Flywheel Mama

Acute Disseminated Encephalomyelitis (ADEM) is a rare, acute autoimmune disorder primarily affecting the central nervous system (CNS), including the brain and spinal cord. When our 3.5-year-old daughter was diagnosed with ADEM in August 2025, we had never heard of this pediatric autoimmune encephalitis condition. What started as a mild fever turned into a frightening two-week journey through two hospital stays before we could bring our daughter home healthy. This is our ADEM recovery story, one we’re sharing to help other families navigating ADEM in toddlers and young children understand what to expect and find hope.​

It all started with a mild fever on a Tuesday afternoon after I picked her up from preschool. She was fine at first, but as we got closer to dinner, she started to doze off. We woke her up to eat, but she only took a few bites and rushed to bed.

We gave her Tylenol to reduce her fever, but the temperature stayed around 100 degrees. We kept her home for the rest of the week, and she seemed to sleep 2-3 hours at a time, only waking up to eat.

As the weekend started, we thought of breaking up her sleeping spell by taking her to ballet class and swim class. She was able to stay awake through the 45 minutes of ballet class and 30-minute swim class. She could follow directions and do her ballet routines, including saltes and going between positions. She was also able to glide and swim on her back during swim class. So nothing seemed wrong then. But as soon as we put her into the car, she’d fall fast asleep into deep REM.

We thought we broke her sleeping spell and took her to school. She hadn’t been feverish for the last 24 hours. Boy, were we wrong. The director called us within 2 hours saying our daughter was having a hard time staying awake in class. We had no choice but to leave work and pick her up.

We took her to see her pediatrician, and he suspected it was a UTI. She had symptoms that mimicked UTI like sleepiness, fever, stomachache, and loss of appetite. We took two pee samples: one was dirty and one was clean. The pediatrician initially saw the dirty one first and prescribed us antibiotics out of precaution. He also asked us to get some outpatient x-rays and blood work to make sure our daughter didn’t have other illnesses.

After seeing the clean pee sample (before we took antibiotics), the x-rays (which were non-remarkable), and bloodwork that showed my daughter was low in sodium along with other red flags, he rushed us to go to the emergency room.

Our First Hospital Stay

Our 3.5-year-old daughter’s first hospital stay began in the emergency room, where she spent almost the entire day being tested for anything the doctors could think of. She had a urine test to check for a UTI and multiple blood draws as the team tried to figure out what was wrong with her. She was so dehydrated that the nurses eventually had to call specialists from the PICU and NICU, bringing in special devices just to find her tiny veins. It was heartbreaking watching so many people try to help and still not have any clear answers.

By the end of that long day, they told us she would need to be admitted. The working diagnosis was severe constipation. They said her belly was full of clumps of stool that needed to come out, and they believed her sleepiness and lack of appetite were all related. The plan was to keep her in the hospital for a few days so they could watch what she ate and give her laxatives to clear everything out.

That first hospital stay lasted four days. When she was discharged, she was still very sleepy, but the doctors reassured us that it was likely all from the constipation. We went home hoping that once her system cleared, our daughter would finally start to feel like herself again.

We went home believing that the laxatives would finally help things move along and that, with time, our daughter would start to feel better. She was still taking the medications as prescribed, but she remained unusually sleepy and not at all like herself.

Two days after discharge, we brought her to her pediatrician for an outpatient follow-up. She slept the entire car ride and was still asleep when we arrived at the office, limp in our arms as we carried her in. The pediatrician took one look at her and at the hospital paperwork and was clearly not comfortable with how things had been handled. It was the first time someone openly said what we had been quietly worrying about: this was not normal, and it was not acceptable to just assume constipation was the whole story.

Our pediatrician told us we needed more answers and urged us to go back to the hospital. That conversation became the turning point between “maybe she just needs time” and “something is seriously wrong, and we have to push for more.”

Our Second Hospital Stay: More Questions Than Answers

When we arrived at the hospital the second time, our daughter was admitted through the ER right away. The pediatric hospitalist examined her and ran a series of balance and brain function tests, checking how she walked, followed instructions, and responded to simple tasks. The team then called in more specialists, including a neurologist and a rheumatologist, to figure out whether something was wrong with her brain or if this could be an autoimmune problem. Even with all those worries in the air, she passed every test with flying colors when she was awake, which only left everyone more confused.

The doctors ordered another round of lab work, this time adding more rare and obscure tests. Once again, we were admitted to the pediatric ward, but there were still no clear answers. They could not justify sending us home because her excessive sleepiness was so concerning, yet every test they ran kept coming back negative. When she was awake, she seemed completely normal, talking, playing, and interacting like herself, so they started testing for conditions like Lyme disease and other rare infections, but each result came back the same: negative.

Finally Looking at Her Brain

Every morning, a team of doctors would circle around our daughter’s bed during rounds, updating us on what they had done and what they planned to do next. One morning, after running through yet another list of normal test results, they told us there was one major thing they still hadn’t checked: her brain. They suggested doing an MRI to see whether something deeper was going on, and we agreed.

She was taken down to the radiology department that same day. Because she was already so drowsy, she didn’t need any medication to help her sleep through the scan. I went with her and watched her lie perfectly still as the machine thumped and whirred around her. I was amazed at how well she did for being only three and a half.

A couple of hours later, the doctors asked me and my husband to sit down so they could go over the results. They explained that both sides of her brain were “lighting up like Christmas lights,” and that her brainstem was also affected. As they followed the images down her neck and spine, it became harder to tell exactly how far the inflammation went. The next step, they said, was to do a spinal tap. They needed to confirm what was causing her profound sleepiness so they could finally start treating her with the right medications.

When the Spinal Tap Went Wrong

The doctors explained that a spinal tap is usually a very common bedside procedure, something they do all the time. Because our daughter was so young, they planned to perform it in the PICU instead of on the regular floor, where there would be more monitoring and support if she needed it. We agreed to move forward the next day, hoping this test would finally give us clear answers.

But nothing went as planned. As they started to give her anesthesia, her body reacted badly. Her vocal cords clamped shut, and suddenly she couldn’t breathe. The team had to stop the spinal tap before it even began and focus entirely on helping her breathe again, putting a mask over her face and working to keep her airway open. What was supposed to be a “routine” procedure turned into more than two terrifying hours of watching a room full of people fight to stabilize our little girl.

Afterward, the anesthesiologist told us that if we ever needed to attempt a spinal tap again, it would have to be done in the operating room, where there were more tools, equipment, and backup available in case her airway closed again. In that moment, my immediate response was no. I couldn’t imagine putting her through that again after seeing how much she struggled and how close things felt to going horribly wrong.

What the Neurologist Suspected

I asked the neurologist what she thought my daughter had. She explained that based on the MRI showing inflammation lighting up both sides of her brain and brainstem, she highly suspected it was ADEM, a one-time autoimmune event where the body attacks the brain after fighting off an infection. There was also a possibility it could be another autoimmune disease, but ADEM was at the top of her list.​

She emphasized that confirming the diagnosis with a spinal tap was crucial. Without it, they couldn’t be certain, and that uncertainty would affect how aggressively and accurately they could treat her. The spinal fluid would help them rule out infections and confirm the autoimmune inflammation. Knowing what we were dealing with could make all the difference in her treatment and recovery.

The Hardest Decision We Had to Make

Some of the doctors empathized with us after the failed spinal tap, but the neurologist and infectious disease doctors strongly disagreed with our decision to stop. They explained that they needed to find out what was causing her symptoms so they could treat her and minimize any further harm. She was already showing signs of neurological damage: one side of her body was noticeably slower, her left leg was dragging, and she had developed Bell’s palsy on the left side of her face. They needed to treat her quickly before things got worse.

My husband and I held our ground at first. But the next day, our own pediatrician called me and told us to reconsider. He explained that while some doctors believe this kind of condition might self-resolve over time, what if our daughter never made it back to 100%? He said that if she were his daughter, he would want answers as soon as possible. He encouraged us to ask the doctors what they would do if this were their own child. No parent would want their kid to be less than what they could be.

That conversation tested everything: our ethics, our emotions, and what we believed was best for our child. My husband spent hours researching the pros and cons. Ultimately, we decided that it was better for her to have the spinal tap than to risk the alternative of not knowing and potentially leaving her worse off. So we agreed to the scheduled spinal tap in the OR. It was one of the most painful, emotional decisions we have ever made.

Treatment and Recovery

After the spinal tap was successfully completed, the medical team started our daughter on IV steroids for four days. The conclusion they reached was that she had somehow been infected by a virus, which her immune system had fought off, but then her immune system became confused and began attacking her brainstem instead. The neurologist felt that she wasn’t recovering as quickly as hoped on the IV steroids alone, so they added IVIG (intravenous immunoglobulin) therapy to speed up her recovery, which was given over five days.​

During the steroid and IVIG treatments, we began to see changes. Our daughter became hungrier and her appetite increased, a known side effect of the medications. Physical therapists came in to help her walk and assess her movement. It turned out that her right leg was actually the one being affected. Instead of the normal single reflex click, she was showing three clicks on her right leg, meaning it was overly sensitive. We also worked with her on mouth and lip exercises to help reduce the noticeable effects of the Bell’s palsy on her face.

After 11 days in the hospital during our second stay, we were finally going home.

Coming Home and Healing

After we were finally discharged, our daughter’s recovery continued at home. She had to stay on oral steroids with a slow taper over the next three months so her body could gradually adjust. Because steroids weaken the immune system, we kept her out of preschool for about two weeks to reduce her exposure to germs and viruses. During that time, our focus was on rest, nutrition, and keeping her world as calm and safe as possible.​

She also started seeing a physical therapist once a week for about three months to help with her walking, balance, and leg sensitivity. She progressed so quickly that she “graduated” from the program earlier than expected. Little by little, the signs of ADEM faded: her gait became steady, her right leg stopped overreacting, and her smile slowly became even again. We know many ADEM families face a much longer and harder road, so we don’t take for granted how fortunate her recovery has been.

Looking Back with Gratitude

Today, our daughter is fully herself again. She can smile evenly, run, climb, and play just as she did before all of this began. There are moments when we almost forget how close we came to a very different outcome, and then something will remind us of those hospital days and sleepless nights, and the gratitude rushes back.

We are especially thankful for our pediatrician, who advocated for her every step of the way. Even though he wasn’t physically in the hospital, he checked in daily with the medical team, asked the hard questions, and pushed for answers when it would have been easier to wait and see. He became our voice when we were overwhelmed and exhausted, and his persistence helped us get to the diagnosis and treatment that changed our daughter’s future.

If you are a parent walking a similar path with ADEM in toddlers or pediatric autoimmune encephalitis, you are not alone. Trust your instincts, ask questions, lean on the doctors who truly listen, and remember that it’s okay to fight for your child, even when you’re scared. Our ADEM recovery story could have ended very differently, and we will always be grateful for the science, the care team, and the people who helped bring our little girl back to herself.​

Keep the momentum going,
Flywheel Mama