Thursday, October 26, 2006

New sensor augmented pump
Yikes! I haven't posted in awhile. Sandra from "A Shot in the Dark" did a link to this Blog, so I thought I better post something.

On Tuesday, Tommy got trained to use his new Medtronic 522 REAL-Time pump. He feels that it is such an improvement over the Guardian RT/515 pump combo. We both love the charts and the arrows.

It is nice that he doesn't have to carry around another big monitor. The numbers go straight to his pump.

Saturday, July 22, 2006

Now Covered by Insurance

Jenny says:

Human Resources called today. They have overroad the two denials from the insurance company. They have told the insurance company to cover the Guardian RT and the sensors from now on! Oh Happy Day! We are so thankful to our employer!!

Our rep. told us that a handful of adults have also gotten 80/20 coverage from their insurance agencies! Why is it that everything that comes out about Continuous Glucose Monitors from the experts says that they are not currently covered by insurance. Shouldn't they now say that "some, but not all are being covered by insurance." Shouldn't the people that are trying to get coverage be able to say, "I know of a lot of companies that are covering them." Wouldn't that make it easier on them?

Wednesday, July 12, 2006

Tricking yet another sensor
Jenny says:
It has been our practice lately to try to get more days out of the sensor than Medtronic allows. The Guardian RT automatically turns off after 72 hours, but if we unplug the sensor from the transmitter and do another search, it will reinitialize. We always check out the skin around the sensor to make sure that it doesn't look red. I read somewhere that the sensor sight is less likely to get infected because insulin is not going through it. So, with a little caution, we have been turning an $11/day sensor into a $8/day sensor.

The other morning, Tommy woke up with a reading of 74 on his Guardian, and a 73 on his meter. It is starting to get hard to know which device to trust more.

I have been talking to a Mom in Canada whose son is on the Medtronic 522 pump and has designed a transmitter pouch. She is going to be sending me a couple, so we will be experimenting with them next week. We are excited that there might be a way to avoid all the transmitter tape.

Wednesday, June 21, 2006

Jenny says:

I found out that Joslin in Nevada was using the picture temporarily while they were trying to get the brochure together. They never meant to use it externally. Joslin was just excited about this new technology and had a lot of people asking them questions. They were going to use this flyer as a tool to answer some of their patients' questions.

Thursday, June 15, 2006

Taking a photo from this blog

Jenny says:
I had someone contact me to tell me that they saw Tommy's tummy photo from this blog on a Joslin (Nevada) flyer. They said that it was a flyer that compared the DexCom to the Guardian RT. They said that the caption under it said adult male with Guardian RT. Tommy is a 60 pound 11 year old. I am a little put off by it. They didn't ask permission and then they incorrectly portrayed the Guardian RT size because of it. I'm sure the DexCom looked very small compared to the Guardian RT. As soon as I verify that it really is his stomach, I will be writing them a letter requesting that they remove the flyers. I am not sure how protected our photos are that are on this blog? Does anyone know?

Wednesday, June 14, 2006

Jenny says:
Yikes! The end of the school year sure ate up a lot of time! Is anyone still interested in reading this blog?

We are very excited still about the Guardian RT. I just went to hear an endocrinologist speak about all the crazy stuff that happens during puberty. I am happy that we can slip in the sensors whenever we feel it to be worthwhile.

The other day, Tommy was priming his pump, and he accidentally primed an extra 8-12 units into his body. (Mom's Fault.) Tommy gets 15 units a day and has a sensitivity of 200 units, so 8-10 units at once is a little scary. Medtronic advised us to go to the emergency room, but the endo on call thought we were armed with everything that we needed with the Guardian RT. So, we knew when he was on his third grape pop and he was still at 70 that we needed to continue with the carbs. It was 6 hours before we saw 120.

We continue to negotiate reimbursement with our insurance company. They are still asking questions which I think is promising.

We are getting excited to upgrade to the new 522 pump. We may even have it by the end of June! Tommy is excited to lose the extra monitor.

Wednesday, April 12, 2006

Medtronic Gets FDA approval for new sensor augmented pump

Jenny says:
I am very excited because our Medtronic Rep. just wrote to me and told me that the Sensor Augmented Pump has just been FDA approved. I am a little nervous about what this means for Tommy's $2400 current system, but I believe that Medtronic will be fair. Tommy would be so happy to have to only wear one device.

Now we will dream of a smaller transmitter or an internal sensor. Small step by small step.

Saturday, April 01, 2006

5th sensor a lifesaver

Jenny says:
Our medtronic rep. came to Tommy's school again on Wednesday to help us insert another sensor, his fifth sensor to be exact. She had me insert one into her using the sens-serter, and then Tommy did his using the sens-serter. In his stomach of course! (I have to figure out a way to try some different body parts.) Tommy said that it hurt a little, but I never heard anything more about discomfort.

Tommy threw up at 12:00 on Thursday night. His blood sugar was about 100 when he did, so I was worried about a low. So, I thought I would try to prevent it by reducng his basals by 50% for the next 3 hours. We checked his ketones with the blood ketone meter which said 0.00. (This was our first sick day since diagnosis last April.) I checked the Guardian many times and saw that he was staying pretty steady at 100. Then he threw up at 4:00 am. And he was going down, so I took his pump off and I checked him 2-3 times every hour until 7:00 a.m. He threw up at 7:00. Then fell asleep until 10:00. I put the pump back on at 10:00. The Guardian said that his blood sugar was about 110.

I called our CDE and she said, "What! You can't reduce the insulin during a sick day! You need to start pushing carbs. And giving lots of insulin. He probably has ketones!"

Sure enough, we checked and he had large ketones. Ketones scare the heck out of me. He has never had them before, and I know how scary they can get. So, Tommy started drinking soda with a spoon. A few hours after that, he said that he could probably keep down a pull-in-peel or swedish fish. So off to the store I went. He was getting way more insulin than he has ever gotten. It was so nice to see that his blood sugar was not going crazy with this aggressive treatment.

Tommy finally got very interested in his numbers. I think that he was a little worried, too. I saw him looking at it frequently. I looked at it every 20 minutes. He said to me "Aren't I lucky that I had this thing on!" I think that we would have probably checked his blood sugar more than 30 times that day. And worried a lot more. His ketones went away by the evening.

Last night, I was operating on very little sleep, and he was running a little high from the candy and soda. So, I changed the high threshold to alarm at 270, a little higher than we like to run it. It alarmed a few times in the night so it woke me up and gave me the chance to give more insulin.

Tommy and I are pretty happy with this device today!

Tuesday, March 28, 2006

Comparison Chart of CGMs

Jenny says:
If anyone would like the beginnings of a chart that compares the Guardian RT, the Abott Freestyle Navigator, and the DexCom STS send me an e-mail. I am developing one for a list of parents on the Children with Diabetes Website. It is far from official. I received most of my information from parents of kids that are wearing one of these or from contact from one of the parents to the company. It is just to be used for thought starters.

This technology will change the way we handle diabetes!!!

Thursday, March 23, 2006

Armed and Dangerous!

Jenny says:
We are winning the war today over the breakfast spike. We have been battling without the Guardian RT for 2 weeks to try to figure out this extreme spike on Tommy's breakfast. At his 9:30 test, he is usually in the 300, so I have been inching down his carb ratio and giving him his insulin 20 minutes before he eats! And still always 300 or higher (which means all the other kids are eating snack and he is not.) But today, he is armed and dangerous! He has on the Guardian RT!!! At 9:00, I stopped in school, pulled him out of his classroom and into the hall and had him read his monitor. 180! Ah-ha. "Wait, tell me what it was 5 minutes ago." "174, 168, 165." Here starts the climb. Well not today!!! We told his pump that he was 175 (a little cushion) and then told it that he was going to eat 28 carbs (he eats at 9:30). So the pump gave him 1.9 units. I told Tommy that we are going to win today! And he walked back into his classroom with a big smile!

I am going to go back and check things out at lunchtime. I am being a little more aggressive than normal because we have a back up. However, we turned the alarms off for today because I need Tommy to get used to wearing it first, alarms later. (He said that on trial #2 of the Guardian RT the alarm went off several times in school and it was a little embarrassing.) This process is definitely on a learning curve just like everyone told us!

Our Medtronic Rep. is coming to Tommy's school today to talk with Tommy and the school secretary. Tommy really likes her, so I think that it will help.

Wednesday, March 22, 2006

We tried again!

Jenny says:
Well, we took a little break since our last attempt to insert a sensor. Last night I asked Tommy if he was ready to try again, and he said that he was! We decided to try manually this time rather than with a Sens-serter. It went better. I think a lot of people like the inserters better than manual insertion, but for us we feel that it is easier to get a consistent angle. It seems less likely to be surprised by a painful insertion. Tommy is unusually thin.

I decided to insert another sensor into my skin just to see what it felt like with a manual insertion. I think it helped to have him see me do it. Both of us had a lot of trouble breaking the skin. I believe that we were inserting too slow. Once I went quicker, it went in very easily. Tommy was very hesitant, and wanted to give up. I had to tell him that we weren't giving up, and that we were going to get one of these in him tonight. He ended up poking his skin several times before he successfully inserted one into his tummy. He went to bed feeling a little dejected. I told him that we will try a few more times before we make any decisions on whether we keep using it or not. I just wanted to cry.

Our mini-med rep. told us in the beginning that it was a four sensor learning curve. I do believe that it will be easier the next time now that we have a strategy of how we want to get the sensor in there.

Thursday, March 09, 2006

Painful sensor insertion

Jenny says:
We got a little busy since the last sensor was in Tommy, so we didn't try to insert a new sensor until tonight. This was our first one all by ourselves and it did not go well.

I decided to try it tonight because the kids don't have school tomorrow. The manual says that it is better to insert in the morning because you need a steady blood sugar two hours after the sensor insertion and then another steady one 6 hours after that. But we never woke up in time to do that before school this week. Plus he would have to enter some figures into the monitor while he was in school. I didn't think he was ready to do that on his own yet. I think I better try a few week-ends first when I am with him. (Summer would also be a good time to try this.)

Well, I decided to try tonight and then just wake up two hours later to calibrate it. We numbed the two spots for 30 minutes. Then he took a shower, he needed one anyways. His pump insertion went fine, as always lately. Quick and easy. Then we came to the sensor.

He had told me earlier, that he did not want to wear it, but I told him that he had to give it another try. It has been a little complicated that we don't have to wear it, like with his pump. That is a good thing, and in this initial case a not so good thing. I think in his mind, since he isn't very fond of it yet, he hopes that I just forget about it. So he puts up a little resistance. I will definitely not make him wear it all the time if that is what he chooses. But I feel that we should probably try it 5 or 6 times before we come to any real conclusion.

He tried to put the sensor in with the automatic inserter. It must have been too steep of an angle. (We had this same problem with the Silhouette inserter.) He immediately began to cry. (Being 9:30 pm didn't help either.) I believe that it went too deep. Maybe hit some nerve endings. It didn't bleed. We slowly took the whole sensor needle back out. I gave him a hug and told him that we would wait until after his basketball tournament this weekend.

I called minimed and they gave me some pointers about how to angle the inserter so it is not so steep. Also, they recommended that I try to find a spot where I can "pinch an inch" on him. Those spots are limited. They also said that they would give me a credit for a sensor.

I'll write more on the next sensor insertion try.

Sunday, March 05, 2006

Changes needed after seeing graphs
Jenny says:

O.K. It has been an interesting couple of weeks. Our Medtronic Rep came out to do our first home sensor change. Tommy inserted the sensor into the fatty spot on his back above his hip. That was a huge accomplishment for him. He does not like to move away from his stomach. We decided to put a piece of IV 3000 UNDER the transmitter because Tommy's skin really reacted to the tape from the transmitter. It got really red and bumpy. I tried hard not to ask Tommy to see his numbers when I was simply curious. I behaved. We both made more of an attempt to enter the insulin events and the food events into the Guardian, but there is still room for improvement. And we figured out how to keep it on for longer, so we elimated some of the breaks in the lines of the graphs.

I have been careful not to jump to any conclusions about whether I like the Guardian or not because I have been warned that it takes time to adjust, just like with the pump. We also don't know how often he is going to wear it. However, I just analyzed Tommy's second three day period and I learned a ton about how Tommy's body really works, (for now.) I love this thing. (Tommy has not fallen in love with it yet. I'll keep you posted.)

After carefully studying his graphs, I now know that he is not getting enough insulin around 10:00 pm because he starts to go high at 12:00 am every day. My husband and I typically test Tommy at 1:30 a.m. and 4:45 a.m. Our pokes were missing the highest part of the peak at around 2:30 am. So, when Tommy does not have the Guardian on, we might change the time of our nighttime checks. I bumped up Tommy's basals from 10:00 pm - 2:30 a.m.

We also have to do a better job of giving the insulin a few minutes BEFORE meals with Tommy. The graphs showed a few peaks past 300 after breakfast and supper which I never caught because he finger sticks usually 2 1/2 hours after eating.

After seeing the data, I have set up a weekend pattern with his basal insulins. It is pretty apparent that his needs change when he sleeps in and moves around more during the day.

One of our future strategies with the Guardian might be to wear it one weekend a month and one weekday shift per month. That way I can make some monthly adjustments. I'm not sure yet how often Tommy will wear it. (If it were up to me, it would be 24/7.)

Friday, March 03, 2006

Small Life Style Changes

Jenny says:

A. Wearing the monitor
The monitor is bigger than an insulin pump, so I think it takes a little getting used to wearing for a 60 pound kid. But on the 5th day of keeping track of the Guardian monitor, I think he is finally used to it. For the first few days, I was trying to keep it on something nearby like a chair or table so that I didn't have to bug him if I wanted to see the numbers. But he never stayed in one place for very long and he often didn't remember to bring it with him, so it would alarm frequently and then I would have to go and find him. (Once the monitor can't find you, it alarms until you find it.) The monitor and the transmitter also have had some trouble communicating at night if Tommy rolls over a certain way or is bundled in lots of covers. So, we have decided that when Tommy is wearing the Guardian, it is either in his pocket or clipped to the waist of his pants. When he is sleeping, I have found that when I lay it on the bed next to him rather than on his night stand it still can find him, and I can take a look at the numbers or turn off an alarm without waking him up. (The alarms wake me up before they wake Tommy up. Heavy sleeper. Supposedly, if we were not to wake up and clear the alarm, it just keeps getting louder and louder.)

We look forward to the Minimed Pump 522 that will eliminate wearing this bulky monitor.

B. Calibrating the Guardian in Steady Waters
From Wil's blog ( and the Guardian literature it is explained that to get the numbers on the Guardian monitor to be as acurate as possible, it is important to calibrate the Guardian with numbers from a finger stick that was taken in calm times. By calm times or "steady waters" they mean that a number is not moving up or down very rapidly and that the number is neither very low or very high. (Even meters aren't that accurate when at those high levels.) We sometimes have trouble finding numbers that aren't quickly moving up or down. We learned a few days after wearing this Guardian that you need to enter a steady number at least 15 minutes before eating or giving insulin. You have to do that at least once every 12 hours. It has taken an extra thought to remember to calibrate.
C. Finger sticking
Ideally Tommy should do a finger stick test 15 minutes before he eats so that he can use it for a calibration check and to help him figure his meal bolus amount. This seems to take a little more thought than what we were doing. He was usually testing after the first few bites of his food.

Tommy has currently reduced his finger sticks by 2 or 3 per day. He is still poking before meals and at low/high alarms. I believe that as time goes on, we will be getting less low/high alarms and sometimes using the Guardian # to bolus for a meal; therefore, reducing finger pokes even more. The numbers seem relatively trustworthy so far.

D. Double site changes
We have so far decided to change his pump and the Guardian on different days just because it still seems so complicated. The Guardian literature says that it would be best to put it on in the morning. Tommy has only put two sensors in. I am hoping that it will soon become uneventful like when he puts in his pump site. Maybe then we will do them at the same time.

E. Entering Events like insulin and food
On the monitor, there is an option to enter an event like insulin, food, exercise, etc. This is very nice because when you look at the graphs in the Solutions software it helps to see when these things happened and what the sugars looked like hours afterwards. Since Tommy hasn't really seen the graphs yet, he is not very motivated to take the extra time to enter these events into his Guardian. (He is usually already entering data into his pump at these times.) So the data when at school, I have to get from the Carelink software from his pump. (This problem will also go away with the 522 pump because the finger stick checks will go straight to the pump without Tommy even pressing a button. Also, the 522 people will be using only Carelink software which will combine information from the pump, the sensor and the meter.)

Saturday, February 25, 2006

A very long appointment

Tommy says:
On Thursday, my Mom and I drove about 1 hour after dropping my brother off at school. I was happy to get out of school! We went to the same clinic where I went to get trained on my pump. My nurse, Sue was there to meet us. We went into the same room where I got trained on the pump. Lara from Medtronic was there with another nurse, Chris.

We started by putting in the sensor. A sensor looks a little like the pump infusion set. It helps take some of the fluid below my skin to be tested for sugar levels. There is a tool to help insert the sensor. It was a little confusing to put the sensor in the inserter. I felt it a little when I pushed the button to insert it. I could feel it for the first hour, but then I didn't even really know that it was there.

Then I stuck on my transmitter. I stuck a big padded sticker on the back of the transmitter and then stuck it onto my stomach. It felt like I was wearing a big band aid. We then plugged the cord that is attached to the transmitter into the sensor. The transmitter sends numbers from my body's fluid to the monitor.

After we had inserted the sensor and slapped on the transmitter, we had to tell the monitor to start calibrating. It takes 2 hours and 20 minutes to get a new sensor ready to read my numbers.

So while the Guardian was calibrating my Mom and Lara talked and talked and talked. The only part that was interesting to me was the computer downloading part and the actual end where I got to see my numbers.

After the appointment, I went to a sporting goods store and bought some basketball shoes. I missed the whole school day! It was pretty cool to be able to look at my sugar levels whenever I wanted. My Mom was more interested in my numbers than I was. She was kind of bugging me.

Friday, February 24, 2006

Hook-up conclusion: none!

Jenny says:

Well, here we go! Looks a bit overkill doesn't it?The 6 million dollar man comes to mind. He just needs his phone and his ipod hanging from his waist now. (Tommy took this photo while I was at work last night.)

The conclusion. None at this point. We covered many emotions yesterday. We both had many different feelings usually not at the same time. We were excited, fearful, happy, proud, anxious, disappointed, amazed, bored, annoyed, satisfied, and ecstatic.

More details later because I seem to be running many different directions right at the moment. But by the way, at 9:30 a.m., Tommy was 156 and dropping quickly. (That part of it is amazing!) I went and checked on him at school. The class was having a snack anyways. So it was good timing.

Thursday, February 23, 2006

Hooked Up!

Jenny Says:

We got hooked up today! I got to Tommy's appointment and the Medtronic Rep. asked if I wanted to wear a loaner Guardian for 3 days! So we both have one on! It is late, and we are tired! Overall it went well. I'll fill you in tomorrow.

Wednesday, February 22, 2006

Medtronic Paradigm Real-Time Pump on Chris Jarvais-Canadian Olympic Rower

Jenny says:
The Medtronic Paradigm Real-Time Pump, available in Canada, uses the same sensor system that the Medtronic Guardian RT uses. Wow! I will tell my 62 pound son that he will someday look like this!

Tuesday, February 21, 2006

Annual Transmitter Replacement Fee

Jenny says:
We are busy studying the guide book, getting familiar with the software, and rereading Wil's blog before the appointment on Thursday.

One of the things that I haven't mentioned yet is that the transmitter needs to be replaced annually. Our local Medtronic Rep. told us that in order to make something completely waterproof, Medtronic needed to use a nonreplaceable battery in the transmitter. This piece should stay on while Tommy is in the shower or swimming. The battery or batteries should last about 1 year. I called today to find out what the replacement fee would be and found out that it is $500 for a new transmitter. Keep your fingers crossed that health insurance coverage comes soon because this sure is getting expensive when you add an annual theft/loss insurance fee and this replacement battery fee.

But we are still very anxious to start using the Guardian RT. I accidentally slept through the 1:45 a.m. check last night. I didn't check him until I woke up at 3:30 am. He was 51! The last two nights he has needed a correction at 1:45 a.m. It doesn't seem to follow any real pattern these days. I can't wait until I can see more numbers. It will be worth it!

Tuesday, February 14, 2006

Learned of lost Guardian, replacement insurance concerns

Jenny says:
A mom that I know through the CWD mail list, has a 8 year old daughter on the Guardian RT. Unfortunately, a few days ago, they lost the monitor. The last place they remember seeing it was in Walmart. I can see how this could happen. The monitor has a belt clip, but it is not tethered like a pump. So it can go anywhere!! I have everyone I know praying to St. Anthony. I guess that is suppose to do the trick.

As soon as I heard this I called our home owners insurance agent about coverage for Tommy's pump and new Guardian RT. He gave me a quote on a rider after he called headquarters. They came up with $213 annually to cover the pump and the Guardian RT if it is lost or stolen. I guess it was a cheaper rate because I am not asking our home owners to cover it if it is damaged, only if it is lost or stolen. (Medtronic says that both devices will be covered by Medtronic if damaged. Yes, even accidental swimming, dropped in toilet, ran over with bike, these are all covered. I asked.)

Our home owners agent suggested that I contact our health insurance first before getting the rider. I checked this afternoon and found out that our health insurance will cover, up to 1 per year, a replacement pump if lost or stolen. Great news. I'm not sure if it would be at 80% or not. So now I will just need to find out how much it will cost to insure the Guardian RT if lost or stolen.

I am also working on labeling all Tommy's equipment. He has 2 meters, a pump, and a Guardian RT that should all be labeled. I'm going to try somehow to fit a sticker on these things that says: Diabetic equipment for a child/Call immediately if found/###-###-####. Hopefully that will deter anybody who might otherwise think that it is something cool to steal.

Feb. 23 Official Hook up

Jenny says:
We were finally called to set up the appointment. It has seemed like a long time. We will be going to our appointment on Feb. 23 to get the official training. Our Medtronic Rep thinks that it will take about 2 1/2 hours.

I asked if we could have Tommy use numbing cream for his first insert and our rep. said that it would be no problem. Tommy is ready to give it a try. He is still very excited. There have been many highs and lows this week that could have been prevented or minimized this week.

Thursday, February 09, 2006

I opened the box

Tommy says:
I think the Guardian RT might be kind of a pain because the monitor is pretty big and heavy. It also looks like it might hurt when I insert the sensor. But I haven't tried it yet. So I have no clue what it is like yet. I can't try it until I meet with my doctor.

Wednesday, February 08, 2006


Jenny Says:

UPS just delivered the two boxes. I opened the sensors because they need to be refrigerated prior to use. (They came in a big styrofoam box with 2 cooler packs.)

I am going to let Tommy open the second box after school. He text messaged me with his morning blood sugar, and I text messaged him back with the message that his Guardian RT came. He sent back a single smiley face.

Tuesday, February 07, 2006

Finger Stick Post #1

Jenny Says:
I have had several conversations this week with various people with diabetes or parents of children with diabetes, including Wil, the man that blogged his Guardian RT experience, (, regarding finger sticks and coninuous glucose monitors. Tommy currently tests his blood sugar a total of 9-15 times a day (with 2 or 3 of them occuring while he is asleep.)

Our main motivation for getting the Guardian RT is to be able to be proactive and not reactive to this disease. It is to use the trends to head off trouble. (Sleeping more at night is also pretty motivating.) We are learning that the Guardian RT tests the interstitial fluid just under the skin. These readings may be different than the readings from our blood glucose meter. According to Wil and a Mom that has a child in a Navigator trial, you can get these numbers from the CGMs to be very trustworthy. In the case of the Guardian RT, you need to calibrate it daily for optimal readings. Wil is currently calibrating one at wake up, one at 4 pm and one at bedtime. He is getting good results. (He also tests his blood before meals and sometimes before giving a correction. He also tests before treating a low. But he doesn't enter them into the Guardian RT.)

So, to me that means that I can estimate that after our learning period with the Guardian RT, we might still be testing 5 or 6 times a day. We will be eliminating the 2 hour after eating tests and the 2 in the middle of the night. That is more than I thought we would be testing, but if it effectively helps us prevent lows and highs from happening then I think it is worth it. (We'll see what Tommy thinks.)

Wil said that he has not had any alarms in recent weeks. So that means no highs or no lows! That is truly amazing to me. And the Mom with the child in the Navigator trial seems to also have very low standard deviations like that.

Sunday, February 05, 2006

Health Insurance situation
Jenny says:

The Guardian RT was approved late in 2005, so for insurance purposes, it hasn't even been assigned an insurance code. (Someone told me that new FDA things get insurance codes only at the beginning of the year.) So, I believe that there will be a more aggressive attempt to get the device and the strips covered by insurance in 2007 when they have a code.

I have had one brief conversation with our insurance company, and they told me that I should just have my endocrinologist send a letter of necessity and go from there. I have asked Tommy's endocrinologist if he could send one and really emphasize hypo unawareness. (Tommy does not wake up when he is low at night. ) I am not guessing that it will be covered or that it would be retroactive. But, I am still going to try. I believe that it can't hurt to start letting insurance people know about this life changing device.

Friday, February 03, 2006

Wondering about being in a study and pump 522/722

Jenny says:

Many people have asked me why Tommy is not part of a study. And the answer is that I did not find any studies to participate in. I asked at the University Hospital in Wisconsin and they said that there were not any there. (I think that is the most important, your endo has to be one that does research.) I asked our local Medtronics rep., and she said that it is up to the clinic and that there isn't really any motivation for the UW to do a study since it is already FDA approved and marketed. I also called Abbott to see if there were any opportunities to get on board for a Navigator trial, and there were not any trials in our area.

Well, we got our Guardian RT workbook today. Both my sons looked at it and examined the photos. They asked a few questions and then didn't give it another thought all day. ( Except there was a small discussion about how much Tommy would go for on e-bay once he was hooked up to his Guardian GT, his insulin pump, and had his braces on. ) :)

Our rep said that our product shipped. So it will be here soon.

Sandra Miller posted a comment on this blog on Feb. 1 about the next Medtronic Pump. It is going to utilize the Guardian RT technology, so that the pump and the monitor communicate with each other. She said that the new pump is already available in Canada. That news was a little alarming to us considering that we just spent money on the main component of the new pump. I called Medtronic and they said that the FDA slows things like that down in the U.S. I talked to my local Medtronic rep. and she said that the "522/722" insulin pump has been in front of the FDA since October, so she guessed that the earliest we would hear about it would be between October and January. That means that it wouldn't be marketed until January 2007 at the earliest. (I'm kind of hoping we will have a cure by then!! I know wishful thinking.) She also explained that when the new pump comes out, we will be using the same transmitter, so hopping on board with the Guardian RT now will not put us out any more money when it comes to buying the new pump in a few years. We may even be able to buy the software that enables Tommy's current pump to talk to the Guardian RT without having to purchase any additional hardware.

Thursday, February 02, 2006

Training Protocol:

Jenny says:

I am Tommy's Mom, Jenny. I will submit postings to this blog also. I will be using this dark red font. We will pass on any feeback from the other members of our family.

I am also excited for Tommy to try the Guardian RT. I believe that it will be quite an adventure for all of us. The UPS man rang our doorbell yesterday, and Tommy bounded for the door. He was disappointed when the box said "Lands End".

It is hard to wait, but I got an e-mail from our local Medtronic Rep. that confirmed that we will probably be busy with leg work before we really even get the box. She passed along a likely training protocol:
Pre training (homework including the manual, the workbook and hands on with the product)
Training 2 1/2 hours
Call following day to MM rep to talk about any alarms
Call 2 days later to talk through first sensor change
3 days later send 1st download report to endocrinologist
Set appointment with endocrinologist for 2 weeks post start of Guardian
Use Guardian RT either continuous or periodic depending on goals/expectations

It is only our rep's second "hook up". Her first one she did for an adult yesterday. (That patient already called her today and told her that the Guardian RT woke her up on her first night with a low warning at 3 am. The patient did a finger check and verified that she was 58! She treated and went back to sleep!!!) Better Days are coming!!!!

Wednesday, February 01, 2006

Our Situation Update:
Tommy says (Jenny editted this one):

Here are some of my current diabetes accessories. My blue Medtronic Minimed 515 on the left and my BD Paradigm Link meter is on the right. The two of them talk to each other and give us tons of information.

I use the MM 515 all the time, except at basketball and cross country practice. It gives me Novolog insulin constantly. I have to change the site every three days. (I use Silhouette infusion sets. I numb the area , and then I insert the infusion set. My Mom takes care of filling the pump with new insulin.) I will probably be pumping until the cure because I like it much better than shots.

I use the BD Paradigm Link meters, I have two, to test my blood sugar 9-14 times a day. I test three times during school hours. My Mom, and sometimes my Dad, test my blood sugar 2-3 times in the middle of the night. After having diabetes for 10 months, my fingertips are getting pretty bad.

Sometimes I have lows that I don't feel, but I usually catch them because I test so often. I have never felt a low when I am sleeping, but my parents have caught them with their checks.

We have ordered the Medtronic Minimed Guardian RT to help manage my blood sugar. It will give me a blood sugar reading every 5 minutes. I will be able to scroll to find past readings and get an idea of how fast or slow I am going up or down. It alarms if I go too low and alarms if I go too high.

I will attach it somewhat like I do the insulin pump. The attachment is currently the part that I'm most concerned about. I might decide that I'd rather manage without it, but I want to give it a try. I currently only use my stomach for my pump.

At my last endocrinologist appointment, my Mom asked my doctor if we could try the Guardian RT. He thought about it for a few days and then sent the prescripiton in to Medtronic Minimed. We paid for it a few days ago, so I am expecting it next week sometime. (The Guardian RT is not covered by insurance, and not FDA approved for children yet because it is so new.)

My Mom and I would be happy to answer any questions. We are new to blogging, so any suggestions for our blog would be fine.