Ballyclare family fundraise for US trip to treat son’s brain condition

Cameron Lindsay receiving treatment for PANDAS in hospital. INLT-14-710-con
Cameron Lindsay receiving treatment for PANDAS in hospital. INLT-14-710-con

The family of a Ballyclare boy struck by a life-changing brain condition are trying to raise up to £60,000 to send him to America for treatment.

Cameron Lindsay, now 12, was diagnosed with little-known condition Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) last February.

Cameron Lindsay pictured before he was struck down by PANDAS. INLT-14-713-con

Cameron Lindsay pictured before he was struck down by PANDAS. INLT-14-713-con

Since then, his family say that they have watched their beloved son change completely while battling the disease.

Cameron’s mum Natasha explained: “We had never heard of this condition before, but there is a correlation between testing positive for strep and presenting with a series of altered behaviours and personality.

“Normally the immune system produces antibodies to fight strep but in PANDAS the antibodies are misdirected to the brain as the strep cells are able to do molecular mimicry.

“The antibodies then attack the brain cells and basal ganglia so the immune system turns on itself and the effect of the infection is brain inflammation and damage to the basal ganglia.”

Before he was struck by PANDAS, Natasha says Cameron was a straight-A student who was confident, easy-going and articulate. The former Kilbride Central Primary School pupil was the captain of the school cricket team, played cricket for Templepatrick and was selected for the Cricket Ireland Youth Academy.

He was also the star striker in the school football team, played golf at Larne Golf Club, was a member of the Scouts and had even undertaken modelling assignments for children’s clothing.

However, his mother says that Cameron has been left “unrecognisable” by PANDAS.

“His movements, vocal, motor and emotional areas are affected,” she revealed.

“His personality has been affected, he has suffered problems including age regression, tics, OCD, a severe compulsion to touch hot surfaces, anxiety over daily tasks, emotional crises, irritability and aggression, Choreiform Movements similar to cerebral palsy, severe pain in his head, sensory distress, sleep problems and hallucinations.

“It’s like an earthquake, a sudden, violent attack without warning.”

Cameron had been looking forward to attending Ballyclare High School but was forced to pull out and begin home schooling last November. Natasha continued: “In cognitive testing a grammar school student should measure in the 83rd percentile or above and in some tests Cameron is measuring in the 97th percentile so he retains his intelligence but his short term memory, verbal retrieval and processing are all coming out as being severely affected by the neurological damage.

“He had been ready to take on more independence at big school but a PANDAS trait is that the child holds it together in public and then falls apart for hours on end at home so we realised we needed to take him out of school.”

The Lindsay family have been forced to re-structure their lives around Cameron’s illness, and to seek treatment for a condition which is relatively new to the medical establishment.

Natasha continued: “Cameron tested positive for basal ganglia antibodies so he was treated with intravenous immunoglobulin (IVIG), an infusion which swamps and kills the antibodies, and with steroids. This has similar side-effects to chemotherapy and radiotherapy such as feeling ill and having a high temperature. Cameron was on that for four months but when the steroids were removed we didn’t see the same improvement.

“Then we were discharged and send to the Child and Adolescent Mental Health Services (CAMHS) as that is all they have for children of Cameron’s age.

“Cameron’s condition requires a multi-disciplinary approach involving psychiatry, neurology, immunology and rheumatology but here in the UK PANDAS is treated under psychiatry.”

Recently, Cameron became the first child in Northern Ireland and only the fourth in the UK to undergo plasmapheresis for treatment of the condition. This involved extracting his blood with a dialysis machine, separating the proteins which house the attaching antibodies and returning the blood to his body with newly-processed antibodies.

However, the procedure does not provide a permanent cure.

Cameron’s family now hope to raise £50-60,000 to seek treatment in America with PANDAS specialist Dr Rosario Trifilletti, who has treated over 3000 children with PANDAS.

Natasha continued: “Dr Trifilletti is confident he can help us. We started fundraising two months ago and launched a “Go Fundraise” page and website.

In America they are seeing good results with two antibiotics which are taken for two years but these are unlikely to be available on the NHS.

“It can take a couple of years to get the child better which would mean taking several trips and in America you have to pay to see the doctor, to get tests, lab fees and to get the results. For someone without health insurance it will be very expensive.”

The family have organised a marathon, half-marathon and 10k run or walk at Greenisland Golf Club on Saturday May 9.

While the spaces for competitors have been filled, the family are still looking for volunteers to assist during the event.

The family are also appealing for sponsors for future events to aid their fundraising appeal.

For more information, visit http://thecameronlindsayappeal.weebly.com/. To donate, visit http://www.gofundme.com/o9lrao. To offer help or sponsorship, email natasha.lindsay@btopenworld.com.