Goodbye Medtronic, Hello Dexcom

Let me just say we had a lot of trouble with Medtronic, not only with their pump, but also their CGM. I am not expecting perfection. I know technology is not quite there. However, I would like to sleep knowing my little man is ok. We originally went with Medtronic's MySentry. While it is a great idea, it is not covered by any insurance plan. $3,000 out of pocket is ...., esp when already crippled with the cost of diabetes care. Medtronic's CGM is painful. It leaves a welt on my little guy no matter how much gauze I put under the transmitter. Plus, it scares him terribly. If you have ever had to stick your baby with a needle while they are saying, "please mommy, please mommy, I am scared." over and over again with tears in his eyes, you would know the torture. I ended up having to put the sensor in while he was sleeping. Our process was numbing cream on before he went to bed, after he fell asleep I would insert the sensor, wait until his blood sugar was stable in the night (which for us was about midnight) to be sure I could sleep without CGM data as it would take 2 hours just to get a reading, take out the transmitter at midnight, charge it for 15-20 min, insert the transmitter, go back to bed for 2 hours, get up and enter bg, and up within 6 hrs to calibrate again. This way, there would be two stable readings as Medtronic does not allow for calibration with any arrows of moving blood sugar. One other HUGE downfall of the Mysentry is the screen brightness. OMG, you cannot turn it down to a reasonable level. It is like the "sun" in your eyes all night. I don't know any 7 yr old who's blood sugar is not constantly moving somewhere. He is either eating or running around all the time. I found the Medtronic system to be tempermental. If you want to get up numerous times in the night for no reason whatsoever. It would go off as a low and end up at 160. This happened ALOT. Also, HUGE downfall. YOU CANNOT HEAR THE PUMP ALARMS FOR A LOW ON THE PUMP. Numerous times, the low alarm went off at school for 20 min or more and one time it went off for over an hour. NOT ACCEPTABLE! The CGM is designed for safety. There is no way to turn up the volume. Introducing Dexcom. I need to say. Dexcom = LOVE. No screaming when inserting while he was fully awake. It was accurate at first calibration. Only 6 points off right away. WOW! The alarms are much louder. First, it will vibrate and if you do not respond it will sing a tune. I also like the range. I can get a signal throughout the WHOLE house. Keep in mind it is 2400 sq ft. No more Mysentry unable to find a signal. I love not having the integration. I don't have to constantly ask while we are out, "Zach, what is your number?" I can see at Kung Fu just what he is at without sweating it the whole time as his Medtronic pump never got a signal while I held as he was in class. The responsibility for now lies on me, as it should. For now.... He is 7 and should be a 7 yr old boy. Not constantly worrying about his "number". He can't control it. Leave it to mommy. I can take that from him for now. He will have his whole life to deal with "numbers". We can focus on carb counting which he is interested in and readily looks for on labels. Bottow line, Dexcom is fabulous. I have had it less than a week and did not need any special training to set it up. Accuracy is SO MUCH better than Medtronic. For example, this morning the readings from his meter and the Dexcom matched EXACTLY. This will allow for much better control and overall better health. Not only for Zach, but for mommy too. I have actually slept through the night every night since we got the Dexcom. I hadn't slept through the night with the MySentry in awhile.

We should all be scared

I never thought of diabetes before 7/6/12.  In talking with our Dr office, they have seen a huge increase.  Do you remember anyone as a type 1 diabetic as a child?  Do you remember 1/3 of your class being allergic to this nut or that?  Something is going on. ) f we don't open our eyes, it is our kids who suffer.  http://mobile.usnews.com/health-news/news/articles/2013/02/08/type-1-diabetes-up-70-percent-in-kids-study-finds

BEWARE! Medications and Carbs

A couple of weeks ago, Zach's blood sugar was very high after breakfast. In trouble shooting, I realized the only difference was the Claratin. In researching the carb count was over 15g. Yikes. Here is a great list of carbs I found in medications.

Dear Medtronic

Dear Medtronic, It is with great regret we return our insulin pump, CGM, and MySentry. We are on our 4th (I think....I lost track.) pump from Medtronic since we started pumping back in October of 2012. Not a great track record I know. I believe the erratic (putting it mildly) blood sugars in November and December were due to a leak somewhere in the pump. At our 6 month follow up (2 months into pumping), we were told to get a new pump from our Endo. They examined the reservoir bubble issues we were having and reviewed our data from Carelink. There is absolutely something wrong. Call today. I called Medtronic and told them our Endo stated we need a new pump. Of course, no problem. What they didn't tell me is in the package would come a "recertified" pump. Imagine my surprise the next day when I open our UPS package. WHAT???? My heart was sinking. I could barely make out the screen. It looked used. I was not feeling good at all. After all, I have a pretty, shiny brand new one that is still pristine, but defective. I call about the screen and Medtronic sends me out another refurbished one, even after my protests. So, the 3rd one comes the next day, at least I can see the screen. Within one week, his blood sugars stabilize. No more craziness. Thank goodness. His basal insulin rates decreased by over 1/3 to 1/2. Tell me there was nothing wrong! I call Medtronic and tell them there was obviously something wrong with our original (2 month old) pump as my son's blood sugars have stabilized. I would like a report on what malfunctioned. She tells me this cannot be done as it needs to be requested when you ask for a replacement. News to me. Very convenient how it was not mentioned. I ask if there is anyway this could still be done as they had not received it back yet. She checks with her supervisor. Good news, I can now know why I felt like I was losing my mind for the last two months. She offers to send me a brand new one as I was unhappy with refurbished as a replacement for a 2 month old pump. Alas, we get the brand new pump and I am praying final pump. It does not connect well at all with the MySentry. Weird.....never had a issue before. It loses connection all night and all day. I try to re-connect it with the pump and the pump and the mysentry are literally on top of one another........no connection. I call Medtronic. 30 min wait. Ahhhh! I start trouble shooting on my own. I wonder if the battery would do it. I change the battery on the pump even though it is only missing one bar and the recommended brand that came with the pump. It works! No lie, within 3 sec, the rep from Medtronic answers. She is rude and tells me next time to call sooner so we can trouble shoot. Um What!!!! I did, you made me wait. I tell her this and it does not phase her. Brand new pump #3 now has a new problem. About two weeks into using it. Motor Error. GREAT! We are at my parents house after dinner and he is standing right next to me. Nothing else going on. I call Medtronic. Another 30 min wait. I am fuming. After the rep gets on, we trouble shoot and he cannot find a thing wrong with it. They try to put the blame back on us. Did he bump it, NO. He was standing right next to me. If you knew my son, he is the most laid back and shy kid. The representative tells me it is ok to put it back on and watch his blood sugars. Not feeling good at all. It is my baby we are talking about. Three days later, he is standing next to me in the kitchen waiting for dinner. I had just bolused him. Motor error. I am in a rush as it is Kung Fu night and we need to get out the door. You have got to be kidding me. I call Medtronic at Kung Fu.....another 30 min wait. Terrific! The Medtronic rep. begins to try to trouble shoot with me. I am done. I don't want this pump. Two motor errors in 3 days. No thanks! I ask for a new one and she says this is standard at the second motor error. She gets it all set up for next day air and I ask her. Now, are you sending me a brand new pump or a "recertified" one. She tells me it will be recertified. I ask for a new pump. She is arguing with me as last time was a "courtesy to me". A courtesy to me....wow, I am wondering if she is hearing herself. So, I tell her. You mean to tell me you want to send me a "recertified" pump for a replacement for the brand new pump you sent me just two weeks ago. Yes, this is company policy. I tell her are you hearing what I am saying. You are replacing the brand new pump you sent me two weeks ago with a refurbished pump. I want to speak with a manager. The manager never gets on the phone. She comes back after 5 min and explains my manager will do this one last time as a courtesy to me, but will not happen again. Wow, this is a courtesy to me. I am tired. I wish they would realize how hard this is on my family, esp. Zach and myself. I am tired. I get the brand new pump on him after reverting to our back up plan. My poor little guy misses another half day of school. He has missed at least 5+ days due to pump issues in less than 4 months. This is unacceptable. He is shy and it is hard for him to get into a routine. Frustrated would be an understatement. I send him back after missing his half day of school. When I pick him up and get closer, I realize his alarms are going off low...low...low. I check the alarm time. 20 MIN AGO! Given the considerable lag time and the rate Zach's blood sugar moves, I am panicked. (Keep in mind, I have set a low predict at 85 at 20 min ahead of time. Once it states he is there, he is generally very low. I have had a 139 double arrows down and him show up at 44.) This was my final and last straw. There is no way to set the alarms louder so someone ANYONE could hear while he is at school. The CGM is designed to keep him safe and didn't do it's job. Poor design flaw on Medtronic’s part. The patient should be able to determine the volume. Especially, for pediatric patients. I don't feel safe. I feel defeated. Nothing will give a mom more nightmares than questioning the safety of a medical device on their child. I call the returns number the next day. The woman I talk to is extremely rude and uncompassionate. This is not a decision I took lightly. I don't want to have to return all of this. I wish I could just tell her this. It is a nightmare. I would have been thrilled if we could have just stayed with our original pump, CGM, and MySentry. We could have left this roller coaster ride long ago and moved on with our lives. Choosing Medtronic was not a decision we took lightly. We are talking about my 7 yr old. I love the mysentry concept. While it is not perfect and there are some quirks with the CGM and connection issues, it is worth it and the main reason Medtronic was chosen. That is saying alot giving the huge out of pocket expenses it incurs, not covered by insurance. This was not easy financially for us. The daily obstacles of school plans, complications of diabetes, sick days, time and training are hard enough. Medtronic, I implore you. Please learn compassion. Diabetes is a complicated disease. Parents dealing with diabetes in their children are overburdened, tired, and scared. To feel this lack of compassion after shelling out so much money. I don't know how this is ok? My son does not deserve a "used car" kind of warranty for a life saving medical device. I just wish I would have felt compassion from the online call center. It really is unacceptable to send a 7yr old refurbished pumps when he has been pumping for 2 months. Then, to send a new replacement and offer a refurbished one to replace their new one and to basically tell me too bad if it happens again. I feel beat down and dragged through the mud by Medtronic. I have started the return process as I stated above. The purpose of this letter is to explain my decision as a mom of a type 1 diabetic child. I cannot even begin to express the emotional toll this has taken on our family. Can you imagine having to return a medical device your child relies upon to save his life, wondering when you will be able to get another one? Sincerely, Melodee Dettmers mom to Zachary Dettmers

83... a great number, but......

83 is a great bg to be at.  Fabulous right?  Not so much for a mom of a type 1 diabetic at midnight.  Scary actually.  Not much room before the dreaded night time low.  So, I go for a juice box.  Not all of the 4 oz as I know it will raise my little Guy almost 100 points up.  Wondering how other type 1 moms feel about anything under 100 at night.  How low is too low to you?  I know it is erratic at best for us in the honeymoon phase.  Sometimes his body kicks on and keeps kicking and other times not so much.  Now, I just wish our mysentry would find the new pump.  Seems as though the new pump we got does not get a great connection with our mysentry like the others did. 

Tired and have jury duty tomorrow.  I am still pretty upset about it.  I told them 6 months ago right after the type 1 diagnosis that I am Zach's primary caregiver and I really do not have anyone else to take care of an emergency.  Not good enough for them.  Really???  Crap if you ask me.  I will have my phone on me and I will be checking emails and if the school calls you bet it will get answered.  This is my baby.