>>> joanne <[log in to unmask]> 09/09/00 12:31PM >>>
> << The state attorney
>  general in turn hired a private attorney at a cost of $300 an hour to
keep
>  our child away from a $150/hour, proven treatment that has a legal right
to
>  under federal law.

HBOT has not been proven to cure CP. Many parents see gains with HBOT but
none claim that the children have been cured. Yvonne should speak to this
issue as she has done HBOT with her son and has seen positive results from
the  HBOT. I have never heard her claim he was cured though.
Joanne>>>>>>

I have been wanting to write this for a while now. (Sorry for the cross post) Lately HBOT has been a hot topic on CPParent list. I have been dismayed at the way this therapy is being portrayed - almost a fanaticism by some proponents and some opponents. I have hesitated to speak up but it has been bothering me so here goes... 

     Although I believe HBOT (or HBO) is useful for many children with CP - 
IT IS BY NO MEANS A CURE !!!!! (CAPS INTENDED)
     I have studied this therapy extensively and do believe it has merit but 
perhaps not for all children.  As CP results from so many causes and has such a wide range of outcomes in terms of physical and cognitive abilities no one therapy can be right for everyone. The more medical problems a child has in addition to their CP, the more complicated their treatment with any therapy. Each family's situation also difffers in terms of resources, financial and otherwise as well. 
     Most parents I have spoken with who have tried HBOT have seen 
appreciable changes in their children but results vary from  relatively minor 
changes in alertness or quality of sleep (although even these minor changes 
can be significant or even miraculous to some parents!!!) to major 
improvement in gross motor functioning (sitting, standing, walking...). I 
have yet to hear of anyone being cured. Even with the most dramatic results 
most people continue with the therapy which tends to make me think that the results may not be permanent or may require "boosting" or maintenance. I don't believe this is neccessarily a reason not to pursue this therapy - look 
at the other traditional therapies - NONE are one shot deals with the 
possible exception of very invasive surgical procedures. I also have yet to 
hear from one parent directly who reported that HBOT made their child worse in terms of their CP. (If anyone is out there I would sincerely love to hear your story.)
     Every therapy has some risks involved - HBOT is no exception. But at the pressures involved, the risks of barotrauma (damage to lungs or ears due to the increased pressures), are extremely low. Treatment for neurological issues with HBOT is at 1.25 to 1.75 ata about the equivalent of snorkling to a depth of up to 24 feet. It is done no more than twice in 24 hours for no more than 60 minutes per session. Some conditions for which HBOT is currently approved (ie gas gangrene, the "bends", etc.) require treatment at pressures of 2.0 to 3.0 ata or greater and can be given for long ( 1.5 to 2 hours) or multiple (up to every 4 hours round the clock) sessions . With higher pressures and longer or more frequent sessions the risks of complications increase dramatically - these are the pressures where some people experience barotrauma, oxygen toxicity or seizures. Thousands of hours of low pressure HBOT have been done in the UK and elsewhere in the world with no substantiated reports of these complications occurring at the recommended depths (pressures) for brain injury. 
     It is true that there has yet to be a large, well designed, double-blind 
control study done to demonstrate that this is an effective treatment for CP. 
Until such time as this information is available the traditional medical 
establishment will always withhold its approval for this therapy. However, 
this has been effective for my son - every one of his therapists can now tell 
when he has had a series of HBOT or needs one. The results with Anthony are that obvious. So FOR US, FOR ANTHONY, this is a proven therapy. :-)
     The other nice thing about HBOT is that this is a pleasant therapy for him. He sits with me in the chamber and watches videos or we sing or we nap. No pain, no discomfort, just relaxation of his spasticity and some 1:1 time with Mommy.  :-)
     We started having HBOT treatments when my son was 17 months old. He has had 77 to date and we will be booking 20 more this fall. We have seen some nice changes (spasticity and speech in particular) and have found the therapy to greatly enhance the traditional PT, OT, SLP that he has weekly. I wish we could afford to  treatments more often  but we must always balance the limited resources we have  in time, energy and money for the good of everyone in the family. And we are more fortunate than most : we have local clinics which are well-run and the cost is  much cheaper than many places in North America. But even if our resources were unlimited I would probably not pursue this therapy too much more - Anthony has the right to be a little boy and not spend his childhood in "therapy". We want to help him maximize his potential and ease his way in life a little, not "fix" or "cure" him of his CP. He is just fine the way he is, thank you very much! 
     HBOT works for us right now as  part of our overall plan for our son. 
His CP is most likely the result of his prematurity (born at 30 weeks). Other 
than a massive brain hemmorrhage and the subsequent PVL, his remaing brain tissue is healthy. Other than his CP he is in excellent health. This makes him a good candidate for HBOT IMHO. We believe the HBOT has helped to "jump start" some idling or dormant neurons adjacent to his damaged areas and so enhance some functioning in these areas. We are fortunate (you know what I mean) in that his brain has many tiny pockets of damage throughout vs. a few large areas. Since he was an infant when the damage occured, his brain has re-routed itself around and through the damage. Which is why I think he has done so much better than expected ( that AND his tremendous tenacity and drive to succeed and of course just being such a special little guy!). 
      We think HBOT has helped facilitate this process in Anthony. Since major production and differentiation of brain cells mainly occurs up until the child is between 3 and 5 years of age, we feel the most benefit for Anthony can be acheived with HBOT during this period. I have certainly heard very positive comments from parents of older children so do not completely discount the potential for people at any age. Just from what I understand about the theory behind HBOT for CP, I believe the best results can be obtained in young children. 
     As Anthony ages we will pursue other treatments (Botox, hippotherapy, conductive education, biofeedback, etc) as he enters developmental periods where we feel he can best benefit from these therapies.

Just my thoughts on this subject FWIW. I would be happy to answer any 
specific questions based on my experiences with this therapy. This post is 
not intended to re-establish the controversy - it is merely to offer my 
personal opinions, experiences  and observations. 

Yvonne
Mommy to 3 and a half year-old triplets:
Robert [nda]; Anthony [PVL secondary to Grade IV bleed, resulting in spastic quad CP  (level 4/ moderate), AFOs, Pony walker, 77 HBO treatments, adorable dimples, killer smile and incredible flirt!]; and our angel Joseph {April 14, 1997 - December 31, 1998} [cerebral atrophy, severe CP, global delays, Infantile Spasms, CVI, mic-key tube, BPD...} Married to SAHD Mark. Ottawa, CANADA.