Monday, March 31, 2008
A letter I sent
Here is a summary I am sending to my Nurture newsletter list, from my ebook Web site Nurturing Your Asperger's Child.
Two years have passed since I wrote this newsletter series, and I wanted to tell you about what has been going on with Mike. Mike is now 15. We have been using a "biomedical invervention" on him, involving taking plenty of nutritional supplements. I am very happy to say that he is no longer an explosive, angry, depressed young man. He is on an even keel. He still has the social deficits that he had before--difficulty seeing another person's point of view. So he isn't "cured." Nevertheless, he is a lot easier to deal with and is doing better in school. Also, he is no longer on the medication that was making him gain weight, Abilify. In addition we are dropping down on the dose of some of his other meds.
What's happening is this: the medical profession is proceeding on Asperger's research in its usual slow way, but there are plenty of parents like me who find out that help is available and don't want to wait until their child is no longer a child.
If you want to find out more or sign up for a "rescue angel" mentor, please go to http://www.generationrescue.com .
Meanwhile, here's more on my story, if you are interested.
There is an organization called Defeat Autism Now, or DAN, that has come up with a medical protocol. Doctors following the protocol do extensive and expensive testing of blood, hair, etc., recommend supplements, and monitor the results with repeat testing.
There is also a protocol developed by Dr. Amy Yasko, where a genetic test looks for certain mutations which Dr. Yasko has determined tend to affect the way the mitochondrial cycles work. Again, a list of supplements is administered, and plenty of expensive testing monitors the results. This is the avenue I chose to try in June, 2007.
Both avenues are targeting work done by the mitochondria in each cell in our body. These little factories take some inputs and make some outputs, and keep working on it till they come back to where they started. A diagram looks like a wildly complicated version of the water cycle (sea water becomes rain becomes ground water etc. etc.) In individuals with autism, and in individuals with a variety of ailments, imbalances in these cycles cause problems. So if you take a bit of this supplement and that supplement, you may cause the interconnected cycles to work better. Question is, which supplements?
We tried the supplements in the Yasko protocol between June and November and weren't getting good results. But I also wasn't paying for the expensive testing, either. (As much as $10,000 per year!!!) Then someone suggested using a chirorpractor to determine which supplements work well for Mike. Some chiropractors are trained in Applied Kinesiology, also called muscle testing, and are already familiar with the basic idea of tweaking these mitochondrial cycles using various supplements. Only instead of expensive testing, they determine whether putting the supplement on your tongue causes your muscles to suddenly get weak or not. If your muscles get weak, then it's not what your body needs. Sounds pretty weird, but it works!
Using this and Yasko's list of supplements, we have determined which ones are helping Mike, and are giving them to him. Comparing what works for him to what works for another individual's kids, I can tell you, it's different for every person. And, in her case, her kids ARE cured. It's my theory that the genetics in my family make Mike's autism more difficult to treat. But possibly you are in the vast majority of families where autism has just showed up in this generation, and yours will be easier to treat.
Two years have passed since I wrote this newsletter series, and I wanted to tell you about what has been going on with Mike. Mike is now 15. We have been using a "biomedical invervention" on him, involving taking plenty of nutritional supplements. I am very happy to say that he is no longer an explosive, angry, depressed young man. He is on an even keel. He still has the social deficits that he had before--difficulty seeing another person's point of view. So he isn't "cured." Nevertheless, he is a lot easier to deal with and is doing better in school. Also, he is no longer on the medication that was making him gain weight, Abilify. In addition we are dropping down on the dose of some of his other meds.
What's happening is this: the medical profession is proceeding on Asperger's research in its usual slow way, but there are plenty of parents like me who find out that help is available and don't want to wait until their child is no longer a child.
If you want to find out more or sign up for a "rescue angel" mentor, please go to http://www.generationrescue.com .
Meanwhile, here's more on my story, if you are interested.
There is an organization called Defeat Autism Now, or DAN, that has come up with a medical protocol. Doctors following the protocol do extensive and expensive testing of blood, hair, etc., recommend supplements, and monitor the results with repeat testing.
There is also a protocol developed by Dr. Amy Yasko, where a genetic test looks for certain mutations which Dr. Yasko has determined tend to affect the way the mitochondrial cycles work. Again, a list of supplements is administered, and plenty of expensive testing monitors the results. This is the avenue I chose to try in June, 2007.
Both avenues are targeting work done by the mitochondria in each cell in our body. These little factories take some inputs and make some outputs, and keep working on it till they come back to where they started. A diagram looks like a wildly complicated version of the water cycle (sea water becomes rain becomes ground water etc. etc.) In individuals with autism, and in individuals with a variety of ailments, imbalances in these cycles cause problems. So if you take a bit of this supplement and that supplement, you may cause the interconnected cycles to work better. Question is, which supplements?
We tried the supplements in the Yasko protocol between June and November and weren't getting good results. But I also wasn't paying for the expensive testing, either. (As much as $10,000 per year!!!) Then someone suggested using a chirorpractor to determine which supplements work well for Mike. Some chiropractors are trained in Applied Kinesiology, also called muscle testing, and are already familiar with the basic idea of tweaking these mitochondrial cycles using various supplements. Only instead of expensive testing, they determine whether putting the supplement on your tongue causes your muscles to suddenly get weak or not. If your muscles get weak, then it's not what your body needs. Sounds pretty weird, but it works!
Using this and Yasko's list of supplements, we have determined which ones are helping Mike, and are giving them to him. Comparing what works for him to what works for another individual's kids, I can tell you, it's different for every person. And, in her case, her kids ARE cured. It's my theory that the genetics in my family make Mike's autism more difficult to treat. But possibly you are in the vast majority of families where autism has just showed up in this generation, and yours will be easier to treat.
Monday, March 24, 2008
Things are mostly a lot better
Well, Mike has been doing pretty well the past month, compared to how he was without the nutritional supplements, say last summer. He is working on managing his anger, in particular. He does get pretty wild after eating sugar, and he still has a lot of trouble going to sleep at night.
To address that, I decided to try to wean him off his Cymbalta, an antidepressant he is taking which has insomnia as a fairly common side effect. We are down from 50 to 30 mg per day now, and have been at that level for about 2 1/2 weeks. His behavior is a bit unstable, and I think this must be why. It just takes a while for the little neuro receptors to adjust to the lower levels of brain chemicals. But I am hoping and expecting that they will adjust, because he is getting so much nutritional supplementation that should be making all his methylation and other cycles work very well.
These cycles, by the way, are what the mitochondria are doing in each cell of the body. They are like little factories that take some of this and some of that, and make some of the other thing. Then they use that up making a third compound, and so on, until they are back to square one. So they need a lot of factory inputs, so to speak.
I am planning some summer camps for him that assume he will behave in a normal fashion. We will see. He is actually very good if hyperfocusing, but if a subject loses his attention, he can act like a six-year-old. So the key is to find camps where he loves the subject. I hope I have done so: one will teach him singing lessons, and another will let him pal around with animals.
Phyllis
To address that, I decided to try to wean him off his Cymbalta, an antidepressant he is taking which has insomnia as a fairly common side effect. We are down from 50 to 30 mg per day now, and have been at that level for about 2 1/2 weeks. His behavior is a bit unstable, and I think this must be why. It just takes a while for the little neuro receptors to adjust to the lower levels of brain chemicals. But I am hoping and expecting that they will adjust, because he is getting so much nutritional supplementation that should be making all his methylation and other cycles work very well.
These cycles, by the way, are what the mitochondria are doing in each cell of the body. They are like little factories that take some of this and some of that, and make some of the other thing. Then they use that up making a third compound, and so on, until they are back to square one. So they need a lot of factory inputs, so to speak.
I am planning some summer camps for him that assume he will behave in a normal fashion. We will see. He is actually very good if hyperfocusing, but if a subject loses his attention, he can act like a six-year-old. So the key is to find camps where he loves the subject. I hope I have done so: one will teach him singing lessons, and another will let him pal around with animals.
Phyllis
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This blog describes how we started out on the protocol by Dr. Amy Yasko, who many say has cured or improved children with autism using a genetic-based nutrition therapy.