In a past post I talked about keeping airways clean and clear. Just to prove I am no doctor and that you should check with a pulmonary specialist about everything I say before doing it, there is a danger of over-ventilation with a bipap machine. This causes very low carbon dioxide levels which, believe it or not, can cause problems due to abnormal blood chemistry.
They are more expensive but if a doctor is refusing to treat the person with leukodystrophy, and won't point you in any direction, and you can't find any other advice (I have posted charity and organisation names in previous posts), it is probably best to seek out a bipap machine with a computer control. These machines can assess how much help the person needs with breathing, as well as monitor each breath, and deliver pressure changes accordingly. This makes it harder to over-ventilate or under-ventilate.
Philips Respironics supply such a machine. The link to their website is:
http://bipapsynchrony.respironics.com/
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