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Monthly Archives: January 2012

Milestones

From the day our children are born, we are marking time by milestones. First smile, first solid food, first step. Before we know it, it’s the first day of school, first sleep over, first crush. Each milestone creates distance– small steps helping to prepare parent and child for the day when the child leaves the nest.

My generation of mothers have been labeled “helicopter moms” because we are constantly hovering over our children. And it is one of my greatest trials as a parent to learn to let go. Food allergies and T1 add to the challenge…how do I let go and keep my children healthy? In reality, all parents face this same challenge. For some of us, the challenge is physical and clearly definable. For others, the challenges lie within. I remember #1 son-a wise beyond his year’s 10 year old- saying “All 5th graders have issues, Mom.” I think it is safe to paraphrase that and say “All people have issues.”

#1 son’s issue is the food allergy.  For 14 years, I”ve been the parent who goes on every field trip.  But the time has come to let go and let him manage his “issue” on his own.  He has spent the past three days attending a Model UN conference and has been completely on his own regarding his lunch and dinner.  He has had to go to unfamiliar restaurants, inform the wait staff of his allergy and make his own decisions about what to eat.  Yeah, I know what you are thinking…he’s 14…of course, he should be ordering his own food!  We’ve been encouraging that for years…but when Mom and Dad are around it is always easier to defer to them, especially when eating at new restaurants.  It has been easy for  him to order safe foods at his favorite places as he already know what he can have to eat.  I love that he has had this opportunity to be completely independent and spontaneous.

As  his 15th birthday approaches, I’ve been thinking a lot about him getting his driver’s license.  So hard to believe that he can begin learning to drive in just a few months.  A huge milestone!       A huge leap into adulthood….am I ready?  Lately, I find myself in conversations with other parents about how difficult all this chauffeuring kids around is becoming.  In my case, two kids at two different schools with at least 4 clubs/afterschool activities and 2 sports going on in any given week.  This is all part of the master plan to make parents actually a little relieved to have an additional driver in the house!  Okay, only just a little bit…

As a parent, whether your child has T1 or a food allergy or any other “issue” the greatest gift we can give them is the skills to take care of themselves.  I once heard that the most important skills a child can have are these 3R’s:   be “Respectful, Responsible, and Resourceful.”  I’ve tried to live this way:  be respectful of yourself and others, be responsible for yourself and your belongings, and be resourceful–if you don’t know something, find a way to figure it out.

As I took a break from writing this, I checked out my FB page and there was this quote:  “One of the best actions we can take along with courage, is also to relax…”  Thanks to Mommy, What is Diabetes?

So relax all you  parents out there and have a great weekend!

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

What I wish I knew a year ago and other tips for living with a Type 1

When you are the parent of a newly diagnosed T1, you are given more information than you can possibly remember. My brain was focused on the medical information–so scared that I would give her Lantus when she was supposed to get Novolog or that I would miscalculate her dosage etc. On top of the medical management, there are the new dietary concerns, mainly carb counting. Add to the plethora of info the emotional aspect of dealing with T1 and a sense of panic surely sets in for all.

I consider us lucky to have been dealing with a food allergy for 14 years–we were no strangers to reading labels. Furthermore, about 4 years ago, I created a monthly menu calendar of 25 dinners my family would eat with no more than 1 of 4 people complaining about the meal. So the first thing we did after KC’s diagnosis was figure out the carb counts for those meals and her usual breakfast and lunch. Having those basics written down kept us from scrambling for a calculator at every meal. And over the course of the year we have come up with many time saving methods of managing the basics of feeding and caring for a T1. So here ‘s my Top 10

1. We bought KC a cell phone. She was almost 11 at the time and responsible enough to handle a phone of her own. The phone was for emergency purposes alone–she keeps the phone with her at school. She used the notes function on her phone to put in her carb ratios and some carb counts.

2.  As I stated earlier, we did carb counts for our common meals.  KC typed and put the menus in a binder which we kept in the kitchen.

3.  We created a school lunch carb counting flowchart that was laminated and kept in her insulin bag. Pick and choose menu  We have since added a School Lunch Carb Chart and Serving Size handout that is posted in the cafeteria because the school now has two children with T1.

4.  To help KC and the school personnel overseeing her insulin injections, I created a chart with the current carb ratios and correction factors:  sliding scale for insulin dose 12 break and 16 lunch carbs 80 to 150

5.  We got KC a larger insulated bag with a shoulder strap so that she would carry enough snacks and other supplies with her during the day.  She has now progressed to carrying a small purse.  She loves Vera Bradley so those are her bags of choice but Thirty-One http://www.mythirtyone.com/77451/  has some great choices.  This particular rep is also a T1 mom and donates part of the proceeds to JDRF.

6.  KC is in middle school and moves around to a number of classrooms each day.  We created a “low” kit for each classroom that includes instructions for dealing with both highs and lows plus emergency contact information.

7.  KC’s “sick box” is an organizer that hangs on the back of her bedroom door.   It holds extra lancets and strips, extra meter and lancing device, batteries for her pump + sugar-free cough drops/throat lozenges, Tylenol, nasal spray, thermometer, flashlight, glucose tabs…you name it, we’ve got it!   Also created a mini one for the grandparents and for sleepovers.  Another tip….we recycle the  plastic gum containers that fit in cup holders for mini-sharps containers and for lancet/flexpen needle storage.

8.  I put pre-packaged snacks, oatmeal/drink packets, pasta, rice etc. into storage containers and then tape the nutrition labels on the containers.  I also spent an afternoon figuring out portion sizes for the pasta (hate that the labels talk about ounces or grams instead of cups–and dry measurements instead of prepared!)  Also did this with leftover Halloween candy–see my post on Halloween for more tips!

9.  We keep extra insulin in a mini-fridge.  I put all the insulin in a plastic container so that it is easy to grab in case of an emergency.  I also bought a thermometer for the fridge to make sure we are keeping the insulin at the right temperature.

10.  We no longer use Lantus as KC is now on the pump…but I solved my problem by keeping the Lantus flexpen in it’s box and in a separate place from the Novolog.

KC's "sick box" supplies

labeled pantry items