Which Came First? The Meltdown or the Low?

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As you can see from this (rather large) photo… blood sugar levels were floating along nicely at a pretty steady 115ish for a few hours after her very low carb dinner because she decided she only wanted chicken and sauce and not the side of rice.  Okay, fine, whatever, no big deal.   Dinner was a little later than usual this evening because I didn’t got the slow cooker started until later than I should have and so what, it happens.

We were watching the 3rd episode of Sherlock season 3 on Netflix and OMG it’s 8:45pm and you didn’t do your homework yet and you still need to take a shower before bed.  Of course, like every time I tell her she needs to do homework or shower (or both) there’s lots of whining and complaining and “I’ll do it super quick 5 minutes before I’m supposed to be asleep.  Please let me play on the computer for the next 40 minutes until then.”  To which the answer was a very firm “Not on your life.  If you can really do all that in 5 minutes then do it now and then you can have until bedtime to play.”  Makes sense, right?

Well, she did do her homework and it really did take her about 5 minutes.  But then it was time for the shower and instead she’s picking at scabs on the back of her heels.  I may not have mentioned this before but she has pretty bad eczema and one of her “quirks” is that she scratches herself bloody on a fairly regular basis despite our best efforts to keep things under wraps.  Well, she had some scratches already and she apparently decided that picking at scabs and scratching was a better use of her time than, oh, getting in the shower so she could actually do what she really wanted to do (computer time) before bed.  Around 9:10 I finally coerced her to stop picking and get in the bathroom for her shower.  Five minutes pass, no sound of the shower.  Ten minutes pass, still no sound of the shower.  At this point I announce that it’s 9:20 and she better be getting in the shower because it’s 10 minutes until bedtime.  At which point she promptly starts crying and sniffling in the bathroom.  She doesn’t want to get in of course, because all that freshly raw skin is going to burn under the water stream.

We’ve recently started recording her various “meltdowns” at the direction of her behavioral therapist so when the crying hadn’t subsided in 10 minutes I decided to start recording and go in to see what could possibly be the matter.  Of course she won’t talk to me, won’t get in the shower, won’t look at me, etc.  Just crocodile tears and lots of sniffles.  Any suggestion on my part that she now, finally, get in the shower is met with a sound that is similar to a cat that’s been backed into a corner and isn’t quite hissing, but has that deep rumbling sound they make that says “I WILL scratch you!”

After about 10 minutes I manage to get her into the shower and get her hair washed, her crying and being generally uncooperative the whole time.  I finally leave the bathroom with 21 minutes of this weird crying, sniffling, growling audio recording.  At this point her pump has also been off for almost an hour.  I think maybe her blood sugar is going to be heading upwards since no basal insulin and am shocked to see that instead she is 72 with a sideways down arrow.  I manage to check her with the meter (she, at this point, is laying in the bathtub with the water off but not getting out) and it also says 72.

And then I realize… She started dropping at 9:15.  The same time that she finally headed into the bathroom to start this entire process.

So… which came first?  The chicken or the egg?  Was this drawn out emotional meltdown the result of a blood sugar drop?  Or was she really that distraught over the prospect of showering that her blood sugar ended up dropping low?

Just one of those stupid, stupid things that we deal with living with a child with Type 1 and other emotional/behavioral issues.  It’s often hard to tell what caused what…

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#DBlogWeek 6 – A Year of Diabetes, In Pictures

Diabetes Blog Week

 

Click for the Saturday Snapshots – Saturday 5/17 Link List. 
Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.  ~ From Bittersweet Diabetes.

 

Well, I was attempting to embed a slideshow, but apparently that’s not allowed.  So, here, have a link:  Diabetes in pictures.

#DBlogWeek 5 – Diabetes Life Hacks

Diabetes Blog Week

Click for the Diabetes Life Hacks – Friday 5/16 Link List.
Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)  ~ From Bitter~Sweet Diabetes.

 

We’ve only been doing this diabetes thing for almost 14 months.  Most of the “hacks” I know I learned from other people from the DOC.  So I most everything I am going to share in this post are most likely not original ideas, so I don’t get to claim the credit for anything except being the one to pass on the information.

DLH #1 – The Site Change Baggie.  

This is one of my favorites and makes like SO simple, especially for the busy family on the go.  It will also be VERY handy when we are travelling this summer and Angelina is going to diabetes camp.

Displaying photo.JPGThis hack is super easy.  We get a big box of pump supplies approximately every 3 months.  Shortly after that box arrives I clear some space on the table and pull out the supplies.  I put one of each item (site, reservoir, skin tac, hollister remover, 2 tegaderms or IV3000) into a small pile.  I try to make as many piles at a time as I can easily fit on the table without them mixing together.  Then I just take a box of dollar store sandwich zipper baggies and put each pile in one then repeat the process until most of the supplies are bagged up like this.  Then I just put all the individual site change bags back into the box the supplies came in and put it in our diabetes supply closet.  I keep a small basket of these in our diabetes cart in the living room where we do site changes and refill that basket as needed (it holds about 10 site changes, or roughly enough for 1 month).  This works wonderfully also for those times that I get a call from Angelina’s school that something is going on with her site because I can just grab a baggie and go, knowing that I have everything I may need for the site change (except insulin) and won’t lose the wipes or tape in my purse or d-bag.    After we do a site change I put the baggies in their own little box in our d-cart and when the next shipment comes I reuse the baggies to cut down on waste.

A note about making these kits: I do not use ALL of the supplies to make baggies.  I generally try to keep some supplies lose for those times when maybe you need to replace the tape but the site is still fine, or maybe you get a low reservoir on day 2 and don’t need a new site.

Thanks to my friend Lisa for this idea.

DLH #2 – Opsite Flexifix tape

IMG_4847This stuff is awesome.  It does tend to leave a sticky residue like IV3000 (both are made by the same company – Smith & Nephew) but it is so versatile that I don’t really care.  We use this primarily with the Dexcom sensors since you are not supposed to put any tape over the actual transmitter.  It comes in a 2 inch or 4 inch size and comes on an 11 yard roll.  It seems to last forever too.  The taller roll in the picture we have been using for almost 4 months, compared to the smaller roll that I just got last week.  As you can see, even after 4 months of using it with the Dexcom there is still PLENTY of tape left.  The larger size runs around $25-30 on Amazon and the smaller size is about $18-20.  I originally bought the larger size thinking I was getting twice as much tape for only a few dollars more, but after doing this for a while I have discovered that it’s really nice to have both.  The paper backing and the top clear film that you peel off are both cut in such a way that if you cut the 4″ piece in half it can be difficult to remove the backing before applying it to the skin.  If you’re looking to save a few bucks and don’t mind the frustration then it can be done.  Either way, this tape lasts forever and is well worth the money.

I also have used this tape for another less diabetes related use (although probably equally as important!) and that is for placing over ID labels on Angelina’s devices.  There are waterproof, smudgeproof, yada, yada labels that you can buy (or buy a label maker) but they can get pricy, especially when you think of all the diabetes gadgets you may have.  So, I went the kludge way and decided to print my own labels on white address labels.  I paid $1 for a pack of 240 address labels, printed, placed on her various devices and cut a piece of flexifix to fit over the top of the paper label to help protect it from moisture, smudging, etc.

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DLH #3 – The T1D Card

I haven’t actually used these yet, but I have been working on them.  I’m sure most of us have heard tons of (sometimes annoying) questions or statements about diabetes that may not always be true.  And sometimes you just don’t want to patiently educate people, or it’s hard to do it without bitterness creeping in.  So, I decided to make up T1 Cards to hand to someone when Angelina or I don’t have the time or inclination to inform someone that no, T1 isn’t caused by eating sugar.  And that nothing “happened” to her arm… It’s a CGM (and then having to explain what a CGM actually is.)  I usually don’t mind explaining or educating others but Angelina is fast approaching that stage in life where she doesn’t want Mom talking to other people about her diabetes.  It’s not so much that she doesn’t want them to know… she just doesn’t want to talk about it, or overhear ME talking about it.  The T1 card is about the size of a business card and can easily be carried in a wallet, purse, pocket, etc.  The idea came from participating in a conversation with someone on an ADHD/Autism group I belong to.  Someone had mentioned that she had a fellow mom of a child with autism who was prone to very public sensory meltdowns and so she carried cards with her explaining that her child had autism and no, he really couldn’t control himself at all times.

The cards can potentially be a two-fold benefit for us.  1. because by handing someone a card, I’m not just blabbering on about Angelina’s diabetes.  2. I tend to go into WAY more detail about Angelina’s diabetes than is necessary with people who ask a casual “What happened to her arm?” when they notice her dexcom sensor.  I can usually see their eyes glazing over, but seem powerless to stop talking about it.  It’s important to me, I really want people to understand.

With all that said, and with my husband rolling his eyes and telling me I am a dork (Angelina loves the cards by the way and said she wants to give one to EVERYONE) here are the T1 cards:

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#DBlog Week 4 – Diabetes Mantras or What I Tell Myself When Things Aren’t Going As Expected

Diabetes Blog Week

 

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.) 

From Bitter-Sweet Diabetes

 

There are several common phrases that you will hear in the diabetes community, specifically in relation to blood glucose readings and not placing a values judgment on them.  Some of my favorites are “Check and correct.”  and “It’s just data” – both in reference to numbers that fall outside of the sometimes very narrow and hard to hit target of “in range” especially when you are attempting to control the glucose levels of a child who sometimes (usually) has their own agenda when it comes to food, activity, stress, etc.

It can be stressful to see numbers that are consistently out of range since the target range is not there to mock us, but to minimize the change of developing either immediate health issues, as with low blood sugars, or complications that can come later in life from high blood sugar levels that can effect anything from the eyes, kidneys, heart, or the nerves to name a few.  While today’s current technology and faster acting insulins can greatly help reduce those risks, they do still exist especially if you are not diligent about managing said numbers.

And of course, with raising a child with diabetes it is sometimes a tight rope walk of watching what you say and how you react to seeing numbers that fall outside of that small target.  Children learn from watching us and don’t have the brain development and cognitive ability to determine whether mom panicking over a 350 blood sugar and asking if they ate anything is just concern or an accusation.  Especially when such high (or low) blood sugars can cause mental fuzziness or other feelings of not feeling well to start with.  It’s easy to see how a child could take a question like “Did you eat something and not tell me or bolus?” and interpret it as “You did something wrong.” and take it personally.  I know I am guilty of often asking Angelina “Did you eat something and not bolus?” when I see high blood sugar readings.  It almost always makes her defensive.  But, the reason I ask is not to accuse her of something, but to start the process of determining the next step to take and worrying about how worried I should be about a 350 reading.

If it was in fact that she ate something and forgot to bolus then it’s probably fine to “check and correct” and put it out of my mind until the next time she’s due to check her blood sugar.  But, if she didn’t eat anything, then a 350 blood sugar may be a signal of something else going on.  It could be anything from an infusion site issue, bad insulin, impending illness, stress, growth hormone, etc.  I would take further steps to investigate if no food was consumed such as checking the infusion site for any signs of an issue or perhaps changing out the insulin.  I would also probably check for ketones to make sure that there is insulin in her system.  If it was simply she ate some chips and didn’t give insulin then it’s not as urgent to check for ketones.  It’s more a matter of determining what is wrong, rather than something that was done wrong by the child.  But, those nuances are often hard for children to understand, even when you explain.

Another saying “It’s just data” ties into this as well.  Those numbers are just data that indicate what the next step should be, if any need to be taken.  It can be difficult to suppress the emotion that an unexpected reading may cause, but reminding myself (and Angelina) that it’s just data helps.  But really, that’s all a blood glucose reading is: data.  An in range number tells me when and how much to bolus if it’s meal or snack time.  Below range numbers tell me we need to either watch and wait, or take action.  Above range numbers tell me the same, depending on when they occur.  Fortunately Angelina’s dexcom does help us avoid some surprises and attempt to take action before it gets to a critical level, but not always.  We recently have had a few times where the Dexcom was reporting in range numbers, but Angelina was acting strangely so a fingerstick was taken only to discover that her actual number was dangerously low despite the rosy picture painted by her CGM.  These instances are few and far between, but they do happen.

It can be hard to suppress that urge to wonder out loud “what happened?” when the result is unexpected.  I certainly didn’t expect to see a 34 mg/dL reading on her meter a few weeks ago when she decided to take a nap in the middle of a Sunday afternoon.  But then a diabetes-trained brain kicks in and says “Okay, what’s the next step?”  in this case it was trying to wake her to drink some juice.  It just goes to show that diabetes is unpredictable and sometimes the nuance can be more telling than the data.  It’s important to look at all the data, not just the numbers.  Odd or out of character behavior or emotions can be signs that something is going on, even if a number on the meter says things are peachy.  It’s important to be tuned in to your or your child’s “signs”.  It’s also important to remember that sometimes we/they are just people who experience emotions and odd behaviors that have nothing to do with diabetes, just like any one else.

Scary Things – Part 2

Monday:

Monday morning came way too early after not getting to bed until 1:30 am.  It was also the first day back at school for Angelina after two weeks of Spring Break.  I happened to actually wake up at 6:30 when David was getting ready to leave for work.  I knew there was no way I would wake up again to my alarm at 7 or 7:30 (I have two set to make sure I wake up on normal mornings) if I went back to sleep so I got up.  Blood sugar was perfectly in range.  Got her breakfast, bolus, off to school.

Went about my day, heard nothing from the school. Great!  Around 3:45 I see the bus pulled up outside our house (normally the bus turns at our corner and stops diagonal from the house on the opposite side of the intersection.)  I see Angelina coming off the bus at our gate so I went outside to investigate.  D-Mom senses were tingling again because this is just ODD.  Angelina walks up to the door and I said “Why were you dropped off at our door?”  Her response, “Substitute bus driver.”  Okay, big sigh of relief from me, nothing is wrong.  And then, “It’s a good thing because my blood sugar is low!”  WHAT?!?!  As part of her diabetes accommodations at school she has to check in with the nurse near the end of the day to make sure her BG is in a good place to ride the bus because she is the last stop and has an hour-long bus ride.  So, I said, “Okay, let’s get you some juice.”  We go in the house and she said that she alerted low on the bus. “Mom, like, it just said “LOW” but there was no number.”  If any of you use a Dexcom you know what this mean, if not – when the Dexcom just says “LOW” and doesn’t show a number it means that it’s outside of it’s readable range of 40-400, so a “LOW” reading means she was below 40, according to the Dexcom.

Screenshot 2014-04-22 13.03.53

Fortunately she carries a spare meter in her backpack, even though technically she isn’t supposed to.  She said her meter said 62, which is still low, but certainly not as scary as a below 40 reading.  The only problem is that she didn’t have anything in her backpack to treat the low.  I thought she had a tube of glucose tabs, but she didn’t (She does now, as of yesterday!).  She said she had a package of beef jerky in her backpack though and ate that to at least stop her blood sugar from dropping more.  According to the Dexcom she was low from 3pm until she got home 45 minutes later.  The bus leaves the school at 2:55pm and they had a substitute bus driver who knows NOTHING about her diabetes, obviously.  So she ate her beef jerky and waited to get home, fortunately the beef jerky did seem to keep her BG from plummeting further and juice worked quickly just as it should, almost too well.

We had meatloaf and brussels sprouts for dinner which was only about 25 carbs.  I was falling asleep by 8pm so passed the Dexcom off to my husband and went to bed.  I woke up around 10pm when he came to bed and put the Dexcom receiver on my bedside table.  Bg was stable and hanging around 150, which was fine for going to bed.  We all went to sleep.

Then I was woken up around 2am with Dexcom screaming that she was high, over 250.  Bg steadily went up starting just after she went to bed.  So, even though meatloaf was low carb and I used extra lean beef we still saw a fat spike, apparently.  Checked her BG, gave correction and went back to sleep.  Got woken up again 2 hours later with BG still over 250.  I have a 2 hour snooze set for her high alarm since that is the active insulin time for her and correction isn’t administered more often than every 2 hours anyway.  So I got up at 4am, confirmed BG with a fingerstick and gave more correction.  Got woken up again at 6:30 when David was getting ready for work to see that BG stayed around 250 the entire night despite a few units of correction over that span of time.  It did not alert high again though because it was reading about 245 and her high alert is set at 250.  Got up and did fingerstick again, calibrated CGM, did MORE correction and started my day by emailing her teacher and nurse to make sure that the accommodations for state testing were going to be followed since they are starting testing today.

I got Angelina up around 7:30, pre-bolused for breakfast, especially since she was already high, and sent her off to school.  Whew!

She Can’t Eat That…She Has Diabetes!

Ever heard this said about your child?  I have.  Usually it’s coming from someone who is stuffing themself with the same item my daughter may be enjoying at the time.  Things like chips, ice cream, cake, pie, candy.  But the fact of the matter is, she CAN eat it.  The difference is that whatever she eats, she has to get insulin from an outside source to use the food for fuel, unlike someone without diabetes whose body does all that fancy calculating and insulin administration all on it’s own.

Of course, for someone with a functioning pancreas the process is much more precise and streamlined.  They probably have no clue what’s going on inside their own body.  I read somewhere recently that a normally functioning pancreas starts releasing insulin as soon as you see or smell food in anticipation of you eating food.  And there’s a built in safety mechanism if insulin is released, but then you don’t eat so your blood sugar starts going low – your pancreas releases glucagon to signal your liver to release some extra glucose into your blood stream to counteract the insulin.

For someone with type 1 diabetes their insulin comes from a syringe, insulin pen, or insulin pump.  As a parent, I will never be as efficient or as exact at dosing Angelina’s insulin as her own pancreas was.  I can give her insulin, but it won’t always be at the right time, or the right dose, and even rarely both.  But I can give it to her and I can try my hardest to mimic a functioning pancreas.  So, if she wants ice cream, she can have it, just like anyone else.  It just means that it comes with a dose of insulin from outside her body.  You telling me that my child can’t eat something while I am trying to figure out how much insulin to give her just makes my job harder.  Maybe I should start telling your pancreas YOU can’t eat that.

For more information please see points 5, 7 and 12 on the post linked below.

 

EDIT:  So, I was reading over at Death of a Pancreas and noticed that the author is the person who made this gem:     Since a very special line from this video was repeated multiple times in our home after watching this video and was part of the inspiration for this post I thought it only proper to share it here.  The line?  “There are only two things my daughter cannot eat.  Poison.  And cookies…   Made with poison.”  Fitting.