By Simon Wesson, UK Regional Delegate for The MOG Project · 7-minute read
Caring for a child with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) brings challenges that reach far beyond medical appointments and treatment plans. The emotional weight and mental load can be heavy: uncertainty, fear of relapse, balancing family dynamics and supporting a child through a chronic condition, all while trying to keep some sense of normalcy. It can leave parents and families feeling exhausted, anxious and overwhelmed. This is true whether your child has had a single attack (monophasic MOGAD) or has relapsed.
As a parent of a child with MOGAD myself, I was honored to talk with two experts about this very issue. Dr. Kelly Jones is a pediatric neuropsychologist at Kennedy Krieger Institute and an assistant professor at Johns Hopkins Medicine. Dr. Haiwen Chen is a pediatric neurologist at Johns Hopkins Medicine. We met online for an international catch-up.
I wanted to ask them the questions my own family has faced, as well as the ones I hear from other parents caring for a child with MOGAD.
Jump to: How it affects parents · Grounding exercises · Coping with exhaustion · Worry or burnout? · Grief · Siblings · School
Q: What do we know about the common mental health symptoms of parents who care for a child who suddenly becomes unwell with a condition like MOGAD?
A: We think about this in two phases. First, the acute phase. The time right after diagnosis is incredibly stressful and disorienting for the entire family. There’s a constant stream of specialists coming in and out, which can create confusion, long-lasting trauma and vivid memories for years.
The second phase begins with the diagnosis and leads into ongoing care and the transition to a new way of life. Getting to the right diagnosis can be frustrating for many parents. Then the move from acute care to a lower level of care can feel quite jarring. You go from having doctors around constantly to suddenly having much more independence and breathing room, which can actually feel unsettling.
From there, common challenges we see include:
- Self-care neglect. You can’t take care of your child well if you’re not taking care of yourself, but parents often forget this. Finding even small pockets of time each week just for yourself is really important.
- Fear of recurrence and constant vigilance. Not knowing whether another attack will happen creates ongoing anxiety and stress. Younger children especially can’t always tell you when something’s wrong, which forces parents into exhausting watchfulness.
- Loss of control. It’s really hard when you feel like you don’t have control over a situation.
To help with these, we recommend finding coping strategies. Try to find something each day that brings you happiness. Reducing the mental space the disease takes up is crucial for your well-being and your ability to care for your child.
Q: When it comes to “phase one,” what quick, practical grounding exercises can parents use during high-stress medical moments or critical situations?
A: During high-stress or critical medical moments, it can be hard for parents to stay in the moment and not assume the worst. They may be thinking several steps ahead and wanting to solve every possible problem at once. In these situations, grounding strategies can help shift your focus away from stress and back to the present moment. Some quick (but not always easy!) strategies include:
- Identify the immediate next step and what you can control right now.
- Focus on the facts of what is happening right now (for example, “My child is being evaluated, we are waiting on results, they have a treatment team”). Try not to predict what may happen in the future (for example, “What if this is a relapse?”).
- Take slow, deep breaths, such as box breathing.
- Name things around you to bring yourself back to the present moment. A common technique is to name five things you can see, four things you can touch or feel, three things you can hear, two things you can smell and one thing you can taste.
- Repeat a grounding phrase to yourself, such as “I can handle this one step at a time.”
Q: Now on to life after diagnosis. What strategies can help parents cope with the physical and emotional exhaustion of caring for a child with MOGAD and everything that comes with it?
A: Many parents feel guilty taking breaks or focusing on their own self-care. The analogy may be overused, but it remains true: “You have to put on your own oxygen mask before helping others.” Caring for yourself is not separate from caring for your child. It’s an important part of it.
- Give yourself permission to accept help. You don’t have to do everything on your own.
- Build a support team. Many family members and friends want to help but aren’t sure how. Consider asking for specific kinds of support: school pickup, childcare for siblings, meals, rides to appointments, or help with paperwork or insurance tasks.
- Make time for yourself each week. Schedule at least one activity that is just for you: exercise, time with friends, a hobby, reading a book, or simply enjoying a few uninterrupted minutes of quiet.
- Prepare for uncertainty without living in it. One of the hardest things for parents to manage is the uncertainty of relapses. Having a relapse action plan can help you feel more prepared if symptoms do arise. Know which symptoms warrant a call to the doctor and which need urgent medical attention.
- Focus on what is happening today. Try not to jump to “what if” scenarios. Staying grounded in the present moment can help reduce anxiety about the future.
- Consider mental health support before you are in crisis. Therapy can be preventive. It can give you a space to process emotions, learn coping strategies and build resilience.
Q: To know when you might need that mental health support, how can parents tell the difference between normal parental worry and clinical anxiety or burnout?
A: Worry is a very normal part of parenting, especially for parents of children with a chronic illness. When worry starts to take up so much mental space and emotional energy that it interferes with day-to-day life, that can be a sign that anxiety or caregiver burnout is developing and that more support could help. Some signs include:
- Changes in sleep (sleeping too much or not being able to sleep)
- Increased fatigue
- Increased irritability or less patience
- Difficulty concentrating on work or home tasks
- Feeling emotionally or physically exhausted
- Loss of interest in activities you used to enjoy
- Pulling away from friends or other support systems
If you notice these signs in yourself, talk with your own doctor or a mental health professional. If you or someone in your family is in crisis, call or text 988 to reach the 988 Suicide & Crisis Lifeline in the US, or contact your local emergency services.
Q: When MOGAD symptoms change a child’s physical mobility, mental capability or personality, it must be common for parents to feel a sense of grief, no matter how guilty they feel about it. Is there any advice for dealing with this?
A: Yes, it is common. This comes up quite often with parents. There’s a concept called ambiguous grief: it’s not the loss of your child, but the child in front of you is not the child you had before.
That’s really hard for parents to navigate, along with everything else that comes with it. It’s OK to feel this way, even if you feel guilty about it. These feelings are valid.
Q: Do families run into problems with the family dynamic when a child has a condition like MOGAD? Is there a risk that siblings may feel neglected, and if so, how can families make adjustments?
A: Yes, absolutely. It can be hard for parents not to organize everyone’s lives around one child’s condition. A few things can help:
- Share age-appropriate information with your child and their siblings. Child life specialists can be very helpful with this. If it’s not talked about, children may get the message that it shouldn’t be brought up. They may then fill in the gaps with their own ideas and expectations, which may not be accurate.
- Protect one-on-one time with your other children.
- Help siblings keep their own identity, and celebrate their strengths and achievements.
- Keep predictable routines. Normalcy helps everyone in the family.
- Make room for “normal kid things.” It’s important for your child and their siblings to keep doing them.
Q: How can parents bring their child’s school into supporting their mental health needs?
A: We encourage families to identify a trusted adult in the school building. This could be a counselor, nurse, coach or teacher. Many children won’t seek out support on their own, so we recommend consistent, regularly scheduled check-ins with that staff member.
The MOG Project (in partnership with the SRNA) also created a Fact Sheet for Educators that parents can provide to their child’s teachers. It briefly explains MOGAD, its symptoms and treatments, along with a list of classroom accommodations and learning accommodations to consider.
This information is for educational purposes only and is not medical advice. Always talk with your own healthcare team about diagnosis and treatment decisions.
