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.
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.
Henry developed a tape and adhesive allergy and within 48 hours the reaction became systemic.
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.
- 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
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.
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.