a child with a brain injury carries all their broken bits inside
Summer 2016 update Latest test results show his strep levels are back up to 800 and rising! We still have not been offered any new treatment however we have been referred to an infectious diseases specialist and have been referred to London to see a doc there. However everything on the NHS is so frustratingly slow!!! While we are waiting there is a new round of antibodies wreaking HAVOC in his brain. He's already noticed how he can't do English at all since his flare in February. Sometimes this illness really makes me want to SCREAM...........
We really need to kick start our fundraising again, the USA trip used our funds all up! If anyone has any ideas or would like to run an event please contact me. I can provide t-shirts, official collection tins & buckets, info flyers and information display boards.
What Happened to our son?
Until February 28th 2014 our beloved 11 year old son was a normal healthy functioning child. Straight A student, high achieving sportsman in cricket, football & golf. He was a confident, mature & very likeable young man. Looking forward to starting Grammar school, full of plans for the next, more independent stage of his life. However those plans were completely derailed during half term week in February 2014 when he suffered an earthquake in his brain.
He became critically ill and was hospitalised a few days later, it took 3 weeks to stabilise him in order to administer emergency treatment. When his blood results came back his strep levels were through the roof. This is when they diagnosed the PANDAS and Auto Immune Enchphelitis. Essentially when Cameron's body detected the strep, his immune system turned on itself. When antibodies are produced that are supposed to fight the strep, for some reason a cross reaction happens and the antibodies get misdirected to the brain. It's thought the blood brain barrier in PANDAS children is weakened, allowing the antibodies to cross over into his inner brain. There they launch a sustained attack on the brain, mainly the Basal Ganglia. Tests showed Cameron was positive for basal ganglia antibodies.
We watched the son we knew disappear before our eyes in a matter of days. Our lives stopped. Eventually when we would get home for a while from hospital life was upside down. Eating, sleeping, showering all those thugs you take for granted just stopped for us, we lived minute by minute. Cameron couldn't walk, dress, eat, wash, nothing. He was in so much pain and distress. He would just scream for hours on end every night to "please make it stop" (see video footage page). Cameron had the most extreme type of PANDAS - 'The Exorcist Syndrome', a very apt but saddly extremely accurate description of what our precious boy was living through.
We relied on the kindness of friends and family to help with our younger daughter and actually help us get things like mess, food, toilet roll etc as Cameron couldn't leave the house for 8 months other than hospital. Trying to kill himself, screaming in pain, giving me a black eye or needing to be restrained for hours on end became a nightly occurrence. They were dark dark times, many many of those nights we will take to our graves with us because unless you lived them words cannot recreate the horrific nightmare you felt you were living in.
He has been left with an acquired brain injury that is life limiting. We got the opportunity to meet with one of the leading experts in this field in October 2014, when he was in Dublin for the first ever PANDAS Ireland conference. He believed he could get Cameron to a better place than he was then although he wouldnt say 100% better, because that's impossible to know. There were a huge range of tests that needed done to get to the bottom of things. However it took us nearly another year to raise the funds needed to make the USA trip.
Unfortunately this was precious time as far as healing was concerned, he suffered another relapse in March 2015 and we were MIRACULOUSLY successful at obtaining one round of plasmapheresis on the NHS, this led us into a wonderful sense of false security for 6 weeks, the 'impossible gold dust #doesitreallyexist treatment' !!! He was only the 4th child in the uk to receive it for PANDAS and the 1st in NI (Please see our treatment page for more info in this fascinating treatment process). It gave us our boy back, we started to be able to live our lives again, we couldn't believe it, the psychiatric symptoms practically disappeared, as I said to the consultant he did not beat me up or go for a knife for 6 weeks which was major progress!
Alas the recovery was short lived, after 5/6 weeks Cameron's blood started to remake itself and back came all the symptoms with a vengeance (apart from the choreiform body contortions). Our boy disappeared again.
By the time we were able to get to USA in July/August 2015 we knew that the longer it took us to get him treatment the more possibility of permanent damage there would be. However our neurologist in the USA was cautiously optimistic that with access to the right 'Big Guns' treatment Cameron could make a reasonable recovery.
On returning from the USA we were all geared up with our treatment plan ready for the fight, because a fight it would be! Convincing sceptical doctors to administer drugs that didn't have NICE protocol for this condition (well the flipping condition was not even properly recognised never mind the drugs sufferers needed!!!). However we chased our medical team in Belfast from September 2015 to spring 2016, we could not obtain an appointment for Cameron earlier than May, not even offering to pay the neurologist privately. Cameron took another relapse in February but no more treatment was given to him. Our team have flatly refused to give more of the gold dust treatment Plasmapheris. Their reason - "we believe it's too late to treat, it would make no difference to him clinically(*) The brain damage is just something you're going to have to live with". All they want to offer him now is psychiatric support and anti-psychotic medications. This is NOT appropriate for PANDAS children long term. It's NOT a mental illness, it has a MEDICAL cause. Part of the USA treatment plan was to get him an urgent tonsillectomy and adenoid removal. As we would have had to wait 45 weeks for an NHS appointment we paid for this surgery privately from fundraising.
*WE DO NOT BELIEVE THIS IS THE TRUE REASONING BEHIND REFUSING CAMERON MORE TREATMENT, WE BELIEVE IT IS A FINACIAL DECISION...........
By drugs I refer to antibiotics, very powerful non mainstream ones. There is overwhelming anecdotal evidence from USA that early administration of the correct one of these increases recovery massively and can improve a child's symptoms within weeks. However we have never been able to obtain these on the NHS, our USA doc was able to send us home with a month supply but that was 2 years after diagnosis and 4 weeks was way too short. However it helped manage Cameron through his throat surgery in Dec 2015.
Cameron was not able to join his peers and take up his grammar school place that he worked so hard for, in September 2014 we attempted a few hours a week at school for him but that had disastrous consequences and he deteriorated dramatically. In September 2015 he tried again, just 4-6 hours a WEEK. However by this time we had been able to get him a full time helper and it went better. However it was difficult to keep it consistent, some weeks he could do it and some he couldn't. He has a home teacher provided by the education board for a few hours a week as well. Although he was not able to attend school for the summer term, he was too ill.
We have been told Cameron will never return to school for more than a few hours a week, this will have HUGE implications for his future. As a mum my mind goes into overtime when I think of what's going to happen my son in the future without exams and basic qualifications. And with the difficulties dealing with daily life that he now has. A job? A relationship? Living independently? This is a boy who was deciding between medicine, dentistry and engineering............
Cameron suffers daily from both his ongoing PANDAS and the brain injury it's initial attack left. He suffers chronic pain in his limbs & chronic fatigue. He struggles to cope with daily life, from getting dressed, packing a bag, and eating. He suffers extreme psychiatric symptoms that are heartbreakingly distressing in one so young. And he has been left with significant damage in key areas of his brain, his working memory, co-ordination, short term memory, verbal processing and processing speeds and decision making have all been dramatically impacted. He can no longer read a book. We have spent months in the children's hospital, Cameron received Immunoglobulin blood treatment , that made him very sick. This helps kill off the attacking antibodies. However our Paediatric Neurology team can only do so much, they are constrained by the limitations of the NHS, they just don't have the specialised expertise on this condition or resources to get our son back to health. They have never treated anyone as symptomatic as Cameron with this condition. Which is completely understandable as the experts in this condition are found in areas of large population density. Cameron is on a complex drug regime which gives him some control over some of his symptoms. However the drugs aren't getting him better, they are just managing him, he requires regular complicated testing of his blood & brain serum in Copenhagen, (we access this privately through a doctor in Dublin) the results of these tests detemine what the levels of crucial elements are in his brain and help direct treatment. The experts in this rare auto immune condition are mainly found in the USA, we were fortunate enough to get Cameron there last summer (2015) where he had comprehensive testing and we sought first hand advice from an expert. However the cost of the treatments in the USA that Cameron needs is completely cost prohibitive - $25,000 per go, and Cameron needs at least 4-6 with a possibility of him needing long term maintenance of it. But they believe they can get our boy better! They believe they can get Cameron his life back. Thank you for any help and support you can offer.