Congenital Myopathy and Myfibrillar Myopathy

[Guest guest]

Dear Rose

Happy New Year

We have no experience of these conditions but AS ALWAYS the risk is

of not trying to see if more oxygen will help. NB Would the parent fly

with the child - that is use a hyperbaric chamber which reduces the

oxygen level? Dr Neubauer has had some astonishing success with

mitochondrial disorders. The real nature of the two conditions is not

known so just try and it will a World first!

Best wishes

Philip

Dr P B MB ChB DIH PhD FFOM

Wolfson Hyperbaric Medicine Unit

University of Dundee

On 8 Jan 2004 at 13:06, rose manning wrote:

> Dear Dr. and List,

> Does anyone know if HDOT can help with Congenital Myopathy or

> Myofibrillar Myopathy? Has anyone treated this?

>

> Tommy is 20 months, he has been diagnosed with this. He can not hold

> up his head very well and can not stand. He has a feeding tube and

> can not swallow.

>

> Thank you in advance for your response.

> Love to all,

> Rose Manning

>

>

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