Ballyclare PANDAS sufferer Cameron Lindsay is to undergo surgery in an attempt to treat his little-known neurological condition.
The 12-year-old, who suffers from Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), will have a tonsillectomy, adenoid check and tonsil culture within the next fortnight at Craigavon Hospital.
Cameron’s mum Natasha told the Times that the operation was being carried out on the advice of PANDAS specialist Dr Rosario Trifiletti.
The family recently received the results of blood tests which were carried out when the family visited Dr Trifiletti’s clinic in the USA in July. The trip and tests were paid for by local fundraisers.
“The tonsils are an area where strep can hide, as is the nasal cavity, so if his adenoids haven’t shrivelled away they will be removed as well,” Natasha revealed.
“Cameron’s tonsils are huge and pitted with strep bacteria, they have been like that for a couple of months.
“The advice is to get a tonsillectomy as soon as possible so we are going privately.
“On the NHS it would have been a 46 week wait to see a consultant and an additional wait for surgery.
“The operation won’t stop Cameron from flaring up when he comes into contact with strep, but it should eliminate one of the areas where it lives in his body.”
However, Natasha says that the surgery is not without risks, and that there is a “50/50 chance” that Cameron will respond.
“There is a danger that during surgery the strep could be released into his bloodstream and cause a major flare-up,” she revealed.
“To guard against that he will be on the high-strength antibiotics from America and the anaesthetist will inject antibiotics into Cameron’s IV straight away.
“We have thought about this for months and I have spoken to parents whose kids have had it done.
“There are many types of strep and having the tonsil cultured will tell us which strain it is and which antibiotic he will best respond to.
“All of this is paid for by fundraising and we are so grateful to the local community for their help.”
Ahead of the operation, Cameron recently returned to Ballyclare High School for four hours a week with the help of a classroom assistant.
The local boy had been forced to pull out of school due to his illness last November.
After receiving his statement of special educational needs, Cameron is now being supported by his home tutor, who accompanies him to class.
“He is observing in class and doing as much as he can, and he really enjoys being with his peers,” said his mum Natasha.
“He has gone back a year due to his illness but he has a good friend in that year who he enjoys being with.”
Natasha is hoping that Cameron will be cleared to undergo a further round of plasma exchange treatment or plasmapheresis, which she says temporarily improved his condition. The treatment involved extracting Cameron’s blood with a dialysis machine, separating the proteins which house the attacking antibodies and returning the blood to his body with newly-processed antibodies.
The family are also due to feature in an upcoming Medical Mysteries programme produced by Tigress Productions, to be screened in January.
In the meantime, they are holding a series of fundraising events to fund their son’s ongoing treatment.
“Cameron’s antibiotics from America alone cost £350 for a 30-day supply, so we have to keep fundraising,” explained Natasha.
“We will be holding a coffee morning in Ballyclare on November 28, then Peter Corry is organising a collection at the Waterfront Hall in December during his Music Box night.
“Fitness NI have approached us to offer help and Ballylumford Power Station have asked us to fill in an application form to receive £500 from their charity fund. Then in the Spring my former colleagues at M&S would like to do a bag pack, and the Mr Hullabaloo children’s theatre company has agreed to do a fundraising performance for us at the Courtyard theatre.
Busy Natasha is also setting up a Northern Ireland PANDAS charity to support other sufferers. For more information, visit http://thecameronlindsayappeal.weebly.com/. To donate, visit http://www.gofundme.com/o9lrao. To offer help, email firstname.lastname@example.org.