Stories of Caleb and living with type 1 diabetes.
When I think of managing diabetes with the holidays, my initial reaction is that it’s just like any other day – one blood sugar at a time. But when Rob asked me to write a guest post on the subject, I realized we do handle things a little bit differently.
“Holidays: When a Kids Job is to Just Be a Kid” posted today at Accu-Chek Diabetes Link.
Caleb has been pumping with Apidra® for over two years. Prior to that, he used Novolog®.
Shortly after that post, things went a little sideways and I didn’t know why. He had unrelenting highs at night. I would correct mid 200s all night long to no avail and end up with a wee hour Pod change. Then two nights later it would happen all over again, just like Groundhog Day.
I’ve brought you right to the punchline, so the problem is probably crystal clear to you. It was anything but clear to me at the time. This is why:
– Caleb had been pumping with Apidra® for about two months with no issues at all. His Pods would last the full three days and even up to eighty-hours with the 8 hour grace period.
– The “sideways” path started around the holidays. The variables were greater at this time. Timing of meals, content of meals. Schedules in general were off. BG control can easily be less than optimal in these circumstances.
– The pattern of highs every other night had not quite established itself. We were still getting some Pods through the full three days without an issue.
– Not a single person I knew who was Podding and Apidraing had this problem. All sailed smoothly through their full three days.
– Then there was the night when he actually did correct and I convinced myself that it couldn’t be the insulin clogging in the pump. Remember, I was not sleeping much during this time, so my reasoning was less than optimal.
I tested EVERYTHING. Food. Activity. Basals. Site locations. Moon phases. I called EVERYONE. Users. Insulet. Sanofi. Insulet again. Sanofi again. More users.
I thought Caleb might have to change pumps. If you know us, you know Caleb has only pumped OmniPod®. It’s been six years. We’ve never considered anything else. But Apidra® had been so effective, I was considering a pump change rather than an insulin change.
Finally, I tested the insulins. I put Caleb back on Novolog®. He went a couple of weeks and managed through day three without a problem. I put him back on Apidra® and the second day highs came right back.
It was clear. At right around the 48 hour mark, insulin seemed to have trouble getting through.
The photos in this post are of different cannulas from problematic Pods with what seems like obstructions. I had seen many a cannula before this issue that looked much the same. These other cannulas had been delivering insulin freely according to Caleb’s BGs. So even the visual evidence found in these photos didn’t convince me right away.
So we had to decide whether pump changes every two days would be worth it. I look back now remembering how difficult a decision it was, yet today it’s no big deal. It’s a slight nuisance to change Caleb’s Pod 15 times a month instead of 10. Nothing more.
And it’s worth it.
He’s using his pump of choice and my insulin of choice.
There are some benefits to more frequent site changes:
– Caleb’s sites heal MUCH more quickly. His scarring is greatly reduced. I noticed this almost instantly.
– He almost never has a kink, failure or delivery issue in any way, shape or form. This has been HUGE. When we were changing his sites every three days, that third day could be rather suspenseful. I only realized this in retrospect, now that the suspense is gone. I used to wonder more about what might be causing an unexplained high and take a gamble on whether it was just diabetes being diabetes or if there was a delivery issue. Many a time I took the wrong bet and took off a kinked or clogged Pod. Now it’s almost always diabetes just being the PITA that diabetes is, and we can correct and move on with confidence. To me, this has really had a great impact on Caleb’s overall diabetes management: increased confidence = better decisions.
Although this doesn’t seem like a prevailing issue, I know we aren’t the only ones experiencing this. If you’re having a similar challenge and haven’t quite decided what the problem is, I hope this post may help a little.
Next up: Eliminating Another Insulin Variable.
I can’t remember if I first heard about Road ID® from Harry or Gary – they both wear them. But I do remember later hearing about it being used as a medical ID for kids from Reyna – that woman is full of helpful tips!
For years, Caleb used silicone bands that were engraved with all the critical information right on the band. He had several colors and patterns and he loved them. It was always a very sad Caleb that got off the bus with a broken band in his hand when one bit the dust.
The price for those bands got to be a little too much for my liking and although Caleb still had several in inventory, I kept my eyes peeled for an appropriate replacement. Road ID® fit the bill!
Santa had the same idea. He brought both Colin and Caleb Road ID®s this past Christmas. They each have the Wrist ID Thin with several different colored bands to switch out. Colin has one because he runs and bikes by himself quite a bit. The difference between Colin’s and Caleb’s is the extra info of “Type 1 Diabetic/Peanut Allergy” on Caleb’s.
How can I not love the fact that something that Caleb needs because he has diabetes is something that non-D brother Colin needs too? Surprisingly, this was one of Caleb’s favorite Christmas presents, and Lila actually felt a little left out that Santa didn’t bring her one. (Her birthday is coming up though, and it’s on her list).
I must mention that their customer service is amazing! Santa used their measuring chart to determine what size band to get but he must have been drinking spiked coco because the one he chose was a bit too big. Getting them replaced was easy and pleasurable. They have our family’s business for life.
Caleb had his Road ID® on at TriCamp and guess who else wears one! 😉
I just ordered another and was reminded that they contribute a portion of your purchase to an organization of your choice – I chose JDRF!
I just got a coupon promo code if you plan to place an order for $1 off! ThanksLorraine17663773
I’m very excited about tonight’s dsma live episode. Cliff Scherb will be the guest. I was lucky enough to spend a morning with Cliff last year. He is kind, generous and knowledgable. I could have spent the entire day picking his brain, but after nearly three hours, I figured I was already pushing it.
Cliff is a triathlon coach and founder of TriStar Athletes LLC. He has competed with Team Type 1 and in several Ironman events including the World Championship in Kona and is also a record holder in more than one of these events.
Since meeting with Cliff, I’ve wished everyone could have some time to hear him talk about his strategies and techniques for keeping his blood sugar in range not only on a daily basis, but also during intense training and competitions. Tonight, that wish comes true!
Please join the live conversation tonight, 9PM EST on Blog Talk Radio. If you’ve ever been frustrated by unpredictable blood sugars while exercising or training, I’m pretty sure you’ll be glad you tuned in.
Caleb has been using the DexCom Seven Plus continuous glucose monitoring system since September of 2009. For quite a while he used it without any skin issue whatsoever. After about seven months of use (or at approximately the time that this picture of Caleb was taken, and yes, that is the only tie-in of this post to that picture, but I didn’t want the next picture to be the one that you are first greeted with for obvious reasons) things started to get a little tricky.
His skin started to react and frankly, it was nasty.
It was also heartbreaking. This tool which provided such valuable information, and comfort in otherwise stressful times of blindness, was working wonderfully but for this acid-like burning of Caleb’s skin.
My heartfelt thanks to so many of you who gave me suggestions. I don’t think I can remember all of the things I’ve tried over the last six or so months. Here is a list of many of them:
One time I placed IV3000 on his skin, then the sticky side of another piece of IV3000 to the sticky side of the DexCom sensor. It took quite a bit of coordination to then apply tape over the sensor with the inserter still attached to be able to adhere it to his body. As desperate as we were for a solution, I was glad this technique did not work.
We had some improvement at times. This picture shows Caleb’s arm a couple days after removing a sensor. You can clearly see the oval shape of the DexCom adhesive on his skin. The area was less irritated in this case – mostly a big dry patch. Whatever we did though, Caleb would inevitably end up scratching and complaining about the site and we would never get the full seven days out of a sensor.
I am hesitent, after so many unsuccessful attempts, to formally document that I do believe we have found a remedy to Caleb’s issue, for fear that the diabetes gods will strike me down for even daring to think that I might have something under control. Nevertheless, I feel behooved to share for those who may be going through the same torment that we have over the last half of a year.
The absolute, number one, critical element for Caleb is to ensure that his skin has been given adequate time to recover from the last site. His skin needs to be smooth without any dryness, otherwise he will complain of itching within hours, even minutes of putting a new sensor on.
Assuming we are dealing with healthy skin, I do the following:
I’m not sure which part of the above steps is actually resolving the issue or whether one or more of the steps could be elliminated; I’ve recenty skipped the barrier wipe and seem to have equally effective results. For all I know maybe he’s just simply gotten over it and none of the steps are doing a darn thing. If I muster the courage to apply the tape directly to his skin, I’ll report back. I expect that won’t be for a while though. In the meantime, we’re enjoying the heavenliness of his smooth, itch-free skin that’s revealed when we remove a sensor that’s lived its expected lifetime.
Please be kind, diabetes gods. I don’t mean to taunt you. Rest assured, you are still keeping us on our toes and I know we will never be completely in control. 🙂
Here’s a nifty resource from OmniPod which includes some of the above plus additional adhesive tips and suggestions. It’s intended for OmniPod, but the ideas are transferrable to other products as well.
Part 1 of 2 –
Not too long after sending Caleb off to school on his 4th diaversary, I got a phone call. It was just before lunch, Caleb was with the nurse ready to bolus, but he had no interest in eating. Mrs. M knew enough not to proceed with administering insulin – thank you!
Caleb came home not feeling well and ultimately threw up that evening. He woke up the next day okay. Not 100%, but good. He stayed home and recovered.
Or so I thought.
The next few days were the same. Caleb started his days like normal. He ate only a little less than usual for breakfast. Then as each day proceeded, he deteriorated. Then rallied. Then he couldn’t stand the sight of food. Then he was running around singing – happy as a clam. He threw up one more time during these three days – but it was a quick, painless, isolated incident. For the most part he was able to eat a little here and there. It didn’t seem too unusual for someone recovering from a stomach bug.
I slowly realized that anything Caleb ate required no insulin. I also slowly realized that for every 15 or 20 carbs I forced this poor boy to consume because it was getting increasingly difficult to keep his blood sugar above 100, only about 5 were showing up in his bg readings.
Not only had I not delivered a bolus of insulin for days, but his basal was just about as low as it could go and at times I turned it off completely. Caleb uses about 25 units of insulin per day. He was down to less than 4.
We again thought he was done with it because he became a little interested in food, but he relapsed and spent a day going back and forth between happy go lucky and crying in agony and then vomiting. He was having trouble keeping anything down and was so exhausted from having to sip juice, suck on an ice pop or take a spoonful of Hershey’s syrup that the thought of consuming the slightest thing brought tears to his eyes and a pit to my stomach.
I knew we had mini-glucagon as an option, but I couldn’t help think we weren’t really in the red-box emergency zone. I knew we could bring him to the ER if we needed to, but good golly, I wanted to avoid that if we could.
At that point David called the doctor. Our concern was not so much managing D; we just didn’t know why this thing kept rearing its ugly head just when we thought it was gone. “It’s viral. It’s viral. It’s viral.” Okay fine. Sorry to bother you. Thank you very much.
With great effort, we were able to maintain his blood sugars in a safe range. Somehow, we’re able to ward off ketones, only occasionally entering the “trace” zone and once the “small” zone, but never for long.
For two more days Caleb had no appetite. He was able to take in fluids here and there and although it was still a challenge, we were managing to keep his bgs in a safe range with minimal amounts of insulin while completely avoiding ketones.
This was a long, tense, sleepless and horrid-at-times, eight days.
On day 8, which happened to be by birthday, Caleb still didn’t want any meals, but was willing to share my birthday treat of Jelly Bellys. For three reasons I will never forget this:
As quickly as it came on, it was gone. Just like that. He was back to normal. He woke up on day nine STARVING (music to my ears) and almost instantly was back to his normal doses of insulin.
To all the people who live with diabetes and handle situations like this all on their own, I applaud you. It’s not easy managing someone else in this situation. Managing it by yourself is simply heroic.
Caleb finally did get to have his diaversary meal, albeit a little late…
Our friend Bill from 1HappyDiabetic.com is hosting the “Pay It Forward Program”. Bill is a diabetes video master. He, in conjunction with wellthen.org has created this program to get video cameras to people who might not otherwise have access to one. If you’ve always wanted to create a diabetes related video, but couldn’t get your hands on the proper equipment, now’s your chance to let your creative ideas and energies flow. See Bill’s site for more info on the program.
Because we love all things Bill, Caleb signed up for the program, we received one of Bill’s Mino HD Flip cameras and we went to work. After considering a few ideas, Caleb felt the story of his mini-glucagon experience was an important one to share.
You may have read my version of events yesterday. Here is Caleb’s recap. However, I warn you, this may not be appropriate viewing if you are the slightest bit squeamish. This video was created by Caleb, a seven year-old boy with a typical seven year-old boy’s sense of humor. Please keep that in mind should you dare to proceed.
I decided not to discourage Caleb’s creativity as he was particularly enthusiastic about his ideas. I apologize in advance. 🙂
Breakfast with Santa is something we all look forward to each year. It is simply magical to see any doubt my kids may have instantly vanish when Santa and Mrs. Claus approach them and say, “Hey, I hear you guys (insert actual fact about their lives that the Claus’ would have no way of knowing unless they were indeed real).”
Usually, Santa makes his first appearance after we are settled and have begun eating. He wanders around the room and makes small talk with everyone. After a little while, he and Mrs. Claus call the families up one by one and meet with them personally. This year, for the first time, Santa was there and ready to go when we walked in. We not only had a casual chat at our table, but were done with our personal time with the Claus’ before breakfast was even served.
Everyone looks happy, don’t they?
As we headed back to our seats, Caleb said his belly was bothering him. It was more than a hour after our normal breakfast time, so I attributed it to hunger. I asked him if he was ready to eat, to which he replied, “yes”, and I bolused. Pancakes were retrieved and Caleb began eating.
Caleb ate slowly and very little. He decided that the sight and smell of food was unappealing. He took a sip of juice and waved that away too.
I had just bolused him with 4 units of insulin. 4 units is about twenty percent of Caleb’s total daily dose.
I coaxed him to drink his juice – maybe the insulin was kicking in and he’s starting to feel low and a little boost will make him feel better.
It didn’t. He heaved.
At this point David and Colin had left for another commitment of Colin’s. Lila was distracted with various Christmas crafts.
I quickly swept Caleb away to the bathroom and anything he had just ingested came back out like a fire hose.
“No need to panic”, I told myself.
Caleb felt better after getting all that up. Maybe this was just a one time thing and he would have his appetite back.
No such luck. He threw up 2 more times over the course of the next half hour.
I knew the urgency of the situation. I knew I might need to get him to the hospital for a glucose drip and intravenous hydration. Still, there was no panic. I had the benefit of knowing a course of action that could avoid a trip to the emergency room.
I distinctly remember the details of Nan’s story in a similar situation. I remember how alarmed I felt when I read it the first time, picturing her and C going through every single step. The thought of using glucagon in mini doses that way was a new idea to me. I only had the frame of reference we were given when Caleb was diagnosed:
But thanks to Nan’s story, I knew that glucagon could be used in a less severe, though equally urgent situation. I pulled it out and put it on the table. I explained to Caleb that if he couldn’t eat, I would be able to cover the bolus with a shot. After a few more attempts to drink, he looked at me and said, “Mom, let’s do the shot.”
So that’s what we did. He pulled up his sleeve and I injected him with 5 units. Almost instantly, he looked better. He was soon feeling better and able to do a craft with his sister.
After a little while, a fingerstick of 89, and quite a bit of insulin still working in him, I gave him another injection of 5 units.
We finished everything we needed to and Caleb seemed to be at a safe blood sugar for transport. So we made our move. If anyone around us had a clue what was going on, they didn’t make it known.
We got home and I tucked Caleb into bed and made him comfortable. He was a safe 134 and we were out of the danger zone. He was able to keep down enough fluids to stay hydrated and his blood sugar remained stable.
Thank you to my friends who have shared their own glucagon stories and thus given me the confidence and composure to handle this. Without the benefit of your combined stories, I’m certain things would have gone very differently.
I thought I would never want to be part of the “Glucagon Club” but in fact I am glad to be in it. Given the circumstances of that morning, mini glucagon seems like an easy fix compared to any other alternatives I can think of.
Lastly, and maybe most importantly, thank you Santa for being early this year. Someone was watching over us to make sure that we could have that moment of joy. Our memory of that morning is mostly of our meeting with Mr. and Mrs. Claus which just happened to be followed by an unfortunate series of events. Had we eaten breakfast first like we normally do, those pictures above would be at least one person shy.
For more information on glucagon, here are the resources and stories that prepared me:
Note: the recommended dosing for mini glucagon is as follows:
I used a standard insulin syringe (not the harpoon included in the kit).
Caleb’s recap of these events is here.
Caleb had his third blood draw since being diagnosed.
He knew it was coming, but I didn’t tell him until that morning exactly when we were going. It didn’t make his day, but he pulled it together and stayed strong.
Caleb usually wants silence, no talking and no distractions. This year he asked for me to talk to him. As we were walking out of the house, I grabbed a joke book and big brother Colin’s job was to read him some funny lines.
Caleb totally rocked it!
I should take some tips from Lila – yes, she’s there too, but you wouldn’t know it because she’s doing a superb job of keeping quiet.
Here’s Caleb two years ago at his first blood draw. The bruises on his arms, which are now finally gone, jump out at me. They are the marks of alternate site testing.
I’ll never forget this phlebotomist. He was so kind and friendly. He still brings a smile to my face.
After this year’s draw, I told Caleb how proud I was of him because even though he didn’t want to, he did it without any trouble or complaining.
He told me, “Mom, I wanted to cry, but I didn’t.”
Thanks to everyone who checked in yesterday! Caleb really enjoyed reading all your comments. He sat and smiled and even chuckled out loud a couple of times. He has no idea what the food police are, but he found that reference downright hysterical.
It was great to read all your Day 1 posts and the different ways you all went about describing your day in the life of diabetes.
Caleb’s contribution today is most definitely short, and undeniably sweet!
Day 2 of Diabetes Blog Week.
Making the low go. Tell us your favorite way to treat a low.
Caleb’s top choices in his words:
Mom, it really doesn’t matter to me. I use lots of sugar tablets. My favorite is apple because they are sour. I use them especially at school because it’s easy, but I also like:
juice,
raisins,
yogurt covered raisins,
sour Skittles,
Starbursts,
Yogos,
sugar cubes,
sugar packets,
Swedish fish,
dried apricots
and pretzels.
That’s it – quick and to the point.
I try to unseal all the containers as soon as I get them so I don’t have to waste time with those nasty buggers when Caleb needs sugar FAST!
As a side note, Caleb says they are easy, but he’s told me before that he prefers glucose tabs at school because they appear more like medicine. It makes him uncomfortable to eat a “treat” or drink juice around the other kids since they don’t also get to indulge (or perhaps its more like avoiding the envious eyes around the classroom).
If you missed it, Day 1 – A day in the life with…diabetes.
Tomorrow’s topic: Your Biggest Supporter.
This is Caleb... 
