Friday, January 4, 2013

The Bag Backfire


Nothing is ever simple when living with diabetes, is it?

Raising a child with diabetes includes a whole new set of things you've got be ready for.  In addition to all the regular growing up and gaining independence stuff there's all this diabetes stuff too!

Because Sweets was diagnosed a few short weeks after turning three, most of her care to this point has been done by J and I.  A three year old can't really read carb counts.  But all that is starting to change and it's adding a whole new dimension to our lives!

And, of course, it's never quite as simple as we hope it would be to keep our kids safe at school.

This is where my story begins...

After the tragic events in Connecticut, J and I decided that we were being too lax in our preparations for the "what if".  Last year Sweet carried (her teachers carried) a bag with her whenever she left the classroom that contained a fact sheet, meter, smarties, juice and glucagon.  We felt it was important that she have these things with her at all times.  You never know what's going to happen and should there be a lockdown and she couldn't get to her kit she would at least have the supplies she needed to stay safe.

This year, at her new school, we decided to just leave the bag in her classroom.  The other classrooms in the school that she visits have kits that contain things to treat a low.  Remember, she's not the only one now.  Now she's one of EIGHT.  (and yes, unfortunately that number just went up)  The thing is- those kits don't have meters.  They don't have glucagon.  There isn't one outside.

We were ok with that.  Before.

Now, I just can't shake the feeling that I'm being irresponsible if I don't insist she have access to her supplies at all times.  The probablility of something happening is slim.  But what if???  We all know that things happen.  And they happen to us.  I would never forgive myself if she needed her supplies and did not have them.

So, we decided that from now on she will carry her bag with her when she leaves the room.  We got her super cute sparkly Hello Kitty purse to keep her stuff in.

Problem solved, right?

Wrong.

One little problem.  There is now a state law that says that glucagon can not be carried by a student or a teacher and is only allowed to administered by a trained person.

Say what?

I won't go into that whole thing.  Long story short is that if we have doctors orders she is allowed to carry the glucagon in her emergency bag.  Would someone actually use it?  Maybe not.  But at least it's there.

So now the problem is solved, right?

Nope.  Not yet.

When I picked Sweets up from school yesterday, I asked her how her day was and the bag was.  She said it was fine and she liked it.

Then she told me that she felt low during lunch.  So she decided to test herself.  Except she's too chicken to push the lancet and so her T1 buddy in her class did that part.  But the meter didn't work right.  So she just kept eating.

Nice.

So we had a little talk about how that bag is for an EMERGENCY.  And that if she feels low, she needs to tell an adult before she does anything else.

She said, "Why?  ________ (T1 buddy) and I can handle it."

Oh dear.

I told her that I was glad that she was taking responsibility and it was a good thing to test but that at school she really has to get an adult to help her.  And besides, does she know what numbers are high and low?

"Not exactly.  But _____ (T1 buddy) does."

Great.  Looks like we need to work on the high/low thing!  We also had a discussion about how they are not allowed to do that at school without an adult helping.

I thought she got it.

Problem solved!  Right??

Oh, no.  Not so fast.

I'm not even kidding you ... as I am WRITING THIS BLOG I got an email from the nurse saying that Sweets felt low in class this morning and had half a juice box on her own.

ARE YOU KIDDING ME?!?

WHAT am I going to DO with this kid?!?

It seems we need to have another discussion.  And if she can't handle the bag....

I know that she thinks she's big stuff with her own bag.  She's proud of herself for being able to read the carb counts on the labels and bolusing herself (with someone watching).  I'm GLAD that she is starting to take some initiative in her care.  And that's she is paying attention to her body.

BUT....

That can't happen at school.

I don't want to crush her independence.  I want her to continue to develop these skills.  But I also need her to follow directions!!

Looks like we are going to be having another little talk tonight about the bag and when she is supposed to use it.  Maybe it's not the best idea after all.  We will see...  I think she's responsible enough to handle this.

She just has to get the rules straight.  She doesn't like to break the rules.

The thing is - sometimes she thinks SHE knows best!

** Thanks to Misty for this blog name!  It was her idea!
** If you have any suggestions or ideas for me - leave me a comment!  I appreciate all the help I can get!  This is brand new territory for us!



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12 comments:

  1. Well .... okay so I totally agree she needs adult supervision in her diabetes care. In fact, I think -- in retrospect -- I let Lauren have independence too early in life (even in teen years they need some oversight). BUT ... to err on the side of treating the low is the better "err." I mean we always say, when in doubt, treat, right? Maybe just say good job on treating your low. however, any time you can involve (teacher, nurse, mom, whoever), we would like you to. I would not want her to not treat a low

    as for the carrying at all times. This is what I took from the Newtowne event (and remember my child is grown now so easy for me to say but...) If there is an emergency where lives are in danger, I do NOT expect a teacher or aid or nurse to remember my child's d supplies. If you have them in place in classrooms etc she'd have what she needs in a lockdown. and if they have to flee the school well, there are ambulances and police and help all over the place in the world. I'd rather they take care of the big picture --- a little time without diabetes supplies is not going to be the worse thing that happened that day .... that said, high bgs, no big deal over time. Low, needs quick: glucose tabs in pocket.

    None of this is easy, of course.

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  2. My daughter was older when dx (almost 8 last spring) so she's been heavily involved in carb counting from the get go. Last school year (she only had 2 months after she was dx) every bs check was done with office personnel. This year, she has more independence (good) and primarily tests in her classroom. Initially, this made me really nervous, so I made up a little cheat sheet for her in her bag. Less than 80, do this. 80- 140 do this, etc. She has tabs with her, but her juice is at the teacher's desk, so she just can't swig it at will!
    It is a tricky thing for sure. We want them to have independence and to learn how to handle D as an adult, but they are still just kids!

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  3. I am just in awe of type 1 parents of little ones. My son is 16 and is very independent, he is just having to learn how to add d care to his routine. Not the best explanation, but don't want to write a book! Good luck! I wish I had ideas for you!

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  4. Thanks for the advice, ladies! I probably should add... She wasn't actually low today - and she didn't test herself first like she should. It's tricky - I definitely want her to treat a low or a suspected low... but I'd feel better about that if she actually FELT her lows! It's a work in progress, I suppose.
    And the bag... Ugh. I don't expect teachers to be thinking about diabetes in a situation like Newtown. It just got me thinking about other situations - like fire drills and tornado drills... and ACTUAL tornadoes... I blogged about my experience with that... http://www.theprincessandthepump.com/2011/02/tornado.html I just want to be prepared. And yet... there's no right or wrong answer here. Maybe the bag is a good idea. Maybe it's not that big of deal in real world situations.
    No matter - she is definitely starting to take some responsibility for her care and that pleases me very much! I'm so glad I have the support of this community to help us navigate these new paths!!

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  5. Hallie, I am an adult with T1 but we have to do 'the bag' too!
    I pack in layers. The bag I keep all the time has the meter, strips and glucose, plus a little card with some info on it. I never leave it!! The next bag has glucagon, more glucose, a snack and a site change. If I'm going anywhere where I might be detained or even if I'll be there a while, I take both bags. I think of a time when a tornado hit and I was at the mall(with my little bag)...and they refused to let folks leave. Wouldn't you know, the stress made me crash and I had to ask security to go get something from the food court. Lesson learned....take the bigger bag if you are going in somewhere! I also keep emergency boxes in all the places I dance. Layers are a good thing....you don't feel so weighted down. I think probably Sweets is just a little excited about her new independence and, after a few good talks, she will understand how to use her bag! You and I know, as teachers, emerging independence is a tricky subject! LOL Good luck! Sherry

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  6. Hallie....I'm an adult with T1 and something that works for me is to pack in layers. I ALWAYS have a small bag (Hello Kitty...I confessed!)with the meter, strips and glucose tabs. In a little bit bigger bag, I have the next layer (site change, more glucose, tape, carb snack, protein bar, etc.)If I go anywhere where I think I might be detained or be longer than a few minutes, I take the big bag (with the little one tucked inside). Lesson learned when I ran into the mall one day and a tornado hit. Security wouldn't let anyone leave....we were sent to the basement. The stress made my BG drop and I had to ask for food from somewhere or someone. You can also leave the second layer stuff in each place she might be during the day....like you do. I have a box at each place I teach dance with this stuff in it so I don't have to carry it in and out each time. I think most likely she is enjoying her newfound power and freedom and , with some more time and talks, she will handle her bag just fine. You and I know (as teachers) that emerging independence can be a tricky thing! Congratulations to Sweets!!

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  7. My now 9 yr old (dx 2) has a bag with her at all times, but it isn't just for emergency use. It has her emergency supplies, as well as extra test strips (2vials), and both her regular meter and ketone meter, 2 juice boxes and a few smarties, wipes, insulin, syringes, spare set of medical/site,glucagon, and we allow her to use the meters/strips/wipes/juices and replace them as needed. It is kept with her at all times and everywhere she goes, just in case a situation arises. More staff are being trained and she's never left with anyone untrained in at least glucagon/low blood sugar. She also has walkie talkies in her rooms for when the teacher needs a nurse or nurse assistant, for alarms, etc.. on her pump. My child has hypoglycemia unawareness and she has not regained awareness in over a year or two. She is the child who drops from 300 to 30 in a few minutes of sledding in the cold. She needs her supplies all the time. It's just the type of child she is with D.

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  8. It is definitely a tough situation to deal with. My daughter was 13months old when diagnosed and is now a very independant 9y/o (who is still learning too). The best thing you can do is keep TALKING and be patient, :-) she will start to get it. Reassure her that you are very proud of her for wanting to be independent but it is very important that she is being responsible and having an adult help her too. Maybe explain to her a little about how lows can make it hard for her to be able to make the right decision without a bit of help from a grown up (especially since she is still learning) . As for the emergency procedures we have a bin in her class room with all supplies and have gotten Kendra into the habit (since k) of carrying her test kit(mini meter, lancets, strips) and a package of gluco tabs with her wherever she goes. This way she has the basics with her but its not big and bulky for carrying (even on playground).
    Hope this might be helpful :)
    Kim

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  9. It is definitely a tough situation to deal with. My daughter was 13months old when diagnosed and is now a very independant 9y/o (who is still learning too). The best thing you can do is keep TALKING and be patient, :-) she will start to get it. Reassure her that you are very proud of her for wanting to be independent but it is very important that she is being responsible and having an adult help her too. Maybe explain to her a little about how lows can make it hard for her to be able to make the right decision without a bit of help from a grown up (especially since she is still learning) . As for the emergency procedures we have a bin in her class room with all supplies and have gotten Kendra into the habit (since k) of carrying her test kit(mini meter, lancets, strips) and a package of gluco tabs with her wherever she goes. This way she has the basics with her but its not big and bulky for carrying (even on playground).
    Hope this might be helpful :)
    Kim

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  10. First hi!!!

    So happy to be here ;)

    Personally I say let her to for it. Not correcting highs but lows. It may be a trial and error where she mistreats and isn't low, it it will help her distinct the feelings and learn how to actually handle it.

    This is what we did with J and it worked after many many unnecessary packs of smarties.

    Call me. Love you!

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  11. My daughter is just a few months older than your daughter and is on the OmniPod. The way we work the school thing is that she carries her PDM in her lunch box with a small tube of cake frosting. The lunchbox goes everywhere with her so she always has the ability to test. The nurse has an emergency bag she take outside to all fire drills, lock downs, etc. and it contains things to treat lows and glucagon but also epipens for allergic kids and other things she might need in an extended time away from the office. We keep the cake frosting in her bag so in the worst case scenario she has something if all other plans fail. We also keep juice in the classroom for emergencies. Good luck!

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  12. Roxy is 4 1/2 (dx 21 mos). She knows she gets juice or candy for lows and says, "I love it when I'm low!" So far we are taking baby steps to independence. She'll be in all day Kindergarten next year at a new school, so we'll be starting over with training teachers on her care. We'll see how much she wants to be involved. It's great to read this, though, to start thinking of how to handle some of these things. Great comments!

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