Mom Fights for Plagiocephaly/ Torticollis Awareness

By: MARY EIDSON - For the North County Times

"I am not normally an aggressive person, but now I've had to be," said Poway mom Kellie Du.

Her 6-month-old son was recently diagnosed with plagiocephally and torticollis, which in everyday terms is flattening of the head and tilting of the head due to tightening of the neck muscles. The causes of this condition are not completely known, but have been attributed to doctors recommending children be put to sleep on their backs, and to the length and difficulty of labor.

"I don't expect my doctor to know everything, but most of us do take their word as authority and trust that they are telling us the correct diagnosis," said Du. However, what her doctor didn't diagnosis was a condition that is becoming more common among babies.

"If a mom feels that something is wrong, then she should fight to find out what it is," said Du. And that is exactly what she has done and will continue to do. It seems she has had one fight after another, from attempting to have her son correctly diagnosed, to receiving treatment and now to getting her insurance company to cover the treatment, which it has refused to do.

Her fight began when she noticed that her son was constantly favoring turning his head to one side. She consistently asked her doctor about it and was repeatedly told not to worry. She tried turning the crib around but he still favored one side. Her doctor continued to tell her it was not serious and the problem would "go away."

By now her son had started to show signs of a flat head and ears being misaligned. Kellie also noticed Christopher had limited range of motion and began to research it online. She switched doctors hoping to get an answer. The new doctor advised Du to take Christopher to a physical therapist who gave her some exercises to do with her son, and told her that if she was really concerned then she should see a neurosurgeon.

She immediately did, and with one look the neurosurgeon said Christopher would need a cranial band, a soft-shell helmet.

Torticollis and plagiocephally can lead to learning disabilities, orthopedic problems and vision issues. However, if it is treated early it doesn't have to be serious and in fact in many cases can be remedied altogether.

Many parents are finding that insurance companies won't pay for this procedure and at a cost of about $3,000 are left without options and resources for their child.

The National Infant Torticollis Association is a nonprofit organization led by volunteers and parents to provide information and help to parents, families and health care professionals.

Du's goal is to make sure North County parents know about these conditions and can receive treatment.

For information about torticollis and plagiocephally, visit www.infant-torticollis.org.

Mary Eidson is a freelance writer who would love to hear about people who make a difference in North County. E-mail her at meidson5@cox.net.