Flywheel Mama

Our daughter is doing well. She is not having seizures. She has not lost any skills or language. When she is awake she is completely herself. But there is something I have been sitting with since her initial ADEM episode in August 2025 that is harder to explain, and it sits alongside everything we are still waiting to understand from her six-month MRI. It is not a crisis but it is not nothing either, and I think other ADEM parents watching something similar in their child deserve to hear it described honestly.

What Recovery Actually Looked Like

After her discharge, recovery was not automatic. She attended weekly physical therapy at Learning Fountain in San Ramon to regain her balance and strength on her right side. She had to relearn how to walk properly and build back confidence using both sides of her legs. By the end of 2025 she had gotten through all of that. She was running, doing ballet, talking nonstop, and her neurologist was pleased with where she had landed.

But the fatigue did not go away. Before ADEM she had been moving away from napping the way most kids do at three and a half. After ADEM, she was sleeping two to three hours in the afternoon and sometimes asking to sleep the moment we picked her up from preschool. She would wake up, carry on with the evening, and then sleep again at her normal bedtime. It was not a phase and it was not a bad week. It became the pattern.We are now nine months out from the episode that started all of this and the fatigue is still there.

What Her Neurologist Has Told Us

We brought it up at her follow-up and her neurologist was not dismissive about it. She is not treating the fatigue as a routine recovery marker that will resolve on its own. Given that her six-month MRI showed new white matter lesions and her inflammation markers, her ESR and CRP, are still elevated, her team is tracking the fatigue as part of a larger picture they are actively investigating.

The conditions her neurologist has raised as possibilities include MOGAD and multiple sclerosis. Because her case sits at a specific and complex intersection of the immune system and the nervous system, we have been referred to a pediatric neuroimmunologist for a higher level of specialized evaluation. We do not have a new diagnosis yet, but we are not in a watch-and-wait holding pattern either. Her team is paying close attention and so are we.

How We Live Around It So Far

We do not structure our days around the fatigue. Life does not stop, and it cannot. We have two children and our younger one has his own full schedule, skiing, swimming, piano, and everything else that comes with it. When our older daughter needs to sleep, we do what any family does and figure it out. Sometimes she falls asleep in the car. Sometimes she naps wherever we land. We do not cancel things and we do not clear our afternoons.

What we do is pay attention. If the fatigue feels different, heavier, or comes with anything new, we take note and we tell her doctors. Her care team has asked us to flag any sudden worsening, fatigue alongside new neurological symptoms, or anything that starts interfering with her development. So far none of those things have happened, but we are watching carefully.

We do talk to her about her doctors and why she keeps going back, why she gets blood draws and MRIs, and why she keeps meeting new specialists. She understands enough for her age and we think that is the right call. What we do not do is talk to her about the fatigue or make her feel like falling asleep is something to worry about. She sleeps when she needs to and we let her.

But I notice it every time. Most afternoons I pick her up from preschool and she is asleep before we are out of the parking lot. On the days her brother has swim practice, I sit in the bleachers and watch him in the water while she sleeps on my shoulder for the entire practice. Those are the moments when I think about what might still be going on inside her while she looks completely fine from the outside.

The Part That Is Hard to Explain

Post-ADEM fatigue does not look like illness. It looks like a four-year-old who needs a nap, and because it looks like that it is easy for people outside our household to see it as unremarkable. She is four. Some four-year-olds still nap.

But two to three hours of deep sleep immediately after preschool pickup, day after day, in a child whose inflammation markers are elevated and whose follow-up MRI showed new brain lesions, is not something I can set aside as ordinary. I was there before ADEM and I am here now, and her energy is not the same. No one outside our household would notice that difference, but I notice it every day.

Holding that alongside an open investigation, without a diagnosis and without a timeline, is one of the harder parts of where we are right now.

Our daughter is still the loudest voice in every room she enters. She still has very strong feelings about which shoes go with which dress. She also falls asleep on my shoulder at swim practice most days, and for now that is part of who she is while her team works to figure out what is still going on. We are watching and waiting, and we are letting her rest.

Keep the momentum going,
Flywheel Mama

This post reflects one family’s experience with post-ADEM recovery and is not medical advice. If you have concerns about fatigue or any symptoms following an ADEM diagnosis, please consult your child’s neurologist or healthcare provider.

Frequently Asked Questions

Is fatigue after ADEM normal in children?

It is commonly reported during recovery, and the brain’s healing process does require significant energy. But fatigue can also be a sign that something else is still active, which is why it is worth raising with your child’s care team rather than waiting it out. In our case, our neurologist is tracking it as part of a broader investigation, not just as a standard recovery symptom.

How long does post-ADEM fatigue last?

We cannot answer that yet. Our daughter is nine months out and the fatigue is still present. Her neurologist has not given us a timeline, and given that her case is still under active investigation, that question does not have a simple answer for us right now.

Should I be worried if my child is sleeping more after ADEM?

Increased sleep alone is not automatically cause for alarm, but it is worth telling your child’s neurologist, especially if it is significant, prolonged, or accompanied by elevated inflammation markers or other findings. We would not have flagged our daughter’s fatigue as urgent on its own, but in the context of everything else her team is watching, it matters.

Does post-ADEM fatigue mean the ADEM is coming back?

Not necessarily, and ADEM is typically a one-time event. But when new findings appear on a follow-up MRI alongside ongoing fatigue, the question shifts from whether ADEM is recurring to whether something else may be driving the inflammation. That is the question her team is currently working to answer.

What can I do to help my child with post-ADEM fatigue?

We let her rest when she needs to and we keep her routine as normal as possible. We do not reorganize our lives around the naps, but we do track the pattern and report it to her care team at every appointment. The most useful thing we have done is stay specific when we describe it to her doctors, how long, how often, and what else is happening around it.