Ben Luscombe's PANDAS Treatment

$6,455 of $15,000 goal

Raised by 61 people in 1 month
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:
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Thanks everyone for your ongoing support. Our trip to Sick Kids this week was cancelled and will be rescheduled to include a sedated MRI and new EEG. Neurology would like to get a more recent picture of how Ben is doing. Ben has been struggling after a Strep exposure last week, but we've started an increased Steroid dose and I'm hoping it will take his new OCD and anxiety symptoms down to a more manageable level. And, in a month we head off to Calgary to Alberta Children's Centre to see a PANDAS specialist. Without your generosity we could not have made this trip! I have high hopes that we will begin to get the specialized help we need and a path to healing. OCD, anxiety, emotional ups and downs, slow processing speed, brain fog, confusion, patterned walking, stomach ache, are Bens every day reality. And have been for years. We need this to be over. This is no way to spend a childhood.
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We stopped in the the Port Elgin Veterinary Clinic the other day!! They have a bulletin board with PANDAS information to help raise awareness. Every bone and paw is a donation! Also, a very thoughtful person had called in and left a 100.00 credit on our account there! What a heartwarming surprise! This is our dog Zoey who was very happy to take in the love and even get her immunizations. Thanks to everyone who has come in to get a keychain!
Zoey taking in the love!
Can you spot yours? Thank you!
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It's Bell Let's Talk Day. Did you know that 70% of mental health problems have their onset during childhood or adolescence. -CAMH

Talk to your children early and talk often. PANDAS puts my son at a higher risk for Mental Health concerns as an adolescent and adult if we can't get treatment. We talk mental health all the time. It's our new reality. Anxiety, OCD, Tics, Depression, Restricted Eating, Emotional Liability, Rage, Regression #PANDASsucks
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Thank you so very much to my amazing friends at work! Together they donated $1615.00! I am so blessed to share my days with you all. Your support means so much. Not only are you supporting Ben and I now, but you've supported us in so many ways since the very beginning of Bens illness. I couldn't have survived without your constant support. Thanks for the cards as well. I've read them many times and am still teary. You are all amazing! Thank you to Leigh Parker and Brooke Tomsett for all your organizational skills and putting together this surprising gift for us!
All the cards full of notes of inspiration and support
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$6,455 of $15,000 goal

Raised by 61 people in 1 month
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Terri Delaney
3 days ago
Melissa Tadeson
10 days ago
Mary Prince
13 days ago
Leah MacDonald
17 days ago
Dick and Ruth Verrips
18 days ago
Slawko Waschuk
20 days ago
Shanan Sawatzky
21 days ago
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