Guest post: Trust me, I am a mother

I never went into medicine to become a better mother. I never became a mother to become a better doctor. But, the two journeys merged in 2013 when I knew something was seriously wrong with my almost six year-old son. My son is like any other boy his age, other than occasional mild irritability that is slightly over the average and incredible creativity. He usually springs out of bed ready to tackle the day, excited about all the projects he is going to do. For about ten days, I noticed that not only was he not interested in any activities, but he was incredibly irritable at even the most minor setbacks. He has always had a high pain threshold, yet we started noticing an increase in his frequency of "got hurt" episodes. There were no focal deficits on physical exam. I sent an email to his teacher asking if she noticed any limitations at school. She said no. I didn't know if I should go to a pediatrician or a psychologist. Then, he developed a minor unprovoked pain in the shin. I jumped on it as now I had a reason to take him to the pediatrician. I reasoned with the pediatrician that given the irritability and mild low grade temps at night time for two days, his shin pain may have been an indicator of something systemic. After an exam, she ordered some blood work and X-rays which came back normal, other than a slightly elevated WBC and platelet count. She told me to trend the fevers and to come back if there was no improvement.

The same night, I noticed a slight temperature and called the on-call doctor. I explained that I was concerned about the low grade temperatures without an obvious source, and that the shin pain might point to a musculoskeletal or neurological issue. She also told us to "trend" the fevers and call her back in the morning. Completed unreassured, we took him to the emergency room. A full day waiting in the emergency room led us again to blood tests that were mildly abnormal but not convincing for any diagnosis. An MRI of the leg was done which was read as normal. I pulled the pediatric ER physician aside and told her my concerns: was there something systemic? As an adult critical care physician, I was not the kind of parent to seek attention unless I was truly concerned. I alerted her that I was concerned regarding the elevated white count and thrombocytosis without an obvious source and even more concerned that the MRI was normal. We were told to "trend" the fever, and if it became more than 101.5, to seek attention. We were also to give scheduled ibuprofen to suppress any synovial inflammation that may be happening in the hip from a viral infection two weeks before. After a dose of ibuprofen, they tested his walking, and said that it was noticeably better, so it must be Transient Synovitis, a diagnosis of exclusion. One caveat to this "give the drug, and see if this gets better, if then, it must be this" argument is that it is absolutely flawed. If the participant knows that "he or she is supposed to get better" then the free will overcomes any pain and of course, he is going to walk better. It may or may not have anything to do with the drug. We walked out of the Emergency Room still concerned.

I continued to give him ibuprofen over the next day. He continued to limp. The ibuprofen suppressed the fever, so now we had an afebrile child who couldn't walk. After no significant improvement, we took him back to the pediatrician office the next day and asked for a neurological exam and, bingo, over the course of a few hours my child developed cerebellar ataxia, clonus, and inability to stand. All of this happened within the time we saw the pediatrician, got him back to the emergency room, and a MRI was scheduled. That night as I sat at the edge of the MRI machine holding his leg, I had never been more frustrated with the fragility of the human body. I loathed hospitals. I never wanted to step foot in the hospital again. The doctor inside of me put the differential diagnosis of "epidural abscess, brain tumor, meningitis, encephalitis" on the list, while the mother inside of me put "something really bad" at the top. While the initial scout films started coming up, my husband, who is a body radiologist subspecialized in MRI, stood by the MRI technician with a solemn look in his eyes  -- one that I had never seen before. As he drew his finger in a vertical line across the computer monitor, the heart of the mother inside of me sank, while the doctor inside of me said, "Wait, that could mean it is not a focal tumor or an epidural abscess, but could it be a diffuse tumor? Maybe, it is meningitis."  With one hand on my child's leg amid the deafening noise from the machine, I kept waving to my husband to see if he could tell me something. He asked me to come outside and knowing my child was already asleep in the machine, I stepped out and could immediately notice the flair abnormality that swept across the spinal cord. As the axial cuts were pouring in, we could see the flair signal lit up like two snake eyes pointing to the diagnosis of Transverse Myelitis, which we knew only held very good prognosis one third of the time. There was no Brain MRI ordered as the ER staff wanted to "focus on one thing at a time," and it  seemed that the spine was the problem. Thankfully, the neuroradiologist who was examining the scout images, and who was about to leave in thirty minutes for the night, noticed the transverse myelitis throughout the spinal cord and asked the technician to add a brain MRI. Within minutes we found her and discussed with her and confirmed the diagnosis of Acute Disseminated Myeloencephalitis with Transverse Myelitis, a disease that occurs in my child's age group, typically after a viral infection or a vaccine.

During the hours in the emergency room, my son went from being able to walk with a limp to being unable to move both legs and becoming tachypneic. Prior to returning to the emergency room from the MRI, I told my husband that knowing the diagnosis, they will for sure want to do a lumbar puncture to rule out active bacterial/viral meningitis and this will of course delay steroid treatment if the lumbar puncture was not done in an expedited manner. We were already in the emergency room for twelve hours by the end of the MRI and given the progressive course of his symptoms, further delay could have caused him to progress into a coma and the risk of hemorrhagic encephalitis existed. Upon return, we asked the team to be present at his bedside, and we made our concerns open to them. The on-call ER physicians were skillful and quickly performed the lumbar puncture. We soon knew that there were no alterations in protein/glucose/gram stain and that we had the right diagnosis. The ER team hung the bag of 600mg of IV solumedrol before we were transferred up to the ICU and every successive day resulted in more return of neurological function. Within five days, we were at home recuperating after this nightmare of an illness. The neurologists repeatedly told us that they have never seen a child with such degree of MRI severity not have the physical signs to reflect the changes; it is likely because we sought attention right in time. The mother inside of me was strong during the five days, and the doctor inside of me was quick to decline any unnecessary blood draws and made sure that he got out that hospital as quickly as possible. For if anyone knows how deadly hospitals can be, it was the doctor inside of me. We were welcomed at home by a supportive community and his return to school and activities was a breeze because of the love and support from family and friends. When I bought my son a couple of youth basketballs to help his recuperation phase, he jumped out of the sofa, ran to me, gave me a big hug and said, "Mommy, how do you know me so well?"

I said, "Trust me, I am a mother."