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Misdiagnosis: Cerebral Palsy and Related Disorders

We're not far away from a time when gene-mapping will become the first avenue that doctors travel down when trying to properly diagnose conditions like cerebral palsy.

2012-07-24
NEW YORK, NY, July 24, 2012 (Press-News.org) As many of us know who have barely survived multiple misdiagnoses, our current lab and imaging tests are frequently insufficient when it becomes critical to pinpoint elusive illnesses and diseases.

Sadly, doctors often give up once they've chosen one diagnosis, even when symptoms clearly indicate that other diagnostic labels may be more accurate.

Cerebral Palsy and the Beery Twins of California

This is the type of quandary that the Beery family of Encinitas, California, began facing once twins Alexis and Noah were born 14 years ago. When the twins began moving about rather abnormally, crying inconsolably and frequently vomiting, their parents sought out answers wherever they could. Retta Beery, the twin's mother, began scouring the Internet, determined to find a cure for her children.

One doctor decided that the twins' main foe was cerebral palsy. This diagnosis is often used to reference an entire spectrum of brain and central nervous system disorders that can affect a patient's thinking, learning, movement, hearing and seeing. Of course, once a doctor provides young children with this diagnosis, questions can quickly start outnumbering answers.

Retta Beery and her husband kept carefully observing the twins to see how well they responded to the recommended treatments. They were aware that while this disorder can't be cured, it can be greatly improved for lucky patients who diligently pursue the right treatments and remedies. Unfortunately, added problems kept surfacing. In particular, at the age of five, young Alexis displayed a number of more troubling symptoms not easily explained away by cerebral palsy.

Her mother continued her many Internet searches, eventually finding an older journal article that referenced dopa-responsive dystonia. That condition involves symptoms Retta Beery was observing in her daughter. The Beery family then located a doctor in another state who was willing to treat the then six-year-old twins with limited doses of Levodopa (L-Dopa), a drug often used to treat Parkinson's patients. The twins soon began functioning much more normally.

After more time passed, the family discovered that the twins' problems had not yet ended. Young Alexis developed such serious breathing problems on multiple occasions that she had to be rushed to an emergency room for help.

What Finally Helped Solve the Twins' Worst Medical Crises?

As the twins' health crises continued to worsen, Retta Beery and her husband looked into obtaining comprehensive DNA (or genome) mapping for the entire family at Houston's Baylor College of Medicine. They needed additional medical answers right away.

Stated succinctly, the DNA testing showed that the twins were suffering from both serotonin and dopamine deficiencies. A curative supplement called 5-HTP was prescribed which directly addressed the twins' neurotransmitter problems. Today, the twins are 14 years old and living fully active and enjoyable lives.

Steps to Take When You Suspect Cerebral Palsy or Other Nervous System Disorders

- Get a Second Opinion. Always seek out a second professional opinion when many critical symptoms are not addressed by the first diagnosis you are given. Doctors have limitations - the smartest ones will usually welcome the input of another colleague;

- Keep the Afflicted Individuals Under Regular Observation. Whether the people suffering are children or adults, make sure they are living where plenty of adults have the opportunity to observe their behavior throughout each day. Symptoms that might be missed by the afflicted person might be noticed by someone else and prove critical to obtaining the additional (or replacement) treatments needed;

- Raise the Funds However You Must. While the costs of obtaining gene mapping remain quite high, many advocates are trying to get the cost down to as low as $1,000, per person, in the years to come. Until then, raise funds however you must to help the afflicted persons obtain this type of testing for all highly elusive medical problems. If you do this, you'll probably wind up saving many lives.

New York Malpractice Lawyers
Rosenberg, Minc, Falkoff & Wolff, L.L.P.
122 E. 42nd Street, Suite 3800
New York, NY 10168
Telephone: 212-697-9280
www.nycaccident.com


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[Press-News.org] Misdiagnosis: Cerebral Palsy and Related Disorders
We're not far away from a time when gene-mapping will become the first avenue that doctors travel down when trying to properly diagnose conditions like cerebral palsy.