I can keep up on my desktop, iPad, or phone that virtually mirrors my child's Dexcom readings and will alarm if my daughter is low or high.

I also can upload the info to the Pebble smartwatch, which is what you see on the left.

Now, I don't want you to think this is out of the box easy. I spent a lot of time reading posts on their CGM in the Cloud Facebook page, watched the instruction videos multiple times and spent about a week researching phones, cables and storage containers to carry the "rig."

But, it was easier than I expected. Every time I had a question, I posted on the Facebook group and got an answer, even after midnight.

At first I thought this might be a bit over the top for a teen starting high school. PERFECT for a toddler! But would she want me lurking on her like this, but after talking to her about it, we realized this could be hugely helpful. She is still a growing kid with a brain that is firing at a million times a minute. She is starting high school, in marching band, on the swim team and hardly ever is at home. So this is a win. Plus, she can view her on readings on her phone, which never leaves her hand.

The thought is that I am back up. If I see her numbers climbing sharply around 1:00 pm, I can text her, "Bolus?" to make sure she got insulin for lunch. She can then take care of it before the freight train of highs plague her all afternoon. Forgetting is a big teen problem.

So, here is a screenshot of the website on my ipad.

I'm not going to go into set up, because that is all online at Nightscout and Facebook. But here are the elements of what's needed:

• Smartphone that can take an OTG cable
• Specific cables for data transfer
• Dexcom (extra receiver helpful)
• Data plan for smartphone (most of us use Ting.com for about $9/ month and share referral codes that give us $$ credit when someone uses it)
• Optional Pebble watch, but not necessary.
• Time

What amazes me is that an engineer and dad like John Costik, one of several founders of the Nightscout Project, made this happen for his own son. He loved the Dexcom, but not having his sons numbers available at a glance was inspiration enough to make what is becoming a very helpful tool for hundreds of T1s or parents of T1s. Six Until Me did a great interview on the process that led to us all having access to this amazing info at our fingertips.

The philosophy behind making it available to all is simply, #WeAreNotWaiting.

#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.

#WeAreNotWaiting for competitors to cooperate.

#WeAreNotWaiting for regulators to regulate.

#WeAreNotWaiting for device manufacturers to innovate.

#WeAreNotWaiting for payers to pay.

#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.

#WeAreNotWaiting to get some decent sleep for the first time in years.

#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.

#WeAreNotWaiting to give our child a better chance to succeed at school.

#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.

#WeAreNotWaiting to build applications that focus on design and usability.

#WeAreNotWaiting to compel device makers to publish their data protocols.

#WeAreNotWaiting to insist that patients have access to their own diabetes data.

#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software delivered that comes with their device.

#WeAreNotWaiting to make it easier to get data off of devices.

#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.

#WeAreNotWaiting for the cure.

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!!

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.

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!

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: 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: 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.

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 Mad!! Minimed Carelink Software has a Gaping Hole

Just to put this up front--I'm MAD!

Minimed offers Carelink Personal Therapy Management Software, a Web-based system designed to help you take information from all of your diabetes management tools – your insulin pump, continuous glucose monitor, blood glucose meter(s), and logbook – and organize it into easy-to-read charts, graphs and tables. It offers a logbook as well, which is "intended to assist you in analyzing impacts to your glucose control based on delivered Bolus insulin and external events documented in the Logbook."

PROBLEM--The Logbook only offers five "external event" options for documenting what is happening with your diabetes care:

Carbs
Exercise
HbA1C
Infusion Set Change
Urine Ketones

There is no place in this "therapy management software" to make general comments about your health or wellness, like when I have the stomach flu, a major deadline at work and I am stressed to the point of exploding or a sinus infection. My menstrual cycles causes HAVOC on my blood sugars from the day I ovulate through PMS and to the end of my period.

These are not random notes; frivolous nuggets of information. This information is about MY LIFE and every move I make impacts my diabetes control. My doctor, when he reads the files I saved from Carelink, has to know the facts when making recommendations about bolus/basal changes. If he doesn't see what is going on, it looks like I am just randomly out of control.

The very thing that makes the CGM so miraculous is that we get hard numbers 24/7. Numbers are virtually meaningless if you don't know what is happening to my body causing the blood sugar changes.

My doctor will get two weeks worth of reading through the Carelink and the first five days are relatively stable; it shows some lows, but there are notes related to exercise, so that makes sense. There was one super high with a note about an infusion set change, so that makes sense.

Then, day six shows blood sugars hovering between 150 to 200. No notes (after all this isn't related to the five logbook entries provided). Two days later they are high--over 200 all the time. A temp basal is employed, but again no notes.

I'm 250 at bed time on Day 12 and then Day 13 shows a huge drop in sugars; now below 70 all morning and not much higher after lunch. Day 14 is stable again--80-140 most the day.

What is a doctor supposed to do with this if he doesn't know I'm sick or have my period or had a bad batch of insulin or had a tough work week. There is no treatment recommendation that would make sense.

So, my point--I'm mad that the medical companies spend so much energy developing technology that can serve us SO well, but they forget about who is using it or what we have to do to manage the disease they are helping us treat. Who would release software that doesn't allow a user to make general notes. It is absoutely ridiculous!

October 3, 2007 Update

I e-mailed Minimed the night I wrote this post and I have not received a follow up beyond the message that my comments were being forwarded to the Marketing Dept. I sent them another message this morning requesting a response.

T1 Kids--How do you handle diabetes care at school?

Today is day two of second grade for my sweet girl. Day one was awesome. Her teacher was prepared, the Teacher's Assistant who cares for her was on hand and ready. Her blood sugars were 92 for morning snack, 112 for lunch and 85 for afternoon snack. Hooray!

Then today, well actually last night, she was 92 at 11:00 p.m. My husband checked her at 2:00 a.m and she was 174. He didn't know she was 92 earlier, so he only did a partial correction. This morning she was 275. Hmmm. I pause, but figure since she didn't get the full correction last night, things might be OK, after all it is only day two of her infusion set. I correct and we head to school.

Morning snack 230, obviously not great, but lower than before. Lunch, 212, OK, lower and its a post morning snack number, but still not great. Afternoon snack, 427. So up to the school my hubby goes to give her a shot (we live a half block from school). She'll be home in 45 minutes, so we decided to wait on changing the infusion set.

Then I went to pick my girl up after school and her teacher was a basket case. She was SOOOO worried that she screwed up. She said, "I should have seen it coming."

I let her know in no uncertain terms that she cannot claim responsibility for my daughter's blood sugar numbers. It is her job to teach her, get to know her and keep and eye out for the symptoms we discussed for almost an hour and a half. I said that if she is worried at all, to ask my girl to take her blood sugar and to call me if there are issues. Her diabetes management is OUR responsibility and we will do our best to care for her with the information we are given each day.

Now, I should say that my daughter has been under the supervision of one Teacher's Assistant since she started Kinder at the school. It took some months of cajoling the administration, but everyone finally agreed that having one person watch over her care (we have no full-time nurse) was better than her, at five years-old, trying to figure out which of the five people at the school was supposed to help her three times per day.

This angel of a TA named Molly is loving and tender and watchful over my girl. She also cares for several children with Autism and Down Syndrome, but every single day at 9:00 a.m., 11:30 a.m. and 2:00 p.m. she is in the room watching blood sugars be taken, writing down the numbers, helping count and add total carbs, monitoring the pump entries and trouble shooting with me on the phone if there are issues or she just thinks my girl just looks a little off today.

Molly knows my child and loves her dearly and this system has worked great for us. I hate the idea of a teacher being responsible for teaching, managing nearly 20 kids and giving her full attention to my child's diabetes. I like the teacher being an active participant, but not the care provider. It works for us.

Tell me how your little one gets care while at school. What is your biggest worry? Do you trust the people/system caring from you child?

Diabetes CGMS Yahoo Group--A great resource!

I found a great resource in a yahoo group titled Diabetes CGMS. It has more than 400 members currently using various CGM systems from around the world. I posted a question about Air Travel with the CGMS and a firestorm errupted over safety in air travel.

I have connected with some really nice folks who either have the CGM themselves or for their child. No question asked, seems unanswerable. Keep in mind, this group is only for those currently wearing a CGM.

I think I am going to set a target date for my daughter and then slap this thing on her bottom. She is not convinced that this has any value to her and the fact that I want her to have it, only makes her resist it more. Is this six year-old behavior, or what?

Minimed REAL-Time CGM Back on Track / Camp for T1 Kids

With the exception of one weird and whacked out reading comparison, my blood sugars have been matching very closely with the finger sticks. I am relieved! My daughter just got her pump upgrade and we changed from purple to blue, which makes her really happy. I am being patient, but I hope she give the CGM a try. She can try mine out before we buy.

Yesterday we had the pleasure of meeting two other families living with T1. Moms with kids going to Camp Sweeney decided on a play date before the kids head off to camp and we met at Central Market (a lovely grocery with outdoor play area and great live music). The three girls played on the playscape and moms chatted about all kinds of stuff, but the focus was on diabetes and how we handle so many of the complicated situations we have with little ones with T1.

My girl was pretty nervous; she is six and a half and the other girls are eight, but they were so sweet and asked my girl if she wanted to play. Last night she told me how much she loved meeting the girls and one of the moms is pulling together another group before the one week mini-session at Camp Sweeney (Camp Sweeney is an overnight camp for children with diabetes that lasts one week for the mini-session and three weeks for the regular sessions). My girl surprised me when she said she wanted to attend.

Anyway, it is so nice to be developing a community of friendships with kids who have T1. My daughter also attends Camp Bluebonnet (also for kids with diabetes), which is a day camp about an hour from Austin and that is another place where these kids will grow their friendships. When I was diagnosed at 14, I knew only one kid with T1 and she abused her body. She gave up trying early in her adolescence and I didn’t like to be around her, because her attitude was so bad. I never got the chance to go to Camp Sweeney and I’m a little upset my parents didn’t encourage me to go. I didn’t understand at the time how cool it would be to hang out with kids in my same position.

Anyway, my daughter has the opportunity and I hope it grows healthier attitudes and wonderful friendships.

Minimed CGM Lost Sensor AGAIN! Friend has Same Problems

I met the loveliest woman at the Minimed REAL-Time Pump and CGM training on Monday and we have been e-mailing each other about our experiences with this thing. Since we put on the sensors at the doctors office on Monday we have both experienced a some really wide ranges between finger sticks and the readings on the CGM. For instance I tested 261 and the CGM said 140. I even did a correction for the 261 and I saw no change on the CGM.

She had the same issue, finger test 227, CGM 147 with two down arrows even. She reported two Cal Errors and a Bad Sensor yesterday, so she switched out everything feeling a little frustrated that the sensor only lasted three days. Today she was working out (with new sensor) and the CGM kept giving her LOW alarms showing a blood sugar of 40 for an hour. She tested every ten minutes while this was happening and got finger test readings of 140-240. What gives?

Today is sensor day four for me and I got two Cal Errors and a Bad Sensor. I wonder if we have a bad batch of sensors?

More later...

Lost Sensor--My First Minilink Sensor Change

So, I lost my sensor yesterday. I had problems on Wednesday; I had a Weak Signal for awhile then got a Lost Sensor, even when I held the pump right next to the sensor. So I reached the conclusion the battery must be dead. I couldn’t tell because the sensor readings were all blank, after all, it couldn’t read with no signal and I couldn’t access past sensor data either (DUMB) to see if this was a low battery. So I recharged the battery and reconnected and went through the whole calibration process.

Yesterday, I got a Cal Error about 30 minutes after my first calibration. On my second try, where my blood sugar was exactly the same as the first time (ruling out blood sugar fluctuations as the problem) I got a second Cal Error and then a Sensor Failed.

So, I ripped it off and started over. What surprised me was how soft the sensor canula was; much more flexible and thin than an infusion set. I had a small red spot at the insertion site, but it looked better within the hour.

Things are back on track, and I had eight days wear with my first sensor, so not too bad. I got some advice from Noel that inserting the sensor at 80-85 degree angle helps prolong the life. I tried it (I think), so we’ll see.

Accuracy has been good, but not as close as the Navigator. Maybe 40- 50 point spreads on occasion, but I think my Freestyle Flash runs high when I calibrate. I haven't done a comparison as I ran out of BD strips, so will do soon enough.

I have pictures to post, but I will have to do later.

Day Four--Minimed Real-Time CGM--Darned glad I have it!

Happy News regarding the Minimed Real-Time Minilink--I am wearing the sensor past the three day "Sensor End." I just started a “new sensor” without actually connecting a new one and it is working fine. Calibrations have been normal and the required two hour calibration was actually prompted within the hour of reconnecting the old sensor (I’ll post more on process later).

I still haven’t tried the software, but it is web-based and I’m not sure how I feel about that yet. It would be nice to look at the data collected, but I just don’t have the time to figure it out right now.
We are having some interesting dialogue in the comments of my previous post. I’d love to hear more from you lurkers out there.

Buying this tool brings up lots of issues for me. It is expensive, it is cutting edge (for the moment) and I can’t afford it right now. My parents, however, can afford it and I have accepted their offer to buy this thing.

I have danced and danced around whether or not to BUY and I have had a list of excuses why I shouldn’t: the technology will be outdated in a matter of months; it just costs too much; the insurance won’t pay for it; I don't want to put this on a credit card,; what if I regret it; or what if it doesn’t live up to my expectations?

Each excuse I made in my head and with my husband seemed very valid, but I have come to realize that each excuse said the same thing, “I am not worth it.”

This shines through for a lot of women, especially around areas of self-care. Each time I ignore what my body tells me I need: more rest; a big spinach salad for lunch; a break from the computer and my work; a long walk; or ten minutes in my hammock; I am really saying to myself that I don't deserve these luxuries.

My father is thrilled when he hears I am avoiding lows and that I have only had two high warnings in four days. It feels so good to accept this without strings; this was a challenge. It took me weeks to think of this as a gift from them and not a burden to them. I am fairly pleased with myself right now and my body is thanking my every day!

Photo from www.freefoto.com

Day 2--Minimed Real-Time--I Like this!

I like this thing. I like having no additional baggage; I never really realized how stressful it was to carry around that extra unit with the Navigator. What if I lost it!

I wish I could look back at more information stored in the CGM. You can only scroll back for several hours to get readings. The bar graph is supposed to sub for that. I haven't downloaded the software yet (One of my least favorite activities is downloading software), so I'm sure that will be where I get my good data. I love having this number all the time. I finally figured out the calibrations. See comments from my last post from Noel about specifics related to calibrations.

Curious if any other Minimed wearers are interested in having this thing. My greatest challenge is NOT pushing my daughter to get one. We are ready to order at any second, but I want this to be her decision. Just imagine the joy of going to bed and knowing an alarm will sound if she drops or goes high. The joy of sending her off to school or one of the random day summer camps we send her to, knowing all she has to do is look at her pump to know where she stands.
This is a worry eliminator.

Really wish the CGM had the smarts of the Navigator in terms of alarms. They have the best thing since canned beer with an alarm that warned you 30 minutes before a low or high. THAT, my friends, is cool and it worked 97 percent of the time. Once, I got a warning of an impending hypo and my sugar was at 125. I thought, I'll take care of that after I drop off the kids. How fast could it be falling. Well within 30 minutes I was at 60, five minutes later I was in the 50s, five minutes later, and after a juice, I was in the 40s. IF I had headed the warning, I would have drank a juice, yes at 125, and watched as I dipped to the 80s and then slide back comfortably into the 100s. This happened many times. I loved that, so Minimed, this is the goal for the model next year.

Let me hear from you. I know money is the biggest obstacle to getting this thing, but would you want it? What do you think about the technology. Does the idea of this kind of technology, perhaps even having a closed loop system, make having diabetes more bearable? I am ashamed that the CGMs and pumps costs so much; that this technology is so inaccessible to so many people. I am very fortunate. Very fortunate indeed.

photo from www.freefoto.com by Ian Britton

Inserted—Medtronic Minimed MiniLink is Active!

Well, I have to say I was pretty nervous inserting the Medtronic Minimed Real-Time Sensor. The one I used in the Navigator trial was hidden inside a inserter and I couldn’t see the needle. I did know that the sensor was only 5 mm under my skin. But this sensor seems huge by comparison. The needle is fat (relatively) and the sensor is a needle, not a soft canula. Scared yet?

Insertion did NOT hurt. The Sen-serter was quiet and easy to use, but pulling the introducer needle out was a trick. I had a hard time; I was afraid to pull to hard or the whole thing might pop off. It bled more than I thought it would but stopped quickly.

After two hours I got the alert with a vibration and beep to “BG Meter Now.” I took my blood sugar, which was surprisingly at 240. I was 100 at breakfast, so I was worried it wouldn’t calibrate. I sat and waited for my Blood Sugar to show up on the pump, it took at least five minutes to pop up. It was awkward after the calibration though. It didn’t “say” anything after my blood sugar was entered and without the reading showing up right away, I was afraid I screwed up. I didn’t and I guess it is just getting used to a new device.

So far it is comfortable and reading steadily. One thing that surprised me is that when you use the Bolus Wizard, your blood sugar doesn’t automatically pop up; you have to enter it manually, which seems kind of silly. I guess they want me to check my blood sugar manually before taking any kind of action.

I keep my pump in the side of my underwear, under my clothes (obviously). I had my pump on my left side and at one point, while waiting for anumber to show up, I lost the signal from the transmitter. I think that is werid. Two feet away under some jeans and the signal couldn’t get through? The navigator read while I was down and it was upstairs inside the dirty clothes basket.

I moved the pump over to the right side and it seems to be ok.

I have been running high all afternoon. I just did a serious Bolus and it appears to be coming down now, but too weird.

More later.