HyperMED UPDATE - Katherine
Fleming - Chronic Osteomyelitis 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)