THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, July 29, 2011

I Test My Daughter's Blood Sugar Overnight. Do You Have A Problem With That?

The other night, I read a blog post written by a diabetes nurse educator from Texas.  Not only does she herself have type 1 diabetes, but so does her husband.  And not only does he have T1, but he's also an endocrinologist.  Talk about an opportunity to offer insight and compassion from a unique perspective!

Unfortunately, that wasn't the case.

She was writing from diabetes camp, where hundreds of children with type 1 diabetes (and their parents) are depending on her, and probably (hopefully) have no idea they were the targets of such an intensely derogatory rant.

In her post, she called kids with T1 "pusses" - which she later changed to "wusses" - and blasted today's parents for "coddling" tomorrow's generation of adults with type 1 diabetes. She was downright furious that some kids use EMLA/ice numbing prior to site insertions, and blasted parents who check their child's blood sugar overnight.  Her tone was harsh, degrading, and hurtful to say the least.  It was obvious that she didn't care how the post would affect her readers, even though she acknowledged in a previous post that many of her followers are mothers who are raising a child with diabetes.

(FYI -- I would link to the post, except the author took it down, and I don't want to drive traffic to her blog after such a humiliating rant directed at parents like me.)

Now, listen.  I've been a R.N. since 1995.  Nurses aren't always kind to each other.  They can be egotistical and tote a "been-there-done-that" attitude.  Often they're known to be prideful, judgmental, and downright argumentative with each other.  Sometimes they fall into the trap that there's ONLY one way to do something -- and that's THEIR WAY.  Period.  The nursing field tends to full of women...and, let's face it, WOMEN = DRAMA.  Come on, you know it.  Women can be catty...and when you combine large groups of opinionated, egotistical, catty women, it only makes matters worse.  Articles addressing this issue and other commentary can be found all over the net.

It's not just MY perception.  It's a real problem.

Anyway, as I was reading her post, it felt as though I could have been standing at a nurses station, listening to her vent about what a horrible patient load she had, and how miserable all of her whiny patients were making her.

Except we weren't at a nurses station.

And I'm not a colleague.

And the horrible whiny team assignment she was complaining about could have included my child.

Trust me, reading her rant really made me think twice about sending Sugar to camp next summer.  I hope this is the exception, and not the rule.  I'd hate to send my daughter off to be fed to the lions (ehum, *big* hint there about which camp she was representing) because someone decides they don't like the way I'm parenting her.

But I digress.

It made me sad, really.  Sad that she was representing my profession with such a lack of compassion.  Sad that there were parents trusting her with their beloved children.  Sad that there were children who were being called names and humiliated because she doesn't like the way they're managing their diabetes.

Can I just ask...what's the big deal with EMLA?  I mean, does it REALLY matter if a child/family chooses to use it?  In the big picture, who really cares?  If a kid grows up and wants to use it as an adult, is it really causing a problem for the rest of society?  Big whoop!

Sure, there will be times that you can't wait an hour before inserting the site.  I get that.  And I think the kids using EMLA get that.  But SO WHAT if there are kids who prefer to use EMLA for routine site insertions.  As long as they're testing, rotating, counting carbs, and learning to take care of themselves, isn't THAT what matters?  Why take it so personally?

For the record, my daughter used EMLA when she first began pumping, at age 3.  Somehow over the past 4.5 years, it's been phased out of our site change routine.  She does ask to use it for Dexcom insertions, and we're happy to oblige.  If you have a problem with that, come to me...but don't drag my kid's reputation through the fire on your blog because you're upset with how I parent my child with diabetes, okay?

And overnight testing...I test my daughter every night.  She wears an insulin pump.  The risk of DKA is too high for my comfort level.  (You thought I was going to say lows, didn't you?  Yeah, lows scare me, but I'll get to them in a minute.)  At any rate, I would never go 8-12 hours without testing her blood sugar during the day, so why should I do it overnight?  I test to make sure her insulin infusion hasn't been interrupted.  I test to make sure there aren't any alarms going off that she/we could be sleeping through.  I test to make sure she doesn't need a correction so she can start her day without being in the residual haze of a high blood sugar.


And I test, because I have a healthy fear of low blood sugars.  In fact, I've caught them several times.  Overnight low blood sugars happen.  Michael, Lee Ann, Sarah, and Kerri.  They're all healthy adults, active in the diabetes online community, and they've all had some overnight low blood sugar doozies.  It's not just ME and MY child.  They happen, and, to be frank, they can kill her.

So, yeah, I test her overnight.

Will I test her every night forever?  I have no idea.  I'm doing the best I can to parent her in the world we live in right now, today.  I don't know what tomorrow will look like.  Will she move out, and have her mother coming to poke her finger at 2 am in her apartment every night? Probably not.  Somehow between today and tomorrow, she'll take the reigns.  I'm confident in that.  It'll be up to her to decide how she wants to manage her numbers at night.  Maybe she'll grow up, do her own research, and decide that she wants to manage herself completely different than the way I'm doing things.  Maybe technology will offer so much more.  Maybe a lot of things.

Who knows?

I think it's probably best to assume that people are really doing the best they can.  You DON'T know all the variables to everyone else's life.  Assuming they're working hard to do the best they can for their child instead of publicly ripping them to shreds to boost your ego might work out better for everyone in the long run.

Just a little advice from one nurse to another, that is.

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27 comments:

  1. great post. I have diabetes t1 and coeliac too. I am 11.
    That nurse must be really annoying. They remind me of the people at my hospital. I want to be a doctor when I grow up.
    I am fighting for the pump with my Mammy and Daddy. I don't like injections but I do them all my self anyway, even in school, 'cause I'm amazing! I'm very good at carb counting and like to read your blog. My mamy is married to the man of her dreams too.

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  2. I'm soo glad you wrote it!! Honestly I started and my post looked like a sailor wrote so I decided not too. You did us proud mama!

    So honored to have you on my team! Great post!

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  3. Bravo. When you know better,you do better. Why not support our children in the ways each of them need it? Each child is different. I used to ice Joe's bum cheeks for site changes...now he doesn't need it...It was phased out like two years ago. And us too on the EMLA for Dexcom.

    And her thoughts on over-night checking are down right irresponsible in my opinion. DKA, lows, and ultimately that is 1/2 your A1C being formulated.

    Oy.

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  4. We ALL just need to do the best we can for our children given the knowledge we have at the time. And not judge one another for the choices that are made.

    We don't use EMLA for pump changes but maybe we would consider it for a CGM. My daughter thought the iPro insertion was the worst thing EVER and now won't consider a CGM (for now).

    We check her BG at 10-11pm and go from there depending on what it is. This is the choice we make based on our own comfort level and discussions with our medical team.

    And we were able to visit the camp she will attend next year while it was in session this summer. I know the head nurse and director. They do a BG check at midnight and then as needed. The cabin she will be in next year has 10 staff members and 10 8-year-old girls! My biggest fear about diabetes camp isn't her diabetes care, but the bunk beds!!

    But ask me again next year as I drop her off for a week for the first time!!

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  5. I didn't get a chance to read the post before she removed it. I didn't know she was actually AT a camp complaining about the kids and their parents. She should be ashamed of herself.

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  6. Awesome post Wendy! I agree with Lora, she should be ashamed at herself!

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  7. How awful that she dare call the kids names. Kids shouldn't be burdened with the seriousness of D, anything that helps them deal with diabetes is totally worth doing. She should not be working in the nursing profession!

    That said, I have to say that you are a wonderful mother, checking her sugar at night is important! I had a really bad low at night and woke in the ER once (about 15yrs ago). Scared me silly. I hope people give a piece of their mind to this woman...the powers of the DOC are a beautiful thing after all!

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  8. Awesome post Wendy! I agree wholeheartedly with everything you say, who the hell cares if a kid needs EMLA, or an ice pack or a happy dance, or to hold someones hand. We need to start where kids are and every kid is different. What happens now in their life might not be the case a week, a month, a year from now. Everyone grows and changes and the goal is independence in diabetic care, right? As I wrote in my reply I had an hard time understanding her view of "well, I suffered through it and buckled up, your kiddos need to too!" yeah, that tone scares me, from a nurse at a diabetes camp. She called these kids coddled and puss. That's just awful.

    As for the comment of parents who coddle cause they check their kids overnight BGs, I believe she called it RUBBISH. Well, she may be Type 1, but her kids aren't, yet. I'd like to ask her, after they were diagnosed, if she was willing to let them sleep 8-10 hours without checking them. I uh think not. I think she is a string willed blowhard who thinks she knows best for all of us out here, parenting Type 1 kiddos.

    Great response to her hon!

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  9. I hope the camp she is employed by gets wind of this and it costs her her job. Wasn't there a similar case a while back where a teacher was fired for blogging bad things about students? (Or maybe I was just wishing that teacher was fired... don't remember exactly!)

    Every d-parent is doing the very best job they can, making daily choices and trying to do what they feel is best for their child. Nobody has the right to judge that, not even someone who is allegedly an expert in the field.

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  10. Well put and no swearing either so, well done you. I wish I had seen her post. She would have broken records for most comments I am sure. I am proud of you for your response. And night time testing feels necessary to me a lot of the time. Mostly I am able to do a last test between eleven and twelve but more often than not I get up and test at 2am too! It's great doing that! Especially when you consider the horrific possible alternative. Love to you and yours from the UK.

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  11. Oh my. I think adults forget that diabetes is FAR different as children. Adults tend to stay more "stable" at night, we don't go through growth spurts! I betcha if this couple had a CHILD with diabetes their perspective would change....

    Camp? They didn't check Maddison from bedtime at 9 until 7 the next morning....I was completely disgusted. This was my one biggest fear, and they let me down. I still don't understand why.....with all that activity? -sigh-

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  12. Ummm wow, I didn't see the post and I have no idea which camp this is, but as veteran D camp staff I can assure not all camps and camp staff are like that. The counselors and counselors in training have meters available at all times and are instructed to test kids whenever the camper asks or if they think there is an problem. During the night if the camper had an out of range bedtime BG they are automatically tested at midnight and 2. I made a habit out of testing all my campers (each cabin has 11 campers) at midnight, just for my own peace of mind, I would want to wake up to a seizing child or find one of my campers in DKA in the morning.

    And for the record there is nothing "wussy" with testing through the night, even us "grown up" type 1's (who are healthy and realize the importance of taking care of ourselves) do it. I think maybe this diabetes educator didn't have parents who were educated on how to properly care for their T1 child. Or maybe she wasn't diagnosed as a child? Either way she is the exception not the norm.

    And please don't think twice about sending Sugar camp, it is such an important experience for a kid with T1 (or any kid for that matter). If your worried about the camps in AZ, send her to next door to the camp here in So. Cal, I can guarantee its safe (and fabulous) and I may get to be her counselor :)

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  13. I remember when I had GD while pregnant with my DD. My sister, a nurse, continually argued with me that I WASN'T GD and even called a nutritionist friend to confirm. Her friend agreed with my doctor and yet she still insisted it was ridiculous. I saw no harm in monitoring my diet and sugar so ignored her. But what you said reminded me of her rants.

    I figure I know my daughter and everyone else can just bite the big one if they don't like how I'm raising her.

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  14. Great post, Wendy! I'm still steaming about her writing those things --- I have a post about 1/2 written about it too. I totally agree with Penny -- and left a comment on Nurse Ratchet's post saying the same. I bet she would change her tune so damn fast if one of her 2 boys were dx with T1.

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  15. It makes my heart heavy that someone in trusted with the care of these kiddos would act like that, much less 'put it out there' for others to read.
    I think your post handled her ridiculousness very well.
    I hate to think what might happen to our kiddos if we didn't check them as we feel we need to...overnight or otherwise!
    Our kiddos go through enough 'pain' with D if a little cream or ice takes some of that away, then why in the world is that a problem?
    Thanks for taking her on, Wendy!

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  16. Wow. You tell 'em, Wendy!!

    And man, her blog just has a...um...nasty tone to it in general. I certainly wouldn't want her caring for me OR my children. Ugh.

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  17. Each child is different. Although personally I think it would be rare, perhaps there are a few children who don't need to be checked overnight. Maybe some children only need to be checked during sports or a growth spurt. I have been told by many this occurs; we were never that lucky. I would never question or ridicule a mother for refusing to test overnight. A Mom knows her own child's patterns... period. But why can't others understand that what works for their child may not work for yours, even when both children have Type 1. I would never leave my child in a diabetes camp that does not do overnight testing at midnight and 2 or 3am. With all the extra activity, it would be extremely dangerous. I think you should publish the name of the camp. Parents have a right to know so they don't leave their children there.

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  18. Why is this woman allowed to keep her job? I have had issues with nurses in hospitals. one night I knew my BS was low so the nurse brought me a Glucerna then walked out.I was still dropping so my Mom called her back and the nurse griped at us because it hadn't had time to kick in as soon as she finished her rant I passed out from the lown.We know our own bodies and our kids and we all have diabetes but we are all different.

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  19. I'd had liked to read her post. I'm of the opinion that how D-Management happens for kids and teens is a decision that should be made within a house, not some blanket rule across the board. I know the fears. But... times have changed. When I was growing up after being diagnosed at 5, my parents rarely tested my BG overnight unless there was some reason to (like was already Low at bed). It was different then, insulin was different - we didn't have fast-acting as we do now, and pumping was mainstream. DKA took so incredibly longer to come about. The Lows haven't changed, and when young I had my share of the scary ones. But many parents did. I wouldn't say kids now are pampered or weak, it's just the evolution of how our overall management scene has changed and necessitated that - with pumps, tighter management, and CGMs. Anyhow, don't let one RN take away the magic that is D-Camp... and the awesomeness of so many others out there. :)) You rule, Wendy, and do great.

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  20. Oh, and thanks for the shout-out! Though, I'm sorry it was about one of those fear-inducing Low experiences on my end... :(

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  21. Wonderful post! I was just saying this to J- if I didn't check overnight we would go 8 plus hours never looking at her bg. I wouldn't consider this during the day, when I'm with her- why would I at night? Personally, I can't do that.

    I agree with Reyna- should we all just go back to boiling needles and sharpening them ourselves? It's probably cheaper. More "green". Why not??? No- because when we know better we do better. Or we should.

    If my child went to that camp, I'd pull her out faster than you could blink. And I think the staff there needs to take a serious look at who they employ. I want my child to learn independence- but not be called names in the process. This was one of the most arrogant, disrespectful posts I've ever read. It makes me think twice about camp. And that is very sad.

    I also must point out, saying one thing- then taking it down to change it and claim you never used such words shows a serious lack of integrity. I am glad you didn't share the name of this woman or her blog.

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  22. Oh Wendy I am so glad you posted this! I read that blog post myself and was appalled at the majority of what she said.

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  23. Can't believe this! First of all, it is extremely unprofessional that she posted all of that while AT camp caring for t1 children. Her words have now done a certain amount of damage and probably are making a lot of parents reconsider sending their kids to camp, which is sad. I think she would be singing a different tune if her kids had t1. Also, for the record, I know adults are more stable through the night (compared to kids), but I sometimes set alarms to check my blood sugar through the night. D is tough and I don't think we need to waste time criticizing each other and our methods. We're a team!

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  24. I have been so busy i didn't know this was going on. I am SO sorry! I hate when PWD act like this. You know what? I get up at 3am every night to check my BG. How dare someone question the behaviors of a caring mother!

    Please know that there are A LOT OF PWDs that think you D mamas are heroes! Especially me. It saddens me that this type of thing is happening online. I am 30 years old, and I can tell you, shots, finger pokes, and site changes hurt! I wonder what makes this woman think that because someone is protecting their child from extra pain they are a "wuss". So if this lady has a headache she doesn't take pain medicine? It's pretty much the same thing.

    Some people really need to behave online. I understand this feeling after I was called out on some woman's blog, for saying that not all T1 Ds are manipulative. Only to find out that she is part of a group that goes online to complain about their D spouses.

    You D Mamas are amazing! I love you, and are so blessed to know each of you!

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  25. Just getting wind of this....where in the heck was I?

    Fantastic post. You are a rockin' D-Mom and I operate just like you. Our kiddos are way too precious!

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  26. i test my kid every three hours overnight. we use emla cream for her cgm insertion.

    she is away at d-camp right now. the doctor that stays in her cabin checks her and the other campers overnight.

    it's unbelievable that an RN would post such things (from camp no less!) that speak of her charges and their parents in such a derogatory fashion. thank you for your response. i can only hope this woman reconsiders her behavior.

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  27. WOW!!! Just read this blog today and wish I would've known about this creature before i got into it w/her! Soooo scary that she is in charge of T1's AND even more scary that she is giving advice to parents! Wonder how many parents have stopped checking overnight b/c of her? Wonder how much bad she has caused b/c of her bad advice! But this has really opened my eyes to how you can't be so trusting of anyone just b/c they have letters behind their name! Now, when my dtr. is ready to go to camp, i'll be much more choosy about which one!!! Thanks Wendy! Linda in PA

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Life For A Child Button 2
While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.