Living with inflammatory brain disease

​Living with inflammatory brain disease

Various healthcare professionals may be involved during the diagnostic work-up, treatment and rehabilitation periods. The following is a list of possible people that may help you and your family along this journey:


  1. Neurologist: doctors who have specialized training in diseases that affect the brain, spinal cord and peripheral nerves. As a result, neurologists are often the first specialists involved when your child presents with abnormal neurological symptoms.

  2. Rheumatologist: doctors who have specialized in rheumatology, a subspecialty that has expertise in inflammatory diseases. Examples of conditions that rheumatologists treat include lupus, vasculitis and arthritis. Some rheumatologists are experts in particular subsets of rheumatological conditions, including those that affect the brain. As a result, many of the experts in inflammatory brain disease are in fact, rheumatologists.

  3. Psychiatrist: physicians who have specialized training in conditions that affect the intangible functions of the brain, such as cognition, behavior and emotion. Many inflammatory brain diseases present with abnormal psychiatric or behavioural symptoms. The recovery process itself can also be quite difficult for patients. As a result, psychiatrists are often involved during the initial diagnosis and during the recovery period.

  4. Advanced practice registered nurses (APRN) and nurse practitioners (NP): nurses that have an advanced scope of practice and NPs are nurses that have completed graduate level training in particular specialty. APRNs or NPs who have specialized in brain disease are often your most trusted resource during the recovery process. They have a wealth of hands-on experience and can provide a great deal of support regarding questions about medications and what to expect during rehabilitation.

  5. Rehabilitation therapists: The following rehabilitations specialists all play integral roles in the rehabilitation process. Rehabilitation can take place in an acute care hospital where the child is initially admitted for disease management or a rehabilitation hospital where your child may be transferred following diagnosis. There are paediatric rehabilitation hospitals that actually specialize in the rehabilitation of children with neurological injuries. These are often the best places for children to receive dedicated care and support:

  • Occupational therapist: specialists who are trained to assess and treat difficulties in fine motor, thinking and swallowing skills.
  • Physiotherapist: specialists who are trained to assess and treat changes in gross motor skills, mobility and pain.
  • Speech language therapist: specialists who are trained to assess and treat changes in speech and communication.

Recovery & Relapse

The reported time to clinical recovery is variable and can range anywhere from 2 weeks to 24 months. Intensive rehabilitation is frequently required and many children return back to normal. However, this does not usually occur quickly. While many children appear well in the first several months, parents will notice that full, 100% functional and physical recovery takes much longer. Therefore, patience is a must as the road to recovery can be a long and bumpy one. Frequently reported issues include:

  • Infections, especially of the gastrointestinal tract and respiratory tract
  • Abnormal movements, muscle spasms and muscle weakness
  • Memory loss, emotional outbursts and temper tantrums
  • Seizures

Understandably, the threat of a relapse for some patients is a real and scary one. Although we are capable of ridding the body of autoantibodies after the initial attack, we do not know whether they ever go away completely. Since we do not fully understand what leads to autoantibody production in the first place, it is difficult to predict with certainty whether the antibodies will ever return. Periodic measurements of the number of antibodies in the CSF are the most sensitive method to measure disease progression. However, repetitive lumbar punctures are hardly practical for an adult, let alone a child. Luckily, clinical presentation or blood titres are excellent proxies for CSF titres. It is for this reason that we suggest periodic blood testing alongside clinical monitoring by physicians and family members be used instead.

How will this disease impact my life?

Most families have a lot of questions regarding what their child can and cannot do during recovery and rehabilitation. There are no specific guidelines to follow when it comes to diet, sports or recreational activities since every child is different. However, you know your child best. Once you believe they have recovered enough mobility and understanding, they can return to their normal routine and activities. Nevertheless, these diseases, like other inflammatory brain disorders, do impact a child's life in many ways. For more information, please read the following pages:

Tips from experienced patients and families

The following are tips from parents and children diagnosed with antibody-mediated inflammatory disease:

  • Stay positive: It is important for both patients and families to remain positive. A positive attitude helps tremendously when trying to motivate your child. Improvements happen daily, recognizing and encouraging each step along the way is key.
  • Expect setbacks: the recovery process is not a smooth one, one step forward is usually followed by two steps backwards. Expect difficulties and know that full recovery takes a long time.
  • Be attentive, support and advocate for your child.
    • Remember, if your child is recovering from a coma, they may appear unresponsive, but they are relying on you, as their parent to tend to their needs.
    • Never leave your child alone, always keep your child company. Just your presence makes a big difference.
    • During rehabilitation, be less concerned about actual antibody titres and more attentive to clinical recovery such as level of cognition, sleep patterns, mood and speech improvements.
    • ​As a parent, you know your child best; doctors and nurses depend on you to ensure the most appropriate care.
  • Stay informed: Although it can be an overwhelming task, understanding the disease and what is involved is paramount. Ask questions and seek support.
  • Every patient is different: Remember that every patient is different, so even if your child does not appear to recover as quickly as another child, do not assume this is a bad sign.
  • Talk to your child: Children diagnosed with these conditions express a desire to be included in discussions regarding their care. Make an effort to 'keep them in the loop'. They too have questions about the disease, the treatment and the steps involved in recovery.

Additional resources and support


​Susanne Benseler, MD

Manisha Sickand, MSc, MD Candidate 2015

Marinka Twilt, MD