We're desperate to get some help for our nephew, Valentino.
Valentino is a fun loving 15 year old boy who loves gymnastics, running, football, video games and hanging out with his friends. He was looking forward to taking up parkour (free running).
During the last 8 months, he has been in constant pain and has lost the ability to walk unaided. He no longer sees his friends, and is unable to go to school and enjoy the things a normal 15 year old would do.
The family have spent months visiting the GP and hospitals via the NHS, but so far these have been unable to find a diagnosis in order to even start treating his condition.
As a result his parents have taken him to various private paediatricians, neurologists and diagnosticians, all of whom have their own theories as to what could be causing his condition, the theories so far have been: Gastritis, Guillain Barré Syndrome, Lyme Disease, Chronic Fatigue Syndrome (ME) but so far none have conclusively arrived at a diagnosis.
8 months on and almost £20,000 spent on treatments and remedies already, Valentino's health is still declining with no answers forthcoming. All savings have now been spent and the family are no closer to finding a diagnosis.
It seems that not only has the money run out, but the list of possible conditions is being eliminated, too.
The most recent visit has been with a practitioner in London who has suggested that Valentino may have an infection that has somehow targeted his nervous system. The test and investigation phase here is another £2,700 before any treatments are prescribed.
A donation to help with his cause would be most gratefully received, however, what the family would really like is help identifying his condition to arrive at a diagnosis.
If you, your friends or any family members have suffered with a condition similar to his and have recovered or are recovering, please please comment on this page and let us know. Perhaps we'll find some information that will point us in the right direction.
I'll list the cause of events and his deterioration further down following the videos to see if anyone can identify with it.
This is Valentino's story.... we just hope that with some help we can make it a happy ending. Please help us find a diagnosis. Thank you. Nikki, Georgie & Stel (the uncles and aunts).
VALENTINO IN OCTOBER 2017 - PRIOR TO CONDITION
VALENTINO IN SEPTEMBER 2018 - CURRENT CONDITION
A detailed account of the last 8 months:
January 2018 Valentino came home from school with pain in the centre of his chest and a burning pain across the width of his chest. He felt generally tired and unwell.
Over a period of a week, his condition worsened, his eyelids appeared to have drooped and he was fatigued.
During the week, the emergency walk in clinic checked his blood pressure, listened to his heart and ran through symptoms but couldn't pinpoint a cause.
2 days later, as his fatigue had worsened and Valentino wasn't even able to hold a conversation without exhausting himself, he was taken to Accident and Emergency who carried out another blood pressure test and listened to his heart. An X-Ray of his chest was carried out as was an ECG and the results came back normal. The Doctor on the ward put his condition down to Gastritis and sent Valentino home.
February 2018 Within a week, Valentino went back to the GP; the GP agreed with the A&E doctor's diagnosis of Gastritis and prescribed Omeprazole to treat acid reflux. Valentino finished the course in 2 weeks with no improvement, in fact, he was getting weaker by the day and started to show weakness in his body, particularly his legs.
After further visits to the GP, he was referred to the paediatric team at the hospital.
He had a series of blood tests and examinations all returning normal. The doctors still unsure of what the issue could be.
The doctors asked if he had suffered any trauma recently at home or school suggesting that this may be psychological.
March 2018 With no improvement or diagnoses from the doctors, and Valentino's parents desperate for answers they took Valentino to a private paediatrician. He examined Valentino and could find no problem but increased his dosage of Omeprazole to rule out any oesophageal issues.
April 2018 This course of Omeprazole lasted for 2 weeks and his condition had deteriorated even further. He now needed support to walk around the house, using furniture or a family member to support him.
Valentino's mother contacted the paediatrician again to advise him that he was now unable to walk.
The paediatrician strongly recommended a private neurologist in London as his walking had been badly affected.
The neurologist did urine and blood tests and carried out a thorough physical examination of Valentino. Her checks and all test results came back normal. She then suggested they go to Great Ormond Street hospital to carry out a private EMG / NCV test (muscle and nerve test).
The EMG / NCV test was carried out 2 weeks later, again all results came back normal. The neurologist therefore recommended a cardiologist to carry out a Echograph.
By this point the funds were quickly dwindling; so rather than spending £800 to carry out this test in the UK, the family travelled to Cyprus to have this test carried out there for less than a quarter of the price.
May 2018 The family travelled with Valentino to Cardiologist and Professor of Medicine in Cyprus. He suggested carrying out an MRI scan of the Brain, a Lumbar puncture, an EEG and special tests for Borrelia and Coxiella.
The family were also recommended to go and see a holistic doctor in Cyprus. He carried out a full body examination. He carried out a test using a Vega machine and detected possible liver toxicity and Lyme disease.
This holistic doctor recommended a course of supplements to strengthen his immune system to fight off any toxicity or infections in his body (including Lyme). The supplements alone cost £1200 per month. After almost 4 months taking these supplements, no changes or improvements have been seen.
June 2018 Finally, after waiting 4 months, the first NHS appointment came through for the paediatrics team at the hospital in the UK. He was kept in for 4 days.
During his stay, they carried out the following blood tests: FBC, U&Es, CK, Rheumatoid Factor, ANA, ANCA, Lyme disease serology, TTG, ESR, Vitamin D, Bone Profile, Troponin T, Vitamin B12, Folate, TFTs, CRP, EBV IgG +ve, IgM – ve.
All the blood tests came back normal.
He also had a Brain and Spine MRI – results came back normal
The physiotherapist gave Valentino exercises to try and reduce muscle wastage in his legs as he wasn’t able to walk, and agreed that he would need weekly visits with a physiotherapist and psychologist. 3 months on, and not one appointment for physio or psychologist has come through.
After 4 days of tests at the hospital, nothing certain could be found and so with no further explanations and they’re not too sure what else to check, the doctors are putting it down to possible CFS (Chronic fatigue syndrome) – they are referring him to the CFS clinic at UCLH. Yet again, after almost four months on and no appointments for the CFS team have come through.
August 2018 Continuing with the supplements prescribed by the holistic doctor – a further visit with him in August showed zero improvement.
September 2018 The family was recommended to visit Consultant Medical Herbalist in Harley Street, London. She specialises in identifying infections that could affect the nervous system. Bloods are taken here and sent to the USA and Germany for screening. Apparently, these tests are able to pick up infections that aren’t usually picked up by blood tests carried out in the UK. This consultant believes that the infections attacking his nervous system could possibly be caused by mould.
The tests recommended cost £2800 BEFORE any treatments are carried out or medication is prescribed.