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Living with a Brain Disorder
March 15, 2010

My Nephew and his Brain, Part 1 – Introduction

By Karen Flummerfelt, MS | 2 Comments | Share | Print | Email | Tweet | Like | 1+
Hospital Bed

As a person who believes in full disclosure, I feel that I should say from the outset that I am not a neurologist. I am a microbiologist, and generally speaking, even though I am a science-type of person, I was never very interested in neurology. All that changed, however, when my nephew was born. Well, it didn’t happen exactly the moment he was born; it took a while for us to learn how unique he really was. I guess it is probably best if I start at the beginning.

My nephew was born in August of 2002, and when he was born, he seemed like a normal, healthy baby boy. He did all of the things that newborns are supposed to do like eat, sleep, dirty diapers and keep his parents up all night, and as a couple of months progressed, he started hitting all of his baby milestones like having a little bit of head control and smiling. By the time he was three months, however, he had started having these quirky little movements every now and then, which to us looked like he was constantly being startled by things. My sister and her husband took him to his pediatrician, but she said they were “normal baby movements” and that we shouldn’t worry. We tried to take her advice, but the strange movements continued, and my sister grew concerned enough to take him to the local emergency room.

It was at this emergency room that we started to discover that my nephew wasn’t quite as healthy as we had supposed him to be. The emergency room doctor was very, very good, and he recognized right away that the supposed “normal baby movements” were in fact not normal, and he further surmised that they were neurologically-based. He ordered a CAT-scan and a spinal tap, and after the results came in, he told us the news, or as much as he could tell us based on the limited tests that he had done. From the CAT-scan, it was clear to him that there was something very wrong with my nephew’s brain, and my nephew needed to be admitted to the hospital. The hospital we were at didn’t have a pediatric ward, so the ER doctor arranged for us to be transferred to a nearby hospital for further testing. And it was after we had been transferred and more tests had been run that we found out we had a one-in-a-million baby and it was going to take a lot of doctors and medical care to keep him alive.

Editor’s note: this the first of a four-part series offered by Flummerfelt. For the remainder of this week, each day we will reveal parts two, three, and four.

Karen Flummerfelt, MS

Ms. Flummerfelt has been a lab instructor in microbiology at UCLA for the past four years with a nephew who is a neurological marvel. Currently, she is a lab instructor for UCLA Extension and an online faculty member at the University of Phoenix. She holds a master's degree in Microbiology from UCLA.

Related Articles

  • My Nephew and his Brain, Part 2 – Revealed to be Complicated
  • My Nephew and his Brain, Part 3 – Try to Work Out their Troubles
  • Some Funny Stories From the Trenches
  • My Nephew and his Brain, Part 4 – Their Life Today
  • Are Physicians Spending Too Much Time Diagnosing Patients?
  • Defining Malpractice During an Emergency Evacuation
  • Going Beyond Informed Consent

2 Responses

  1. Nishikant says:
    May 11, 2011 at 1:20 am

    I have operated my child for Crynaiocytosis at the age of 2, Physically he is fit and fine but mentally he is not, now he is at the age of 13 and as the age is growing he is improving.
    But I want to know that whether the Stem Cells operation will help him out to recover and become normal as fast as he can?
    Please suggest, Thanks

    Reply
  1. My Nephew and his Brain, Part 2 – Revealed to be Complicated | Brain Blogger says:
    March 16, 2010 at 5:01 am

    [...] 16, 2010 | By Karen Flummerfelt, MS | Share / Save / Email / Bookmark | 0 CommentsContinued from Part 1. After we had arrived at the new hospital and my nephew had been placed into the Pediatric ICU [...]

    Reply

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