Where are the world’s best osteomyelitis experts? I ask this because my son David has suffered from chronic osteomyelitis in his left mandible, his jaw, for more than 11 years. It all started from an abscess in the root of a tooth, and has plagued him for half of his young life.

Yesterday David, who is now 24, had an appointment with his consultant Dr Peter Ayliffe at the Eastman Dental  Hospital in London. David has been in his care since early 2006 when he was referred initially to Mr Ayliffe’s Maxillofacial Clinic at Great Ormond Street Hospital, whose work we cannot fault.

Unfortunately for David, when he was first referred to the Maxillofacial Clinic at Addenbrooke’s Hospital, Cambridge following the abscess, his condition was not diagnosed for a very long time, and even after a bone biopsy showed David had osteomyelitis, he was not treated with antibiotics. I asked his consultant David Adlam if David could have antibiotics and was told you could not treat the bone with antibiotics. On one occasion, even though David’s jaw was considerably swollen and his jawbone visibly protruded, when we returned to the clinic as an emergency, we saw a senior registrar who refused to give David an X-ray and referred him for cognitive therapy to help him manage the pain in his mind. For two-and-a-half years while David was under Mr Adlam’s care, the only medication he took to manage the pain and inflamation was paracetamol and Diclofenac. I remember David being told it was good for him to feel this pain, as if it was part of the healing process. I saw the agony David was in, rolling on the floor in unbearable pain which I told the Maxillofacial team about. David was repeatedly asked by them if he was happy at school.

Naturally I was distraught at David’s prolonged suffering and the suggestion that David should cope with his considerable pain with cognitive therapy and requested an urgent second opinion and referral to Great Ormond Street Hospital. Once seen there by Dr Ayliffe, David was immediately given a bone scan using nuclear medicine which had never been offered to him at Addenbrooke’s and he was immediately put on strong antibiotics, Doxycyline, which he has been taking on and off ever since.

At one stage it looked promising as David was pain free for a couple of years after taking the antibiotics, thankfully while he was studying at Hull University, but the pain returned. At the end of 2013 David even tried therapy in the hyperbaric oxygen chamber at Whipp’s Cross Hospital for a gruelling three months on top of his full time job, and again, the outcome looked promising, except a year later the pain returned with a vengeance. David’s jaw was inflamed and swollen and his teeth were raised.

As a result, David had another bone biopsy at the end of last year at UCH Hospital and we had a follow up meeting yesterday with Dr Ayliffe to discuss the results. David is taking Doxycycline again, and continues to feel pain on some days, yet never taking a day off work. What options are there for David now? Mr Ayliffe could not give us a long term prognosis as David’s condition is apparently very rare, and one of only two cases which Dr Ayliffe says he has not been able to treat successfully.

I suggested a second opinion with an osteomyelitis expert, and Dr Ayliffe replied that he sees most osteomyelitis cases with young people in the country, but felt this was a good idea and agreed he would like a second opinion too; he is writing to a highly regarded colleague, Prof Piet Haers, asking if he will help.

Another suggestion is that David should be treated with ultrasound provided to oncology patients, but Mr Ayliffe said he did not know if this would be available on the NHS. The treatment has had positive results following a US study 20 years ago, but, unfortunately, there are no up-to-date osteomyelitis studies relating to the mandible as it is not “a sexy” topic, and is now a very rare infection.

Obviously we want to avoid major surgery to David’s jaw. But how can he now be treated successfully so he does not suffer for the rest of his life? Where are the best osteomyelitis experts in the world? Mr Ayliffe is very open to suggestions as David’s case is baffling, so if anyone can help, please do let me know.

People ask why has David’s infection become so deep rooted and has lasted so long. There are some clues on the NHS website which states it is crucial to diagnose the infection early and treat it effectively:

“Osteomyelitis can become chronic osteomyelitis if not treated quickly, as the bones can become permanently damaged, resulting in persistent pain and loss of function.

“If diagnosed early, osteomyelitis can be treated with antibiotics for at least four to six weeks. At first, you may have to stay in hospital to receive antibiotics, but you should be able to take them at home when you start to get better.

“In severe or chronic cases of osteomyelitis, surgery may be used in combination with antibiotics. Surgery is most often used to remove damaged bone and drain pus from wounds.”

While David was under the care of Mr Adlam’s Maxillofacial Clinic for two-and-a-half years, he was never given antibiotics. It’s not unreasonable to think that this could have led to David’s infection becoming chronic and deep seated. I see no mention on the NHS website recommending cognitive therapy to help manage osteomyelitis for teenage boys.

Despite David’s long running painful condition, he remains positive and upbeat, he never complains.  That’s David’s nature, he doesn’t need cognitive therapy to help him deal with pain by being training to think positively. We are also grateful to Dr Ayliffe for his continued care and the efforts he is making to cure this  infection once and for all.

*I do not intend to knock Addenbrooke’s Hospital, they have fantastic hard working and dedicated staff, I am simply describing our experience regarding this matter. I am a supporter of The Sick Children’s Trust, which has provided two homes on Addenbrooke’s site for families to stay in if they have seriously ill children at the hospital. I stayed in a similar apartment once opposite Great Ormond Street Hospital and know how appreciated they are during these very anxious moments.

*Update 18 March: We returned to see the consultant to discuss the referral. It wasn’t the best day. No referral has come through for David’s second opinion and no info either about the ultrasound which was mentioned at or last meeting, Mr Ayliffe kept saying it was only available on the NHS. David is being booked for a PET scan and we will know afterwards about his osteomyelitis.

I discussed this with my GP afterwards and he said that David most definitely should have a second opinion, and that ultrasound could be made available for him on the NHS if Mr Ayliffe applied for it and made a good case for David, which obviously he deserves. My view is, supported by my GP, that regardless of the outcome of the PET scan, David is not cured until he no longer needs to take antibiotics every day. Antibiotics merely suppress the infection, and I would like David to be cured of this for ever. We will try and have David referred as a private patient for his second opinion to speed this up.

*Update 24 March: So pleased I have managed to arrange a private consultation for David with Prof Haers on 8 April. A mum has to to do her best for her child.

*Update 26 April: The meeting with Prof Haers was most insightful and he has treated severe case like this  before. We were told that David has dead bone in his jaw which at some stage will need to be removed, that the blood cannot carry antibiotics there. He believes David may be fine just taking doxycycline for the next 18-24 months, but that treatment will be needed at some stage, antibiotics is not the long term answer. This is what I believed too, hence the reason for seeking a second opinion.

The treatment options he suggested in his letter to us states:

“Treatment options would in my view vonsist in wide excision of all periosteal tissue, complete decortification from the midline of the mandible towards the left angle so that hopefully new peristeal blood supply gets installed this time from muscular origin. At the same time, inlay of pellets with antibiotics for long-term treatment of at least 12 months. (I had read about this during my internet search for treatment of osteomyelitis, but it has never been mentioned before).

“The risk of this procedure is that it can lead to a pathological fracture of the mandible, that signs and symptoms of recurring chronic infection would disappear, but there is no guarantee whatsoever that one would be able to eliminate all remaining bacteria from the osteosclerotic zone below the left premolars and the first molars, nor is there any guarantee that it would definitively settle the pains, which is most likely a consequence also of narrowing and compression of the mandibular canal by the surrounding sclerotic bone.”

It means that despite this extensive treatment, there is no certainly of a cure and David could end up with a fractured jawbone, and possibly disfigurement. Prof Haers only works privately on osteomyelitis, this treatment from him is not available on the NHS. I went back to my GP to discuss the consultation and he reckons the treatment would cost £30,000 – £40,000. David does not have private health insurance and this cost is way beyond our means.

We are returning to see Peter Ayliffe at the Great Eastman Clinic to discuss this on 13 May. (Appointment postponed to 10 June).

Update 10 June 2015: It was an encouraging consultation for David as Mr Ayliffe made a new suggestion, that David has the infected jaw removed and a bioglass jaw fitted. This is composite glass that naturally promotes bone formation and reduces infection to 1%. It’s at the very early stages of clinical trials, but it sounds exciting, and could be the perfect solution. We have to wait a little longer to see the outcome of clinical trials, it is not something that needs to be done immediately, but certainly sounds preferable to the other surgery. I’m so proud of David who remains positive and update. This is real state-of-the-art maxillofacial surgery and Mr Ayliffe is the only person in the world to be working this way, so we are indeed very lucky and feel more hopeful.

In the meantime, David has to have a tooth removed where the infection has spread and is causing David pain.

Update 27 July 2017: David is now living in Hull and continues to have bouts of osteomyelitis in his jaw, but the pain is not severe and are thought to be caused by residue and he says he can manage the pain. Unfortunately, a hip X-ray for a hip impingement showed up further problems – 0steomyelitis of the hip, it has spread there – he is waiting for another scan to look into it in more detail. This came as a complete shock, he is not in pain there and we had no idea at all. Some personal good news for David, he is getting married in September in Italy to his university sweetheart!

Poor David with his swollen jaw after his bone biopsy at Addenbrooke’s Hospital in July 2004.