Testimonial

8-year old with Chronic Osteomyelitis of the Jaw 

"My daughter, Katherine is 8-years old. Her problem started when she consulted a 'school' dentist who said she required a filling in her tooth. After the filling, Katherine complained of pain in her jaw, headaches and continued to feel unwell.

The pain persisted so we decided to have the amalgam removed thinking that perhaps this was the problem and replaced it with a white filling substance. Pain persisted but the dentist said the tooth and gum were fine and their were no problems that they could see. I was told the pain would eventually settle.

Several months following, the pain continued. Then the fun starts!

I took Katherine back to our family doctor who said the problem was a dentistry issue and to go back to the dentist which we did. In the meantime my Naturopath commented that perhaps the problem was that the 'tooth was dying'. So off to the dentist again but this this time I took Katherine to a dentist who specialises in children using gas mixture as a form of anaesthesia.

The dentist drilled without using any from of sedation to determine exactly how far the tooth was potentially affected. We were amazed when the dentist was able to drill the entire tooth to the roots without Katherine experiencing any pain. I was told that Katherine's tooth was dead!

I requested that the tooth be removed. Even with the tooth removed Katherine still kept experiencing pain in the gum region. Back we went to the dentist who said that Katherine was probably experiencing a mild form of neurosis and implied that the pain was probably 'in her head'. This apparent 'ghost pain' did not get better but in fact got worse and for further 8-months we were running back and forwards to doctors, the Children's Hospital and various Specialists.

One of the specialist doctors' said that Katherine's tolerance to pain wasn't normal and that she shouldn't be experiencing any pain. This same doctor stated that 'she had me wrapped around her little finger and that I was imagining it'. Obviously I lost it!

Katherine was extremely upset and suffering continued pain that was getting worse. Both my husband and myself were very distressed because we were not getting any answers and being told it was all in our daughter's head and that she was manipulating us and the situation was unacceptable.

By January 2001, Katherine had developed swelling to her right temple region, we returned to the Children's Hospital where X rays were taken and suggested it was a localised abscess recommending antibiotics. When the swelling continued down into the cheek we immediately returned to our Specialist who continued the antibiotics.

The pain did not go away and the swelling continued down into the jaw which had also become grossly swollen. By April/May 2001 the pain was unreal and the swelling enormous. All of the front and back of her neck were swollen. The search continued. Eventually I found an older doctor who said blood tests were required. I was very upset by this new doctor's recommendation because I had asked our doctor about 3-months ago to have blood tests but he said nothing would show! Instead the doctor told me to give Katherine Panadol. Katherine had already been on Panadol since January 2001 with no change.

This new doctor immediately contacted us and Katherine was admitted into Flinders Hospital when he received Katherine's blood test results. Extensive blood tests, CT Scans, Bone scans and biopsy of the jaw revealed 'chronic infection and or inflammation'. Some of the reports stated that she might have other conditions including Fibrous Dysplasia.

The biopsy confirmed 'degenerative bone with active chronic inflammation in keeping with chronic osteomyelitis with a pathological fracture in the angle of the right mandible'.

She was put on a antibiotic drip for 2-weeks and followed with courses of antibiotics for the next 3-months. Unfortunately they didn't work, the pain and swelling was still there.

It was finally my Naturopath who suggested that we look at Hyperbaric Oxygen Therapy. We were sent to another Specialist and I mentioned it to him. His words were that 'it was not science proven', he also stated on another occasion that I raised the issue of Hyperbaric - 'the doctor at the Adelaide Hyperbaric facility would not accept Katherine because her condition did not fit the category of accepted conditions'. And again on another occasion he stated that 'she was too young and that her ears and head would not tolerate the sessions and that she might suffer further damage'.

The Specialist told us that Katherine's condition was extremely rare and there were only 4 other cases in Australia where an active infection had been resolved but chronic inflammation remained. I said to him 'why not give Hyperbaric Oxygen Therapy a go' but he was determined that Hyperbaric would not make any difference. The Specialist told us that he spoke to the hospital Hyperbaric facility they said exactly the same thing!

My husband had previously gone onto the internet and read a lot about osteomyelitis and the medical recommendation for Hyperbaric Oxygen Therapy. He even emailed several Hyperbaric facilities in the USA and they confirmed that Katherine's condition would be receptive to HBOT. They even gave recommendation as to how many session, what pressures etc. But the Specialist would not come to the party!

In fact we were told that Hyperbaric Therapy was approved for 'acute osteomyelitis' and also for 'osteonecrosis' which often occurs after cancer radiation therapy. We were informed that osteonecrosis is the condition when the blood supply into the bone is damaged with the likelihood that bone replacement including reconstructive plastic surgery is required to overcome the compromised area.

If Hyperbaric is paid for in the 'acute phase' and in the phase when the 'blood supply is totally disrupted' then why isn't is paid for the in-between stages!! No one could answer us. It appeared that Katherine was in-between these 'category stages of funding'. She has elements of necrosis but she also still has adequate blood flow to maintain the area. However, the fact is that she continues to suffer terrible pain and swelling as a result of the 'acute phase' of osteomyelitis.

So I lost it!! It was obvious that we would get the attention or an appropriate response unless we attempted to take some form of control. After two and half years later this child needs to be listened too. She has lost 2 years of her life because doctors would not listen to her or my husband and myself. Instead we were treated that we knew nothing and did not have the right to interfere with their opinion.

We were accepted into the Hyperbaric facility at Spinal Rehab in Melbourne and within the first day of receiving Hyperbaric Therapy the pain was noticeably reduced. Instead of the constant pain throughout the day Katherine did not complain until late that same night (8.30pm) and then the next night 12.00pm. By the third day of treatment she could actually open her mouth completely! This is the first time she has been able to do this since the infection went into her jaw.

Katherine has improved considerably in this initial 5-days of treatment. She has significantly reduced the amount and frequency of her pain medication. The appearance of her jaw has reduced about 20% since commencing HBOT. Her jaw is moving much freer. She can now touch her face and when being examined by the doctor the pain is noticeably less.

Her appetitive has also returned - all she wants to do now is 'eat, eat, eat'. This is amazing because she has lost so much weight since this ordeal began. Her weight had dropped to 20kgs. I can now see a 'V' in her face, her face is slowly coming back to normal.

This treatment has given us a fresh hope. Within only several days of treatment the results have been amazing. Pain has reduced, inflammation has reduced. Her forever swollen tonsils have also reduced considerably. But most of all Katherine's attitude has changed, she is laughing, becoming more confident as the days go by and we are all looking toward the day when her problem is resolved.

On behalf of Katherine - my husband and I are most grateful of the opportunity to be afforded this valuable treatment. It is unfortunate that similar facilities are not available within our own state of Adelaide!" - Andrea Fleming (mother)