Toni called to let me know that they were talking on NBC Dateline about that all-fat diet that supposedly has remarkable success for children with severe seizures like Kai (to see all posts about Kai's medical condition click the Category: Kai link above). I turned on the TV and caught the last few minutes where they showed a 10 year old child who had beaten his seizures through the diet and is now living a normal life, even avoiding the mental retardation that usually accompanies severe seizures as a baby.
I found a web version of the piece on MSNBC Dateline's web site: Diet as possible epilepsy treatment?. It tells the story of the father of the child from the TV show, most interestingly there is a brief interview with the medical doctor who tried to convince this father to NOT try the fat diet, despite the fact that its success rate has been known for 70 years.
Larson: “You had some knowledge that this diet was probably working at Johns Hopkins and yet you dissuaded Abraham’s from attempting it. How come?” Dr. Shields: “Well because I don’t think we had exhausted all of the medical approaches yet. There were actually still other medications that we hadn’t tried yet.” Larson: “Dr. Freeman tells us that 50 to 70 percent of patients that come through his doors and get put on the diet have success. can you think of any drugs in these hard cases that have 50 to 70 percent success rate?” Dr. Shields: “Probably not that comes up to that level.”
So why are modern doctors ignoring this diet? Charlie’s own doctor has a surprising answer.
Dr. Shields: “There is no big drug company behind ketogenic diet and there probably can never be unless somebody starts marketing sausage and eggs with with cream sauce on it as a drug.”
Larson: “You are saying in a sense one of the reasons the ketogenic diet is not popular at this point is because there is not a big drug company behind it selling it to the doctors?”
Dr. Shields: “I think that’s probably true. I hate to say that, but it’s probably true.”
I happen to work within the pharmaceutical industry, as a software vendor. Like most people, I suspected that the pharmaceutical and medical industries were putting profits ahead of health care well before I got into this line of work, but my 2+ years of experience within the industry has only strengthened this view. It's terribly depressing how corporate greed is affecting our world, but that's a lament for another post.
Kai is having good weeks and bad weeks with the current medicine (the third prescription they've tried). He went a month with only a handful of seizures per day, and those only at night when he was tired. The bad weeks can be very bad though, a couple of weeks ago he had to be fed via a tube through his nose for days because of re-occuring stomach problems (which they think are related to his brain condition), and the seizures increased again.
The doctors had told Eva that he will probably be mentally retarded and possibly unable to ever learn to walk or talk, but when I visited him last week I was overjoyed to see that he is starting to learn how to walk! He took about six shaky steps toward me, it was really just wonderful. He still seems to be a long way from talking, but it is apparent that the seizures produce a lot of stress on him that makes it difficult for him to develop mentally, and that when the seizures are better under control he is capable of making serious progress. When I saw that boy on the TV segment swimming, playing the piano and walking around living a normal life, I could not help but project Kai into that picture. If there is something that can help him and it is being witheld or dismissed because of fucking corporate greed, well that just makes me angry.