New Jersey OMS warrior is raising awareness!

Logan’s OMS battle began June 12, 2012. Two days earlier Logan was running around and swinging on the swings at Imagination Station and cheering his daddy on during a baseball game. Logan went from being able to walk, run, jump, and starting to put two words together to a child that could not walk straight, let alone run or jump, and could only say mama and agua.

Initially his pediatrician diagnosed him with an ear infection. After a few days of lethargic behavior and what we eventually came to know were rage attacks we took him to the Emergency Room at our local hospital where we were told it was complications to teething. A few days later we took him to another hospital where he was admitted and told it was cerebral ataxia, encephalitis, and then meningitis. We were there for over a week and Logan received two treatments of IVIG. We were sent home and told that he would have to relearn how to walk but he should be okay. For a few days we saw improvements but then his condition rapidly began to get worse. We tried a third hospital where we were told it was Sandifer Syndrome (acid reflux). When we realized that this was not a correct diagnosis we went back to the second hospital where we were eventually told that they thought it was OMS and recommended we fly out to see Dr. Pranzatelli in Springfield, Illinois. At Springfield, the diagnosis was confirmed by Dr. Pranzatelli and a treatment protocol was recommended. We flew back and two days later started treatment of ACTH injections, Retuximab infusions, and IVIG infusions as well as several scans where no neuroblastoma was found. He was also prescribed Zantac, Bactrim, Trazedone, Calcium, and Vitamin D drops. While on this treatment protocol, Logan was essentially on lockdown and his contact with other people was limited. He was enrolled in Early Intervention where he received Development Intervention and Speech Therapy. He also received PT for a few weeks but was discharged quickly as he relearned how to walk before all the other issues were resolved.

Logan underwent treatment from June 2012 till December 2013 when he received his last IVIG infusion. His port was removed in May 2014 and he is now in remission. He was tested by Early Intervention and our local school district when he timed out of Early Intervention and he did not qualify for services. Today, he sees his local neurologist, an immunologist, and Dr. Gorman every six months. He has made great progress and continues to amaze us daily. He loves reading and building houses with his legos. He loves trucks and can name many different types of construction vehicles with ease.

Every year, Logan and his family host an annual teddy bear drive to provide toys for kids in local hospitals, to raise awareness of OMS, and to raise funding for OMS research.