A very dear friend of our family's, my Dad's oldest and closest friend, was diagnosed 4 months ago with glioblastoma, a very aggressive form of brain cancer. The prognosis is very grim. These last months, I have felt helpless - desperate to do SOMETHING.
Then, several weeks ago, in my daily researches, I came across a reference to the use of the ketogenic diet in brain cancers and immediately did a search on PubMed. Sure enough, up popped a whole bunch of references, and what I discovered is that cancer cells cannot use ketones for fuel. Starving them of their one source of fuel - glucose - may definitely help keep tumors from regrowing. (...)
- Firstly, welcome to my new and improved website. I intend to start blogging on a more regular basis, so please, check back frequently.
- It now been 3 ½ months since I started Alex on our ketogenic experiment. I am now starting several clients on the diet as well. Is it helping? I am not sure, but since I committed to it for 6 months, I intend to stick with it that long. Alex’s response to it is muddled by another situation that has arisen. (Isn’t it always that way?!) That is, I (correctly, as it turns out) diagnosed him with cluster headaches. The diagnosis was subsequently confirmed by a neurologist, and Alex’s response to the serotonin-agonist pain-killing migraine medication, sumatriptin, provided the final confirmation. Cluster headaches, as I found out when I looked it up (seeing as Alex’s episodes of screaming occurred in bunches), are considered the worst possibly headache. In fact, they are also called “the suicide headache” for self-evident reason. Alex also has what are called “intractable” cluster headaches, meaning that – while most people have months off in between clusters – his never go away. Alex has these headaches one to five times per day, nearly every day…and has had them for years.
Why did it take so long for anyone (me and his many doctors) to figure it out? Mainly it is due to Alex’s inability to express himself. However, with is new IPad, communication has become markedly better and he’s hitting that “I have a headache” button for all its worth. Secondly, cluster headaches are rare. Thirdly, I believe his doctors fell into that all-too-common mistake of crediting his “tantrums” to his autism. It was the old, “He’s screaming because he’s autistic” error. I remember that one only too well from Alex’s earliest days: “He has profound diarrhea and vomiting because he has autism.” Not, “He has colitis.” Or better still, “He has autism because he has vomiting and diarrhea and colitis.” (...)
Alex has now been ketotic for more than 2 1/2 months, and there is not doubt about it – it is helping him enormously. Granted, I am also doing GcMAF at the moment. However, last spring when I first tried GcMAF – and Alex was off SCD – he was doing nothing but regressing. The change in diet is the only thing new that I am doing. I do believe the GcMAF is helping…but I think that without the diet, he’d be too sick for me to see that.
A quick summary of the changes so far:
a. Most importantly, Alex’s mood has stabilized. He has very few tantrums now, and when he has one, they are very short and not nearly as severe. There has been a very big improvement in the last two weeks on this front. That alone would make all the effort worth it!
b. He has lost 10 pounds (which was needed) and looks great.
c. His acne is clearing up. His skin is 100 times better than it was just 2 months ago.
d. His nails are starting to grow more normally. The perpetual peeling (below the nail line) has dramatically improved.
e. Almost the most exciting…he is sleeping! 8 hours a night, with no help (supplements or medication).
On September 16, 2 1/2 months ago, an article was published entitled, “Impaired Carbohydrate Digestion and Transport and Mucosal Dysbiosis in the Intestines of Children with Autism and Gastrointestinal Disturbances.” Its authors include, among others, Dr. Tim Buie (GI at Harvard), Mady Hornig (well-known researcher at Columbia), and Margaret Bauman (one of the foremost researchers in the world on the autistic brain).
The paper rocked my world.
To sum up very briefly, the paper confirms Dr. Horvath’s findings of a decade ago – that children with autism and GI issues have low levels of disaccharidases (enzymes from the brush border of the small intestine that complete carbohydrate digestion), hampering their abililty to properly break down carbs. But it went much further: these researchers also found that these children have low levels of mono-saccharide transporters in the enterocytes. What does that mean? Glucose is a single molecule of sugar that feeds every cell in our bodies. To get it from the intestines (from food) into the blood stream, the cells on the villi of the small intestine have proteins on their surface known as transporters, that bring the glucose into the cell, and then out the back side into the blood. The children tested had low levels of these transport proteins meaning that even if they manage to break the carbs down into absorbable glucose, they can’t move the glucose out of the intestines properly. And as Elaine Gottschall would say, this leaves all kinds of sugars in the intestine which feeds all sorts of bacteria, leading to a monster dysbiosis issue…exactly what these researchers found.
I haven’t posted much of late because I don’t have a lot to report. As Alex tested well positive for autoantibodies to his CNS folate receptors, I am slowly edging up on folate. I tried folinic acid first (leucovorin), but he became extremely irritable and stopped sleeping, even on a very low dose. Thus, my reasons for taking so long and going so slowly on the new stuff.
Once I’m comfortable with him on this, there are a bunch of new things I am considering.
Overall, Alex is very stable. I did see some exhaustion from this brutal allergy season, but no runny nose or swollen eyes like in years past. His helminths are certainly doing an excellent job. I may need to boost his levels a little in the near future since, believe it or not, it’s been over 3 years since we started our hookworm adventure.
It often strikes me, looking at Alex now – 6 feet tall, most of his beard grown in – how much better life is now than years ago. He is fun and easy to live with. He sits on the couch next to me at night, headphones on, listening to his beloved Billy Joel albums, while the three of usl watch the Yankee game. He may be stimming a little, but he is happy and calm. He chooses to not just be in the same room as us now (rather than by himself in the basement) – he chooses to engage with us continually. Liam will walk toward him and he’ll start giggling, waiting for one of their silly tickle games to start. He smiles most of the time, eats like a 17 year old, and is mostly one happy guy.
It has been months since my last update. The reason for that is I took a break. No, not the kind of break where I was lounging around watching soaps and reading trashy novels. I just made the decision to let Alex be for awhile, let the worms work their wormy magic. Let the Actos work it’s NF-kappa-B/TNF-alpha reducing magic. Watch and wait for a few months, and reassess as springtime neared.
3 days ago I commemorated the 15th year anniversary of Alex’s diagnosis. This day occurs just a few weeks after his birthday – he is now 17 years old. For the first time this week, Alex traced – in a completely legible form – most of the letters of the alphabet, including an X and a Q, which he has been struggling with. He also played a game of Go Fish, independently handing his therapist all his 3’s and his kings, when she asked for them. So as always, yes, there is progress. Agonizingly slow…progress….
But while Alex had his few months of “rest,” I have been very busy. I am more than halfway through the 2nd semester of nutritional biochemistry at Columbia University. It is brutally difficult for me, but if anyone is interested in discussing alkaline phosphatase or thiazole moities, I’m your gal. I have learned an incredible amount, and many things I have observed over the years finally make sense. For years I have wondered about the two miracles I have witnessed with TTFD. Now, I have a working hypothesis as to what happened in those children. I’ve wondered about the MTHFR polymorphisms real implications – now I have a much better biochemical understanding of what it may mean.
As the years have passed since Alex was first diagnosed with autism back in 1996, one concept has slowly but surely stood out as being perhaps the most important in my search for answers. In fact, I’m going to go out on a limb and say that I have come to believe that bacterial dysbiosis is THE cause of not just the autism epidemic, but also the epidemics of irritable bowel syndrome, Crohn’s disease and colitis, and probably most – if not all – autoimmune and other inflammatory diseases. I’m not alone in my thinking. There are researchers out there who are like-minded. Dr. Jeremy Nicholson, for example, who recently presented at the Defeat Autism Now! conference is a soul mate. Read about him here: http://www.scientificamerican.com/article.cfm?id=jeremy-nicholsons-gut-instincts
My belief is based on both my extensive reading of the medical literature and, more importantly, my observations of Alex and me – and my many clients.
I went to the Defeat Autism Now! Conference this past weekend. While I enjoyed several talks, especially Dr. Welch’s talk on secretin and oxytocin and Dr. Rossignol’s talk on treatments and evidence-based medicine, the highlight for me was Dr. Jeremy Nicholson’s talk on the link between bad gut flora and autism. My personal opinion is that ultimately, this will be found to be the cause of the current epidemic. All the things we talk about as possible causes, low glutathione levels, poor detoxification, heavy metals, antibiotics, immune system abnormalities, etc., all nicely mesh with this concept.
The thing is, too, from a purely anecdotal stand point – based upon nothing but my observations of my own son, my friends’ and clients’ children – everything fits. We clean up the gut flora, we improve the children, globally.
I had another kick in the pants from Alex’s gut bugs recently. As I noted in a recent post, Alex’s dermotillomania (compulsive skin scratching and picking) flared up horribly around the start of the year. For many years now he’s picked the skin off his fingers, but by February he was gouging his own skin off – his back and chest looked like he’d been lashed, and his ears looked like they’d been through a meat grinder. I tried the standard treatment for dermotillomania – Prozac – and it did absolutely nothing. In fact, it might have made things worse.
A big, happy smile for the camera! How cute is he?
On May 25, 2008 I did a talk on parasite therapy at the Autism One conference in Chicago. Afterwards, mothers and dads came up to me and asked if I would be willing to start a blog so that they could follow along with the latest on hookworms, how my sons are responding, and so forth.
I am always happy to oblige proactive parents!
I will be using this space to not just update you all on hookworm therapy, although that will be my primary
For those of you unfamiliar with parasite therapy, I suggest looking at the following websites:
a. www.autoimmunetherapies.com – This is the company that is providing hookworm therapy.
b. www.ovamed.com – This is the company that sells porcine whip worms.
c. www.autismtso.com – This is Stewart Johnson’s site. He’s the dad of an autistic son who first let us all know that the TSO was available for commercial purchase.
So, to bring you all up to date on where things currently stand, on the hook worm front…
focus, but also other treatments as well, including TSO (porcine whip worms). My sons will be stopping their TSO treatments very shortly as we are about to reach a potentially therapeutic level of hook worms.