Dealing with a Severe Adhesive Allergy
That’s Not Just Contact Dermatitis
This is a guest post from a D-mom named Rachel Morgan who was a recent guest on my podcast. At one point we spoke about her son Henry's severe adhesive allergy and I asked her if she would be interested in contributing a blog post on the subject. I think you'll agree that Henry's situation was dire and that his mother's insistence on finding an answer that would allow him to continue to use his diabetes technology, is nothing short of impressive.
Henry's back. Click to enlarge
Living with diabetes means you get gut punched several times a week, whether it’s a bad low, an out of control birthday party complete with grocery store cup cakes, chips, soda, and pizza, or simply watching your sleeping child hold out his finger for a 2 am BG check. Our three year old son, Henry, was diagnosed in March of 2014 and by late May he was on an Animas pump and Dexcom. With these tools in place, we felt some of the control diabetes had devoured starting to return. We could see what a long car ride did to Henry’s blood sugar, so we increased his basal by 30% and had perfect numbers on a 15 hour car ride. Double arrows down caught a scary low of 48 on a hot August day at the zoo. Then all the sudden, we were double and triple gut punched in October of 2014 when this happened.
Within 48 hours the reaction became systemic. Click to enlarge
Henry developed a tape and adhesive allergy and within 48 hours the reaction became systemic.
Click to enlarge
Type 1 is an autoimmune disease, and Henry also developed a severe tape and adhesive allergy. His primary care physician and Endo were worried about anaphylactic shock; he was given oral steroids (hello, high blood sugars!) and a horse load of Benadryl, and we were told to stop using devices with adhesive and go back to multiple daily injections (MDI). We took the Dexcom off but we wanted Henry to stay on the pump for the benefit of his long term health. I became that mom. I scoured the internet and made an insanely detailed power point, which I sent to every medical professional who would listen. I researched colostomy care because I felt we were really dealing with skin breakdowns and wound care.
I found a CDE through Children with Diabetes who lectures on tape and adhesive allergies, and she called me back that night, and a few days later some of her personal T1D supplies showed up in our mailbox, and with a few more phone calls, research, and a little trial and error, here’s what we do to prepare a pump site.
Click to enlarge
- Wash area with warm water and antibacterial soap— Do not use alcohol
- Completely dry the area
- Apply one puff of Flonase (sweet-talking or demanding this prescription from Endo or PCP is necessary)
- Apply thin layer of Cavilon barrier cream (Amazon)
- Apply a 6cm X 7cm layer or Tegaderm HP 9534HP (NOT Tegaderm!!) Check with your pump supplier— some insurances cover this and it’s shipped with pump supplies. You can also purchase Tegaderm HP from Amazon.
- Place inset through Tegaderm HP
- We place another layer of Tegaderm on top to secure the pump site and provide an extra layer or barrier for the adhesive of the detach inset
- When wet, blow dry site with hair-dyer on a cool setting
- Apply prescription Hydrocortisone after removing the Tegaderm HP and old site
- Remove any extra adhesive from the old site at bath time with calendula oil
A rashless, T1D strong Henry today!
The wounds eventually healed after six months. I’ve heard some people describe these wounds as burns, and the skin damage is extensive. Henry’s skin is finally healed, and we’re about to try Dexcom again, using the above preparation method, but with a hydrocolloid barrier, like Johnson & Johnson Tough Pads, sandwiched between the layers of Tegaderm HP. I’ve read about people successfully using Duoderm and blue tape, a kind of baby tape used in NICU’s, as a barrier and adhesive method, but we have yet to try these products.
Being a T1D parent is really difficult, so I’ve learned to find joy in the small victories, like staying on a pump. We’re taking it one number at a time and moving forward.
You can listen to my conversation with Rachel right here in this post, on iTunes, Stitcher, at JuiceboxPodcast.com or with your favorite podcast app.
The insulin bottles pictured in the header of this blog post are from the first eight months of Henry's life with type 1. Rachel knitted a heart for each... If you have questions about the process Rachel described in this post, you can contact her here.
Sometimes Your Blog Makes Me Feel Like a Failure
A long time ago on a blog far far away lived the father of a little girl who has type 1 diabetes...
Many years ago during a conversation with a fellow diabetes parent named Michelle I learned something about my blog that I was painfully unaware of... "Sometimes", Michelle told me, "Sometimes your blog makes me feel like a failure". This was of course, not my goal.
I was crushed because it wasn't Michelle who failed, it was me
Michelle and Mason
Michelle went on to share with me that while she enjoyed Arden's Day and found it to be refreshing and honest, it felt like my writing focused more on what went right with diabetes and in fact that the lack of relatable 'diabetes fail' conversations left her feeling as if everyone was 'succeeding' but her and that she was failing her son Mason.
I took her words to heart
I spent the next few days rereading my own blog and I could see what Michelle was talking about. I wasn't purposely just talking about the 'good stuff' but my attempt to be positive for the community was definitely coming off slanted in that direction. So I changed how I share online with Michelle's brave words as my guide. The adjustment was difficult in many ways but also incredibly rewarding. Anyway, that was a long time ago and today I pride myself on how honest and completely transparent this blog is - Not only is Arden's Day now a complete reflection of my life with type 1 diabetes but I've seen the power of sharing the good and the bad and how it has helped to buoy other families in their times of trouble.
I owe all of that, to Michelle Golladay and she is this weeks guest on the Juicebox podcast.
As you listen to Michelle and I talk about parenting and diabetes she'll spend a few moments telling me about a Parent Advisor Program that she has helped to set up at the Akron Children's Hospital - bringing the DOC IRL! I've included links here and in the show notes of the podcast, local Ohio residents and those interested in learning more should check them out.
You can listen to our conversation right here with the embedded player, on iTunes, Stitcher or your favorite podcast application.
Dexcom and Apple Watch are here and they bring iPad support
The Apple Watch arrives today and Dexcom has updated their apps to do more than just work on the watch...
This blog post is rather preliminary but important never-the-less because in addition to updating the Dexcom Share and Dexcom Follow apps to work with the new Apple Watch... Dexcom has also added iPad support - however you may not be able to find the apps on the app store without knowing this simple trick.
When you navigate, on your iPad, to the app store and search for Dexcom you won't receive any results - see below.
But if you change the drop down menu on the top left from iPad Only to iPhone Only you will - see below. This is because while the Dexcom Share2 and Follow apps do now work on iPad, they aren't designed (I hope Dexcom does eventually) for iPad. Meaning you will have to use the X2 button on the lower left of your iPad to upscale/enlarge the app to fit your iPad screen. Not the biggest problem, Instagram and many other apps are the same. Basically you are installing the iPhone app onto your iPad, a possibility that was blocked until the update happened.
So even if you aren't one of the people who are sitting by the front door waiting for their shiny new Apple Watch (Mine arrives in a few weeks and I will do a full review of the Dexcom app) this app update still brings some much needed iPad usability joy to your diabetes day.
Be badass
What do you do when your Dexcom Share alarms because your BG is falling while you're hitting?
Follow these simple tips...
You can be at your best even when diabetes tries to get the best of you...
Congratulations to Arden and each of her teammates for winning the 10u Lincoln Park Tournament this weekend. They played six games in two days, winning the last after 9pm on Sunday night. Sure it took a few juice boxes and a couple of 2 am bananas to get to the trophy but it wasn't anything that a badass girl couldn't accomplish.
Be badass today!
This blog entry came up in episode 12 of the Juicebox Podcast... So I added the episode here.
Four Minute Podcast Tutorial
If you have been wondering about my podcast but unsure of how to access it... these quick how-to videos are what you've been waiting for!
The first video explains how to listen via a web browser...
A brief how-to for people interested in listening to my type 1 diabetes podcast via their web browser.
The second video explains how to listen via a podcast app on your smartphone (iPhone, Android and all of them really)...
That's pretty much all there is to it. If you have any questions please post them here and I'll answer them as soon as possible. Thanks for reading and listening!
Links you need:
The Juicebox Podcast on iTunes and Stitcher
Apple's Podcast app for iOS on the App Store
Stitcher App for iOS
A list of Android on Google play