Journal entry by Laura Benson — May 30, 2017
It's been a very long, rough day. Colin is in a lot of pain. He is covered in Aquaphor ointment which is incredibly sticky/tacky. Each time he moves his skin will stick to the sheet below him and tears off a large chunk of his skin!
His blisters are popping and continue to spread. Also extremely painful.
Additionally, sadly another rash has begun. He officially is relapsing again with another "cycle"
He itched all night long, today his skin is hot and prickly on his arms, back and abdomen and the rash is quickly spreading.
His skin was wrapped in special burn medicated wraps (xeroform and silver nitrate) and a sleeve of gauze is placed over everything to hold it in place.
We met with many doctors today.
An especially informative meeting was with the dermatologist team today.
They used the phrase interface reaction and also DIHS
But still no official diagnosis was made.
Additional labs and a visit from hematology for blood smears and more
The most interesting and controversial and hopeful part of his day is that Colin will begin three days of IVIg which is similar to a blood transfusion that will give him antibodies from others to help him fight "this thing that's attacking him"
Round one is scheduled for this evening.
Please keep him in your prayers. Today was one of his worst days.
I have attached a photo of a nurse wrapping his legs.
Colin's aunt Kathy has been so helpful explaining many of these medical terms to me, she shared an article below, about this type of blood transfusion known as intravenous immunoglobulin (IVIG)
http://onlinelibrary.wiley.com/store/10.1111/1346-8138.12925/asset/jde12925.pdf?v=1&t=j3c6yiv2&s=b26f3274052aa9a3108d4567c21e0f0a938ee95a
Another link is here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/
His blisters are popping and continue to spread. Also extremely painful.
Additionally, sadly another rash has begun. He officially is relapsing again with another "cycle"
He itched all night long, today his skin is hot and prickly on his arms, back and abdomen and the rash is quickly spreading.
His skin was wrapped in special burn medicated wraps (xeroform and silver nitrate) and a sleeve of gauze is placed over everything to hold it in place.
We met with many doctors today.
An especially informative meeting was with the dermatologist team today.
They used the phrase interface reaction and also DIHS
But still no official diagnosis was made.
Additional labs and a visit from hematology for blood smears and more
The most interesting and controversial and hopeful part of his day is that Colin will begin three days of IVIg which is similar to a blood transfusion that will give him antibodies from others to help him fight "this thing that's attacking him"
Round one is scheduled for this evening.
Please keep him in your prayers. Today was one of his worst days.
I have attached a photo of a nurse wrapping his legs.
Colin's aunt Kathy has been so helpful explaining many of these medical terms to me, she shared an article below, about this type of blood transfusion known as intravenous immunoglobulin (IVIG)
http://onlinelibrary.wiley.com/store/10.1111/1346-8138.12925/asset/jde12925.pdf?v=1&t=j3c6yiv2&s=b26f3274052aa9a3108d4567c21e0f0a938ee95a
Another link is here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/
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