Behavior changes in children with myelin oligodendrocyte glycoprotein antibody disease (MOGAD) can mean different things. Sometimes a child who is suddenly irritable or distracted needs to be seen quickly. Sometimes they are still working through a frightening hospital stay. And sometimes the whole family needs support.
At The MOG Project’s MOGAD Patient Summit 2026 in Baltimore, a parent watching online asked about these changes. Two pediatric neurologists from Johns Hopkins Medicine answered: Brenda Banwell, MD, director of the Department of Pediatrics at Johns Hopkins Medicine, and Haiwen Chen, MD, PhD, assistant professor of neurology and pediatrics. MOG Project Champion Dana Yates moderated the online questions.
Watch: Dr. Chen and Dr. Banwell on behavior changes in children with MOGAD
Video length: 5 minutes, 33 seconds. The full transcript is below.
Key takeaways
Here is what Dr. Banwell and Dr. Chen want families to know about behavior changes in children with MOGAD:
- Dramatic changes need a prompt check. Growing irritability or changes in alertness can signal new inflammation. Everyday ups and downs are different.
- Recovery takes time. After a hospital stay, children may need help processing what happened, even once the illness is stable.
- Extra support helps. Neuropsychology, behavioral psychology, neurocognitive testing and school specialists can all help with recovery and the return to school.
- Parents need care, too. Bringing back normal rules at home and getting support for the whole family helps children heal.
When behavior changes in Children with MOGAD need a prompt check
Dr. Chen explained that acute disseminated encephalomyelitis (ADEM) and encephalopathy can bring progressive irritability and changes in consciousness. These changes are usually much more dramatic than the normal day-to-day ups and downs of childhood.
When a child’s behavior is changing in that way, the care team may want to see them sooner. They may also consider a repeat MRI to look for new lesions or signs of inflammation. “If you have concerns, this is why we’re here,” Dr. Chen said. Together, families and doctors decide whether a change needs urgent evaluation or can be watched over time.
If you are worried about sudden or worsening changes in your child’s behavior or alertness, contact your child’s neurologist or care team right away.
Healing after a hospital stay
An acute illness and a hospital stay can be traumatic for a child. Dr. Chen noted that the weeks and months after discharge are a time of adjustment, even when the illness has stabilized and a new attack is not a concern.
If a child is still struggling with adjustment or school weeks to months later, the care team may recommend:
- A formal neurocognitive evaluation
- Support from neuropsychology or behavioral psychology
- A psychologist who helps young patients process a medical diagnosis and the emotional trauma of a hospital stay
- School specialists who advocate for accommodations as your child returns to school
Not sure what to ask? Our Questions for Your Doctor guide can help you prepare for your child’s next appointment.
Why the whole family's recovery matters
Behavior changes in children with MOGAD can also reflect what the whole family is going through. Dr. Banwell encourages families to pause when a child’s behavior changes and ask what is happening at home. After a frightening hospital stay, many parents tell her they no longer know how to keep regular rules at home. Children notice when the rules suddenly change, and it can make them feel that something is wrong. Bringing back your normal home rules and expectations is an important part of recovery.
Children also notice when their parents are sad, anxious or worried, and their own distress can rise in response. That is why Dr. Banwell urges parents to get support for themselves too.
Just as we talk about emotional help for our kids, we need emotional help for our families, because a healthy family recovers together.
A change in behavior is often a child’s emotional white flag, she explained: their way of saying, “Hey, I’m not okay.” Sometimes the best help is support for everyone in the family.
full transcript
Recorded at the MOGAD Patient Summit 2026 in Baltimore. This transcript has been lightly edited for readability.
Dana Yates [0:00]: We have another question from online. This one is for Dr. Chen. In pediatrics, sometimes we see behavior changes come up as the first sign of a new MOG attack. Even when steroids are not being prescribed to the child, there will be a sudden change in behavior: sometimes irritable, sometimes very distracted in school. Can you talk about what you’re seeing with pediatric patients in that area, and is there any research happening to identify if this is sometimes a precursor to an event?
Dr. Haiwen Chen [0:35]: When we’re talking about irritability and behavioral changes, it’s important to distinguish which signs, as the questioner mentioned, may be precursors to an attack. We talked about this a little bit yesterday. ADEM and encephalopathy can be associated with progressive irritability and changes in consciousness, usually much more dramatic, of course, rather than fluctuating, day-to-day things. If it is going down that kind of route, then I would be more concerned that we need to see them sooner, and maybe consider a repeat MRI to judge if there are new lesions or new signs of inflammation. So acutely, we bring up all of these different symptoms: if you have concerns, this is why we’re here, and we need to discuss whether these concerns are something we need to evaluate very urgently or something where we can take a little time to figure out what’s going on.
The second half, of course, is that following an acute illness and an acute hospitalization, there’s a lot of trauma associated with both of those things. The period after going home, after discharge, dealing with all of those changes, is part of the recovery process. If they had ADEM or something like that to start with, there’s still a period of both adjustment and processing everything that’s happened.
To segue into something I mentioned yesterday, this is a frequent reason why we partner so closely with our colleagues in neuropsychology, behavioral psychology, our psychologists and other supporting providers. If we’re looking out a couple of weeks to months after the initial attack, things have largely stabilized and we’re not concerned about a repeat acute attack, but they’re still having difficulties with adjustment and with functioning in school, these are oftentimes when we may consider a more formal neurocognitive evaluation and refer to some of our psychologists. I think Dr. Jones mentioned yesterday that we have particular psychologists who work with young patients who have gone through medical diagnoses and the emotional trauma of an acute hospitalization and those diagnoses. That can be really helpful in helping them process their emotions and their feelings. This is where all that extra support comes into play. On top of that, we are very lucky to also have school advocacy or school specialists who can help advocate for any accommodations they may need for the transition back to school.
Dr. Brenda Banwell [3:33]: I agree with everything that was just said. The other thing to put in people’s minds: if there’s a major change in behavior, it’s always a good moment to pause and ask what’s going on in the whole family. For lots of families, as we heard so beautifully from the panel yesterday afternoon, it lives in the family, and you have all just shared how much MOGAD lives in your family.
Often I’ll ask parents, “What have you changed as parents after this very frightening experience of your child being in the hospital?” A lot of times I’ll hear, “We don’t know how to have regular rules anymore, because we were so scared. Everything is so different.” So now you have, say, somebody who just had ADEM, and they’re coming home, and their parents aren’t treating them the same because they’re so afraid that the rules go out the window. Kids don’t do well with that. They know something’s not right when things they didn’t get away with before, they’re now allowed to do. So reestablishing your normal home rules and expectations is an important part of recovery.
The other thing, and we also talked about this with our kids: your kids know when you’re sad. They know the minute you’re sad. If you think you’re hiding it from your kids, you are not. Kids pick up on that, and then their emotional distress goes up too. So get help for everybody, and talk it through. As parents, if you’re feeling anxious and worried and sad, and your whole world just got rocked because your healthy little one is not the same as they were, they’re not yet recovered, and you’ve just had the scariest experience of your life, please get help too. Just as we talk about emotional help for our kids, we need emotional help for our families, because a healthy family recovers together. That is often one of the signals when kids’ behavior changes. It’s their emotional white flag: “Hey, I’m not okay.” Sometimes that’s a family dynamic that is better helped by everybody getting a little support.
This information is for educational purposes only and is not medical advice. Always talk with your own healthcare team about diagnosis and treatment decisions.
