RSS Feed

Tag Archives: Medtronic mySentry

The Great Sleepover Debate

Do you or don’t you? Should I or shouldn’t I? What if?

Tonight is KC’s first slumber party since she went on the pump last May. She hasn’t been invited to one since the week after her pump start. In that case, I chose to let her attend the evening festivities but picked her up before bedtime. And haven’t had to face that question again until this week.

I’ve said yes. I know there are other parents who don’t agree with this decision but we each have to look at our children as individuals not just as CWD. In KC’s favor, she’s extremely conscientious about managing her T1. We had a long talk about my rules for letting her do this, which include the fact that she must text me with her BG at dinner and at bedtime. She knows that if her BG starts to go high and doesn’t respond to correction, then she’ll have to come home early. She knows that she needs to rely on her friends for help and can’t be afraid to ask for it. She knows that she needs to speak up about measuring her milk and her syrup at breakfast.

In a couple of weeks, she will be 12 years old. At 12, I had been babysitting for a year, and was able to make dinner and bake without assistance from my parents. Yes, she is a child with a chronic disease, but she is also a tween who needs to be independent and not forbidden from participating in ordinary activities.

I recently watched MTV’s True Life “I have Diabetes”   I hated it.  (I’ll probably rant more on that in another post) Hated seeing what happens to some CWD when they are no longer under their parents’ supervision. Especially disturbing was the young college student who drinks heavily even though he is causing permanent damage to his body.  I wonder if this isn’t a form of rebellion–just like any teen whose parents are overly strict, T1 or not, who gets a taste of freedom and goes wild.  I don’t want KC to feel like she missed out on being a “normal” kid.  I don’t want her chasing the thrill.  I need to treat her just as I do her non-T1 brother.

Yes, there are special considerations.  Yes, contingency plans need to be made.  Yes, I will worry the entire night.

But

I have made sure she will be in the best possible hands.  Her friend’s dad is a family practice doctor.  I am sending KC with an emergency bag containing everything she could possible need.

We have pre-planned her dinner carbs.  The girls will be going to Ruby Tuesday’s for dinner and we took the time to preview the menu and store carb counts on KC’s phone.

And KC asked if she could take the mySentry with her….she wants it near her so it will wake her up if her pump alarms go off.

I always go back to “what is my purpose as her mother”:  to give her the guidance to learn to make good decisions; to help her grow to be a responsible person so she will be able to live on her own.

In essence, the same purpose as any mother.

T1 is a major part of our lives and we can’t escape it, but it isn’t everything.

Advertisements

Happy Valentine’s Day! mySentry Revisited

Can’t believe that one month has passed already! And I know you are wondering

“…well?!!!!! Do you still love it?”

And the answer is….

Yes, but not without some caveats.

First off, I do feel less stressed about nighttimes. Overall, we have seen an improvement in KC’s morning numbers because I have been more aware of changes during the night. But it has taken some getting used to!

Cons:

– I wish the monitor had an “away” function. It seems odd to have the monitor searching for the pump, when KC is away from the house.
– because this monitor is tied to the CGM, it has the same problems as the CGM. For example, occassionally on site change nights (we usually change between 4 and 5 p.m.) KC will go low around 10 pm and will drop rapidly. It takes the CGM a long time to catch up to her current blood glucose readings. What this means is that the CGM will continue to alert lows long after her BG is in the normal range…and therefore, the mySentry will continue to alert me of lows even though her BG is in the normal range. Which leads to the next con.
– you must remember to clear each alert from the pump in order for the alerts to stop sounding. In the case of situations like the one I described above, I must continue to get up and clear the alert each time even though I know her blood glucose is normal.
– as a result of the over-prediction of lows in such cases, I have ended up giving her too many carbs to bring her up which have then caused highs around 3 am. We’ve had about 3 nights like this–until I began to be more proactive. Now when KC is under 110 after 10 pm, I give her 2 glucose tabs. This small amount brings her up enough to stave off a further drop in glucose levels. This appears to be working–she is still a little high upon waking at 6 am, but we pre-bolus breakfast by 10 minutes and then she is usually back to normal by her morning snack time.

Pros:

– I have been able to catch lows early on as I mentioned above
– I have been able to treat highs without fear of falling asleep and missing lows that occur from correcting the high
– in our house, KC is read by the mySentry in almost every room in the house (we have a three story house and she is read in the 3rd floor playroom as well as on the first floor. Her Outpost in located in her room on the second floor.)
– I love that I can monitor her BG when she is in the bath or shower.
– I love that when she is home, I can check her BG without asking her (my husband commented on the same thing…he said he loved that when he passed by our room he could look in and see what her BG is.)
– I love that I can hear the alarms when I am watching TV in our family room.

Oh mySentry!

*UPDATE:  HAPPILY USING THE MYSENTRY WITH THE 530G PUMP AND ENLITES!

I had planned on my next post being about “The Light Under The Door”–it is what I look for each morning as I approach KC’s bedroom. I find myself holding my breath as I open my door and head around the corner to her room. I say a little prayer that her light will be on…i.e., that she is awake and well. I shared this thought with a D-Mama friend last week.

The next day, I received a message from her with a link to the Medtronic mySentry I knew I had to have it! This is the piece that has been missing from the pump/CGM combination. I love the CGM and the information it provides us about KC’s glucose levels. My only complaint has been that she sleeps through the high and low alarms that go off during the night. So the idea of a monitor that can be placed in my room, that will give me the same information that is on her pump including alerting me of highs and lows is something I knew I needed.

As other parents of CWD know, there is no such thing as a good night’s sleep after your child has been diagnosed with Type 1. We wait up to make sure BG levels are in the “magic” range. We wake up to check throughout the night. Could it be possible that technology would provide a tool that could help us manage the wee hours?

I googled the mySentry immediately…specifically the cost. I knew that chances are insurance companies won’t be covering this item yet. But I felt that there is nothing, other than a cure for T1DM, that I wanted more than this piece of equipment. I set out to make it happen.

Contacted my Medtronic rep to confirm cost ($3000 retail, but introductory price of $2400 to current Medtronic pump/CGM users–special offer of an additional $500 off for people buying the pump/CGM/mySentry as one package.  Upfront cost is 20% downpayment). As always, Medtronic has financing available and will provide help in filing insurance claims–but again, the product is so new that Medicare hasn’t even created an insurance code for it.

Next on the list was doctor’s approval–email sent and approval granted in an hour.

mySentry ordered and delivered in 4 business days.

And….

now for my feedback

Pros

1. Installation was easy (except for human error of forgetting to advance the menu on the monitor while waiting for the pump–).  It took less than 2 minutes for the monitor to find the pump.  Equally easy to set up the Outpost (the transmitter that needs to be less than 6 feet from the pump).  I put KC’s Outpost on her bedside table and the monitor on mine.  Her room is down an “L” shaped hallway from mine and transmission reception is perfect.  Also the monitor still reads her even when she is in the family room below her bedroom.

2.  Manual says that cell phones and WiFi may hinder the reception…however, KC was on her laptop and cellphone and transmission was perfect.

3.  Today was a site change day and a quick glance at the monitor before bed let me know that she would need to recalibrate her CGM at 3 am.  This gave me the opportunity to recalibrate right away instead of having the alarm go off.  Noticed that KC was a little high and gave her a correction by pump.  Off to bed!

4.  2 am:  alarm goes off on the monitor–“unable to find pump”  .  Happy to report that the alarm is not an annoying sound but definitely recognizable.  Moved the Outpost a little closer to KC and rechecked her BG–over 300.  Pump was working fine–I gave her a correction by shot and went back to bed. -Monitor was reporting her current pump information.   Looked at monitor several times during the rest of the night–saw her numbers go down.  Then at 8:30 high prediction alert sounded.  CGM glucose and BG were identical.  Probably a bad site.

5.  Again, the sound of the monitor alarm is loud enough without being obnoxious.  It is more like a chime–not at all like an alarm clock.

6.  Large numbers on the monitor easy to read for someone who needs glasses for both distance and reading!

7.  Easy to turn off alarm–icon is lit and located on the top of the monitor.

The Outpost on KC’s nightstand

Cons (or should I say “quirks”?)

1.  No “On/Off” button. To keep the monitor from alarming when KC is not in range–such as at school–you need to touch the icon on the top of the monitor.  This silences the alarm.  Touch it again and audio is reactivated.  Actually very easy and because the monitor is never off, it begins to read her as soon as she comes back in range.

2.  No backup battery power for either the monitor or Outpost.  This is something that I cannot believe the engineers overlooked!

3.  Outpost has the plug directly in it (like a nightlight has)….if you want it on the bedside table, you will need to have an extension cord.

I know that there are T1’s who don’t use the CGM because they are put off by the length/width of the insertion needle and by the insertion method.  KC isn’t exactly fond of it herself!  But good news ahead…Medtronic has created the Enlite sensor which is significantly smaller than the current model and has an inserter that is much easier to use.  The Enlite is currently available in Europe and should be available in the US within the year (pending FDA approval).  Hopefully, this new sensor will appeal to a greater number of T1’s.  I can’t stress enough how useful the CGM has been in managing KC’s blood sugar.  Since starting the pump/CGM combo 7 months ago, she has maintained an A1C of 6.4-6.5 the entire time

mySentry at bedtime