continuous brain damage in CCHS

The information below was taken from the CCHS Family Network Facebook page and sums up the researcher's findings and recommendations. Even though this information is not new to us, I am posting it here because family and friends may not be aware of these findings. I marked one aspect in bold as it specifically applies to Wyatt.
For the specific research literature, please refer to the CCHS Network Website here http://www.cchsnetwork.org/literature

Dr. Ron Harper, PhD., UCLA, Los Angeles.

"There certainly are better terms I could use rather than [brain] "damage." However, there is no getting around the findings we have; the mammillary bodies lose more than half their volume in some subjects, and that certainly would include cell loss as well as supporting tissue. I showed slides indicating loss of fibers from various structures, including the fibers of the fornix from the hippocampus to the mammillary bodies, the corpus callosum, especially in the posterior corpus callosum, and fibers from the pons to the cerebellum. I also showed injury to the cerebellum, the insular and frontal cortex, and the cingulate cortex, with the injury indicated by both tissue loss and fluid exchange between cells, which is indicative of damage. The cerebral cortex also is thinner in several areas than controls. All of these findings are published in peer-reviewed manuscripts in very high quality journals. Some do not like the phrase "damage." However, it would be a huge mistake to close our eyes and pretend it does not exist; we have to stop it. I tried to focus the talk on the issue that, although we know the injury exists, much intact tissue remains, and we have to make use of that intact tissue, and retrain it to acquire/take over lost functions, and that we have to do everything we can to protect against further injury.
I noted at the conference that a number of the B vitamins, especially thiamine (B1) are flushed out by the profuse sweating and malabsorption in CCHS, as is magnesium (equally important), and loss of those nutrients would lead to further injury, even if ventilation is adequate, but especially if hypoxic episodes occur. It is certainly valuable to know if the CCHS kids are magnesium or thiamine deficient, and to take remedial intervention [i.e. taking vitamin supplements].
Meanwhile, the cause of the [phox 2b] mutation remains unclear."
(RH 7/11/14)