Our Acute Flaccid Myelitis Story

When we arrived at Boston Children’s Hospital, Noah was examined and his blood was drawn. In the thick of the EV-D68 outbreak, the medical community was on high alert and knew they were racing against the clock to make a diagnosis and start treatment. EV-D68, as you may know, can mask itself as many other illnesses. It’s crucial for someone with this virus to receive treatment as fast as possible. A spinal tap was done at bedside and soon Noah was sedated for an MRI. Once these tests were completed, it was time to wait for the results. Waiting, waiting, waiting…waiting to get answers. Waiting to hear what our future holds. Waiting to see if the day we just had would ever make sense. Waiting to hear if this paralysis would be reversible. We waited.

While we were waiting, we cuddled our baby boy. We held him ever so tightly so he felt comforted in our arms and we were comforted by him. As parents we felt helpless. How could we have not protected him from whatever this is? Every decision, moment, event that happened went through my head. What could possibly cause this? How did we end up here? Was it cancer? EV-D68? Guillain-Barre Syndrome (GBS)? Can it be fixed? We just had to wait for answers.

We had made it through the day in survival mode. My aunt, who was a nurse, was with us, being a third set of ears for us and helping us navigate the nightmare that was unfolding before us. The emergency room physician came in to inform us the possible diagnoses were GBS or a type of myelitis radiculitis caused by EV-D68. A nose swab, stool culture and spinal tap would be sent out for testing to see if EV-D68 was present. These two possibilities were overwhelming and terrifying. What do you hope for? Both were life changing and only time would tell as far as a prognosis. We were told the initial treatment for both illnesses had the same protocol and they would start immediately.

After a 10-hour day in the emergency department, we were moved up to the inpatient neurology floor where we were told our stay might last a few months. How did my six-month old baby who was meeting all his milestones early all of a sudden become paralyzed over night? How did we get here?

We got settled into our room that overlooked the city. Outside life was happening and inside our hospital room (it felt like) time stood still. It was as if we weren’t a part of the world that was going on around us anymore. We were in a nightmare and couldn’t get out. Mitch and I could only fix our eyes on our faith – we clung to it with every fiber of our being.

The overnight physician arrived shortly after we got settled into our room. She explained to us the two types of treatment that would be started. Immunoglobulin therapy (IVIg) and intravenous steroids would be given simultaneously throughout the night. Shortly after the first round of IVIg was started we found out Noah was allergic and it had to be discontinued. He spiked high fevers throughout the night and was unable to continue the treatment because the dose he was receiving was already being given at a very slow pace. Unable to tolerate the IVIg and spiking such high temperatures, the physician came back in to inform us they would monitor him closely, but if he got worse or needed more assistance they would be moving him up to the ICU. Every 15 minutes his vitals were taken and we watched his monitors closely. Night turned to day as the sun came up over the city and the world outside kept on moving. In our world, time continued to stand still.

The start of the second day – a new type of IVIg was administered and thankfully there was no allergic reaction. Noah was able to tolerate the new drug and dosage at an average infusion rate. We met with the inpatient attending and resident who took over Noah’s case while we were there. The radiologist who reviewed Noah’s MRI the previous day wanted another MRI to confirm a possible diagnosis. The second MRI concluded Noah had Acute Flaccid Myelitis (AFM), a subtype of transverse myelitis.

Noah would finish the protocol for the IVIg and continue steroids for another few weeks. When the doctors told us of Noah’s diagnosis, they said since Noah’s paralysis was sudden and medical intervention happened within 24 hours of onset, they caught this early. In the midst of a parent’s worst nightmare, these words were anything but comforting. No one could tell us what Noah’s future would look like and if the paralysis would be permanent, but we were to remain hopeful. Only with time would we truly know the aftermath of AFM. We were told the United States was in the thick of the outbreak and it would be months or longer before we knew how other children recovered from AFM.

Overnight our nurse noticed Noah’s mouth started to slightly droop on one side and the next morning they decided they would place a nasogastric tube (NG-Tube) to avoid pulmonary aspiration. During our first few days, it felt like we continued on a downward spiral. Pretty soon though things started to turn around. We started to see gradual improvement. The turnaround seemed pretty quick for an AFM patient. Noah’s mouth, neck and arms regained their mobility and control. As for the waist down, we watched and waited for any signs of movement.

As the week went on, Noah’s upper body continued to regain control. We constantly watched his lower body for any signs of movement. The NG-tube was removed by the end of the week. Since his upper body was improving daily and the NG-tube was out, they decided that he could go home. As for prognosis, no one knew. Everyone hoped with time healing would occur. After initial treatment of IVIg and steroids, the next step was physical therapy. Typically, an AFM patient would be transferred to a rehab facility but because Noah was only 7 months old (Noah turned 7 months old during our stay), everyone felt it was best to discharge him home and proceed with outpatient physical therapy.

After an eight-day hospital stay, it was time to go home. We couldn’t believe it especially since we had prepared ourselves for a long-term stay. We were more nervous bringing him home than the day he was born. Our lives changed overnight and now it was time to adjust to a new normal.

Once home, it was time to focus on Noah’s recovery. We started outpatient physical therapy at a facility near our home within the first week or two. Slowly and ever so slightly we saw movement coming back. A sign of hope!  After being home a little over a month, we were enrolled with the Northeast Arc – Cape Ann early intervention, a program that provides services to children ages three and under with disabilities and developmental delays. We discontinued our outpatient therapy, because in-home therapy would be provided through the new service. Through the Northeast Arc we were assigned a physical therapist, Dr. Jenna Elie (PT, DPT) who also is our case manager. She initially saw Noah once a week, but quickly started coming twice a week and added a developmental specialist for supplemental physical therapy because of the progress and improvement she saw in Noah every week. Three months into our three sessions a week therapy regiment, Noah was accepted into the aqua therapy program, bringing our weekly sessions up to four.

On top of our weekly therapy sessions, Mitch and I were taught how to work with Noah throughout the day to incorporate therapeutic play in Noah’s daily activities. Each week we saw progress. After consulting with a leading physician in AFM who supported and encouraged an intensive physical therapy regiment, Dr. Elie was quick to bring on board an occupational therapist for more supplemental physical therapy. In Noah’s case, our weekly therapy sessions were continuing to make Noah stronger. Hippotherapy and music therapy were also brought on board in early 2016. Dr. Elie said we have to, “Think outside the box in the treatment plan. After all these children are 1 in 2.7 million, they are unique and their therapy services should be as well”. She couldn’t be more right! We collaborated together advocating for many types of therapy services, which have proven in Noah’s case to be just what he needed in his recovery. Noah is now a year and half post onset and walks with a posterior gait trainer! Noah’s recovery team consists of neurologists, urologist, physiatrist, physical therapists, developmental specialist, occupational therapist, hippo therapist, orthotist, orthopedist, pediatrician, and music therapist. We couldn’t be more grateful to our dedicated team and to Dr. Jenna Elie who helps us advocate and coordinate Noah’s care.