Our DKA Story (The one I’ve never told to the world before. And the one that scares me to share)

January 7, 2014By 29 Comments

 

 

 

162-2-iline“The best kind of writing is the kind you really don’t want to write. The kind that scares you. I mean down to the bone scares you.” That’s what one of my professors used to say.
Well, Professor Darden: this one scares me. Because it’s raw. Because it’s real. Because it’s opening me – and my parenting skills (or past lack thereof) — to ridicule, judgment, and more. Because it puts down in print something that’s been haunting me for nearly a decade.

But with some recent events (including a few parents reaching out to me privately for help, as well as some chatter on-line about DKA and how it happens and what it means) have brought this all back to me.

In fact, about a week ago, this story (one I thought I’d pushed far enough back into the recesses of my mind that it was stored away for good) kept me up all night. Shaking.

And the more I think about it, the more I think despite all that risk, I need to share this. Because really: If sharing this leads just one parent to recognize something in the story and tweak the care of their child with diabetes in a way that helps them avoid this happening to them, it will be worth it. Please note: this is my personal experience, no one else’s. I have no way of knowing how other kids’ DKA’s come about, but I do know how ours did. I am hoping by sharing it, you’ll never have this experience.

So here goes. I’m terrified. But I’m sharing.

 On an October night in 2004, when she was just 13 years old, my daughter with diabetes nearly died from DKA. I remember her coming to me, her best friend egging her on, and holding up her meter and saying, “Mom … I’m in trouble.” I remember calling the endo and then rushing her to the hospital. I remember the ICU, and everyone – even the hospital staff! – saying, “Wow – if this can happen to our model patient; this can happen to anyone.” DKA. As if by some kind of evil magic. As if out of nowhere.

Those were the older days of labs and lab results, and so it took a couple of days for all of us to see the clues that proved what had actually happened. (A seriously elevated a1c that shocked each and every one of us). That lab made it clear: It was not sudden thing, and it was no fluke. And here’s the biggest thing of all; the thing that kept me up nights for a long time and that I pushed way, way back in my mind, but that popped back up recently:

It was completely, absolutely, 100-percent my fault. Mine. Her mother’s. Her DKA could have easily been avoided. By me.

 Don’t stop here and tell me it’s not true. Because it absolutely is. I know it, I understand it, and I have to live with it. Thank anything and everything that has any kind of benevolent power that she survived because the guilt of this as it is, is horrid enough. Had she not, I don’t know how I’d survive.

Here’s how it was my fault. My daughter was indeed the “model patient,” and from the moment of diagnosis, we were pretty much the “model family.” I read all I could on daily care, research, new technology, everything. She, from the start, braved it out and did her own finger pricks and shots (at six – with a grown up supervising of course!). She was one of the first young kids to go on a pump in our state. She was a rock-star diabetes camp kid. We had a huge walk to cure team and volunteered our time for camp as well. By the time she was 11, she was so solidly in the loop I trusted her every move. And that is where the trouble began.

That part of the story is not new. I wrote about it HERE as a guest blogger (and that blog still gets read quite often). And my daughter even spoke about it the first time she testified before Congress (you can see part of what she said HERE, forward to 2:56 if you don’t want to watch the entire thing). I outlined it in my most recent book (and shared what I learned from it).

But what I’ve never shared is how it was my fault we got to that point. Because you know what? All I had to do to keep that DKA from happening was simply see her – I mean really see her – check her blood sugar and administer insulin one time a day. Just once. That’s all it would have taken.

Right about now, parents of little kids are shaking their heads and thinking, “What kind of horrible mother does not see her child do that once a day?” This kind. And here is how it happens:

You trust them. You encourage them to be independent. You flipping praise them for it. And then, one day, they kind of don’t really want to check their blood sugar when you call out for them to do it from the other room (or in our case, my daughter tells me, the first time I called out from across the pool at our beach club). They wait a little while; maybe they fiddle with their meter. And then they yell back a number. “117!” (Or to really convince you: “283! But I under-bolused for the hot dog roll! I’ll correct now!”)

And you, the trusting, proud parent, believe it all. You even go home, click onto your color-coded excel spread sheet of blood glucose values and enter it. The made up number. And the made up comments. All carefully documented and studied for trends. And life keeps chugging along.

That what I did. And my daughter tells me now, that first time she made up a number and I believe it opened her up to a temptation that was, for her, nearly impossible to deny. She made things up more and more, eventually even skipping boluses. All the while I was praising her hard work and independence, and keeping track with my excel sheet. The last thing she wanted to do was let me down. How could she ever be honest about her dishonesty when I was so proud of her “independence?”I went on with life, thinking we were doing great.

And you know what? It was easy to do that. I was seven years into raising my child with diabetes and I was burned out. Extra-crispy burned out. So there I slid, feet up and back deep into the soft cushions of the Davenport called “denial.” It was so comfortable, I couldn’t bear to pick myself up, stretch out and face the hard work in front of me. I lounged in the glorious softness of ignorance.

My daughter began to go to great lengths to hide her deception (I share some things to watch out for in a sidebar at the end). To this day, I flinch when I see a bottle of control solution or hear that a meter has been “misplaced.”

And again I tell you: this is all my fault.

 One day, when I asked her to check and she yelled a number in to me and I wrote it down, she came in, looked me in the eye and said “Mom. You shouldn’t trust me so much.”

I laughed. I laughed. My daughter was using code to ask for help and I laughed. Because – she was the model patient. And I trusted her. And it was just … easier. Yes: it turns my stomach to this day.

So once the A1c was back and the truth was clear, (and in fairness to me; even her endo and CDE were completely floored. None of us saw it coming or happening), it was time to make a change.

And change I did. Within three months her A1c was back to rock-star status, and I was watching her every move. I would never, ever let her go into DKA on my watch again (and she did not). But I knew something: while I would never, ever, ever let her slip into DKA again, I did not want to rob her of her freedom.

So what’s a mom to do? How could I keep her safe and not smother her with oversight (and perhaps drive her to burn out even more?) Because even while I obviously wanted to never make the same mistake again, I did not want to let go of my dream and goal of never letting diabetes rob her of her joy in life. Her team agreed and helped us along.

Here’s the one simple thing I could have done (and I started to do) to keep her safe:

Actually see her check her blood sugar and administer insulin at least once a day.

 I’m not saying that’s all I did. I’m just saying if on a certain day that’s all you can manage (and again; I know it’s hard for parents of smaller kids to imagine this. But take an older teen. Mix in some rebellion. Dollop on a long school and after school sports/drama/student government schedule. Top it off with a social life and you’ve got a challenge. For them to truly live their lives, they cannot always be with you.

So again, if ALL you can do is SEE them do this once a day, they’re going to stay out of DKA. Twice a day is even better. Because if you actually watch it happen; it happens.

It’s funny though: I know I am way, way, way oversensitive about this (being that gosh … I almost killed my child with my lunacy), but you have no idea how many times I suggest this to parents and they are insulted.

Because they raised their kids right. (So did I.) Because their child is honest about everything else (so was mine). Because in their house, there is trust (there was in mine too). So I ask them: what’s the harm? If I could go back in time, I’d have given anything to have done that simple step and been wrong than to have let my child go through what I let her go through.

The following years were not a breeze. My daughter did not enjoy diabetes in her teen years. But she was never hospitalized again. She didn’t miss school because of diabetes and she was able to eek by. Her health might not have been perfect, but I kept her safe and still gave her freedom.

Today she’s a young adult, over that burn out (for the most part. What person with T1D doesn’t have their moments?) She’s acing college and rocking her Congressional internship. In a few months she’ll graduate and go on to her working life.

Sometimes, I forget how different it almost was. But today I’m remembering and sharing for one simple reason:

So that’s never the case for you.

And you know what? If I get beaten up for this or picked on, it will all be worth it if your child never lapses into true DKA by their own doing.

You, unlike me, will never feel the guilt of truly letting your child down like I did. She was a child, even if I acted like she was a responsible adult. She needed me to intervene and my ego and burn out got in the way. May reading this mean that will never happen at your house.

Here’s to that goal.

 ******

SIDEBAR: Tricks and things to look for

 

Signs your child may be faking or lying:

*Lost or forgotten meters ( a way of them avoiding you seeing them)

*A sudden increase in “bad sites” (a reason they are high if you find out they are or they admit they are)

*Sudden use of control solution (to fake a number).

*Batteries “run out” for a long time when they are not with you (a reason they did not use their pump or meter)

 

Tricks:

*Control solution checks (just keep all the solution away from the child)

*Calling up a number, sticking in a used strip and “showing it” as a current check (Just be sure to focus in on the time and date on the result as well).

*Friend’s blood. (No way of knowing it. But it does happen)

*Disconnecting pump under clothing to let bolus drip out.

*Squirting shot out next to skin instead of in it.

I remember once my daughter told me all these tricks saying to her “Goodness! If you’d used those evil powers for good we’d probably have world peace and a cure for diabetes!”

 

Last note: I want you to know that we are fine. It only took that once for me to learn. That my daughter and I were able to tackle this, keep her safe, allow her to thrive in all of her life’s goals and still be close is something I am quite proud of.

Filed in: Advocacycurediabetes helpDKA in teensfeaturedGeneral HealthInspirationJDRF Children's CongressTeen Years and the challenges Tags:

Comments (29)

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  1. Sherri says:

    I agree with everything you said, but there’s another factor I would like to add. First, we’re still fairly new to this. Our son was diagnosed August 2, 2012, with a blood glucose level over 1300 and DKA, a1c of 13.8. During that honeymoon phase we were very much like you with a model patient and wonderful numbers. About 6 months into our journey his numbers unexplainably started increasing. I couldn’t figure out why. That’s when I started finding hidden food wrappers and less of what I thought I had in the fridge or pantry. He was sneaking food and it wasn’t being covered by insulin. He was tired of the regimen and everything that went along with it. He was also going through a growth spurt and was hungry. It took a good talk and working with his endo to increase his carb count, but we managed to get through.

  2. katy says:

    This story gives me chills. Maybe the most chilling part is “I was seven years into raising my child with diabetes and I was burned out. Extra-crispy burned out.” It hit me like a bucket of bricks: it’s still going to be hard five years from now. We won’t…hit a point of less effort. Ever.

    That’s a bummer.

    FWIW, I don’t think you’re a lunatic or that you almost killed your child. I blame the diabetes, and maybe the teen hormones, not you!

    I’m glad you shared this.

  3. Jacquie says:

    I’m 35 now, and take reasonable care of myself, but I remember this stuff like it was yesterday! Doing it, and then the terror of being caught. Somehow we learned that you can use nail polish (nail polish!) instead of blood to get a decent number on your meter. I snuck food, too: Reese’s cups at school every day. My endo started checking my fingertips at appointments to make sure they were nice and scarred. You can’t fake scabs!

  4. Sue says:

    You are a rock star and so is Lauren. No journey comes without bumps, twists and turns. If it hadn’t been those particular bumps, it would have been something else. Trust me,I’ve got the T1 family member on the transplant list to prove it…We are all thankful that she is healthy, happy, and whole. I can’t tell you how much “meeting” you and your approach to parenting has helped me, as we have a very similar way, you and I. I still remember the first time my husband and I left Devon with my mom, his first overnight away from us. I kept repeating “my only criteria for success is that he is alive when we get home”…
    Thanks for being who you are <3

  5. Michelle says:

    Moira, thank you for sharing this. We’re only 4 years in, but with a teenager now I am hyper aware of all these signs. So far mine is too happy to turn diabetes over to mom in the evenings after dealing with it during the day, so I still have that control. But the other thing we do (which I guess wouldn’t help if they were faking using control solution or someone elses blood) is have her leave the meter on the kitchen counter. I check it when I get home, and I don’t comment on it. This way, she doesn’t feel the pressure of having to justify any of her numbers, but I’m still seeing what happened during the day and making note of trends.

    I’m extra grateful now that she found a friend in school who also has type 1 and is as mature with it as Sarah has been. They eat lunch together, check their bg together, and I think that helps them to feel less “different”.

    As Jacquie said, not your fault. Diabetes is stupid and unforgiving. And while we always say that it’s not something our kids should have to deal with, well, it’s not something WE parents should have to deal with either. I don’t have a medical degree, and yet we have to make these constant decisions that directly impact our kids health. It’s craziness! Anyway, you’re amazing, and I love that you share these stories to help those of us with less experience.

  6. Robin Hubbard says:

    We are six years in with an almost 12 year old. I can hear everything you are saying…especially her increasing independence and my feeling extra crispy burnt out. She/we have also been the model patients. I feel like you just threw up the red flag to ME! I see all of this in myself and my daughter and I know she is turning the very same corner. Thank you for the heads up…I don’t think I am exaggerating by saying you could be saving our lives. xo

  7. Krista says:

    Not your fault.

    In this post I am just like your daughter, and you are just like my mom and dad.

    It wasn’t my parents’s fault I got burned out, lied to them, ignored being diabetic. It was this disease’s fault mixed in with being a teenager. 100% those two reasons mixed together.

    I love you bunches Moira, thanks for still being the coolest T1d Mamma (next to my Mom of course) ;)

  8. Bridget says:

    I am a type 1 and my teenaged daughter is as well. I remember my teenaged years well. I ate what I wanted when my mom wasn’t around, didn’t test when I didn’t feel like it, etc…I think that most T1 teens go through this phase. Luckily care now is much less restricting. Back then, I had a shot in the morning that would cover my breakfast and lunch, I had to eat just the right amount of food and the same amount for each meal. If I wasn’t hungry, I had to eat. If I was hungry and it wasn’t mealtime, I couldn’t eat. The routine really got to me. My daughter, while still dealing with all things diabetes, at least has more flexibility. But she is a teenager with a condition that sometimes she would rather ignore or forget. I do spot checks on her meter every few days to look at the whole picture and ask her to bring me the meter at least once a day to look at the number. It is a constant battle between giving her freedom then reigning her in. If I see that she is not testing at school when she needs to then she must go to the nurse to be supervised while doing it. I need to give her the space and independence to learn to handle T1 on her own but I also need to check up on her to make sure she is doing just that. Teens are sneaky creatures! Thanks for sharing, it’s good to know that other moms have/are dealing with the same things. No criticism, just praise for sharing and opening a scary chapter of your life to help others!

  9. Christy says:

    It’s not your fault! I’m 32 and have been a type 1 since I was 11 months old. This stage is something every single person who has diabetes and happens to be a teenager goes through. Some are just a bit more rebellious than others. I remember eating stuff I knew I wasn’t supposed to at school and then jumping on the trampoline for 2 hours after school to try to get my numbers within an okay range so I wouldn’t get questioned at dinner time. Sometimes I think that letting the teenager experience high blood sugars and how it feels to their body, energy level, temperament and moods is a good idea. It feels like crap. By pointing this out and comparing it to what they feel like when they are under better control is a good reminder to try for the most part to keep themselves within range. (i go on many ‘shopping trips’ with my friend’s 15 year old to remind her of this when her A1C gets to be too high. It usually reigns her in for a while and since I know how she feels, she seems to listen to me more than her mom at this point.)

    My 9 month daughter was diagnosed three months ago. I know that the road ahead will be hard but we will make it, good and bad times included. I know there will be both. This is normal. But we have to remember that once in a while when we mess up, the rest of the time, we are doing a fantastic job of something that most people would never dream of having to do and we are just doing the best we can. Don’t blame yourself. Blame the disease. It’s relentless and doesn’t let us rest.

  10. Katie says:

    Thanks Moira! Really, not your fault. Yes, we should all KNOW. But yes, we get burnout too. Even when our kids are NOT the perfect model patient… they will still deceive themselves. And really – that is what is happening. They are using magical thinking to deceive themselves, not us. They think it will be OK. No young person really believes in mortality.

    And, yes, some will never see themselves or their young adult with diabetes here. But some will. Even if they NEVER admit it.

  11. Jules says:

    Dear Moira…

    I want to reach out and give you a big hug for sharing this most personal and vulnerable story. I echo the sentiments of not feeling responsible ~ ahhh, us mamas are forever plagued by the guilt. Add to it caring for your child’s life-threatening condition and that guilt is amplified a kazillion times.

    Your story is so important and worthy to share. I admit, it hurts to read this. It scares me. But the information is golden. Yesterday was my 5 year old’s 3 year diaversary. You and I have “chatted” online before, so I feel like I do have a connection with you. I am grateful for you honesty, your candor, and your support. The DOC is lucky to have you.

    Lots of hugs, Moira. Thank you for sharing.

    xo Jules

  12. Beth says:

    Thank you for writing about this. My daughter is only 6 (dx at 4) and has a very compliant, wanting to please personality. I will remember this in the next 5-10 years as she starts more and more of her own care.

  13. John says:

    I love your story, but I do not love your image. The condition is not a Venn diagram of trade-offs. I, a T1D, and many other diabetics strive for metabolic ketosis. It is the objective of low carb diets such as Atkins, Primal/Paleo, LCHF, SouthBeach, etc for weight loss. If you burn high levels of your own fat, you are producing ketones, and you are technically in ketosis. Insulin and blood sugar levels in IDDs are completely independent of this dietary ketosis.

    I have been in ketosis all day showing medium-high ketones that would send most parents of T1Ds into a tizzy. Yet my BGs have ranged from 3.1 to 6.7 mmol/l (56 to 121). I show high ketones but am in no danger of DKA.

  14. Sara says:

    What a great article. So often parents are afraid to admit the behaviors that go with young T1 diabetics, for fear of judgement. Verbalizing the “accidents,” the fears, and the side effects that come with T1 diabetes, is such a help to those just starting on this path. If nothing else, it gives them a bit of a road map with possible detours and pit holes that might be avoided. Even the most saintly child, sometime or another, is tempted to stray from the straight and narrow. With T1s,it is even more tempting, given the regimentation of their lives compared with other teenagers. My son learned, at age 3, that he could hold the testape (the only home testing mechanism we had back then) in a stream of water and then show me he wasn’t spilling sugar. I finally caught him at it, and realized I needed to stay close to him while he was testing. As a male, he didn’t want his mom watching him urinate on the tape, but it had to be, whether he liked it or not. When he was 9, his dad and I divorced. His dad insisted on having custody, and I(unable to afford his medical needs)agreed. He visited me every month for a few days. When he was about 12, he took it into his head to test his limits. I did not know it, but he had gone without insulin for three days before he came to visit me. I found him that night on the bathroom floor, barely conscious and dehydrated from throwing up. I carried him to the car and took him to the emergency room. His doctor had him stay in the hospital for several days. There have been other frightening episodes, including extreme lows with convulsions, but all in all, he has done well and been exceptionally healthy for someone who has been diabetic for 41 years. He is now 43 and still dealing with the brittleness that was there in childhood. His thyroid is overactive, so we are dealing with that also. He is just now beginning to deal with double and triple vision. He dreads its progress, as he is trying to go back to school for his master’s degree. Back in the early days, he was the only T1 in town and there was not much support other than subscribing to the ADA magazine. Knowing that there are other moms out there and the internet can connect us, is such a support. Again, thank you for writing a great article.

  15. Shara Bialo says:

    Thank you for sharing the parents’ perspective on this. I played the same tricks on my very trusting parents for years, and now I am a Pedi Endo who sees my patients fooling their own parents ALL THE TIME. I tell them my story in hopes that it helps, and now I will forward your story to them, too. Parents and patients always think they are the only ones who feel shame around diabetes and it couldn’t be farther from the truth.

    You are a brave, good mother and your daughter is so lucky to have you on her side!

  16. Wendy Kroner says:

    You and Lauren are Rockstars!!You have helped me in so many ways. I am honored to call you a friend ,and with out Diabetes I never would have met you. I have learned so much from you thru the years, and your support is cherished.

  17. Ruth Manlove says:

    Moira. This is absolutely raw. Your candor is deeply appreciated. Lauren is lucky to have you as her Mama Bear. ;-)

  18. Amy says:

    Thank you for sharing, Moira. This hit hard as my son who was dx in Aug, 2013 has already taken over a lot of his care and recently has began increasing his intake and eating “on the sly.” We talk about it but it didn’t hit me how important it is to keep an eye on him and still be there even as he become so much more independant. Your sharing will definantly save a life or two, I know it!

  19. Lisa says:

    Dear Moira,
    Thank you for sharing this touching story. The biggest challenge of a parenting a type 1 teen is to find that balance of giving them space and independence and keeping them safe. There is no right and wrong and no magic formula. Parenting a teen is complex enough and diabetes just adds an extra layer and magnifies everything a million times. My son was diagnosed at 4 and is now almost Looking back at those early years when I was in charge of everything diabetes now it seems “easy”! It is a fine line with teenagers with giving them their space and making sure they are being responsible. Nobody wants to be an annoying nagging parent ( I hear my self saying ” did you test” “did you bolus” “what’s your number” way too much even in my own head) but at the same time it is hard to figure out exactly how much to let go. Your story is so understandable and it is easy to see how that could have happened. So not your fault at all! I am glad that the experience was life changing for both you and Lauren and all worked out and I am grateful to you for bravely sharing this with all of us Type 1 parents!
    Lisa

  20. Lisa says:

    Hi again.. sorry I was typing fast.. meant to say my son was diagnosed at 4 and now almost 15!!

  21. Anonymous says:

    Great post. Another trick my 16 year old did was underbolusing. If the pump suggested three units he’d do one. I’d see a bolus on the pump and think he was dosing, not realising it wasn’t the correct amount. It was enough to keep him out of DKA, but not enough to stop the highs and the huge A1C, that we kept putting down to other causes, until we worked out what was going on.

  22. Misty says:

    Moira, thank you so much for sharing your story! Independence is something that we have been working towards for a while now with my daughter. All the while, trying to find ways of balancing safety with independence. It’s hard. It’s scary. I believe that your story will help to prepare us for the upcoming teen years. Thank you. I appreciate your vulnerability and honesty so much.

  23. Dolores says:

    Thanks for sharing this story!

    At times I get frustrated with my son’s diabetes care at school … and I have toyed with the idea of having my son take over his care and eliminating the need for the school nurse. I asked our nurse educator when kid’s stop relying on the school nurse … and she insisted that as long as they are in school, all the way through high school, the school nurse should be part of their daily care. I was a little surprised by her answer … and secretly thought to myself that my son was different and can handle it … but now I read this! And now I better understand my nurse educator’s point of view! THANK YOU. Thank you for reminding me that my son is just a kid … someone who needs help managing this horribly burdensome disease!

  24. Catherine says:

    Today, I found the strength to read this – and I’m so glad I did. Thank you Moira. You know the balancing act that I am performing at the moment and I fear that perhaps I have stepped away just a little too much as well. My daughter is exactly like Lauren – the “model patient” – and we are the “model family”. Your words of wisdom, as always, have given me much to ponder. Thank you xo

  25. Anne says:

    Few parents of type 1 teenagers put the stories of their struggles online, so I’m glad that so many years after the events you describe, you are sharing this story for the benefit of other parents. Thanks to Lauren for allowing you to share her story.

    I read your guest post, back in 2010, in which you told the story of Lauren’s DKA episode. At that time, I was struggling with whether I allowed my early-teen son enough independence. I was listening too much to the comments and “advice” of co-workers, relatives, and whoever else doesn’t really have a clue. All that stuff like: “When are you going to let go?” “Shouldn’t he be able to take care of himself by now?” Your story gave me the confidence in my own decisions and I decided to ignore what anyone else thought about how independent .. or not … my son was.

  26. Marsha says:

    I thought I had a grip on it all-until an hour ago. My now 16-yr old daughter was diagnosed a week after she turned 9. We’ve had the normal struggle for control, tears and fits because “I just don’t want to” and missteps but I thought we had done good. Only once did we have an issue with DKA-she was sick with a virus and sugars skyrocketed. Overnight in the PICU was all that was needed. Yes, we’ve had once or twice a forgotten meter (a 10:00 trip to the movie theater in my pajamas replays in my mind) but overall she has dealt good with her disease. The last two mornings I’ve had trouble waking my daughter for school, check her sugar first day was 43 and today 31. We corrected quickly and her numbers rose to acceptable levels. This afternoon I collected her meter in order to record her readings and call the endo doctor to lower her insulin pumps nighttime basal rates only that except while in school where they watch her check her sugars, my child has not tested her sugars for a week. A week! And of course when I confront her I get “well if that’s what the pump says…..” Seriously? I ask daily what her sugar was and she has listed something off the top of her head that I want to hear! After tears, threats, grounding, and scare tactics of the medical drama variety I searched online and found your article from 2010 on diabetes mine.com. It’s been a sob-fest since.

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