Opsoclonus-Myoclonus Syndrome (OMS)—also called opsoclonus-myoclonus-ataxia syndrome (OMAS) or Kinsbourne syndrome.
Opsoclonus-Myoclonus Syndrome (OMS) is a rare problem of the nervous system. It has three hallmark features:
Opsoclonus: the eyes make very fast, chaotic, jumpy movements in all directions, with no pause between the jumps. People often say the eyes look like they are “dancing.”
Myoclonus: muscles in the face, arms, trunk, or legs make quick, shock-like jerks that the person cannot control.
Ataxia: the person loses smooth control of movement and balance. Walking becomes wide-based and wobbly, and fine hand control is hard.
Doctors think OMS happens because the immune system mistakenly attacks parts of the brain that coordinate eye and body movements, especially the cerebellum and connections in the brainstem. In children it is often linked to a small tumor of nerve tissue called a neuroblastoma (a tumor of early nerve cells). In adults it is more often linked to certain cancers (this is called a paraneoplastic cause), or it may follow an infection (called parainfectious). In many people, no single trigger is found, but the pattern still looks immune-mediated. Genetic Rare Diseases CenterNational Organization for Rare DisordersPMC
A practical bedside rule doctors use is: if someone has any three of four features—(1) opsoclonus, (2) myoclonus or ataxia, (3) behavior change or sleep disturbance, and (4) a neuroblastoma—the diagnosis of OMAS is very likely. This “3-of-4” approach comes from expert reviews and helps when the presentation is not textbook-perfect. PMCActa Neurológica Colombiana
Your cerebellum is like a movement “editor”: it polishes eye, hand, and gait control so motions are smooth and accurate. In OMS, immune cells and inflammatory chemicals disrupt cerebellar circuits that control saccades (fast eye jumps) and posture. That is why the eyes dart in all directions without a pause (opsoclonus) and why the body shows jerks (myoclonus) and clumsiness (ataxia). In some adults with cancer, blood tests may find anti-neuronal antibodies (for example anti-Ri/ANNA-2), but many patients have no detectable antibody—so a negative antibody panel does not rule out OMS. PMCAmerican Academy of Neurology
Why does OMS happen
Your immune system produces cells and proteins (antibodies) that normally attack infections. In OMS, parts of this defense system mistakenly attack brain areas that guide eye movements and posture (especially circuits linking the cerebellum and brainstem). The exact target is not the same for every person, and doctors may or may not find specific “autoantibodies” in blood or spinal fluid. But the overall pattern matches an immune-mediated disorder, often triggered by a tumor (like neuroblastoma in children) or sometimes by a recent infection (post-infectious). Adults can have OMS as a paraneoplastic effect of cancers (for example, lung or breast cancer), or without a found trigger. PMC+1
Types
1) Pediatric paraneoplastic OMS (tumor-associated).
Most often linked to neuroblastoma or related neural-crest tumors (ganglioneuroblastoma, ganglioneuroma). Only a small fraction of children with neuroblastoma develop OMS, but OMS in a young child is a cue to actively search for neuroblastoma. Acta Neurológica Colombianasiope.eu
2) Pediatric non-tumor OMS (post-infectious or “idiopathic”).
Some children develop OMS after a viral or bacterial illness, and no tumor is found. The clinical picture still looks immune-mediated, and careful tumor screening is still done. PMC
3) Adult paraneoplastic OMS.
In adults, OMS often accompanies cancers such as breast cancer or small-cell lung cancer; many of these cases have anti-neuronal antibodies (anti-Ri is classic but not universal). OMS can also rarely accompany other tumors. JAMA NetworkPMC
4) Adult post-infectious/autoimmune OMS.
Adults can also develop OMS after infections or without any cancer. Doctors still look carefully for hidden tumors because finding and treating a tumor can help the neurological syndrome. PMC
5) Toxin or medicine-related opsoclonus (look-alikes).
Certain toxins or medicines (for example lithium or metronidazole) can cause opsoclonus and ataxia. These cases may mimic OMS, but once the trigger is removed, symptoms can improve. Doctors check for these exposures during work-up. NCBI
Causes
Below are 20 causes grouped for clarity. Not every cause is common; some are rare but documented. The key idea is that OMS is usually immune-mediated, and the immune trigger can be a tumor or an infection—and sometimes we never find it.
Tumor-related (paraneoplastic) causes
Neuroblastoma (children).
This is the classic tumor link in young children. Sometimes the tumor is tiny and hard to find, so doctors use urine chemical tests and imaging to search for it. OMS occurs in a small minority of neuroblastoma cases, but when OMS appears in a toddler, doctors must look closely for neuroblastoma. siope.euJNCCNGanglioneuroblastoma and 3) Ganglioneuroma (children).
These are related neural-crest tumors on the same spectrum as neuroblastoma. They are less common but can be associated with OMS, so the search strategy is similar. Acta Neurológica ColombianaBreast carcinoma (adults).
Adult OMS may accompany breast cancer; some patients have anti-Ri (ANNA-2) antibodies. Treating the cancer and the immune inflammation often helps. JAMA NetworkPMCSmall-cell lung carcinoma (adults).
Another well-described paraneoplastic association in adults. As with breast cancer, doctors look for anti-neuronal antibodies but do not rely solely on them. JAMA NetworkHodgkin or other lymphomas (adults).
Less commonly, lymphomas have been linked to OMS in paraneoplastic reports. Clinicians screen broadly if symptoms suggest a hidden cancer. American Academy of NeurologyParotid gland carcinoma and other rare tumors.
Very uncommon, but case reports show OMS with parotid adenocarcinoma and other unusual cancers; the message is to think widely during tumor search. jsurgmed.com
Infection-related (parainfectious) causes
SARS-CoV-2 (COVID-19).
Several case series describe OMS shortly after COVID-19 infection, likely due to immune activation rather than the virus directly attacking the brain. PMC+1Mycoplasma pneumoniae.
This respiratory bacterium has been linked to OMS in children and adults; reported cases often recover well with appropriate care. PubMedSpringerLinkLyme disease (Borrelia).
Rare but documented: children and adults with neuroborreliosis can develop opsoclonus and OMS-like symptoms; treatment of the infection leads to improvement. PMCScienceDirectEpstein-Barr virus (EBV).
EBV (the mono virus) is one of several viruses reported before OMS onset; the link is likely immune-mediated. ClinMed JournalsCytomegalovirus (CMV).
CMV has been mentioned among viral triggers in case literature of OMS. ClinMed JournalsEnteroviruses/Coxsackie B.
These common viruses occasionally precede OMS; evidence comes from case reports and small series. ClinMed JournalsWest Nile virus.
Neurotropic viruses like West Nile have been associated with OMS-like syndromes in scattered reports. ClinMed JournalsVaricella-zoster virus (chickenpox/shingles).
VZV has appeared in case reports as a possible trigger for opsoclonus and OMS. WikipediaMeasles or mumps.
Historical associations exist in case literature; again, the pattern is likely immune rather than direct viral invasion. WikipediaStreptococcal infections.
Occasionally cited among bacterial triggers; part of the broad infectious review clinicians consider. ClinMed JournalsSalmonella.
Very rare; included in broader lists of reported parainfectious OMS causes. ClinMed Journals
Autoimmune/other associations
Celiac disease (gluten-related autoimmunity).
Rare pediatric case reports describe OMS in children with celiac disease, supporting the idea that systemic autoimmunity can involve the cerebellum and eye-movement systems. PubMedDipot ULBMedication/toxin-related opsoclonus (OMS mimic).
Agents like lithium and metronidazole, heavy metals, or severe metabolic disturbance can cause opsoclonus and ataxia; these are important “look-alikes” doctors must rule out during an OMS work-up. NCBI
Symptoms
Chaotic, rapid eye jumps (opsoclonus).
People notice eyes “bouncing” in every direction without rest. Reading or focusing becomes exhausting because the eyes never hold still. Genetic Rare Diseases CenterMuscle jerks (myoclonus).
Quick, shock-like twitches strike the face, trunk, arms, or legs. They may worsen with movement or stress and make holding objects difficult. Genetic Rare Diseases CenterUnsteady walking (ataxia).
The person stands and walks with feet wide apart to keep balance; turning corners and climbing stairs feel unsafe. Genetic Rare Diseases CenterIrritability and behavior change.
Children may become fussy, clingy, or have sudden tantrums; adults may feel unusually on edge or emotionally labile. These changes are part of the syndrome, not poor discipline or personality. Genetic Rare Diseases CenterSleep problems.
Falling asleep and staying asleep is hard; sleep may be light and fragmented. Poor sleep then worsens daytime symptoms. Genetic Rare Diseases CenterTremor and shaky hands.
Beyond quick jerks, many people have an ongoing tremor that makes drawing, writing, or feeding difficult. MDPISpeech and language regression (in children).
Toddlers who previously spoke in phrases can lose words or stop speaking for a while; this can slowly improve with treatment and therapy. OsmosisTrouble focusing and thinking clearly.
Brain fog and slowed processing are common. School work or job tasks that were easy now feel overwhelming. National Organization for Rare DisordersNausea, dizziness, and motion sensitivity.
Because the eye-movement system is unstable, riding in a car or moving the head can trigger dizziness or queasiness. PMCBlurred or double vision temporarily.
Rapid eye jumps can make images smear or split, especially when reading or watching moving objects. AAODrooling or difficulty coordinating swallowing.
The same control problems affecting limbs and eyes can involve face and throat muscles. WikipediaStartle-sensitive jerks.
A sudden noise or touch can set off larger myoclonic bursts. National Organization for Rare DisordersWorsening with fatigue or stress.
When tired or ill, opsoclonus and myoclonus often flare, making rest and pacing important. MDPILoss of previously learned motor skills (children).
A child who walked well may suddenly crawl again or refuse to walk because of poor balance and fear of falling. Boston Children’s HospitalAutonomic or general malaise.
Poor appetite, low energy, or vague “not feeling well” can accompany the neurological signs during flares. Genetic Rare Diseases Center
Diagnostic tests
Doctors diagnose OMS by clinical features and by ruling out other problems while searching for a trigger (especially a tumor in children). Here are the common tests and what each one adds.
A) Physical exam (bedside)
Eye-movement observation.
The clinician watches for multidirectional, back-to-back saccades without pauses—the signature of opsoclonus. This alone strongly suggests OMS when paired with jerks or ataxia. NCBIGait and posture assessment.
Standing, turning, heel-to-toe walking, and narrow-base walking show the degree of ataxia and fall risk. It also helps separate OMS from inner-ear disorders. Genetic Rare Diseases CenterFinger-to-nose and heel-to-shin tests.
These simple bedside movements magnify cerebellar incoordination and tremor—even when gait looks only mildly abnormal. National Organization for Rare DisordersBehavior and sleep review.
Irritability, regression, and poor sleep are part of the diagnostic “constellation,” supporting OMS when combined with the movement signs. PMC
B) Manual/functional tests (no machines, but structured maneuvers)
Smooth pursuit and saccade testing.
The examiner asks the patient to follow a moving target and then jump gaze quickly between two points; chaotic saccades point toward opsoclonus rather than ordinary nystagmus. MedLinkFixation and suppression testing.
Asking the patient to fix their gaze on a fingertip helps reveal that the “jumps” are saccades without intersaccadic intervals—key for distinguishing opsoclonus from other eye oscillations. NCBIRomberg and stance challenges.
Standing with feet together (eyes open/closed) highlights cerebellar instability and proprioceptive contribution to balance problems. National Organization for Rare DisordersFunctional tasks (spiral drawing, cup-to-mouth).
Simple tasks quantify tremor and myoclonus during action and help track response over time at clinic visits. Boston Children’s Hospital
C) Laboratory and pathological tests
Urine catecholamine metabolites (VMA/HVA).
In children, vanillylmandelic acid (VMA) and homovanillic acid (HVA) help screen for neuroblastoma. A normal result does not fully exclude tumor, but elevated values raise suspicion and guide imaging. A spot urine is usually practical. OMSLife FoundationJNCCNSerum LDH and related tumor labs (when cancer is suspected).
These can support a tumor work-up alongside imaging in suspected neuroblastoma. siope.euCerebrospinal fluid (CSF) analysis.
A lumbar puncture may show mild inflammation (lymphocytes, oligoclonal bands) or be normal. The main value is ruling out infections and documenting inflammation. PMCParaneoplastic/neuronal antibody panel.
Panels often include anti-Ri (ANNA-2), anti-Hu (ANNA-1), anti-Yo (PCA-1), anti-Ma2, and others. A positive result supports a paraneoplastic process, especially in adults, but many OMS patients have no detectable antibodies, so negative tests do not exclude OMS. PMCInfectious testing guided by history.
Depending on symptoms and exposures, doctors may check Mycoplasma pneumoniae, Lyme (Borrelia), EBV, CMV, enteroviruses, or SARS-CoV-2 with serology/PCR. This helps identify parainfectious triggers. PubMedPMC+1
D) Electrodiagnostic and instrumental tests
EEG (electroencephalogram).
EEG is often normal or nonspecific in OMS; it mainly helps rule out epileptic jerks as the cause of myoclonus. PMCSurface EMG or accelerometry for myoclonus.
Short bursts recorded in affected muscles confirm myoclonus, quantify severity, and help separate it from tremor or tics. PMCVideo-oculography or electro-oculography.
These tools graph the rapid back-to-back saccades of opsoclonus and help document improvement with treatment. AAO
E) Imaging tests (brain and tumor search)
Brain MRI.
MRI is usually normal or shows subtle cerebellar changes; its main role is ruling out structural causes (like stroke or tumor) that can mimic OMAS. Lippincott JournalsWhole-body tumor search in adults (CT or PET-CT).
If paraneoplastic OMS is suspected, doctors image the chest, abdomen, and pelvis to look for breast, lung, or other tumors; PET-CT can reveal hidden cancers. NCBINeuroblastoma imaging in children.
Abdominal ultrasound, CT/MRI, and MIBG scintigraphy target common neuroblastoma sites; these complement urine VMA/HVA testing because some tumors are small or poorly secreting. OMSLife Foundationsiope.euBone marrow studies or tumor biopsy (when indicated).
If imaging or labs raise concern for neuroblastoma or another cancer, tissue confirmation may be needed to guide treatment. ARUP Consult
Non-Pharmacological Treatments (therapies & supports)
These do not replace medicines. They are add-ons that help recovery, reduce disability, and improve daily life. Each item includes a description, purpose, and how it helps (mechanism).
Early Physical Therapy (PT)
Description: Guided exercises for balance, strength, posture, and gait.
Purpose: Regain standing and walking; reduce falls.
Mechanism: Re-trains the cerebellum and body to coordinate movements; uses repetition to build new neural pathways.Occupational Therapy (OT)
Description: Training for hand use, dressing, feeding, and daily tasks.
Purpose: Restore independence in everyday life.
Mechanism: Task-specific practice improves fine motor control and sensory integration.Speech-Language Therapy
Description: Help with speech clarity, swallowing, language, and cognition.
Purpose: Recover words, safe feeding, and communication.
Mechanism: Repetitive speech and swallow exercises support neuroplasticity in language and bulbar control.Vision & Oculomotor Therapy
Description: Eye-movement exercises, tracking games, and visual stabilization strategies.
Purpose: Reduce blurring and disorientation from opsoclonus.
Mechanism: Strengthens compensatory eye control and improves visual fixation.Vestibular Rehabilitation
Description: Head/eye coordination and balance retraining.
Purpose: Treat dizziness and postural instability.
Mechanism: Gradual exposure retrains brain pathways that integrate balance signals.Sleep Hygiene Program
Description: Regular bedtime, calming routine, limit screens/caffeine, optimize sleep environment.
Purpose: Reduce irritability and relapses worsened by sleep loss.
Mechanism: Better sleep lowers stress hormones and stabilizes immune-brain signaling.Behavioral Therapy / Parent Coaching
Description: Practical tools for tantrums, irritability, and attention issues.
Purpose: Improve behavior and family coping.
Mechanism: Consistent routines, reward-based strategies, and stress reduction balance arousal systems.School & Early-Intervention Supports
Description: Individual learning plans, therapy at school, breaks for fatigue.
Purpose: Protect learning and participation.
Mechanism: Tailored tasks and pacing reduce overload while skills rebuild.Cognitive Rehabilitation
Description: Exercises for memory, attention, and processing speed.
Purpose: Address neuropsychological effects common in OMS.
Mechanism: Repetition and strategy training strengthen networks for thinking and learning. PMCFall-Prevention & Safety Aids
Description: Non-slip shoes, handrails, helmets when needed.
Purpose: Prevent injuries during recovery.
Mechanism: Reduces risk while balance and coordination improve.Nutritional Optimization
Description: Balanced calories, adequate protein, vitamins D/B, and hydration.
Purpose: Support healing and energy.
Mechanism: Provides building blocks for brain and muscle repair; avoids malnutrition from feeding difficulties.Stress-Reduction (breathing, mindfulness, play therapy)
Description: Age-appropriate calming skills and family play.
Purpose: Lower stress that can worsen symptoms.
Mechanism: Dampens stress pathways (sympathetic/adrenal) that interact with immune activity.Regular Infection Control
Description: Hand hygiene, prompt care for fevers, dental care.
Purpose: Reduce infection-triggered flares.
Mechanism: Fewer immune activations may mean fewer relapses.Vision Aids & Environmental Tweaks
Description: Sunglasses, hats, high-contrast targets, decluttered spaces.
Purpose: Decrease visual overwhelm.
Mechanism: Cuts down distracting visual motion and glare.Hydration & Constipation Management
Description: Water schedule, fiber, stool softeners if needed.
Purpose: Reduce headaches, irritability, and GI discomfort on meds.
Mechanism: Stable fluid/electrolyte balance supports overall comfort and sleep.Structured Day Routines
Description: Predictable timing for meals, therapy, naps.
Purpose: Stabilize behavior and energy.
Mechanism: Consistency reduces overstimulation and fatigue.Music- and Play-Based Motor Games
Description: Rhythmic stepping, clapping, drumming.
Purpose: Make rehab engaging and longer-lasting.
Mechanism: Rhythm can cue smoother movements and timing.Community & Peer Support
Description: OMS family groups and counseling as needed.
Purpose: Reduce isolation; share practical tips.
Mechanism: Social support improves adherence and caregiver resilience.Care Coordination (“medical home”)
Description: One lead clinician coordinates neurology, oncology, rehab, and school.
Purpose: Prevent gaps and duplications in care.
Mechanism: Timely, integrated decisions reduce relapse risk.Regular Tumor Surveillance (if relevant)
Description: Age-appropriate scans/urine tests if paraneoplastic risk.
Purpose: Find and treat a trigger such as neuroblastoma.
Mechanism: Removing a tumor removes the source of immune activation. PMC
Core Drug Treatments
Doses vary by age/weight and protocol; always follow a specialist’s plan.
ACTH (adrenocorticotropic hormone) – Hormone (immunomodulator)
Dose/Time: Common pediatric regimens give daily IM injections initially (for example, 40–80 units/m²/day), then slowly taper over weeks–months.
Purpose: Calm the immune attack and opsoclonus/myoclonus quickly.
Mechanism: Stimulates adrenal steroids and has direct immune-calming effects.
Side effects: Irritability, high blood pressure, high sugar, infection risk, weight gain.Prednisone / Prednisolone – Corticosteroid
Dose/Time: Often 1–2 mg/kg/day (or pulse methylprednisolone 20–30 mg/kg/day IV for 3–5 days), then taper.
Purpose: First-line immune suppression; reduces symptoms.
Mechanism: Broad anti-inflammatory and anti-immune actions.
Side effects: Mood changes, sleep problems, stomach upset, infection risk, slowed growth with long courses. PMCIVIG (Intravenous Immunoglobulin) – Pooled antibodies
Dose/Time: 2 g/kg total over 2–5 days, then repeated every 4–6 weeks for several months as needed.
Purpose: Rapid immune modulation and relapse prevention.
Mechanism: Neutralizes harmful antibodies and re-balances immune networks.
Side effects: Headache, nausea, aseptic meningitis (rare), infusion reactions. MDPIRituximab – Monoclonal antibody (anti-CD20 B-cell depleter)
Dose/Time: 375 mg/m² IV weekly × 4 (or equivalent schedules).
Purpose: Second-line in moderate–severe or relapsing cases; improves long-term control.
Mechanism: Removes B cells that make damaging antibodies.
Side effects: Infusion reactions, low immunoglobulins, infection risk (screen for hepatitis, vaccines up to date). PMCMDPICyclophosphamide – Alkylating immunosuppressant
Dose/Time: ~750 mg/m² IV monthly × 6 (varies).
Purpose: Second-line agent when steroids/IVIG are not enough.
Mechanism: Strongly suppresses overactive immune cells.
Side effects: Low blood counts, nausea, hair loss, infertility risk with high cumulative doses; needs close monitoring. NCBIMDPIMycophenolate Mofetil – Antimetabolite immunosuppressant
Dose/Time: ~600 mg/m² twice daily (pediatric), long-term maintenance.
Purpose: Steroid-sparing maintenance to prevent relapses.
Mechanism: Blocks lymphocyte proliferation.
Side effects: GI upset, low blood counts, infection risk.Azathioprine – Purine analog immunosuppressant
Dose/Time: 1–2.5 mg/kg/day; check TPMT activity before use.
Purpose: Alternative maintenance option.
Mechanism: Limits immune cell DNA synthesis.
Side effects: Low blood counts, liver toxicity, infection risk.Methotrexate (weekly low-dose) – Antimetabolite immunomodulator
Dose/Time: 10–15 mg/m² once weekly with folic acid.
Purpose: Another steroid-sparing option in chronic disease.
Mechanism: Dampens immune signaling pathways.
Side effects: Nausea, mouth sores, liver enzyme rise; avoid pregnancy.Levetiracetam – Antimyoclonus/antiepileptic
Dose/Time: ~10–60 mg/kg/day divided; adjust to effect.
Purpose: Symptom control of jerks while immune therapy takes effect.
Mechanism: Stabilizes neuronal excitability (SV2A binding).
Side effects: Irritability, sleep issues (often mild).Clonazepam – Benzodiazepine (GABA enhancer)
Dose/Time: Start very low and titrate (e.g., 0.01–0.1 mg/kg/day divided).
Purpose: Short-term relief of disabling myoclonus.
Mechanism: Boosts inhibitory GABA signaling.
Side effects: Sedation, imbalance, tolerance with long use.
Treatment strategies vary by center. Many teams now use “front-loaded” therapy (strong early combination: steroid ± IVIG plus rituximab/cyclophosphamide) to reduce relapses and long-term cognitive effects, rather than slow step-ups. Your team will tailor this to the child’s severity and tumor status. PMCDancing Eye Syndrome Trust
Dietary “Molecular” Supplements
These can support general brain/immune health. Evidence for OMS specifically is limited; they should not replace medical treatment. Ask your clinician before use, especially with immunotherapy.
Vitamin D3 (cholecalciferol 600–1000 IU/day; check levels) – supports immune balance and bone health; may lower autoimmune activity.
Omega-3 (EPA/DHA) (1–2 g/day combined) – anti-inflammatory lipid mediators; may improve neuronal membrane function.
Magnesium (100–400 mg/day depending on age) – calms neuromuscular excitability; may help cramps/twitches and sleep.
B-Complex (esp. B1, B6, B12, folate) (age-appropriate dosing) – supports nerve metabolism and myelin maintenance.
Coenzyme Q10 (50–200 mg/day) – mitochondrial support; may aid fatigue.
N-Acetylcysteine (NAC) (300–600 mg 1–2×/day) – antioxidant and glutamate modulation; theoretical neuroprotective effect.
Curcumin (standardized) (250–1000 mg/day with food) – anti-inflammatory pathways (NF-κB); watch drug interactions.
Probiotics (multistrain) (per label) – gut–immune crosstalk; may reduce infection frequency.
L-Carnitine (50–100 mg/kg/day max 3 g) – helps mitochondrial fatty-acid transport; sometimes used with valproate alternatives.
Melatonin (0.5–3 mg in children; 1–5 mg adults at bedtime) – sleep onset aid; antioxidant properties.
Advanced” Immune-Modulating Therapies
These are specialist-led options used when OMS is severe or keeps relapsing. Some overlap with the drug list above because the “hard-reset” effect is exactly why they’re used. Stem-cell approaches are investigational for OMS and not standard care.
Rituximab (anti-CD20) – see above; depletes B cells to reduce autoantibodies; often part of early combination therapy.
Cyclophosphamide (monthly IV pulses) – strong T/B-cell suppression for refractory disease.
Mycophenolate mofetil (maintenance) – helps keep disease quiet after induction.
Azathioprine (maintenance) – alternative long-term immune control.
Methotrexate (weekly, low-dose) – another maintenance option.
Autologous Hematopoietic Stem Cell Transplant (HSCT) – investigational in autoimmune neurology; rarely considered for extreme, refractory cases after weighing serious risks; not routine for OMS.
Rationale: these therapies recalibrate or deplete parts of the immune system that are misfiring against the brain. Protocols and timing vary; decisions are individualized and evidence is still evolving. NCBIMDPI
Surgeries
Surgery does not treat OMS itself. Operations are considered only for the underlying trigger (for example, a neuroblastoma) or for selected complications.
Tumor Resection (e.g., adrenal or thoracic neuroblastoma removal)
Why: Eliminate the paraneoplastic trigger to help calm the immune system.
Notes: Often combined with chemo depending on stage; OMS immune therapy still needed. PMCTumor Biopsy / Staging Procedures
Why: Confirm diagnosis and plan treatment safely.Minimally Invasive Approaches (laparoscopic/ thoracoscopic)
Why: Remove tumor with less pain and faster recovery when feasible.Central Venous Port Placement
Why: Secure IV access for repeated infusions (IVIG, chemotherapy, or immunotherapy).Strabismus Surgery (rare, later)
Why: Only if a persistent eye alignment problem remains after recovery and affects function.
Practical Prevention
Start treatment early and follow the plan; early control lowers long-term problems. PMC+1
Keep regular follow-ups with neurology/oncology/rehab to adjust therapy and watch for relapses.
Manage infections promptly (fever plan) to reduce immune flares.
Keep vaccinations current (timing may be adjusted around immunosuppression—coordinate with specialists).
Protect sleep with consistent routines.
Use your safety plan at home and school (fall prevention, extra time, calm spaces).
Support learning early with school services to prevent gaps.
Maintain good nutrition and hydration to support healing.
Avoid known triggers (sleep loss, illness exposure when on high-dose steroids, overexertion during flares).
Family stress management (counseling/support groups) to improve resilience and adherence.
When to see a doctor—right away
New or worsening eye jerks, shaking, or balance loss.
Fever, stiff neck, severe headache, or unusual sleepiness.
Behavior regression (loss of words or new aggression) or sudden learning decline.
Signs of medication side effects: very high blood pressure, severe mood swings, persistent vomiting, rash, or signs of infection.
Any new lump, persistent belly pain, or unexplained weight loss (possible tumor cues). Children’s Hospital of Philadelphia
What to eat—and what to avoid
Eat more of:
Balanced meals with protein (eggs, fish, beans), whole grains, and colorful fruits/vegetables.
Omega-3 sources (fish like salmon, flax, walnuts).
Calcium & vitamin D foods (dairy, fortified alternatives) to offset steroid effects on bones.
Fiber & fluids (oats, fruits, water) to prevent steroid-related constipation.
Iron-rich foods if appetite is poor (lean meats, legumes, leafy greens).
Limit or avoid:
Sugary drinks/snacks that worsen mood swings and weight gain on steroids.
Excess salt (chips, instant noodles) which can raise blood pressure on steroids.
Caffeine/energy drinks that aggravate sleep problems or jitteriness.
Alcohol (adults), which can worsen sedation with meds and impair immunity.
Unpasteurized/undercooked foods when immunosuppressed (food safety).
Frequently Asked Questions
Is OMS life-threatening?
Usually no, but it is serious. Without timely treatment, it can leave long-term learning and behavior problems. Early, adequate therapy lowers that risk. PMCWhy do the eyes move so wildly?
The immune system irritates brain circuits that keep eye movements steady, so the eyes dart in all directions (opsoclonus).Does everyone with OMS have a tumor?
No. About half of children do—most often neuroblastoma. Many others have non-tumor (post-infectious or idiopathic) OMS. Adults may have paraneoplastic or non-paraneoplastic forms. PMCIf a tumor is removed, does OMS go away?
Removing a tumor helps, but immune therapy is still needed because the immune system has already been activated.How long does treatment last?
Many children receive several months of therapy, sometimes longer, with careful tapers and maintenance to prevent relapses. Plans are individualized.What’s the role of IVIG, steroids, and rituximab?
They calm or reset the immune system from different angles; combinations are common for faster, deeper control. PMCMDPIAre there side effects?
Yes. Infection risk, mood changes, appetite/weight, blood-pressure changes, and others. Teams monitor closely and adjust.Will my child walk and talk normally again?
Many improve greatly with prompt, aggressive therapy plus rehab, but some children have lingering attention or learning issues; ongoing supports help. PMCCan OMS come back?
Yes, relapses can happen, often after infections or during steroid tapers. Maintenance therapy and quick treatment of flares help reduce this.Is OMS contagious?
No. The condition is immune-mediated; it’s not spread from person to person.What tests are done?
Brain MRI (often normal or subtle), spinal fluid studies, blood tests, urine catecholamines, and scans to look for neuroblastoma (ultrasound/MRI/MIBG) in children. PMCAre there specific antibodies doctors can test for?
Sometimes, but many people with OMS have negative antibody tests. Diagnosis relies on the clinical picture and ruling out other diseases. PMCCan adults get OMS after infections like COVID-19?
Rarely, yes—there are case reports. Doctors still rule out cancer triggers and treat the immune inflammation. PMCDo vaccines cause OMS?
OMS is not a known vaccine-caused disorder. Teams plan safe vaccine timing around immunosuppression to protect from infections that can trigger flares.What is the long-term outlook?
With modern, combination immunotherapy and strong rehab, many patients do well. A portion will need educational and behavioral supports long-term, which should be started early. PMC
Disclaimer: Each person’s journey is unique, treatment plan, life style, food habit, hormonal condition, immune system, chronic disease condition, geological location, weather and previous medical history is also unique. So always seek the best advice from a qualified medical professional or health care provider before trying any treatments to ensure to find out the best plan for you. This guide is for general information and educational purposes only. Regular check-ups and awareness can help to manage and prevent complications associated with these diseases conditions. If you or someone are suffering from this disease condition bookmark this website or share with someone who might find it useful! Boost your knowledge and stay ahead in your health journey. We always try to ensure that the content is regularly updated to reflect the latest medical research and treatment options. Thank you for giving your valuable time to read the article.
The article is written by Team RxHarun and reviewed by the Rx Editorial Board Members
Last Updated: August 18, 2025.
