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Frequently Asked Questions 

Question:

What should I expect in rehabilitation?

 

Answer:

 

Rehabilitation can start at an inpatient rehabilitation setting, then continue at home. It is important you continue to advocate for your love one as they transition from one setting to another. Keep continuous communication with the rehabilitation team, social services, nurses, doctors, as well as educational specialists and teachers. Although everyone is different, the following is a description of what to expect in rehabilitation when recovering from anti-NMDA attack. anti-NMDAr is the most common type of AE and rehabilitation applies to all types of AE.

General Rehabilitation Management

Recovery from anti-NMDA receptor encephalitis happens in a multistage process that is in reverse from the order of symptom presentation, starting with awakening from coma, and ending with recovery of social behavior and executive functions. This can take several months where typical problems are identified during the inpatient rehabilitation program.

1) Agitation: First-line treatment should consist of non-pharmacological approaches, including placing the patient in a low-stimulation environment, frequent reorientation and reassurance by members of the treatment team; and one-on-one therapy sessions. Use of an enclosure bed can be helpful, as it can allow the patient to move freely in bed in a safe manner. Restraints should be used as a last resort, as it can increase agitation and confusion in these patients. Common medications that can be utilized for treatment of agitation include atypical antipsychotics, anti-epileptics (valproic acid), and sedatives. Use of these medications should be minimized in the rehabilitation setting if possible. Use of the Agitated Behavior Scale is recommended for monitoring and documenting response to different therapies.

2) Sleep-wake cycle disturbance: Patients’ sleep-wake cycles should be monitored by use of a sleep log. Useful medications for regulating the sleep-wake cycle include melatonin, which is a natural supplement; trazadone, an antidepressant that has sleepiness as a major side effect at low doses, and zolpidem, a sedative. In children, we recommend starting with melatonin as it is non-habit forming and with minimal side effects. Medications that can be used to help with wakefulness include amantadine, a dopaminergic agonist that can be safe in children and adults, and modafinil (Provigil®) in adults (mechanism unknown). Modafinil’s use in children for problems with arousal has not been studied.

3) Inattention and impulsivity: Impulsivity, which is the urge to act without thinking, can be part of the clinical picture for anti-NMDA receptor encephalitis. Impulsive actions can result in patient harm if not monitored closely. The mainstay of treatment for impulsivity in children and adults is behavioral management, although methylphenidate and atomoxetine can be added.
Methylphenidate acts as an indirect catecholamine agonist that blocks the dopamine transporter and norepinephrine transporter. Atomoxetine, which is a newer drug for treating disorders of attention with impulsivity, is a selective norepinephrine transporter inhibitor that acts as a non-stimulant medication.

4) Movement disorders: As part of anti-NMDA receptor encephalitis, patients also may develop movement disorders, including spasticity, dystonia, orofacial dyskinesias, and athetosis of the limbs and trunk. Medications that can be used for spasticity and dystoniain adults include baclofen, trihexiphenidyl, tizanidine, and levadopa. In children, baclofen and trihexiphenidyl are common agents used to treat spasticity and dystonia. Use of botulinum toxin has not been
reported for this condition. Chorea is a rapid, uncontrolled, involuntary excessive movement that flows from one body part to another movement that flows from one body part to another (think “dancing fingers”). Athetosis is a slow, writhing and twisting movement that can present in all body areas, including the face. Characteristic facial movements of chorea include nose wrinkling, flitting eye movement, tongue and mouth movements, which is commonly seen in anti-NMDA receptor encephalitis. Treatment of choreathetosis in children includes benzodiazapines, such as clonazepam, diazepam, or clobazam, while anti-epileptics also are effective in treatment of chorea.

Special Considerations for Rehabilitation of Children

If neuro-cognitive deficits are identified, consultation with a neuropsychologist may identify strategies to utilize the child’s strengths to facilitate their ability to learn and perform in the school environment. They may make suggestions to assist the child in learning, including seat placement in the classroom and identifying areas where the child may benefit from one-to-one assistance. Education strategies such as “chunking” the material, giving lectures notes, presenting the material in a novel way, or utilizing different methods to assess mastery of the material, also may be provided. The educational specialist, who typically has some experience in special education, works with the members of the therapy team, along with the patient’s family and school, to identify and plan for any accommodations and support services a child may need to assure a smooth re-entry in the school setting after their inpatient rehabilitation. They assist the school and team with making an individualized educational plan (IEP) for re-entry to school. An IEP takes into consideration the medical condition and its effect on brain functioning, and the need for accommodations based on neuropsychological testing and the clinical examination. Accommodations can be made to assist the child in the school environment, which will allow them to reach their maximal potential. Depending on the child’s needs, they may qualify for physical, occupational, or speech therapies in the school setting, which will be specified in the IEP. As clinically appropriate, the educational specialist will assist the child with schoolwork while they are admitted for inpatient rehabilitation. In pediatric patients with anti-NMDA-receptor encephalitis length of stay in a rehabilitation facility can vary considerably, depending on the severity of deficits and medical complications. In the recent study by Houtrow et al, the length of stay for pediatric patients with anti-NMDA receptor encephalitis varied from two to six weeks. Five out of six patients required ongoing cognitive and speech therapy after inpatient rehabilitation. Of note, there are no studies available describing the rehabilitation course of adults with anti-NMDA receptor encephalitis.

 

REFERENCES: Anti-N-methyl-D-aspartate Receptor Encephalitis: Diagnostic and Treatment Information for the Physiatrist, Winter 2013 Edition of UPMC Ground Rounds by: Angela Garcia, MD Assistant Professor, Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine
Amy Houtrow, MD, PhD, MPH Associate Professor, Departments of Physical Medicine and Rehabilitation and Pediatrics, University of Pittsburgh School of Medicine

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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