Hyperbaric Oxygen Therapy (HBOT)
A shameful secret. This therapy has helped thousands
of children and adults, from just making life a little
more comfortable to amazing recoveries – read them for
yourselves at the sites at the foot of this page.
If you are the parent of a child with a damaged brain then
can I suggest you start with the MUMs site and what is on offer
here in the UK – I am trying to get more info to include here. On this page you will find information on:
HOW IT WORKS
JACK’S HBOT HISTORY
Jack's HBOT Round 1 - October 2007 to March 2008
Jack's HBOT Round 2 - April – May 2008
Jack's HBOT Round 3 - July – Sept 2008
HOW IT WORKS
During modern HBOT, the patient breathes pure, 100% oxygen under increased atmospheric pressure. The air we normally breathe contains only 19-21% of this essential element; via HBOT, the concentration of pure oxygen dissolved into the bloodstream is dramatically increased (up to 2,000%), with virtually no energy expenditure. In addition to the blood, all body fluids - including the vital lymph and cerebrospinal fluids - are infused with the healing benefits of this molecular oxygen. This oxygen can then: (a) reach bone and tissue which are inaccessible to red blood cells, (b) enhance white blood cell function, and (c) promote the formation of new capillary and peripheral blood vessels. The result is increased infection control, and faster healing of a wide range of conditions.
NOT FOR THE FAINT HEARTED
You will need to be dedicated, not suffer from claustrophobia, or have ear or certain lung problems. HBOT is usually the last hope, which is wrong. It should be available within hours of the initial insult for sufferers of hypoxia, stroke, head injury, and there is strong evidence that it has been shown to reverse or at least lead to a significant recovery – do the research for yourself, no one else has been able to offer even a glimmer of hope, and I do hope that as it has helped so many other children with more complications and less than Jack that it will help him even more than it has already.
I first came across HBOT in July 2006 at Leicester Royal Infirmary about a month or so after his brain injury having been allowed to use the ward computer to search the internet in the evenings, I read some papers written by Professor Philip James and couldn’t believe some of the outcomes. I mentioned this to the registrar and showed him the papers, he dismissed it saying that it is not done in this country or was it safe. At that time we were still in despair and disbelief and trying to come to terms with what had happened to our lovely boy that I did not question what he said. Also, it would cost thousands of pounds, the advice was to get to rehab and I remember saying to my husband that perhaps we could look into it if all else fails, we just wanted to get out of there and get him into rehab too.
With hind sight and all the info and experiences we have now had and the repeated failings and neglect on the part of the professionals to do what was needed, we should have taken him home, still able to eat almost a third of his daily intake orally and drink small amounts easily (he was even starting to suck through a straw), he could also move his legs and toes easier to command – all these re-learnt skills were lost to abnormal tone problems and reflux which took a nurse to initially diagnose , but by then it was too late.
JACK’S HBOT HISTORY
Jack has now had over 70 1 hour sessions so far (July 2008),
ROUND 1 - October 2007 to March 2008
36 one hour sessions at 1.7 ata in a multiplace chamber at MS Therapy Centre in Coventry, West Midlands, occasionally 3 times a week but usually 1 or 2, having done more research of case studies from the US, the most improvements come from 5 days a week and one or more sessions a day. However after just 2 sessions a spell of bad nights was put to rest (we get very few now still, once a month at the most), but most significantly was the reduction in the spasticity in his arms and legs after about 5 sessions, his arms that were usually bent up to his chest during the day and only slightly less at night were resting in his lap and his fingers more relaxed too, whilst sleeping his arms would easily rest at his sides.
Evidence of this is that in October 2007 just before we started HBOT we were referred to an Orthopaedic consultant at Walsgrave Hospital, Coventry where he had a full assessment and I was given the news that his tone was a problem and he needed to have a Baclofen pump fitted as well as more Botox under general anaesthetic, however the consultant was unsure how to go about it due to Jack’s cardiac problems and any complications arising and as there is no paediatric cardiac unit there (we had been advised that any surgery would be best done at Great Ormond Street), she was going to defer to the Neuro team at Nottingham hospital for further advice on the best approach.
We waited and went to see another consultant at Nottingham who informed me that Jack did not have tonal abnormalities and that his extension pattern that he goes into was a response to pain or discomfort, he was concerned about Jack’s Knee caps that sit higher than they should and that the lack of bend at the knee (I think it was about 110 degrees by then) which were due to muscular contractures, he confirmed that this would have been brought about by not having correct seating in the early stages (see Jack’s story) and being left on a bed with his legs outstretched, I was so cross I broke down very embarrassingly in front of him as he had confirmed my instincts.
His solution was to look at seeing if a CCD (Contractual Correction Device) would help, but as these were normally designed for straightening out legs he was not sure and referred us for assessment at the ORLAU Centre in Oswestry, we have been twice already and Jack has been given two very strange looking contraptions that gently make his legs bend which he tolerates now for an hour a day – we will have to see how he gets on.
More details of ORLAU
http://www.rjah.nhs.uk/Default.aspx?alias=www.rjah.nhs.uk/orlau
His bowels do seem to benefit too although this can be intermittent.
His head control improved too, I sat with him on my lap watching his old school’s Christmas concert and he sat with his held up and looking ahead on and off for at least 20minutes (5 mins at his best), again I got emotional – I have learned to wear waterproof mascara – you never know when a moment of sheer happiness can strike or utter despair and longing!
Giggles are back too, the shoulder shaking sort where no sound comes out for a while and then follow screams and squeals of delight to almost anything, jokes, funny stories, silly sounds – especially burps and fa*ts!!!!
ROUND 2 April – May 2008
Managed to find someone with a ‘soft bag’ portable chamber that he was prepared to rent out, ironically it was the same one that I was looking into to add to our wish list (costs about £10k plus so a long wait). Jack and I have done another 40 dives usually 1 hour at 1.3 ata. Arms and legs even more relaxed and legs now bend to 80 degrees, when we pick him up now his arms actually hang underneath him – need to be careful as they get in the way. It was so much easier having it in our own home, as before it could take between 3 and four hours including the 60 miles round trip for each session to get to and from the centre as well as time off school (I know it’s not far by some standards, but I do every dive on my own and it can be quite hard going, especially on the ears when you have a cold)
We wanted to have a gap before doing another round, so one month of no HBOT and then planned to have a weekly session at MS Therapy Centre again but only managed two sessions from end of June to end of July. We did notice that Jacks legs and arms did start to get a bit stiffer, but have noticed quicker responses and laughs easier too, also Jack used to have a shudder that he would do, like the feeling we get when we say ‘someone has walked over my grave’, Jack’s dad remarked that we had not seen one for months now.
They do say you can still get some benefits later on once a course has finished, but I have also read a lot of testimonials where regression is common but is usually rectified and becomes permanent with future courses.
ROUND 3 July – Aug 2008
The chamber has arrived, and I am sharing it with my friend and her son who is on the Autistic spectrum as it can help with that too – WATCH THIS SPACE FOR UPDATES.
“The only safe thing is to take a chance”
Useful links:
MUMs Website (US): http://www.netnet.net/mums/Whyhbo.htm
Rapid Recovery Hyperbarics (US): http://www.hbot4u.com/whatishbot.html
Ocean Hyperbaric Neurologic Center(US): http://www.oceanhbo.com/client/index.htm
A Breath for Life (UK): http://www.abreathforlife.org/sites/abfl.nsf/homepages/homepage
Isle of Man Hyperbaric Medical Facility (UK): http://www.hboman.com/
MS Therapy Centres (UK):
http://www.ms-selfhelp.org/html/welcome.html
From HBOT 2008 Conference: http://hbot2008.com/hbot_history.php
