Brooklyn Rex was diagnosed with HLH in 2014 because of multiple complex symptoms and blood results that she had. It was a very long to get to that point after 40 days of fever, amongst other things. Her rash would come and go at the same time every day. With her Ferritin around 71,000 there were some quick decisions that were made. Platelets were crashing and going way high on other days. She had an infusion that broke out into her little arm one night and we honestly felt like we were about to lose her. As parents of a child that deal with the daily ‘what if’ can create many stresses. The emotional roller coaster that we were on with all the guess work by doctors was (and still is) traumatic.
Eventually we found a condition like HLH that accompanied her sore joints called Macrophage Activation Syndrome (MAS). So we packed our bags and baby girl and flew to Cape Town, South Africa to get a second opinion from a specialist at Red Cross Children’s Hospital. It was confirmed that she had Systemic Juvenile Idiopathic Arthritis complicated by MAS. We struggled to get Brooklyn stabilized with the limited treatment available in South Africa so we flew to Dallas, Texas where she has been seen by specialists at Scottish Rite Hospital for the past few years. Brooklyn’s condition has been also complicated by a recent diagnose of Crohn’s Disease which we are using biologics, along with her Chemo and other treatment, together with the Specific Carbohydrate Diet (SCD).