The Auggie Files

The amazing journey of a brave, fun-loving, creative boy who is enduring and has overcome so much already: failure to thrive, feeding tube dependency, food allergies, silent reflux, pulmonary valvar stenosis, chiari malformation, syringomyelia, retroflexed odontoid, mild bilateral hearing loss, a blood coagulation disorder, and Noonan Syndrome.

Monday, September 1, 2014

Auggie enjoying a hike 2 days before surgery


Posted by Eva at 8:22 AM No comments:
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Get Support

  • Noonan Syndrome Foundation
  • RASopathies Family (formerly Noonan Syndrome Family)
  • The Chiari Nook
  • Chiari & Syringomyelia Support www.ASAP.org
  • ASAP's Parents Page(child with Chiari, Syringomyelia or related disorder)

Complex Chiari Research

Fusion with Chiari Surgery

Noonan Syndrome Research

Noonan Syndrome: Clinical Features, Diagnosis, and Management Guidelines

Chiari Malformation Research

Posterior fossa decompression in syringomyelia associated with a Chiari malformation

Association between Noonan syndrome and Chiari I malformation: a case-based update

Our Auggie

Our Auggie

Auggie's Story

Auggie was born full term without complications but an undiagnosed chromosomal disorder, silent reflux and multiple food allergies led to increased vomiting, oral aversion, reluctant nursing, and eventually failure to thrive. After 9 months on a feeding tube we managed to wean him and get him to eat on his own. An accidental fall in 2014 resulted in internal bleeding, a skull fracture and hospitalization. The MRI revealed that he had chiari malformation, a congenital brain defect. It had gone undetected and led to a CSF blockage in his spinal canal. Blood tests later revealed a blood coagulation disorder and genetic testing diagnosed him with Noonan Syndrome. We finally had answers that explained his failure to thrive as an infant, his bleeding problems and the chiari malformation. We thought the NG tube as an infant was the end of the world, little did we know that the real battle was yet to be fought.


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Tube Weaning Research

Prevention and Treatment of Tube Dependency in Infancy and Early Childhood

Tube Weaning Sites

http://www.notube.at/

http://tubefedkids.ning.com/

http://www.ippec.org/english/biography/wilken.html

Labels

  • abdominal ultrasound
  • Alagille Syndrome
  • allergies
  • amicar
  • BMI
  • bolus
  • breastmilk intolerance
  • calories
  • celiac disease
  • cerebellar tonsils
  • chiari malformation
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  • chromosomal tabulation
  • complex chiari
  • constipation
  • cyproheptadine
  • dairy
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  • decompression surgery
  • developmental delays
  • drinking
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  • duraplasty
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  • EDS
  • EE
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  • Ehler-Danlos Syndrome
  • endocrinologist
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  • Factor VII
  • Factor XIII
  • feeding specialist
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  • G-tube
  • gastric emptying study
  • genetics
  • GERD
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  • Graz
  • hearing loss
  • homeopathic remedies
  • IEP
  • lactose intolerance
  • laminectomy
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  • migraines
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  • modified barium swallow
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  • novoseven
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  • OHI
  • opthmalmology
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  • posterior fossa decompression
  • Pre-K
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  • RAST
  • reflux
  • Reglan
  • replacing tube
  • retroflexed odontoid
  • roseola
  • sippy cups
  • skin prick test
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  • speech and language
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  • spleen
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  • Stanford
  • strabismus
  • syringmyelia
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  • thyroid
  • travel
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  • tube weaning
  • tubes
  • valvar pulmonary stenosis
  • vomiting
  • vomitting
  • whole exome sequencing
  • x-ray
  • zantac

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