DOCTORS' CORNER:
Dr. Ron Harper: Issues of Neural Damage From Hypoxia in CCHS
Editor’s note: Dr. Harper believes that neural damage from hypoxia (under-breathing, low O2 saturations) can lead over time to memory loss and poor decision making, among other things. He believes CCHS patients can suffer from this process. In his view, assuring appropriate B1 and magnesium levels in CCHS’ers can assist in arresting neural damage. Harper is concerned that CCHS lives can be imperiled from poor decision making, including memory loss over time. As a brain scientist at UCLA, Ron has published broadly on MRI research he has done with CCHS patients. Many of our children now in their 20s participated in this research at UCLA in the late 1990s and afterward. The research team documented the range of brain changes in CCHS patients. Ron remains interested in optimizing brain health in CCHS and has spoken on this at 4 of our Conferences. Meanwhile, his work on several Bluetooth driven non-invasive devices are either in early testing or awaiting FDA approval to move to testing. Ron recommends CCHS pts take B1 and Magnesium daily, and at levels somewhat above the recommended daily doses. [Parents and patients must decide with their Dr. whether this protocol should be observed as part of the daily regimen.] Ron and his team were terribly saddened to learn that two of their MRI patients recently died.
Here is his recent email to us:
"Periodic breathing [as in CCHS]… presents very dangerous intermittent hypoxia to the child/patient, and damages brain tissue and cardiac ganglia very rapidly. [We] have to make sure that everyone in the [CCHS] community is aware of the ATP support issue that is essential to prevent further neural injury, and spread the word on use of thiamine and magnesium to do that. Otherwise, injury will progress, and cause patients to do careless things. ATP stands for adenosine triphosphate, a coenzyme which essentially carries energy to cells. Thiamine (B1) is essential for that process, and uses magnesium in those efforts. Without ATP, cells are essentially not fed when they are active, and without thiamine or magnesium, ATP is not generated, and the cells die. The problem especially comes in when someone is exposed to hypoxia, because hypoxia frequently drives cells into too-high activity; this is especially the case in some brain areas that help look after breathing coordination and cardiovascular action. This process is well-known to those who work with refugees (typically fed white, polished rice devoid of thiamine), alcoholics (they get most of their calories from alcohol (devoid of B1 and magnesium), and typically have poor intestinal absorption, and heart failure (often HF patients are subjected to diuresis, and since thiamine and magnesium are water soluble, lose whatever thiamine and magnesium they take in; gut malabsorption in HF is also a concern….."
"CCHS children [can] get hit from all sides; they profusely sweat, with perspiration carrying the water-soluble B1 and magnesium with it, many have visceral malabsorption, and of course, they are frequently hypoxic, putting cells in the brain and heart ganglia at risk. Remember, the heart has its own "brain," a set of nerve cells surrounding the cardiac tissue.
As for doses, the minimum RDA levels are a joke when one loses those nutrients through poor fluid regulation, sweating, or malabsorption; CCHS children need much more. Most of the US population is deficient in magnesium; the usual requirement is 400 mg/day, but if I took only that amount, I would cramp up terribly at night (low magnesium leads to leg cramps), so I take at least 800 mg/day. It is difficult to overdose on B vitamins, and you can easily take 1000% of B1 without worry. Other B vitamins, e.g., B12 are also a concern. If one takes too much magnesium, it will lead to diarrhea, so it simply is a matter of backing off. Daily intake is essential.
The good aspect of all of this is that both magnesium and B vitamins is that both are inexpensive and readily available. I am totally convinced that we can slow or stop the progression of injury [from hypoxia] in CCHS. [mv]
Ronald M. Harper, Ph.D.
Distinguished Professor of Neurobiology
David Geffen School of Medicine at UCLA