Noonan Syndrome (NS)
Support Group Introductions
Naugle, Nancy (as of July 18,1997)
Hello, my name is Nancy Naugle. Bob and I have two wonderful children:
Glenn (8 years) and Brenda (6 years). We live in South Jersey in a mini-metropolitan area about a half an hour from Center City Philadelphia. Brenda was born on October 29, 1990, and was diagnosed shortly after birth with Turner’s Syndrome. After about a month the genetic test was returned with both x’s normal and the dx was switched to NS.
She endured acute bronchitis when she was 2 ½ months, for which she was hospitalized only after much complaining to her pediatrician. The bronchitis never cleared up until she had her PDA ligated,(Patent Ductus Arterious - a valve on the outside of the heart in between a vein and an artery leading to and from the lungs), when she was 5 ½ months old. Cardiologically speaking she also had an ASD that spontaneously closed by the age of two. She was then dx’ed with Aortic Valve leakage and MVP (Mitral Valve Prolapse). She has had two surgeries to correct her severe bilateral Ptosis. One when she was 8 months old and another when she was 2 ½. The result of the second surgery was amblyopia, so she had to be patched for six months. She was dx’ed with GERD (Gastro Esophageal Reflux Disease) when she was sixteen months old which explained why I had to wrestle her in her infancy to feed her. Mostly we were frustrated with her feedings in infancy, however, occasionally it was comical to watch all the positions we used in a half an hour wrestling match to get something in her. Only now that she’s six and a half can I laugh. She was maintained on Reglan and Zantac, until recently, when we switched from Reglan to Propulsid to lessen the side effects. We researched a surgery called Fundoplication so we could get her off medication, however, the medical profession still is conserving that until her organs have been damaged for 15-20 years by the meds. Brenda is having her seventh endoscopy tomorrow to search for myoplastic tissue (pre-cancerous cells) caused by the reflux. Brenda endured many developmental delays when she was little. After fighting to have her put into an Early Intervention Program, she has done well. Her biggest problems were Speech acquisition and articulation, gross and fine motor. She was totally declassified and put into a mainstream kindergarten setting. She did well, however, it was suggested that she attend pre-first next year. I agreed to put her into pre-first, however, I will be reclassifying her because I suspect LD, either Dyslexia or ADD or both. I already know this is going to be an uphill battle because of the previous discrimination I have faced in this school. Unfortunately for them I’m not going to stop being a fighter now.
Brenda is short in stature, but not in brawn. She is much more feisty than her brother. Brenda will talk to anyone. Glenn is more shy and reserved. Brenda banged her head until she was black and blue when she was around two years, as if the surgery was not enough. We were actually reported to DYFS (Division of Youth & Family Services) after her second surgery. Glenn is fair, blue eyes, and blonde hair. Brenda is olive, brown eyes and hair. They could not be better at night and day if they tried. Brenda is much more emotional than her counterpart. Even though Glenn seems rather gifted I also suspect LD in him. I know that seems to be paradoxical, however "Ignorance is Bliss". The Medical and Educational Fields do not see eye to eye on many issues of "statistical significance", and we are the Guinea Pigs. Big Brother are you out there? O.K...back to reality. Both the kids are better at solo activities. Neither their father or I are very coordinated. Bob is very gifted mathematically & scientifically and I am very creative.
NS has both negatively and positively impacted our lives. We are occasionally know to balance the load with lots of fun!!! The kids both enjoy international exchange students & Geography, Gymnastics, Swimming, & Computers. Glenn has achieved his Wolf Badge and is moving on to earning his Bear Badge in Cub Scouts this coming school year. He also plays baseball, basketball, and tennis. Brenda is excited to start horse back riding in the fall. Bob works full time as a Computer Programmer/Analyst for Bluestone Inc. and travels a couple of times out of the year. I have recently returned to school to acquire an RN. If you can’t beat ‘em might as well join ‘em. Did I mention I’m looking forward to that imaginary vacation a year from now?
Well I’ve rambled enough. TTFN! Care to e-mail? naugle@voicenet.com.
playfully yours...
Nancy
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