Mother's worry leads to discovery of rare illness
Date: 10/31/2008
By RACHEL JOHNSON
The Aiken Standard
AIKEN, S.C. (AP) _ One mother's persistence saved her son's life.
After watching medical personnel roll their eyes and express the "not you again" body language numerous times over the past year, Nicole and Stephen Householder finally found some answers to the mysterious rash that was written off as eczema, the abnormal bowel symptoms, the bruising, excessive diaper rash, cradle cap and other symptoms that manifested in her 13-month-old son, Landin.
"Are you a first-time mother?" nurses frequently asked Nicole, or they said, "He looks fine and acts fine so there isn't anything wrong."
Nicole knew in her heart something was wrong with her son, and she persisted until she found answers. "I knew something wasn't right with him."
Since Landin was born Sept. 21, 2007, he has been a familiar face at his pediatrician and the hospital. Nicole recalls they have been going to the doctor's office at least seven or eight times a month. Initially, he was hospitalized for chronic constipation which later turned to chronic diarrhea — issues the Householder family has been dealing with since birth.
Just a few days before Landin's first birthday, Nicole noticed red splotches on Landin's back. "It looked like an allergic reaction," she said. She was not alarmed as children frequently have reactions.
Observing the area over the weekend, Nicole noticed the redness spreading. Landin never seemed to notice; he never itched the area and continued crawling, playing and learning to walk.
Nicole took Landin to his pediatrician where Landin was diagnosed with eczema and given a topical cream for treatment. Over the next few days, not only did the rash become more severe, Landin's skin began to turn black and blue. He still didn't itch and the bruises didn't appear to hurt.
The Householders returned to the doctor where Landin was tested for meningitis. He never ran a fever and appeared perfect.
"They kept telling me he's acting fine, but as a momma I wanted answers," said Nicole. "What was he supposed to look like or act like? I knew something was wrong and I felt like I wasn't being taken serious."
Landin was referred to a hematologist/oncologist as there was concern for leukemia. His platelet levels came back normal, his blood work was fine. Next he was referred to a dermatologist who agreed that if it were eczema, Landin would be scratching.
After three and a half weeks of watching her child turn blue and the rash worsen while doctors told her it was eczema and prescribed creams for it, Nicole and her family wanted answers.
Two biopsies were performed on the rash on Landin's back and returned with results testing positive for Langerhans cell histiocytosis. The dermatologist referred the Householders to an oncologist to explain the disease to the family.
Nicole's mother, Gwen Koon, spent the next 24 hours frantically researching Langerhans cell histiocytosis online, while Nicole and Stephen dealt with the devastating news.
They discovered that histiocytosis is a rare blood disease caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes and/or the central nervous system.
Information provided to the Householder family by a specialist states in big bold letters "There is no known cure," there is only treatment. Landin's treatments will either be chemotherapy for six months to a year, prednisone shots or surgery.
The cause of the disease is unknown, but it can be triggered by an unusual reaction of the immune system or by something commonly found in the environment. It is not hereditary or communicable.
"The doctor told me I saved my son's life by being a paranoid mother," said Nicole. "Don't give up when you know something is wrong; you're the parent. People really need to look at what's going on when their child is not getting better. You know if something is wrong with your child."
Copyright 2008 The Associated Press.
By RACHEL JOHNSON
The Aiken Standard
AIKEN, S.C. (AP) _ One mother's persistence saved her son's life.
After watching medical personnel roll their eyes and express the "not you again" body language numerous times over the past year, Nicole and Stephen Householder finally found some answers to the mysterious rash that was written off as eczema, the abnormal bowel symptoms, the bruising, excessive diaper rash, cradle cap and other symptoms that manifested in her 13-month-old son, Landin.
"Are you a first-time mother?" nurses frequently asked Nicole, or they said, "He looks fine and acts fine so there isn't anything wrong."
Nicole knew in her heart something was wrong with her son, and she persisted until she found answers. "I knew something wasn't right with him."
Since Landin was born Sept. 21, 2007, he has been a familiar face at his pediatrician and the hospital. Nicole recalls they have been going to the doctor's office at least seven or eight times a month. Initially, he was hospitalized for chronic constipation which later turned to chronic diarrhea — issues the Householder family has been dealing with since birth.
Just a few days before Landin's first birthday, Nicole noticed red splotches on Landin's back. "It looked like an allergic reaction," she said. She was not alarmed as children frequently have reactions.
Observing the area over the weekend, Nicole noticed the redness spreading. Landin never seemed to notice; he never itched the area and continued crawling, playing and learning to walk.
Nicole took Landin to his pediatrician where Landin was diagnosed with eczema and given a topical cream for treatment. Over the next few days, not only did the rash become more severe, Landin's skin began to turn black and blue. He still didn't itch and the bruises didn't appear to hurt.
The Householders returned to the doctor where Landin was tested for meningitis. He never ran a fever and appeared perfect.
"They kept telling me he's acting fine, but as a momma I wanted answers," said Nicole. "What was he supposed to look like or act like? I knew something was wrong and I felt like I wasn't being taken serious."
Landin was referred to a hematologist/oncologist as there was concern for leukemia. His platelet levels came back normal, his blood work was fine. Next he was referred to a dermatologist who agreed that if it were eczema, Landin would be scratching.
After three and a half weeks of watching her child turn blue and the rash worsen while doctors told her it was eczema and prescribed creams for it, Nicole and her family wanted answers.
Two biopsies were performed on the rash on Landin's back and returned with results testing positive for Langerhans cell histiocytosis. The dermatologist referred the Householders to an oncologist to explain the disease to the family.
Nicole's mother, Gwen Koon, spent the next 24 hours frantically researching Langerhans cell histiocytosis online, while Nicole and Stephen dealt with the devastating news.
They discovered that histiocytosis is a rare blood disease caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes and/or the central nervous system.
Information provided to the Householder family by a specialist states in big bold letters "There is no known cure," there is only treatment. Landin's treatments will either be chemotherapy for six months to a year, prednisone shots or surgery.
The cause of the disease is unknown, but it can be triggered by an unusual reaction of the immune system or by something commonly found in the environment. It is not hereditary or communicable.
"The doctor told me I saved my son's life by being a paranoid mother," said Nicole. "Don't give up when you know something is wrong; you're the parent. People really need to look at what's going on when their child is not getting better. You know if something is wrong with your child."
Copyright 2008 The Associated Press.
Labels: baby diseases, cradle cap, eczema, histiocytes, Langerhans, Langerhans cell histiocytosis, misdiagnosis, oncology, parent advocacy
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