On Thursday we brought Harlan to a clinic because of a rash on his face, where he was diagnosed with strep throat and prescribed antibiotics. He got worse that night despite the medicine (he was in terrible pain and the rash spread and started peeling on his neck) so on Friday morning we took him to the emergency room at Vanderbilt Children’s Hospital.
Despite more intravenous antibiotics his condition continues to worsen, and the doctors now believe he has Stevens-Johnson Syndrome (SJS).
Harlan was admitted to the pediatrics ward at Vanderbilt Children’s Hospital on Friday shortly after we brought him to the ER. The condition is currently still worsening, which is expected with this disorder. He is on IV antibiotics, morphine for pain management, and a number of creams and lotions to keep him safe from infection and minimize scarring on his body where the skin is blistering and coming off. Treatment is primarily supportive care similar to how you would treat a burn victim.
This is what we know so far regarding his prognosis:
- It will continue to get worse before it gets better.
- The Vanderbilt Children’s Hospital sees 4-5 cases of this per year, and recovery rates are very good.
- The average hospital stay length for patients with this condition is 20 days.
- Literature about SJS on the internet will often cite concerningly high mortality rates, however this is due to most SJS patients being elderly and suffering from secondary complications (pneumonia, infection, etc.) The doctors here have said they feel very confident about Harlan’s case not becoming life-threatening.
Currently, in the pediatric ward, the nurse visits every two hours to give Harlan his morphine and re-apply creams. We have been informed that Harlan may be moved to the Pediatric Intensive Care Unit later tonight (one floor down from where we are currently). The reason for this is that the ICU is better equipped to help manage his pain, and there he will receive 1-on-1 care from a nurse who will be consulting with the burn unit on how to best care for Harlan’s skin.
There are dermatologists on his case to monitor his skin, ophthalmologists to help keep his eyes safe from damage and infection, the burn unit is consulting, as well as urologists, and general pediatrics specialists. He is receiving the best of care here.
I’ll continue to post status updates here at least every day to keep everyone who loves and cares about Harlan informed about his progress.