A good friend, who lives in Johannesburg, South Africa, asked me last week to write a column for a newsletter aimed at parents of children with autism. Below is that article:
You would think after 16 ½ years in the world of autism that I would cease to be surprised by anything, and yet, I still find myself continually shocked. By what? By the ignorance of so many “professionals” who take our money offering little or nothing in return. By the callousness of the quacks, who shamelessly tout miracle products to desperate parents. By the stupidity of so many who claim to have the answers but in fact, are doing nothing but faking knowledge that no one yet has. And, by the courage, determination, selflessness and love of parents for their sick children.
And, recently, I was more than shocked – I was stunned – by the fact that so many professionals in the autism world still see “autism” as the root cause of physical symptoms that have absolutely nothing to do with what autism is. For most professionals, even 47 years after Dr. Bernard Rimland showed the world that autism is physiological in nature, not psychological, autism is the tree that makes them miss the entire forest.
Today I posted on my Facebook page a summary of research out of Cal Tech showing that changes in the immune system lead to autistic-like behavior in mice, a scenario which could also apply to humans. This is hardly a dramatic revelation: this has been theorized for as long as I’ve been in the autism world – over 16 years. And the idea that immunological insults to the mother can cause changes to the immune system of her fetus, leading to central nervous system changes, is also not new. There is years of evidence of this phenomenon in schizophrenia, which some have called “adult onset autism.”
What makes me most glad about this kind of research is that I genuinely believe it can lead to effective and timely treatment. What autism needs, more than anything, is top quality research like this.
What breaks my heart though is that 16 ½ years after my son was first diagnosed, 25 years after the first papers were published showing immune system abnormalities in children with autism, this is where we are. On July 18, 2012, as though it were breaking news, we’re hearing that immune dysregulation may cause autism.
One of the best (of many) pieces of wisdom I picked up from Sid Baker years ago is “if you listen to the patients long enough, they will tell you what’s wrong with them.” For 16 plus years now, I’ve been telling doctor after doctor that my son, Alex, is sick. Before he was even diagnosed with autism, I was calling our pediatrician and telling her that Alex was acting strangely because he was “sick all the time.” A month ago, I took Alex to see Dr. Denis Bouboulis, a top immunologist on the east coast. “Your son is sick, Judy, which is why he’s autistic.” I almost kissed him on the lips.
Dr. Bouboulis testing confirmed the same findings that have been showing up in Alex’s blood work since he was 3, and we were first sent to an immunologist: he has low CD4 cells, the same ones affected in AIDS, leaving him immune compromised and prone, therefore, to picking up infections. In fact, he diagnosed him with multiple infections the first time we saw him, which were then confirmed by the lab work. In one month of treating Alex, he has done more for us than anyone has ever done before. He is not treating “autism” – he is treating a young man who is sick. And strangely enough – NOT - yesterday my son called me “mommy” for the first time in his 18 years of life.
Last night I had the incredible pleasure of having dinner with Dr. Bobby Sandage, CEO, and Dr. Lucy Lu, CFO, of Coronado Biosciences (http://www.coronadobiosciences.com/
), the company which owns the rights to TSO in in the United States and Japan. They recently successfully completed their phase I trial and are embarking now on phase II, on their way to getting FDA approval for my beloved little whip worms. Right now they're concentrating efforts on Crohn's disease, with MS in 2nd place, but other autoimmune diseases are also being considered. They are working with Dr. Eric Hollander of Montefiore Medical Center on a study of TSO's effects on adults with autism. My hope is, this is just the first of many.I walked out of the dinner feeling very happy. Why? Because I genuinely believe that TSO couldn't be in more capable hands. What do I know but...I honestly feel that if anyone can get it FDA approved, and reimbursed by insurance, these people can. I called my parents on the way home and told them to buy more stock!TSO, helminthic therapy, is bigger than any one company and way bigger than any one person. But FDA approval is crucial in eventually getting the cost down to something affordable. Right now it is too expensive to help most people. I pray with all my heart that someday, all of us who need it for ourselves or our children will be able to do so.
I'm having a fun week.
It all started 2 weeks ago, when I had to spend $4000 on having my dog's ACL (ligament) repaired on the same day I had to spend $4000 to get Alex's cavities filled. (He had to be under sedation for almost 3 hours.) Then last week I got to spend $4000 on a lawyer, to help me get guardianship over Alex, who turned 18 last weekend. Alex is officially an adult now - and I am slowly being forced to face all that implies. (I tried to fill in the guardianship papers myself but because NY State has a policy of making sure they make things are hard as possible on people whose lives are already as hard as possible, the courts twice rejected my documents, sending them back to me with little yellow sticky notes all over them asking for more information. (Form: "Why does your adult child with a disability require a guardian?" My answer: "Because he is essentially non-verbal, profoundly autistic and requires 24 hour supervision and help with even the most basic life skills." Sticky note: "please provide more information") How do I put this in a ladylike way...er...WTF? I finally admitted defeat and dumped the whole packet in my lawyer's very expensive lap.)
I didn't get to spend $4000 today. I'm going through withdrawal.
So I was already in a mood when I got to the lawyer's office last Thursday. I was in an even better mood when I left, $4000 poorer, after finding out that the sum total of Alex's social security (money meant to house, feed and care for him) will amount to about $400 per month. Yes, I know many adults who live comfortably on $4800 a year....
Way to help me keep my adult disabled child living at home, Government. $400 a month should cover 2 weeks worth of his groceries....maybe...if he skips dinner...
All these fun things had me in a great place, emotionally, when I walked into our neurologist's office with Alex on Monday afternoon. I had made up a summery sheet for him - bullet points from Alex's history demonstrating that his issues all come back to one thing: his immune system is beyond screwed up. Last Friday, the day after that bonus trip to the lawyer, I had to put Alex back on Prednisone for the millionth time. He was back to having hours-long cluster headaches. Friday night found me holding him on the couch, waiting for the Imitrex to kick in, while he punched my arms. I had to call in Liam for reinforcements. The next morning, 12 hours after 40 mg of Prednisone, Alex was full of sunshine. Liam calls it his "happy pill." I suppose they're mine too (seeing Alex smile is definitely sunshine in my heart)...except I can't keep him on it, of course. (...)
Two weeks ago, my dog had his ACL (the ligament attaching his doggie tibia to his doggie femur) surgically repaired. A very dear friend just emailed me to ask how he was recovering, jokingly asked me to give Apollo a big kiss from him. I wrote back saying that I had just given the dog a big smootch on the lips and that this was nothing compared to how my 14 year old son practically made out with the hairy monster, laughing until he cried when Apollo would like his entire face (thoroughly) - even his teeth. My friend just wrote his response: "
My motto is "Love me, love my dog." :-) But Apollo licking Liam's teeth can be considered beyond gross, not to mention that dogs have germs and Apollo is passing these on to Liam -- AND WITH YOUR TRAINING AND EXPERIENCE YOU HAVE NO PROBLEM WITH THIS???????????????????? Where did your parents go wrong????? :-)"I wrote back to explain that with all my training and experience, I most certainly did not have anything against the dog licking my son's teeth. Now, don't get me wrong - it's absolutely disgusting. And even the sounds of Liam's laughter don't drown out the little wet, slimy, slurpy noises....YUCK. But from a health point of view, it's been shown again and again that kids who are exposed to pets - and yes, that means pet saliva - grow up healthier, with fewer allergies. To prove my point, I showed my friend this link, which I thought I'd share with all of you:http://www.cbsnews.com/2100-500166_162-519978.html
which is based on an article published in JAMA, in 2009. "The researchers think that exposure to dogs and cats leads to lower risks of allergies because children living with these animals are probably exposed to higher levels of endotoxins, the breakdown products of bacteria commonly found in the mouth of a cat or dog. Exposure to endotoxins is thought to force the body's immune system to develop a different pattern of response that makes you less likely to become allergic."Yes, Liam is 14 now and his immune system is developed, for better or worse but...if some dog spit was good enough for him when he was 1, it's good enough for him now. So, lick away, Apollo...even though I know where that tongue has been.
An article came out recently in Cold Spring Harbor Perspectives in Medicine (2012;4:a007799) entitled The Hygiene Hypothesis: An Explanation for the Increased Frequency of Insulin-Dependent Diabetes, by Drs. Bach and Chatenoud. What particularly fascinated me was one of the graphics they include, showing the incidence of Type 1 diabetes in the world. Sometimes a picture really is worth a thousand words. Yeah, red is high and yellow is low...as I'm sure you could have guessed. (...)
I just read this article:http://www.bbc.co.uk/news/science-environment-17127617"Men may not become extinct after all, according to a new study. Previous research has suggested the Y sex chromosome, which only men carry, is decaying genetically so fast that it will be extinct in five million years' time. A gene within the chromosome is the switch which leads to testes development and the secretion of male hormones. But a new US study in Nature suggests the genetic decay has all but ended."Well, I see this is as both good news and bad news. : - )Ya-can't-live-with- 'em- but-ya-can't-live-without-'em kind of thing. So while I know I'll sleep better at night knowing that the likelihood of men vanishing in 5 million years may no longer be a real threat, it made me think - not for the first time - honestly, at this rate, we're not going to have to wait 5 million years for men to be destroyed. We're doing a pretty adequate job of it right now. How many boys now have autism, ADHD, other developmental issues? In autism, the going rate is boys to girls = 4:1, but I'd guess the actual statistic is much higher. In ADHD, it's 3:1. How many overweight children will grow up into obese adults, who die early of diabetes and heart disease?
And obesity in children has that same 3:1 ratio, boys to girls.If we don't do something now to clean up our food and our environment, we won't have to wait a few million years to find out whether or not boys will become extinct.
And as much as I can't understand why they will walk around a laundry basket planted in the middle of the stairs, rather than pick it up - I'd prefer to keep them around for awhile.
This morning I was asked, by Brian, the owner of BlogEngage, to enter a guest blog into his latest contest. "What's a guest blog?" I wrote back. Now, how embarrassing is that?! Brian has infinite patience it seems, and explained to me that it entailed me writing a post on his blog. The entry needed to be about marketing or blogging - and seeing as I've been on a crash course about this very subject these last few weeks, since the work on this new site began, I thought I would give it a try.So, now I need you all to go read it, vote for it, love it, Tweet it, Friend it, Like it, forward it and do whatever else you can think of to tell the world it's the single greatest blog post you've ever read. And when I win the contest, I will use the money to cook you all a ketogenic, SCD legal, casein and gluten free, low phenol something-or-another.Check it out at: http://www.blogengage.com/blogger/metamorphosis-or-how-i-became-a-marketing-butterfly/ Thanks everyone!
Sponsors of the contest:
I'm not a huge fan of Valentine's Day (maybe that's bitter grapes, seeing as I have been single for years! Ah me!), but still - I've decided to take some time today to write about things I love.
Well, some things are obvious. I love my sons. I love my parents and my family. I love my friends, the New York Yankees, mushrooms, dark chocolate, science fiction and eating. The list goes on.
And I love the Specific Carbohydrate Diet - and Elaine Gottschall, whose work saved my son's life.
Before SCD, I spent every day mopping up diarrhea and vomit. My son ran around the house like a lunatic, never sleeping, smashing things to pieces and screaming...and screaming...and screaming...and screaming. And screaming. I couldn't just sit - ever. I had to chase him around and around, trying fruitlessly to comfort him, wiping up bodily excrement from him, from my clothes, from the floor. Our lives were lived in hell. (...)
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. (...)