My son David is almost half way through his latest treatment to cure the chronic osteomyelitis which has plagued his young life for almost ten years; it is a last resort really, and we are pinning all our hopes that hyperbaric oxygen therapy will work.
David suffers from the painful infection in his jawbone which causes it to swell and the bone is now scarred. He has had a rotten time of it, and his consultant suggested we try hyperbaric oxygen. It was one of his first suggestions when we first met at Great Ormond Street Hospital where David was treated, but we thought that long-term antibiotics had done the trick – until the pain and swelling returned again with a vengeance last year.
The treatment is provided at Whipps Cross Hospital in London where David has to have at least 60 2 hour sessions providing 2 x 45 minute bursts of oxygen. David sits in the oxygen chamber wearing a mask breathing in 100% oxygen, while he relaxes with a book. He is not alone. A dozen patients can sit inside the chamber and be treated at the same time, and David’s chamber-mates include an amusing celebrity TV sporting figure. A doctor has to be present at all times in case there are complications. David has felt recurring pain in his jaw, but has been told this is because the treatment is hitting the spot – and we hope this is true!
Hyperbaric oxygen was originally developed as a treatment for diving disorders, such as decompression sickness and gas embolism. It is used to aid healing as it destroys disease-causing microorganisms, and is claimed to cure cancer, relieve chronic fatigue syndrome, and decreases allergy symptoms too. It is also used for animals, especially race horses, and even cats and dogs to strengthen their systems prior to surgery and then accelerate healing post surgery.
One other person hoping to have this treatment is 19-year-old Andrew from Scotland. His very caring sister Sarah wrote asking my advice about osteomyelitis treatment for her brother who has suffered terribly from the infection for eight years. I could not believe how much this poor boy has suffered for so long. I found it heart breaking, and cannot believe that more has not been done to help him. This is what Sarah says:
“He has it in his right arm from the shoulder to the elbow. His recent MRI scan showed the bone looking like it was moth eaten if you know what I mean, patchy in places, dark and light.
“It all started with his arm swelling up and the doctors had no idea what it was they had said to my parents that they were 99% sure it was a very rare form of cancer that only one other child in Scotland had. After more extensive test and a few weeks of restless nights for my parents, he was then diagnosed with osteomyelites.
“His arm just hang there like he can’t use it , he can if he wants to but if he was just standing speaking to you it falls.
“I’m looking for information on different treatments that he could be getting except from taking pain killers, Amoxicillin, Flouxocillian and other various antibiotics. I feel every time he has a bad spell he will go to the doctors be given stronger pain killers be told that if its still sore in 3 days time, call us back and we will refer you to hospital where he will be given antibiotics intravenously for two or three days then sent home until the process starts all over again in two or three months time as it has been constant back and forward to hospital and doctors for two years.
“It’s heart breaking to see him like this. He is lifeless skinny and limp. He has has to give up collage and various jobs as he starts off well then gets ill. I feel the doctors at the local hospital are brushing it under the carpet. I need to know if there are any other treatments that your son was given is he well now?”
After an email exchange, I suggested that Andrew should try the hyperbaric oxygen chamber too, and Andrew is waiting to hear for confirmation whether this treatment can made available for him; initially he is only being offered an hour every day for the first month – half the treatment offered to David, though this will be reviewed afterwards. Let’s hope this treatment is made available for Andrew, and that the therapy will continue if an improvement is shown.
“I just wonder if I can get the information from one Google search and an email, why can’t they put a little effort in. Maybe it’s a case of he is just another number and they cant make exceptions for him as they would have to do it for everyone,” said Sarah after following up my suggestion.
I wonder too!! One can’t help questioning whether there is a north-south divide here on treatment available for NHS patients.