Ben Luscombe's PANDAS Treatment

$7,290 of $15,000 goal

Raised by 72 people in 4 months
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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Ok guys! I finally have a free moment while Benny is in his vision therapy this morning. The last couple weeks have been a whirl wind. With full time work, Bens therapy appointments Easter fun, and everything else that life throws at us.

We flew to Calgary to Albertas Children's Hospital to see the Canadian PANDAS Rheumatologist Dr Bensler 2 weeks ago!!!! It was amazing. The hospital blew me away. What a beautiful facility.

The trip was so worth the outcome. I wish I had met her sooner. She had read everything about Ben before we got there and had even connected by phone with our Peaditrician who referred us (they know each other) We came away with 3 major things.

1. A request that our Pead refer us to see a neurologist that practices outside of Sick Kids- they do not treat PANDAS. I've posted before about Ben's seizure during his recent EEG and my suspicion that he has had absence seizures since onset. She would like him to try an anti seizure med and evaluate if it has any effect on him, for 3 weeks. If it helps she says to continue.
2. She recommends he stay on prophylactic antibiotics and is bumped up to treatment dose when exposed to Strep. She suggests he continue with the daily steroids for now as they do help him very much (likely because of both their anti-inflammatory and anti seizure effects)
3. She prescribed IVIG 4 rounds given monthly. She had connected with our Peaditrician prior to our appointment and he will do it in our small local hospital!!!!! He's on vacation for 3 weeks, so we haven't actually gotten anywhere yet- but it sounds like it's going to happen!!

She had to interrupt me a few times as I went in to the appointment in defence mode- ready to share everything I had and MAKE her see his PANDAS. I really wanted her to help. When she said "Momma- stop. There is no doubt in my mind your boy has PANDAS. I'm sorry you've been through so much." WOW! I started to tear up.

Here is my special trooper outside the hospital and my smiling self! We visited with my wonderful Aunt Heather and Uncle Tommy, another very special PANDAS mom and my lifelong friend Rebekah White and her amazing family. Ben would like to keep her son Zack as his big brother! Ben and I also went to check out the mountians and the Banff hot springs, and tackled the wave pool at the West Edmonton mall.

Could we finally be on the path to healing?! After so many years of confusion, deterioration and ups and downs?

I can't thank everyone here enough for your help and support. Without you we would not have had the money go out West or to pay for Bens ongoing treatments- THANK YOU!!!
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Hi Everyone!

It's March Break! We've had a very busy time.

This week Ben is attending PRANCE Therapeutic Riding Camp this week. He's surrounded by wonderful people and horses!

Last week Ben and his EA Jenn helped me put up a bulliten board at school about PANDAS Ben wanted his picture up there and wanted to tell his schoolmates what PANDAS is. I though you'd like to see how he is raising awareness in his school.

We were down to Sick Kids on Friday March 9th and again on Wed March 14th.

On Friday he had a sedated MRI and was really interested in all the machines. He did great with the gas and the sedation and I was so proud of him.

On Wednesday we went back down after a very short sleep for a sleep deprived EEG. Ben got all the wires attached to his head like a champ. Once he was wired up he had a seizure almost immediately. It was good to catch on the EEG. He was allowed to sleep for 15 minutes and then the test was over.

I'm so proud of my boy. Two days of Sick Kids trips this week and he's been amazing.

We are busy this weekend with a visit from a close friends and a cousins Birthday Party.

Today we will had a film crew to our home. Ben and I are going to be involved in a documentary on PANDAS in Canada called "Stollen Childhood" I'll keep you all posted! I wanted to share pictures of that experience!

Next week we head to Calgary to see a Rheumatologist who specializes in PANDAS and I'm really looking forward to getting started with a physician who actually understands this condition and who may hold they key to permanent healing for Ben.

Here are some pictures of our crazy March Break! Thank you all so much for your support.

Terra and Ben
Looking down over the atrium- Sick Kids
The board at school
Ninja style PJs!
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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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Raised by 72 people in 4 months
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