Harlan’s symptoms got worse again this afternoon, with new blisters and sores appearing on his forehead and back. The dermatology specialists have renewed their recommendation for intravenous immunoglobulin (IVIG) to help treat his condition.
While it is a slightly controversial step, as there are no clinical trials proving the efficacy of IVIG in SJS and it is an off-label use, the studies and literature that have been done are very promising and many health centers are using IVIG to treat SJS in children with overwhelmingly positive outcomes. Since the dermatology specialists are strongly recommending it with agreement from the other departments consulting on Harlan’s case, we are agreeing to go forward with the IVIG, in the hopes that it will help guide Harlan to a quicker and safer recovery.
I’ll update again with more details of the treatment (such as when it will be performed) when I know more. We are keeping Leif out of the hospital as best we can to keep him safe, so I am currently home with him while Heather is spending tonight with Harlan (we plan on alternating nights at the hospital and at home with Leif for the time being).
Despite the worsening of his symptoms, Harlan is still doing very well and being very brave. Both Heather and I and his doctors and nurses are extremely proud of how strong our little boy is.