Age: 3.0
Sex: M
Vaccine: COVID19
Symptoms: Posture abnormal, ROHHAD syndrome, Rash, Respiratory failure, SARS-CoV-2 antibody test positive
Clinical narrative: On 7/5/22, this then 3-year 3-month-old previously healthy male received his first Pfizer CoVID-19 vaccine; he was also prescribed oral amoxicillin x 14 days for sinusitis. After some 9 days of antibiotic, he developed rash, joint pain and fatigue.  On 7/14/22, he was diagnosed with serum sickness.  After six weeks of intermittent courses of prednisone, his condition improved.  Family met with an allergist, who discussed patient with allergy colleagues. Per parents, the allergists assessed amoxicillin as the culprit with 95% likelihood, and CoVID vaccine as 5% likelihood, and suggested that only rechallenge with one or the other could confirm which.  They declined rechallenge at this time. On 4/6/23 (at age 4), he received DtaP, IPV, MMR and live varicella vaccines. After this, parents report, he experienced return of joint pain, which was more frequent, more severe and more long-lasting.  Also starting in April 2023, he began to gain weight, 8 lbs in 8 weeks, up to 98th percentile for age. Lab workup revealed beta-thalassemia. In June 2023, his joint pains returned (unable to walk to the mailbox) and he developed fatigue. In July 2023, his symptoms stabilized. In August 2023, patient and his older brother attended daytime summer camp where they were exposed to CoVID-19. Then 8/21/23, during a family trip, family developed symptoms of CoVID-19 infection. Patient however also developed neurologic signs/symptoms, including eyes rolling back and involuntary head bobbing. After developing droopy eyes and fatigue, he was admitted to Hospital on 8/25/23, where MRI brain was unrevealing, but CoVID-19 testing of upper respiratory tract specimen was positive by PCR. He was discharged after 2 days. In September 2023, he experienced progressive neurologic decline consisting of abnormal eye movements and head movements, progressively slow/garbled speech, balance issues, a change in affect, and regression of fine and gross motor skills. Mother reached out to hospital Immunology to inquire about possible long CoVID as a sequela of his initial CoVID-19 vaccine, and triggered subsequently by his 4-year-old vaccines and then by his CoVID-19 infection, requesting that his CoVID-19 spike protein antibody levels be tested (see January 2024 events below). On 9/19/23, parents noted worsening sleepiness and hypothermia, and he was admitted to Hospital. During the subsequent 3-month hospitalization, he had 3 stints in the intensive care unit, for workup of autonomic dysregulation; management of hypernatremia, altered mental status and respiratory failure during MRI; and management of hypovolemic shock with altered mental status, respectively. He underwent extensive diagnostic testing of the central nervous system and endocrine system, particularly the hypothalamic-pituitary-adrenal axis. He received immunomodulatory treatments for presumed inflammatory process, including methylprednisolone, intravenous immune globulins, and Anakinra. He was discharged from the hospital 12/14/23 with a nasogastric tube and positive airway pressure ventilatory support at night, with a clinical impression of ROHHAD (rapid-onset obesity, hypothalamic dysfunction, hypoventilation, and autonomic dysregulation) syndrome, a condition with known association with paraneoplastic autoimmune encephalitis secondary to neuro-endocrine tumors. On 1/11/24, he was admitted again to Hospital with acute-on-chronic hypoxemic and hypercarbic respiratory failure requiring mechanical ventilation due to disordered breathing and severe apnea. Because of a strong published association of ROHHAD with neuro-endocrine tumors, his previous central nervous system imaging was reviewed, MRI repeated, and a suspicious para-spinous tumor identified. On 2/2/24, he underwent resection of the mass, which was identified as neuroblastoma, and susbsequently received high-dose cyclophosphamide. During January 2024, he received ampicillin-sulbactam and amoxicillin-clavulanate as treatment for suspected aspiration pneumonia, without any adverse effects; parents consider that amoxicillin was thus eliminated as cause of initial serum sickness, leaving CoVID-19 vaccine as culprit. On 1/22/24, he underwent CoVID-19 antibody testing: spike IgG Ab positive, nucleocapsid IgG Ab negative, consistent with vaccine exposure but not infection.  He remained hospitalized for 11 months, was discharged in December 2024, and readmitted in January 2025.