Help Aidan Fight ADEM

On Wednesday, Aug 01, 2018 Aidan was medivaced to Kapiolani Medical Center. Originally being treated just 2 days prior for the flu and dehydration, Aidan's symptoms quickly worsened to the point where he could barely stand or hold up his arms, he lost urinary function control and he stopped talking.

Aidan was admitted into Kapiolani's Pediatric Intensive Care Unit. Doctors and Nurses quickly did their assessments. Rhonda and Donovan were briefed on "worse case scenario" situations. On Friday, Aug. 03, Aidan's condition declined and turned into a worse case scenario. Aidan was immediately intubated and given medications to put him in an induced coma. Aidan's brain was still swelling and the Doctors didn't know what was causing it.

After numerous tests and scans, the Doctors diagnosed Aidan with ADEM - Acute Disseminated Encephalitis. His immune system was producing antibodies that were attacking his brain. He was given steroids to reduce the swelling and now had to have plasma pheresis so his blood could be cleaned of the antibodies that was doing harm to his brain. After a little over a week of being in PICU, Aidan was transfered to the Wilcox floor at Kapiolani. He got stronger, started talking and eating and his goal was to walk to the cafeteria! For those of you who know Aidan, his #1 is FOOD!! He made it to the cafeteria! His consistent therapy and "school" was prepping him to come home. His steroid tapering was halfway from being done, when Aidan started complaining of headaches, he didn't want to be touched and he was throwing up...all signs that the swelling was back.

An MRI and CAT scan showed that the swelling was indeed back and it was worse from admission. This time, it affected his vision. Aidan was readmitted to PICU. Steroid treatment and plasmapheresis started again. And just like the first time, Aidan got stronger, was released to the Wilcox floor, started his therapy and as the steroid tapering started to drop in dosage, the swelling came back! On Sept 01, exactly one month from when they arrived at Kapiolani, Aidan was admitted into the PICU for the third time! This time, the Doctors and Nurses worked quickly. Still being treated for ADEM, Aidan's constant swelling prompted his Doctor's to consult with Stanford and Mayo Clinic. All Doctor's agreed that the medication Aidan needed to start was Rituximab. Rituximab is a medication commonly used for cancer patients with Non-Hodgkin's Lymphoma but in Aidan's situation, it will weaken his immune system and wipe out the antibodies that are attacking his brain.


A meeting with Aidan's Doctors and his parents - Rhonda and Donny who have been rotating, taking shifts so that one parent is up with Aidan at all times since they arrived on August 01, was done on Sept. 11. They were told that Aidan's MRI and CAT scan done earlier that day, showed brain damage in both frontal lobes and in the back of his brain. The extent of the damage will not be known until Aidan is able to come out of the induced coma and start to interact on his own. They have a long recovery ahead. Doctors are estimating that Aidan will be at Kapiolani for about two years! Being that he will be there for awhile, Aidan will need to undergo two surgeries - a tracheotomy and another one to insert a colostomy bag. Being that the side effect of the Rituximab is to compromise his immune system, Aidan's recovery will be delicate and take a little longer. The Doctor's will not know if the Rituximab was successful in reducing his antibodies until 6-8 weeks post treatment.