We have been looking into a therapy option for Beth - Hyperbaric Oxygen Therapy (HBOT). It involves the use of a pressure chamber while breating in pure oxygen, such as sports stars do to accelerate the healing process for injuries. Hospitals and medical staff do not believe that HBOT has any real effect on neurological conditions, however, anecdotal evidence seems to indicate it may. We have been in contact with the only two private centres in Australia that provide this - there in one in Melbourne and one in Brisbane. We also visited the one in Brisbane while on holiday recently and had a discussion with the owner about it. It does sound like it may hold promise, but it is very expensive at $150 per 2 hour treatment or thereabouts. Results for neurological issues can take a while to appear, and may vary greatly - from nothing to significant improvement. We have talked to a parent in Singapore who has done a significant amount of therapy and to another parent in the US who believe there was a benefit to doing it; it appears that approx 50% of the gains made were "permanent" i.e. remained after discontinuing treatment for a period. There was a risk of ear infections from the process as well which one child had suffered from. An opinion we have head from the ABR seminar that typically if HBOT is going to make any difference it will be seen within the first 20 hours of treatment. This conflicts with what the Dr. at the Melbourne facility told me that it can take upto 100-200 hours before any benefit is seen. I personally, having discussed this with the Neurologist (who does not think there is any real benefit, although he advises there is a controlled trial being undertaken on this in the states at the moment), and having read the literature etc, can't see the mechanism by which HBOT would operate to provide a great benefit to a lissencephaly sufferer. With a cerebral palsy (CP) child, there is a more "obvious" link in that CP is caused by a lack of oxygen to the brain, and thus an oxygen therapy obviously bears a more direct relationship, whereas lissencephaly is entirely genetic, and there was no hypoxia or other brain injury event. Based on this, and the cost, our present thought is to concentrate on the ABR therapy which is also expensive instead, as it has clear benefits and more tangible results. Perhaps as funds allow we may go for a course of HBOT to see if there is any quick benefit. |