JAMES AND MATTHEW - A MUM’S STORY
My eldest son, James became ill overnight in October 2005, when he was 12 years. He woke up feeling ill and within a week was unable to stand feeling dizzy, with headaches and nausea. His blood pressure was 188/160 and James was in hospital for seven days, MRI, blood tests, ECG and EEG were normal and nothing could be found to cause his symptoms. On telephone advice from Great Ormond Street and on medication to control BP, he was referred to a kidney specialist.
Numerous kidney scans showed no problems. In the meantime James was unable to attend school. Eventually he regained his strength to return to school but was unable to walk far or participate in sport. Prior to the illness he was so active. He played football for Southend United Youth team 3/4 times a week and was in all school sports teams. By April 2006 he was back at school more or less full-time.
In July 2006 his consultant decided it was his medication that was stopping him playing sports/exercising. In July 2006 his medication was changed and James started taking the new medication during the School Summer holidays. Within a few days he became very lethargic, which we put down to becoming a teenager. However, when he tried to go to school at the start of the new term he collapsed. When he sat or stood he became breathless with dizziness, headaches, nausea and tachycardia.
In September he was re-admitted to hospital, after being sent home from the local A&E. James was extensively tested and all tests were done lying down. One junior doctor mentioned a tilt table test but this was not performed. After 7 days they decided he had ‘white coat syndrome’. He was put back on a betablocker and released. In the next 3 months his medication changed every week until finally it levelled out. This time it took him a year to return to full-time education. In September 2007 he went back to school on a slightly reduced time table. He still felt very tired and experienced tachycardia in the evenings.
After he was released from hospital, I did some internet research and found two American autonomic disorder websites. Their information on POTS matched all James' symptoms. You can imagine our relief when we realised this is what he possibly could have. The literature and DVD we received from them was fantastic. In the meantime, in December 2006, James was referred to an adolescent specialist at a London hospital (who did not understand his symptoms and would not acknowledge POTS). We also spoke to Jenni at STARS who was very helpful and gave us some very useful advice on how to access treatment for the boys.
In April 2007, having got no further with James’ treatment we finally decided to pay for a private consultation for James to see a leading neurological consultant in London . He was fantastic, diagnosed POTS and James felt so relieved to see a doctor who knew and acknowledged his symptoms. Sadly, due to money shortages, we have not been able to continue paying for private treatment. I have had to give up work as a science/ special needs teacher to care for James and more recently his younger brother Matthew.
In March 2007 Matthew, aged 12, became very ill with a virus. Over the next 6 months he became slowly more and more ill with the symptoms of dizziness, nausea, severe headaches, extreme tiredness etc. We suspected that he also had POTS, (as yet undiagnosed although he is receiving the same treatment as James). Our GP has been very good indeed and in July 2007 he also thought that Matt had POTS and prescribed betablockers, but by September he was too ill to attend school. The doctors thought it could be Glandular Fever and referred him to an ME specialist in October 2007. Matt did not have ME and he was referred to a cardiologist who was confused by his symptoms and admitted that he knew nothing about POTS. He was also given a betablocker and continued to be monitored until July 2008 during which time his symptoms slowly improved and was attending school part time, though not doing sport, despite being a keen sportsman like his brother.
In March 2008 and on our GP's advice we appealed to our local PCT Complex Case Appeal Board to have the boys treated by a leading London neurologist on the NHS. They agreed to finance an NHS consultation for the boys. They selected three specialist consultants in this country. Their first choice was a consultant in St Albans who agreed to see the boys, there was also one in Glasgow and their third choice the London specialist will only see children privately.
In July 2008 James and Matthew had an NHS consultation with a cardiologist with an interest in autonomic disorders. He recommended that both boys take an isotonic fluid daily and to change the medication to a betablocker which was longer acting and with fewer side effects. He also suggested that both boys have a plasma volume measurement. They started taking the isotonic fluid immediately and the betablocker a Month later. Their progress will be monitored.
Within a week of starting the fluids, Matthew was like a different child. – he was ‘bored’ again. A word my husband and I had not heard since March 2007. He had energy and during the holidays began to play out with his friends. He still gets very tired and experiences tachycardia on standing but many of his symptoms have eased. As I write this he has attended his first full week at school since June 2007.
James has more energy and enjoyed a social life during this Summer 2008. Within twelve hours of taking the long lasting beta blocker he could feel it working in the evenings. On the first betablocker, James’ tachycardia would start again early evening as the medication wore off, making him feel unwell.
Neither boys have managed to return to any sport, nor do P.E at school currently, but just to see them happily back to school and starting to mix with their friends again is such a relief.
The battle to have them treated continues. James is under an adolescent consultant in London and receives NHS homeopathic treatment, and Matthew has been referred back to a paediatric cardiologist. However, we are just so happy they are currently feeling well.
By Donna Eley 10/9/08