Maternal concern leads to discovery of rare illness
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 on 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 on Monday morning 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 was 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. This news came on a Thursday, and the dermatologist referred the Householders back to an oncologist in order 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.
They also discovered disturbing information about the disease: Approximately 1 in 200,000 children born in the United States are affected.
Histiocytosis primarily affects children under the age of 10, but it is also found in adults of all ages.
"This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an 'orphan disease,' meaning it strikes too few people to generate government-supported research," reports www.histio.org.
The rarity of the disease often causes it to be overlooked until it is diagnosed too late to save a patient.
"We were told it typically goes misdiagnosed at least a year or more," said Nicole.
After spending a nearly a day educating themselves, the Householders returned to the oncologist to discuss the disease.
"We had so many questions," said Nicole. "The doctor told us, 'I have not seen anything like this in over 20 years.'"
In the past two weeks, Landin has undergone a CAT Scan, an MRI, nuclear bone scan, as well as been fitted with a chemo port. The testing has revealed that the disease has not spread to his bones or organs. It appears to only be on his skin, but the problem the Householders keep running into is the lack of knowledge of the disease in the medical profession.
Nicole set out in search of a doctor knowledgeable about the disease and found only four specialists in the United States. Medicaid will not cover the cost as it has been deemed the doctors currently handling the care are qualified despite having little to no experience working with patients afflicted with the disease.
Landin will meet with a specialist on Nov. 7 in Nashville, Tenn., and the family is relieved to be able to speak with a knowledgeable expert.
"We do not know the extent of the disease until we go to Nashville," said Nicole.
Information provided to the Householder family by the 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, and the specialist said, "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."
Steven and Nicole, along with Robert and Gwen Koon, would like to thank everyone who has been praying for the family.
Anyone interested in learning more about the disease or offering their prayers and support may contact the family at landinsmiracle@hotmail.com. For those who wish to remain anonymous, an account has been set up at Regions Bank in the name of Landin Householder.
Symptoms
Symptoms vary depending on the part of the body affected.
* Scaly, waxy rash that does not respond to treatment
* Single or multiple lesions, bone pain, headaches (skull lesions) and limp (leg lesions)
* Abdominal pain and jaundice, vomiting, diarrhea, bleeding from the esophagus and weight loss
* Dehydration, polydipsia (excessive thirst), polyuria (excessive urination), short stature and delayed puberty
* Feeding problems (infants), vomiting, diarrhea, chest pain, labored breathing, failure to thrive, cough, coughing blood and weight loss
* Mental deterioration, diabetes insipidus, headaches, dizziness, seizures, abnormal protrusion of eyeballs, difficulty swallowing and vomiting
* Pain and swelling of face, loosening and loss of teeth, swollen gums with hemorrhage and swollen lymph nodes in neck
* Inflamed condition of ear canal, rash behind ear or on scalp, formation of cysts in the ear and oozing from ear (foul-smelling discharge)
* Lung, liver or spleen dysfunction
* Vision problems or eye bulging