Functional Neurological Symptom Disorder (FNSD)

This is a condition in which your child develops distressing symptoms that resemble medical emergencies such as a seizure or stroke. The symptoms may include weakness throughout the arms and legs, numbness, or changes in the ability to talk or walk. The symptoms of FNSD may make it difficult to participate in school.

Symptoms can be disabling but there are no physical abnormality in the brain or nervous system. There are, however, lots of physical and emotional challenges that need to be addressed. Most children recover fully with the help of a treatment team to coordinate various therapies, led by a mental health provider.

While we do not always know what causes FNSD, we do know it disrupts how parts of the brain work together to control movements and process sensory input. The video link below can help explain more.

Unlike brain disorders where we can see physical changes in the brain on imaging studies (like a tumor, or a disease like multiple sclerosis), FNSD is different. It results from an abnormality in how the brain is functioning and coordinating neural networks that support movement and sensation. Examples of this as a normal occurrence is when we feel nervous discomfort in our gut before giving a public speech or when we get more easily startled and jumpy. FNSD symptoms are just as real and are thought to occur when this process is excessive and persistent. It’s important to know the patient is not faking their symptoms.

FNSD is diagnosed after a careful look at your child’s medical history and a physical exam, often from a neurologist (brain doctor). While FNSD is diagnosed based on the symptoms and neurologic examination, sometimes other tests (such as labs or imaging) are done to confirm other diagnoses can be ruled out as the cause of symptoms. These other tests may include:

• Bloodwork
• Brain imaging (CT/MRI) to rule out other causes, if indicated

The diagnosis of FNSD does not come from ruling out all other possibilities. It comes from positive findings that show us evidence that the building blocks of the brain and nervous system are all intact, but it is their coordination that is the problem. Since the diagnosis is based on a provider’s assessment and not based on a lab test or imaging study, you may be tempted to ask for further testing and treatment, but that may do more harm than good. More invasive tests and time away from home in a hospital bed can add to your child’s stress.

People with FNSD often benefit from a psychological assessment. Emotions always play a role in our well-being. Your child may be overwhelmed, but not even be aware of it. Symptoms of anxiety and depression are common in children and teens, and can worsen FNSD symptoms, and potentially cause them to begin with. This assessment also helps your child’s care team better understand your child’s emotions and behaviors, and how they may relate to their family, social, or school environment. It is key to find ways to improve emotional and behavioral functioning in the real world.

The most important first step in treatment is getting the right diagnosis and a thorough understanding about the disorder. Talk to your doctor if you do not feel the diagnosis of FNSD is correct, as it is important for your concerns to be addressed.

Therapy to support the integration of the mind and body is the best approach to help people with FNSD. These therapies support the practice required for relearning physical skills and for regulating emotion. The goal is to train the higher “executive” centers of the brain to regain control over other emotional centers. Your child has a good chance for complete recovery given the right support from their doctors, family, school, and other caregivers.

Because FNSD is likely caused by how parts of the brain “talk” to each other, therapy is focused on treatments that have been shown to help improve brain functioning. Primary therapy approaches include retraining your child to control attention away from symptoms, practicing coping strategies to manage anxiety and distress, and fostering a sense of independence. These include:

• Behavioral therapy—getting back to normal activities, mindfulness, emotion regulation and distress tolerance skills.
• Treating depression, anxiety, or other conditions if they are present (either through evidence-based therapy or medication management).
• Physical therapy, speech therapy, and other therapies to help specific physical symptoms improve by rehabilitating them to work increasingly effectively on their own.
• Parent education on ways to respond to your child that better foster independence and allow for recovery by reducing accommodation. This can be very challenging to do while children are struggling and in distress so supporting parents can also be critical.

It is very important that you:

• Validate your child’s distress and provide hopeful messages of care and recovery.
• Remember that these symptoms are involuntary (something going in their body they cannot control) and real. Do not convey that symptoms are “not real” or that your child is faking. Symptoms may appear to be exaggerated at times or may decrease when your child is distracted. This is out of their control.
• Talk with your child’s healthcare provider if you have doubts about the diagnosis or concerns about how your child’s case is being managed, but do this when your child is not present. It is important that you, your child, and your child’s doctors all be comfortable with this diagnosis. Sharing your doubts about their diagnosis in front of your child may make it harder for them to get better.
• Do not over-accommodate in response to your child’s distress. This includes providing excessive soothing, attention, and support for basic life activities (such as helping them eat, bathe, and communicate). These protective behaviors, while very well-meaning and natural, make FNSD worse. If others keep assisting with functional symptoms, it only makes them stronger and hinders a child’s ability to recover.
• Instead of taking over for them, acknowledge their distress and validate it with your words, “I know you feel shaky and scared right now.” And let them work through it on their own.
• Keep up with normal expectations for activity and behaviors from your child, including going to school or other important family routines.
• Have them learn some new skills from a therapist, such as how to use relaxation techniques, mindfulness practice, and learning to challenge negative thoughts.
• Ask them to come up with some ideas that could help, so that puts some responsibility on them. Helping your child to use their own resources to manage the distress associated with their symptoms will help them feel more capable of being independent.
• Help map out a path to recovery together with your child and their healthcare providers. Your child should know that they have a team to support their recovery and emotional wellbeing.
• Set concrete goals and expectations for your child that are aligned with their own goals (get out of the hospital; get back to school, back on soccer team, etc.).
• Focus on the positive aspects of recovery. This will nurture your child’s motivation to be healthy instead of reinforcing their symptoms. Attention from you can be a powerful tool. It is much better to focus on positives and abilities rather than disabilities.

There will be times when you and your child may feel discouraged. It can be helpful to:

• Reflect any past improvements with your child and, reassure them that they are safely progressing down the path to recovery.
• Discuss any concerns with your child’s doctor or therapist.

Watch this video to better understand FND “What are Functional Neurological Disorders?” youtu.be/w3ij_LuRvKw

Websites

• National Institute of Neurologic Disorders and Stroke
  ninds.nih.gov/health-information/disorders/functional-neurologic-disorder
• FND Hope fndhope.org

Web-based education materials

• Functional Neurological Disorder (FND)
  neurosymptoms.org
• Somatization and the Mind-Body Connection (BC Childrens)
  keltymentalhealth.ca/somatization