[58M] Teenage Son with Severe Anxiety, Tics, and Movement Disorders Post-Strep Infection

Patient Description

A 58-year-old male reports that his teenage son has been experiencing severe anxiety, muscle spasms, tremors, and episodes of rage for the past 6 years, following a streptococcus infection. The anxiety builds up to non-epileptic seizures, occurring multiple times a day, and is accompanied by serious intrusive thoughts. Stressful situations trigger these seizures, which require medication to stop. The condition has significantly impacted the son's daily life, preventing school attendance and requiring constant attention. The son exhibits violent movements, including opisthotonus, dystonia, tonic/clonic movements, decorticate posturing, chorea, and severe tics, which are currently moderate. Despite the intensity, no injuries have been sustained from these tics. He also bangs his head against various surfaces, causing damage to the home. Episodes of intense rage lasted for 4 years but ceased 2 years ago after treatment with antibiotics and IVIG. He has EDS (Ehlers-Danlos Syndrome) and Dysautonomia, with suspected PANDAS or sero-negative autoimmune encephalitis. The condition worsens with each illness, and cognitive changes such as memory loss and difficulty concentrating are noted. There is no family history of autoimmune disorders or neurological conditions, but some doctors believe he has an autoimmune disorder. The son's condition started shortly after receiving an HPV vaccine, and he has not received all vaccinations, including the flu shot and COVID-19 vaccine. He has an adverse reaction to propofol, causing psychotic rage. The father has a history of headaches for 40 years and is currently experiencing a 5-day migraine. He has no allergies and does not take any medications. His wife has severe MS.

Arora's Assessment

What might be happening

It sounds like your son is experiencing a complex set of symptoms that could be related to multiple underlying conditions. Here are some possibilities:

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

Rationale: PANDAS is a condition that can occur after a streptococcal infection and is characterized by sudden onset of tics, movement disorders, anxiety, rage, and OCD. Your son's symptoms started after a streptococcal infection and worsen with illness, which aligns with PANDAS.
Typical Treatments: Treatment often includes antibiotics to address the underlying infection and immunomodulatory therapies like IVIG (Intravenous Immunoglobulin) to reduce autoimmune activity. Cognitive-behavioral therapy (CBT) and medications to manage symptoms may also be recommended.

Autoimmune Encephalitis

Rationale: Autoimmune encephalitis is a condition where the immune system attacks the brain, leading to a variety of neurological and psychiatric symptoms, including movement disorders, anxiety, and cognitive changes. The fact that your son's symptoms include severe tics, dystonia, and cognitive changes could suggest this condition.
Typical Treatments: Treatment usually involves immunotherapy, such as steroids, IVIG, or plasmapheresis, to reduce inflammation and immune activity. Long-term immunosuppressive medications may also be used.

Ehlers-Danlos Syndrome (EDS) and Dysautonomia

Rationale: EDS is a connective tissue disorder that can cause a range of symptoms, including joint hypermobility and skin elasticity. Dysautonomia involves dysfunction of the autonomic nervous system, which can lead to symptoms like severe anxiety and movement disorders. These conditions could be contributing to or exacerbating his symptoms.
Typical Treatments: Management of EDS often includes physical therapy, pain management, and lifestyle modifications. Dysautonomia treatment may involve medications to stabilize blood pressure and heart rate, as well as lifestyle changes to manage symptoms.

What you can do

For Severe Anxiety and Non-Epileptic Seizures

Seek Medical Attention: Given the severity of your son's symptoms, it's crucial to consult with a neurologist or a specialist in pediatric autoimmune disorders. They can provide a comprehensive evaluation and recommend appropriate treatments.
Medication Management: Continue using prescribed medications to manage his seizures and anxiety. Ensure you follow up with his healthcare provider to adjust medications as needed.
Therapy: Consider cognitive-behavioral therapy (CBT) to help manage anxiety and intrusive thoughts. A mental health professional can provide strategies to cope with stress and anxiety triggers.

For Tics and Movement Disorders

Consult a Specialist: A neurologist or movement disorder specialist can provide targeted treatments for his tics and movement disorders. This may include medications or therapies to reduce the severity of tics.
Safety Measures: Implement safety measures at home to prevent injuries from tics and head banging. This could include padding walls and floors and using protective headgear if recommended by his healthcare provider.

For Cognitive Changes

Cognitive Rehabilitation: Work with a neuropsychologist or occupational therapist to develop strategies to improve memory and concentration. Cognitive rehabilitation can help manage cognitive changes and improve daily functioning.

For Overall Management

Track Symptoms: Use MDandMe to journal his symptoms, track progress, and get insights. This can help you and his healthcare providers understand patterns and triggers, and adjust treatments accordingly.
Support Network: Seek support from family, friends, or support groups for caregivers of children with complex medical conditions. This can provide emotional support and practical advice.

What you should look out for

Given the complexity and severity of your son's symptoms, it's important to seek medical care as soon as possible. Reasons to seek care even more urgently include:

Worsening Seizures: If his seizures become more frequent or severe, seek immediate medical attention.
New or Worsening Symptoms: Any new or worsening symptoms, such as changes in consciousness, severe headaches, or new movement disorders, should be evaluated by a healthcare provider.
Injuries: If he sustains any injuries from his tics or head banging, seek medical care to address and prevent further harm.

Remember, while I can provide information and suggestions, it's essential to consult with real healthcare professionals to receive a formal diagnosis and appropriate treatment.