- CASE FILE
Calling Dr House! 17 yr old girl whose life is deteriorating due to a myriad of undiagnosed symptoms even Mayo Clinic can't help. Help!?
ABOUT THIS CASE FILE
Since birth and for the past 17 years, we have been seeking help, any kind of help, to find the underlying cause to a myriad of symptoms that seem to be "off the radar" from typical or more well-known issues. From her pediatrician at age 2 to Naturopathic Doctors, Integrative Physicians and Neuro-X to anything alternative...to no avail.
Our daughter is now beginning to physically deteriorate while having given up on any hope for having a normal life. Here is a quick picture of her current state keeping in mind she was born with this mystery illness. What makes it worse, you would never know she has these challenges by looking at her or talking with her as she is highly embarrassed about her condition and is a magician at hiding all symptoms.
MYSTERY SYMPTOMS LIST
SENSORY PROCESSING DISORDER - Does not process what she hears or sees as we all do. She must calculate distances; concentrate to balance when standing, walking, etc.; focus and disseminate what she hears to process it normally
MISOPHONIA – a condition where certain sounds (eating, crunching, cracking knuckles) trigger an instant and uncontrollable reaction of anger and annoyance.
CHRONIC ANXIETY – We view this as a “symptom” of underlying issues. This has been since birth and is to the point (due to having lived with this all her life) that she rarely goes into public and has had to take up High School classes virtually at this point in her life. Diagnosed w/ GAD (Generalized Anxiety Disorder)
CHRONIC DEPRESSION – This symptom also continues to worsen due to her many symptoms continuing to go untreated and undiagnosed. Today she can’t attend school, work or any public events and combined with her current deteriorating physical condition, depression is at an all-time high and getting worse for obvious reasons.
CHRONIC FATIGUE – Not EVER getting a normal sleep cycle combined with the daily stress of having to focus so hard on every day issues (visual and auditory sensory processing disorders), lack of physical exertion and sunshine and nutrition and combining everything else, she has days she can’t even sit up at times.
OCD – In order to simply “go out”, even for something as simple as going to a doctor’s appointment, it can take up to 4 hours preparing.
INSOMNIA – from 9 months of age to present (17), energy as the sun sets and rarely sleeps through the night. Currently up ALL night and sleeps through most of the day
VULVAR VESTIBULITIS – severe pain in the vestibule area
JOINT AND MUSCLE PAIN – consistent and flairs up after any type of physical activity (which is rare now)
NAUSEA – consistent after eating; leading to a decrease in appetite
NON-VERBAL LEARNING DISORDER (NLD) – It’s not what you think. NLD is difficulties with part-whole relationships and ability to see the big picture. This includes deficits in the visual-spatial-organization domain and social perception. Stress and anxiety are also characteristic of a nonverbal learning disability; and this manifests as being easily overwhelmed with multiple task demands, low frustration tolerance when information is not well understood, extreme difficulty with flexibility and transitions, and difficulties with long term planning and personal organization.
Stretch Marks or Striae – located on the upper thigh and buttocks region. Do know Ashley is not overweight in any capacity.
IRREGULAR AND PAINFUL PERIODS -not always every month but when they do hit, she is bed-ridden for portions of the days it hits.
FADING APPETITE - This is more recent and we partially attribute to her depression that has set in even more so since nothing is working. She is losing hope and it's become an unsustainable situation.
HEADACHES – On a daily basis and has become a part of her life now
SEPERATION ANXIETY – since birth and continues to this very day. Some days she couldn’t “let go” to go to school.
Treatments pursued over the past 17 years include but not limited to include…
• Traditional Physician or Western Medicine
• Listening Therapy
• Alternative treatments (too many to list)
• Naturopathy / Homeopathy
• Neuro-X (meaning we have focused on anything neuro or on the CNS (central nervous system)
Bottom line is we have witnessed the continued deterioration of our daughter and fear time is not on our side. She has all but given up but has that internal fight that is keeping her alive today and with the smallest of hope left, our little family continues to push forward in hope that our persistent search for a miracle cure will eventually land that miracle allowing her to experience life as it’s meant. From there, we will make it our life’s mission to help anyone else that may have similar symptoms. Her mother and I will do anything, move anywhere and do all that a concerned and loving parent would do for their child. Life is simply too short.