D-Sib Day

Well, Alexis and Sherry have proclaimed today to be Siblings of Diabetes Day.  I figured I’d write about E, but have been so busy it hasn’t gotten done.  I’ve hardly even been on a computer.  Good thing is, it hasn’t been because of diabetes.  I’ve been working, playing with the kids, eating Thanksgiving dinner, going out, you know… living?

Anyways, it’s today and it’s 10:30am right now.  My little E is still snoozing.  In  MY bed.  I cleaned up his mess that he’s scattered all over my living room this morning while he was nice and cozy.  I guess I’ll call that his special treatment today?  Poor kid.  Honestly, we don’t celebrate much around here though.  There’s too much always going on to add in any extra.  We celebrate Christmas, but everything else is pretty minimal.

My sweetie really is, just like most siblings thrown into this life, an amazing supporter of his brother.  He makes it near impossible for C to feel alone.  E loves to test.  Under 100?  You’d better believe he’s going to call it low and demand some candy…  E always checks to be sure foods are gluten-free.  There are a few things in our house that aren’t.  If E has those, he’s always sure to eat on a placemat on the far end of the bar to make sure crumbs are kept under control.  He likes to know how many carbs he’s eating.  Sometimes I realize he also suffers from ‘diabetes-brain’ when he notices things that remind him of a test strip, or a blue circle, or a glucose tab, or mentions what number he thinks a lancet would have to be on if his little cousin had to test

On the trampoline, when suddenly C lays down and can’t get off, E’s extra loud voice is heard screaming for me as he runs inside to get a juice box.  E has a pack on his bike that he keeps a roll of glucose tabs in just in case.

After our pump trainer left last January, E was the first to get excited enough to stick an infusion set on (not inject though) and wear that pump for the next hour or so.  E tells everyone he meets about diabetes and celiac disease.  Like everyone else’s ‘other’ children, he knows all the science, real words and possibly every fact that I know about them both and always surprises people with his knowledge.  It warms and breaks my heart at the same time.  Sometimes, when C wants to go somewhere without me, I feel fine about it as long as E is there.  I know that in an emergency E would know exactly what to do or how to explain the situation to someone who could help.

Because we’re a part of a local group that tries to get together monthly and most of the kids are much younger than C, E actually has a number of good friends living with diabetes as well.  Some have it themselves, some have a sibling with it and some have a parent with it.  It’s all very normal to him.

No, we’re not going to do much celebrating, but E is always told how proud I am of him being so supportive.  C is often reminded how lucky he is to have E on his side and even though it’s not that often that he shows it, I know he’s thankful for him.

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Alexis’ MeMe

Alexis Wants To Know!

I bore my kids.

For informative purposes: C is 11 years old.  Diagnosed with diabetes July 2009, just after turning 10.

When did you guys start pumping?
He started pumping in January 2010, almost 6 months after diagnosis with the Animas One Touch Ping.

What do you use to change sites? Whats your “process”?
We use IV Prep but that’s about it.  If it’s a bleeder when we peel it back off, I’ll use some Neosporin.

How often do you check ketones?
I check for ketones if he’s reallllly high and feels sick.  Or reallllly high and a correction doesn’t bring it down (after and hour and a half or so).  Or when he’s just ‘regular’ sick.  Sometimes if I realize that he’s been high for a while (last few BG checks) we’ll test.

When do you do an unscheduled site change?
We pretty much don’t.  They used to get pulled off of his tummy a lot, but now he won’t allow them there.  On his upper booty, they don’t get pulled off.  A few times I’ve changed early due to persistent highs or persistent highs with ketones.  I always wait out at least one correction before doing so.  As long as I have patience, it has usually worked out.

Whats your childs target?
daytime is 90-120.  Nighttime is 140-170.  Those are the settings in the pump at least.  I let him go to bed as long as he’s over 100, and has no insulin on board.  I’ll recheck soon enough anyways.

What was your childs last A1C?
6.9

What kind of strips do you use?
OneTouch

Which do you prefer?
We only use OneTouch.

What kind of Peanut Butter do you use?
Jif Creamy. Or Jif Natural Creamy.  C hates the Natural though and can always tell the difference.

Do you allow juice when not low?
Yep.  Sometimes he drinks a juice box with his lunch.  He drinks ‘em when he’s headed out to the trampoline, riding bikes, whatever he does.  He definitely ends up drinking juice.  Recently, he was feeling sick of diet coke and even had a REAL root beer at a birthday party…just bolused for it.

Do you still check your child at night?
As long as I’m not so exhausted that I sleep straight through my alarms, I do.  I usually check 1-2 times after he goes to bed.  Typically this is around 11pm and 3 am.  We wake up (on weekdays) between 6:30 and 7:00am (again sleeping through my alarm that goes off at 6:00) and check then.

What is your rule on sweets?
Not many rules.  Check the ingredients for gluten, check on a real carb count (not guessing) and TRY to eat something else with it… protein or something to slow it down.

Regular pasta or whole wheat?
Neither.  Brown Rice pasta

What about veggies and fruits?
My kids live on fruit.  C eats salad, carrots, cucumbers…  No cooked veggies though, only raw.

White bread or whole wheat?
Both have been banned from our house.  We only eat Udi’s Gluten Free MultiGrain

Do you use glucose tabs?
Yep.  We use whatever’s got sugar, but the rolls of glucose tabs hold 3 quick fixes and fit in his pocket easily.  He also doesn’t have to worry about people wanting his candy for a snack.  Oh, and HE’s less likely to eat it as a snack…

What do you use to treat lows?
Whatever we’ve got around.  Glucose tabs, juice, smarties, Swedish fish, sour patch kids, lemonheads, gummy jolly ranchers, milk, yadda yadda yadda.

What does your child use to hold their pump/cgm?
his pocket.  When he doesn’t have a pocket, he just uses the clip that came with the pump (well, that one broke…I think we’re on number 3 or 4 now).  No CGM.  Insurance doesn’t cover it and he won’t use it if it means carrying something else.  We’ll wait for Animas to hook up with Dexcom in one unit.  THEN we’ll push for it.

yummy carbs

Last night’s conversation with C went something like this…

“Hey C, did you go low at school yesterday?”

“No, I don’t think so.”

“Oh, cuz when I put your jeans in the laundry I found the empty baggie in your pocket that the Smarties were in.”

“Oh, I bolused for those.”

“Hmmm. That’s not what they’re there for though.  You need to save those in case you go low.”

“Then you should probably know that I did it today, too.”

rambling like crazy

This has been a really hard couple of weeks.  C’s blood sugar is nuts.  Couldn’t get a hold of the Dr., was just feeling completely overwhelmed.  I’m exhausted.  Physically, mentally, ever other way you could be exhausted too.
Last night I heard from the doctor.  She thinks that C’s feeling a lot of stress when I’m not there and is driving his blood sugar up from it.  At school in the mornings, he tests.  If he sees a number over 200 he starts retesting.  Sometimes every 5 minutes, 15 minutes, 30 minutes.  It really depends on how high the number is and how nervous it’s making him.  Then, he gets sent home, his limit at school is 400.  He never has ketones and drops back down by lunch or with a correction from lunch.  This doesn’t happen at home on the weekends.  We started some new rules.  He’s allowed to test once between breakfast and lunch.  If it’s a number that he’s worried about, he can go to the health office and test for ketones.  If it’s negative, he can go back to class and stop worrying.  If its trace, he can drink some water in class and we’ll retest at lunch.  If it’s any higher than that, he should call me and we’ll make a decision at that point.  I assured him that he’s ok.  He’s safe.  He’ll be fine.  I told him that even if it’s 500 but no ketones, he’s safe.  Apparently that’s what he needed to hear.  He tested at 9:00 this morning and it was 256.  This is high enough to usually start the testing frenzy.  But it didn’t.  He didn’t even go test for ketones.  Just waited to meet me at lunch at which point it was 101.  Love that!
At daycare, he took carbs before playing football (although he forgot to test first to make sure he wasn’t too high already), came home, tested at dinner and was 130.  Love that, too.  Looks like the anti-stress talk is helping?
Or is it the fact that the Dr. also said she wants me doing his injections for the next few days to see if it changes anything.  He doesn’t quite leave it in as long as I (&the dr./nurse) would like and maybe he’s not getting every last drip of insulin?  We’ll see.  It was a much better day though.
At bedtime, he tested and was 125.  Lovely.  Except since we want him to be at least 130, I gave him 2 glucose tabs and tucked him in.  Went to my room and thought… hmmm, what if it’s dropping though?  I waited 20 minutes and asked him to retest.  He just did while I was typing this and it was 60.  Jeez.  I knew there’d be a catch to all these nice numbers!  Usually this means it’s going to be a long night.  Lots of juice boxes and waiting.  I’m going to go ahead and start praying now that that’s not the case!
Besides all of this, the doctor also reminded me that absorbtion is issue due to the celiac disease and we may always have a rough road to travel on due to this.  She said his blood sugar will be much harder to manage because of it.  She also reminded me of how sensitive he is.  She said that some people are affected by insulin and carbs very smoothly.  Some people, no matter how little an amount of either, their body just absorbs it and becomes affected quite severly.  This would be him.  She said his body is working very crudely.  I give a unit of insulin and he drops low.  I give his 15 carbs and he skyrockets.  There’s just no winning.  Except for when we get the pump (knock on wood).  Those tiny tiny little amounts of insulin we’ll be able to give will be oh so helpful.  The bummer is, she doesn’t think it’ll be approved before his 6 months.  The good news is, they go by symptoms, not diagnosis.  That means we’re only 2-3 weeks away from him being a pumper.  It coincides with my birthday and I can’t think of anything I’d like more this year.