Diagnosis: Acute Flaccid Myelitis
Marcella’s journey with Acute Flaccid Myelitis started when she was five years old. On the evening of September 3, 2014, she started complaining of neck pain. By the next morning, she had a fever and was vomiting. We took her to the doctor and she was diagnosed with swollen glands and put on antibiotics. The next morning, she woke up with upper arm weakness on her left side. We took her back to the doctor and an x-ray was conducted. The doctor said that the x-ray did not show anything out of the ordinary.
On Saturday, September 6, 2014, we took Marcella to the emergency room at a local hospital because she was now screaming with neck and upper back pain. At the hospital, they conducted a series of tests including blood work, urine analysis, spinal tap, and a CT scan. After the test results came in, they diagnosed her with meningitis and transferred her to Children’s Hospital in New Orleans, LA.
On Sunday, September 7, 2014, the neurology team did an MRI. Once the results came in, the neurologist said that it looked like she may have Transverse Myelitis. She had inflammation in her neck area from C2-C7. From the first MRI, the neurologist told us that her images looked different, like someone with polio. Four days after the onset of her neck pain, she ended up in the PICU because her left lung was becoming weak. By the next morning, the neurology team decided they needed to start intense treatment of plasmapheresis, so they had to put her to sleep to put in a central line to conduct the treatments. Since her left lung was too weak to handle the procedure, she had to be intubated and would remain on a ventilator until her lung would regain strength. Once Marcella woke up from the procedure, she was completely paralyzed. She was given nine days of plasmapheresis and high doses of steroids. The doctors did not see much result. She then did a series of IVIG, which also did not show any improvements.
The doctors knew at that point that they were dealing with something other than Transverse Myelitis. Her bloodwork results showed that she had tested positive for RSV, Rhinovirus, and Enterovirus (hers was not typed). After about three weeks in the PICU, the hospital received a noticed from the CDC warning about children becoming paralyzed after contracting Enterovirus. It wasn’t until mid-October that she was diagnosed with Acute Flaccid Myelitis. She was hospitalized for eleven weeks. Marcella is paralyzed but has use of her right arm. She has movement in her right foot, little movement in her left fingers and toes, and very little neck support. She uses a wheelchair and is ventilator dependent at all times. She attends weekly therapy sessions. She depends on her family for daily activities.
Marcella has nine siblings, so this illness has been a challenge for everyone in our family. We have adjusted to our new lifestyle, and we are extremely grateful that Marcella is still with us today. The whole family helps out in some way to make each day go by as smoothly as possible. Marcella was an active little girl who loved the outdoors playing with her siblings and dancing. She has accepted and adjusted to her new way of life immediately. We do not question “why” this happened. We take one day at a time and thank God for all our blessings.
Marcella is attending school full time for the first time since the onset of her condition two years ago. She is enjoying life as she now knows it. Even though the doctors told us that she would be paralyzed for the rest of her life, we are hopeful that one day she will regain some movement, and hopefully regain strength in her left lung to be able to breathe on her own. The myelife. my hope campaign helps us see that we are not in this alone. We have a family out there with similar experiences.
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