Inflammatory Brain Disorders Clinic
What is the Inflammatory Brain Disorders Clinic?
Seattle Children's Inflammatory Brain Disorders Clinic gives expert care to children who have inflammation in their brain that causes problems with their thinking, learning and mental health. Some children also have seizures, weakness or trouble with movement or coordination. Children may have changes in their hearing, vision, pooping and peeing (bowel and bladder function) or ability to touch, taste and smell.
Most often this happens because the child’s immune system attacks their brain (autoimmune). It is not known what triggers this. In some children, the immune system may be reacting to an injury or exposure to pathogens or other harmful substances. In other children, the cause may be changes (variants) in the genes that affect how the immune system works.
More and more, doctors are finding that children with severe problems related to thinking, learning and mental health have inflammatory brain disorders. The conditions also are called neuroinflammatory brain disorders.
What's special about the Inflammatory Brain Disorders Clinic at Seattle Children's?
In a single visit, your child will see specialists in both neurosciences and rheumatology. Having everyone in the same room at the same time means you can play an active role in your child’s care and talk with the specialists. These team visits save your family travel time and allow treatment to start sooner.
We care for your child from birth to 21. Our goal is to give your child the best chance of a long and healthy life.
If you would like an appointment or a second opinion, ask your child’s primary care provider or specialist to refer you to our Inflammatory Brain Disorders Clinic. The clinic is part of our Neurosciences Center and our Rheumatology Program.
Providers, see how to refer a patient.
The expertise to give your child complete care
- To give the best care possible, we combine the expertise of a neurologist and rheumatologist to diagnose and treat your child.
- Accurate diagnosis is the first step to effective treatment. Our team will take a full medical history, examine your child carefully and order tests needed to understand their condition.
- We offer a full range of treatments. These include immunotherapies such as steroids, intravenous immunoglobulins, disease-modifying antirheumatic drugs (DMARDs), biological drugs and plasmapheresis.
- We also help manage symptoms such as headache and seizures.
- As part of a world-class academic pediatric hospital, we have access to specialists in many fields of medicine. As needed, we refer your child to neuropsychology, occupational therapy, physical therapy and speech and language services.
Support for your whole family
- Having a child with an inflammatory brain disorder can be stressful for the whole family. From first visit to follow-up, our team will work with you to give your child seamless care.
- We help you fully understand your child’s condition and support you in making choices that are right for your family.
- Seattle Children’s serves children and families from around the Northwest and beyond. We can help with financial counseling, education, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.
Conditions We Treat
We treat babies, children, teens and young adults with a broad range of inflammatory brain disorders, such as:
- Autoimmune encephalitis
- Neuro-Behcet’s disease
- MOG antibody-associated diseases
- Neuropsychiatric systemic lupus erythematosus (NP-SLE)
- Genetic inflammatory diseases that affect the nervous system, such as Aicardi-Goutieres syndrome (AGS)
Conditions We Do Not Treat
We do not currently see patients with:
- PANDA (pediatric autoimmune neuropsychiatric disorders associated with streptococcus infections)
- PANS (pediatric acute-onset neuropsychiatric syndrome)
Treatment for those conditions includes psychiatric care, which our clinic does not offer at this time.
Services We Offer
Our diagnostic services include:
- MRI to get high-quality pictures inside your child’s body
- EEG to check the electrical activity in your child’s brain
- Lumbar punctures to check your child’s cerebrospinal fluid
- Blood tests to check for signs of an autoimmune problem
Treatments for inflammatory brain disorders
We offer a full range of treatments for inflammatory brain disorders. Our immunotherapies include:
- Intravenous immunoglobulins (IVIGs)
- Corticosteroids given by mouth or IV
- Disease-modifying antirheumatic drugs (DMARDs)
- Biological drugs such as rituximab
Coordination with other specialists
As needed, we coordinate with other Seattle Children’s specialists, such as:
- Neuropsychologists to assess how your child’s brain is developing and working and to recommend ways to improve their learning and behavior.
- Physical therapists (PTs) to improve your child’s strength, balance and coordination. If needed, PTs will teach your child to use equipment like crutches or a wheelchair.
- Occupational therapists (OTs) to help your child build strength and coordination to do daily tasks like dressing, bathing, eating, playing and school activities.
- Speech and language pathologists (SLPs) to check how well your child can speak, understand, read, write and swallow. SLPs help your child communicate and swallow better.
Inflammatory Brain Disorders Clinic Team
What to Expect
Before your appointment
- Send us records. Ask your child’s primary care provider to fax (206-985-3121) us records about your child’s overall health and growth.
- Provide test results related to your child’s condition. Most of the time, the doctor who refers you to Seattle Children’s will send copies of imaging studies, lab results and other helpful information. Ask your doctor to send them or to give you a CD to bring with you.
- Learn more about what to do before your appointment.
What happens during a clinic visit?
- You and your child will meet with a neurologist and rheumatologist.
- They will ask about your child’s health history and examine your child.
- We may need to get a sample of your child’s blood or cerebrospinal fluid for testing.
- We may take photos of your child or pictures of inside your child’s body (imaging studies).
- Some tests or visits with other specialists may need to be scheduled for another day.
- Please ask us all your questions. We will do our best to answer them and give you the information you need.
How long is a clinic visit?
- The first visit takes about 90 minutes.
- It will be longer if your child has imaging studies or sees other specialists.
What to bring
- A CD with imaging studies and test results related to your child’s condition, if your primary care provider has not sent them already.
- School records such as psychoeducational testing or individualized education plan (IEP), if you have them.
- Medicines or a list of them. Include nonprescription items like vitamins. Include the name, the amount you give (dose) and instructions.
- Forms you need to have signed by our providers, like forms for school.
- Snacks for your child in case the appointment lasts longer than expected. Food is also available from the cafeteria at the Seattle hospital campus.
- Books, small toys or tablets for your child to play with during their visit.
After the appointment
- Before you leave, we will give you information about what will happen next.
- Each provider who sees your child will write notes for your child’s medical chart. We will send a copy to your child’s primary care provider.
- If you have questions between clinic visits, you can call the Rheumatology nurse at 206-987-2000 or the Neurosciences nurse at 206-987-2078.
- If your child needs follow-up visits, you can schedule on your way out or call 206-987-2000 later.
How will we find out about test results?
- If test results are not ready until after your clinic visit, we will call you or discuss them in person at a later clinic visit.
- If you have a MyChart account, your results will be added to your child’s medical record. You can view it by logging in.
What if I need to cancel or reschedule?
If you would like an appointment or a second opinion from our Inflammatory Brain Disorders team, ask your child’s primary care provider or specialist to refer you.
Providers, see how to refer a patient.
Scheduling an appointment
- How to schedule an appointment at Seattle Children’s.
- Learn about resources related to Neurosciences and Rheumatology. These include useful links, videos and recommended reading for you and your family.