Ben Luscombe's PANDAS Treatment
Donation protected
We are currently having a fundraiser for Ben Luscombe who is fighting this disorder. PANDAS- Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.
PANDAS Fundraiser: Ben's Story (Terra):
As a nurse whose entire career was working with young children, I had never heard of this Autoimmune Encephalopathy before. 3 years ago it took my son. He still stood in front of me, occasionally I could see his loving personality & beautiful smile. But he was changed. Overnight he was a different child. PANDAS is a disorder that describes children who have an abrupt onset of Tics or Obsessive Compulsive disorder following a strep infection.
Symptoms are: choreiform movements, generalized anxiety, obsessive compulsive disorder, tics (motor + vocal), separation anxiety, sleep difficulties, emotional labiality (irritability, aggression, rage, inability to control tears or laughter), behavioral regression (baby-talk, temper tantrums), developmental regression (fine motor skills, handwriting), Decreased ability to concentrate and/or hyperactivity, loss of abilities in math & visual-special areas, sensory issues (sound, smells, light, clothing), urinary issues (increased frequency, bed wetting, or daytime enuresis), joint pain. Ben has also experienced seizures resulting in damage with his visual & auditory processing abilities.
Ben has had hospital stays, an MRI, CT Scan, Lumbar Puncture and numerous EEGs and bloodwork. We've been to London Health Sciences Neurology, MAC Neurology, Thames Valley Children Centre Developmental Pediatrician, Sick Kids Psychiatry, Sick Kids Pediatric Outpatient Pediatrician, Sick Kids Infectious Disease and now Sick Kids Neurology. Ben is awaiting an appointment with a specialist in Rheumatology in Calgary at Alberta Children's Hospital.
.The sad thing is, if someone had helped treat him at onset- with antibiotics- we would never have had to know this daily struggle.
3 years later I fight every day to get him back and to find the strength to show him his strengths & how amazing he is. We struggle daily.
As a single mom, this disorder has cost me my savings in therapies for Ben & medical appointment travel.
We are currently saving to see the Rhumatology specialist At Albertas Children's Hospital (travel costs are approx $1,000.00) & a specialist in the Washington DC in the United States (initial appointment cost and first round of ivig treatment is approximately $15,000) as there are no specialists available in Ontario.
Thank You for yoursupport!
Terra Luscombe
If this story sounds similar to someone you know, please have them reach out. There is help! For more information on PANDAS go to:
http://www.pandaspansontario.org/
www.pandaspansontario.org
http://www.pandasnetwork.org/
PANDAS Fundraiser: Ben's Story (Terra):
As a nurse whose entire career was working with young children, I had never heard of this Autoimmune Encephalopathy before. 3 years ago it took my son. He still stood in front of me, occasionally I could see his loving personality & beautiful smile. But he was changed. Overnight he was a different child. PANDAS is a disorder that describes children who have an abrupt onset of Tics or Obsessive Compulsive disorder following a strep infection.
Symptoms are: choreiform movements, generalized anxiety, obsessive compulsive disorder, tics (motor + vocal), separation anxiety, sleep difficulties, emotional labiality (irritability, aggression, rage, inability to control tears or laughter), behavioral regression (baby-talk, temper tantrums), developmental regression (fine motor skills, handwriting), Decreased ability to concentrate and/or hyperactivity, loss of abilities in math & visual-special areas, sensory issues (sound, smells, light, clothing), urinary issues (increased frequency, bed wetting, or daytime enuresis), joint pain. Ben has also experienced seizures resulting in damage with his visual & auditory processing abilities.
Ben has had hospital stays, an MRI, CT Scan, Lumbar Puncture and numerous EEGs and bloodwork. We've been to London Health Sciences Neurology, MAC Neurology, Thames Valley Children Centre Developmental Pediatrician, Sick Kids Psychiatry, Sick Kids Pediatric Outpatient Pediatrician, Sick Kids Infectious Disease and now Sick Kids Neurology. Ben is awaiting an appointment with a specialist in Rheumatology in Calgary at Alberta Children's Hospital.
.The sad thing is, if someone had helped treat him at onset- with antibiotics- we would never have had to know this daily struggle.
3 years later I fight every day to get him back and to find the strength to show him his strengths & how amazing he is. We struggle daily.
As a single mom, this disorder has cost me my savings in therapies for Ben & medical appointment travel.
We are currently saving to see the Rhumatology specialist At Albertas Children's Hospital (travel costs are approx $1,000.00) & a specialist in the Washington DC in the United States (initial appointment cost and first round of ivig treatment is approximately $15,000) as there are no specialists available in Ontario.
Thank You for yoursupport!
Terra Luscombe
If this story sounds similar to someone you know, please have them reach out. There is help! For more information on PANDAS go to:
http://www.pandaspansontario.org/
www.pandaspansontario.org
http://www.pandasnetwork.org/
Organizer
Terra Luscombe
Organizer
Southampton, ON
