Our quest to find bandages for sensitive skin due to Pompe disease
Extremely sensitive skin made enzyme replacement infusions challenging
For years, it’s been evident that my 5-year-old son, Cayden, has extremely sensitive skin. We first noticed the issue during one of his hospitalizations as a baby. We were at the children’s hospital for his enzyme replacement infusion, and when they removed the dressing from his port site, we noticed an angry-looking red rash where the dressing had been.
Since then, we’ve searched high and low for dressings that don’t affect his skin as much. Cayden has biweekly enzyme replacement infusions to treat his infantile-onset Pompe disease, so it was crucial for us to find something that worked.
Most people typically use a dressing called Tegaderm, which is included in most IV kits and is very common. Unfortunately, Cayden has a pretty severe reaction to it. After just a few hours, his skin gets red and itchy, and he’ll scratch it until it becomes bloody and raw.
If he has to wear a bandage for a longer period of time, his skin will get blisters that ooze as they heal. On one occasion, the reaction was so bad that we had to use special creams prescribed by the hospital’s wound clinic. It was a pretty horrific sight, to say the least.
Finding products that work
Thankfully, we’ve found two other dressings that work well for Cayden. Our go-to dressing for his port and IVs is a product called SorbaView. It’s similar to Tegaderm, but the adhesives are different, so he doesn’t have a negative reaction to them.
We’ve also used another dressing called IV3000, but that was only in a pinch when Cayden was hospitalized due to pneumonia and respiratory syncytial virus. The hospital doesn’t have a large supply of SorbaView, so it’s hard to track down. Luckily, they had IV3000, which worked well.
Cayden’s skin reactions to adhesives include Band-Aids. After infusions, when the needle is removed from his port, Cayden needs a Band-Aid to cover the hole where the needle was. Regular Band-Aids cause the same type of itchy rash as the Tegaderm dressing, so I had to search hard for other types of bandages.
During my search, I came across bamboo bandages on Amazon. Although they were a bit more expensive than typical Band-Aids, I wanted to give them a try. To my surprise, they worked like a charm! They even have a cute design with pandas, which Cayden likes more than plain, brown Band-Aids.
It sucks that Cayden has to deal with sensitive skin in addition to the rest of his long list of medical issues. Thankfully, this problem was pretty easily resolved. I know we aren’t the only ones dealing with sensitive skin, but regardless, it sure isn’t fun!
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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