My son was finally diagnosed with acute flaccid myelitis, now I need more answers

My son was finally diagnosed with acute flaccid myelitis, now I need more answers https://i2.wp.com/www.eresviral.com/wp-content/uploads/2018/10/Mi-hijo-finalmente-fue-diagnosticado-con-mielitis-fláccida-aguda-ahora-necesito-más-respuestas.jpg?fit=195%2C146&ssl=1

My son was finally diagnosed with acute flaccid myelitis, now I need more answers









Editor's Note: This essay is a first-hand account written by Amber Allen, Cooper's mother.



It was August 7 and we were about to leave for our last family summer trip. When my husband and I finished packing the car for a family trip, our 13-year-old son, Cooper, complained of a headache and neck pain. I was lethargic and had a fever.



"It must be falling with something," I thought. Nothing to justify canceling our plans, I calmed down.



After all, with 15 years of breeding Under our belts and five children, we had experienced fevers and illnesses more times than we could count.





Amber Allen
Amber Allen's son, Cooper, was finally diagnosed with acute flaccid myelitis.

Cooper slept most of the trip to Utah, but his symptoms worsened the next day. The fever continued and he began to vomit, he was extremely pale and weak. I felt a clear intuition that something was not right, so I searched the Internet for "fever and stiff neck" and discovered that meningitis was a possible culprit. We take Cooper to the emergency room.



Cooper received fluids intravenously and doctors performed laboratory tests, including nasal and throat swabs, a chest x-ray and blood cultures. As a precaution, they also gave him a round of antibiotics.



Hours later, she was diagnosed with viral meningitis. That was certainly alarming, but doctors know a lot about viral meningitis. Cooper would be fine.



They said keep him hydrated, encourage him to rest and give him Zofran for nausea. They said that the virus would follow its course and that it would improve soon.



The next day proved otherwise. Cooper woke up unable to move his left arm. We explained it away, thinking maybe he was numb because he was sleeping badly. Hours later, after a warm compress did not work, we returned to the emergency room.



This time, they ordered an MRI. Before we knew it, he was transferred and admitted to the nearest children's hospital. And for the first time during this test, worry and fear crept into my heart.



Later that day, we learned that Cooper's MRI revealed inflammation and trauma to the gray matter of his spinal cord. This news was particularly terrifying, since I am familiar with spinal cord injuries and paralysis. Even so, I was reassured, Cooper was not hurt, he just got sick. Surely he would recover.



With each day that passed in the hospital, the tranquility diminished. The doctors performed the same neurological tests again and again: raise your arm, lift in this way, push that way.





Amber Allen
Amber Allen's son, Cooper, was finally diagnosed with acute flaccid myelitis.

My heart broke when I realized that, even though my son Health He was improving, he still could not lift his left arm.



The explanations of the neurology team are now blurred, but some sentences stand out. Something about a virus that attacks your spinal cord, and maybe your body tries to produce antibodies to fight the virus, but, paradoxically, it increases inflammation and damage.



I'm not even sure what our expectations were when they gave us these explanations, and soon, there was nothing else the hospital could do for Cooper, so we were discharged with instructions to follow up with our pediatrician. Relieved to have taken him out of the hospital, we returned home to Colorado.



The next day, any idea of ​​returning to "normal life" while Cooper was recovering was shattered when our pediatrician recommended that we go directly to Children's Hospital of Colorado, where infectious disease specialists could diagnose Cooper and administer a treatment.



I was hoping we could get more information, or even a diagnosis, but something about the vague urgency of our pediatrician and the somber tone diminished that hope.



My fears and instincts were confirmed when, after four days in the hospital, where many doctors collaborated in an effort to help, Cooper was diagnosed with acute flaccid myelitis. This horrible disease had a name. We learned that AFM is a new disease without a cure and that its prognosis has many variables, so it is not clear.



The relief of having a diagnosis paled in comparison to the new and overwhelming questions that flooded my mind. Cooper received one of the only treatment options available at the time, and what doctors said was the best option for her case: intravenous infusions of immunoglobulin or IVIG.



Then we asked about other options we had heard about: Plasmapharesis and Prozac. Our neurologist openly shared that the studies have shown inconclusive results and, with the research underway, it is difficult to say what is definitely working for each case. IVIG seemed to be the best option for Cooper.



His tired body was tormented by storms during the hour-long infusions. I watched him helplessly as he endured the anguished sleep: throwing his body around the bed, screaming indistinctly, gritting his teeth. I was completely inconsolable.



With our new membership in the rare diseases club, the time feels like it has stopped. The unknown can invoke hopelessness if you allow it. The wait is simply agonizing. It feels as if you are not doing anything. Waiting in the emergency room, waiting for the medical records to be transferred, waiting for an IV, waiting for the results of the tests, waiting for a diagnosis, waiting for an investigation, waiting for the repair of the nerves. Waiting for what follows.





Amber Allen
Amber Allen's son, Cooper, was finally diagnosed with acute flaccid myelitis.

Today, Cooper is two months after the start, with a long recovery ahead, a recovery in which we are not sure what to expect. Initially he participated in occupational therapy twice a week. But after a follow-up with neurology, an appointment with his rehabilitation doctor and, most useful of all, with the guidance of other AFM families that we found on Facebook, he was sent to the Kennedy Krueger Institute in Baltimore, where he spent two weeks. Once there, her occupational therapist formulated a program at home, which we now implement daily. Cooper will also continue with formal occupational therapy.



Some days, the time and effort that invests in stretching, strengthening and electronic stimulation, among other steps, is terrible. It feels like there is no guarantee that it will make a difference. But then, hope comes back, I get rid of it and I continue looking for options. Are there supplements that can help? Can I access specialized treatment? Are nerve transfers an option?



Every day I thank God that Cooper is positive, undaunted and resilient. His incredible brain has learned to compensate for muscles denervated or with deep deficits. A true warrior, he has given AFM very few of his tears and his positive attitude has been a source of strength for me.



However, I want answers. I want a cure I want this to never happen to another child. I count on my blessings that Cooper is healthy and, compared to other cases, slightly affected.



But I want my confident and athletic child to be able to fight again, swim again. I want him to run with pride, both arms swinging. I want him to be free from physical limitations, free from insecurities about what he can and can not do.



It is possible that AFM will not allow you to recover these things, but we will do everything in our power to shine in the dark.

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