You never know when a disease will strike at you or a loved one. In the case of the Luscombe family of Southampton, it struck out at their little boy, Ben, in the form of the disease PANDAS three years ago.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptocococcus or Autoimmune Encephalopathy. It describes a subset of children or adolescents who have either an abrupt onset of Obsessive Compulsive Disorder or Tic Disorder symptoms following a Streptococcus infection.
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| Ben and mom, Terra |
One in 200 children may be affected which is equal to statistics for Pediatric Cancer, Pediatric Diabetes type 1 & 2 and ALS. The average age of symptom onset is between four and seven years of age. Strep is indicated as the primary infectious trigger in more than 80 per cent of cases.
Ben's mother Terra is a nurse who has worked with young children and who says that almost overnight "...he became a different child."
He developed seizures that resulted in damage to his visual and auditory processing and has numerous other life-changing symptoms, including behavourial regression into baby-talk and tantrums, urinary issues such as bed wetting, joint pain and inability to control tears or laughter.
Ben has had hospital stays, an MRI, CT Scan, Lumbar Puncture and numerous EEGs and bloodwork.
They'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. They are now awaiting an appointment with a specialist in Rheumatology in Calgary at Alberta Children's Hospital.
As a single mom," Terra says, "this has cost me all my savings in therapies and medical appointment travel." She still finds time to be involved in fundraisers for the Humane Society and is on her son's School Council at G. C. Huston Public School.
They are now trying to raise funds for a consultation with the Rhumatology specialist at Alberta's Children's Hospital and another in Washington DC as there are none in Ontario. The approximate first-round cost is anticipated to be approximately $15,000 plus $1,000 for travel. To that end, a 'gofundme' account has been established for Ben at https://www.gofundme.com/ben-luscombes-pandas-treatment.
I merely put this story out there as one way of showing my support.
(With thanks to Sandy Lindsay and the Saugeen Times)
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