Wednesday, September 7, 2016

The What's Eating Jacob Saga Conclusion?!

Is summer really over? I've been up to so much that I haven't even realised that this was my last week before school starts for another year. Have I ever got an update to share!

A year ago we started the "What's Eating Jacob Saga" which I nicely summed up in Bad To Worse to Horrific: The Graphic GTube Story, after living with some pretty strange and severe reactions to medical products. Last week, I think we have FINALLY found some answers!!

My Dermatology team from Sick Kids had referred me to another dermatologist at Sunnybrook Hospital for allergy patch testing in hopes of finding a feeding tube that I didn't react to. Unfortunately there is no direct scientific test to tell for certain if I am allergic to silicone, which we highly suspect I am, but in all we tested 90 different chemicals often found in medical products, as well as Tegaderm (IV tape) and Covidien Kendall AMD Foam Dressing.

First thing I can tell you about patch testing: It sounds easy enough. Oh yeah, we're just going to tape these little chemical extracts to your back for a few days and see what happens. It's tape, what's so bad about that?! Well not only does tape pull as you move, but if you should happen to react... I wasn't sure my skin would still be on my body by day 5.

Second thing I can tell you about the test: The results can be extremely helpful if you end up having allergies, so totally worth the annoying, itchy, burny tear-my-skin-off feelings the test creates.

We found out that I am highly allergic to:

  • Decyl Glucoside and Lauryl Glucoside - two products most often found in cleansers, ironically it's in a lot of stuff for sensitive skin. It causes the cleaning product to foam up. The problem here is that the foaming hand sanitizer at the hospital, I'm allergic to it. It also hides in a lot of commerical household cleansers. 
  • Limonen - This comes from the rind of citrus fruits and is used in products that have fragrances, anything with that "fresh clean scent" typically has Limonen. Such as my dishsoap. The unfortunate thing here is when products just say "fragrance" in their ingredients, it could very well contain this as a hidden ingredient. 
  • Propolis - This comes from bee products. It's often used in face creams to hold the moisture on to your skin. 
But most shockingly:

I am highly allergic to the Covidien Kendall AMD Foam Dressing. My awesome doctor who did the patch testing is trying to get his hands on the exact chemical as it's not available for commercial patch testing in Canada, but his best guess is that I'm likely allergic to something called PHMB. The long scientific name is Polyhexamethylene Biguanide. It's used in wound-care management to help prevent and heal infections. I've been using it since about 3 weeks after I had my original GTube inserted in November last year. I've written to my patient product representative for this area to see if she would be willing to send us a sample of the extract to test, so we're just waiting to hear back. I've stopped using the foam around my GTube and things have improved a bit. 

Which still leaves the question as to whether I'm reacting to the actual tube itself. One of my mom's friends came up with the idea of taping an old tube to a clear spot on my skin and seeing if it reacts. When my mom asked the million dollar question - If this could actually be done - the GTube responded that it was a great idea and that they had a tube for us! So, we're going to pick up the extra tube this week when we're there for the pain clinic. 

So things are moving forward and we're slowly getting some answers that I'm sure are going to make a huge difference to how I've been feeling. It's sad that it took the summer to get some answers, but there will be plenty more summers to come! 

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