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Hi Jill. I'll apologize in advance for the length of this reply, but here goes:
Unfortunately, when talking about how well David was doing, I should have knocked on wood. He got ahold of $100 and spent it--where else? he does have pws--on food. And very few things available in restaurants and convenience stores--perhaps none--are on this diet.
The silver lining, is that I am now sold on this diet. His splurge cost him a weight gain of all his loss, but, heartbreakingly, a regression in his mental achievements. It has been terrible the last couple of days to see him so fogged, but still remembering that he did have that ability to think clearly. Even with the setback, he showed the ability to still realize, perhaps for the first time in his life, what the stealing and lying does. In apology, he just looked at me and said, "Mom, I love you." Now, today (2nd day back on intro diet), he brought me a list of all that he bought and asked me to help him with what was "illegal" on the diet.
Anyway, what I believe is that David's gut is really injured. Just like most ASD kids' guts are. But like the gastro we saw a few weeks ago, most docs say it's like "which came first? the gut problems or the autism?" In essence, he says it's the fact that the child has autism that causes the weak muscle tone in the bowels, the diarrhea, etc. Not the other way around. There's a growing number of people in autism research that now believe that the gut problems of those with autism are what causes certain autistic behaviors.
Here's the critical part to PWS: those autistic behaviors they believe are associated with gut problems are the most common "autistic-like" behaviors that we see in our children with PWS: stimmy behaviors like hand flapping, rubbing, excitability attributed to yeast overgrowth, or aggressive behaviors like tantrums, self-injury or "spaciness" attributed to bad bacterial overgrowth.
This diet was developed with the principal that first you needed to remove the bad bacteria and yeast from the gut, allow time for the lining of the intestines to recognize that it didn't have to overproduce mucous as a defense, but which also impedes absorption of nutrients, and then slowly reintroduce easily digested foods so the newly exposed lining isn't harmed and also put the gut flora back into balance with good bacteria.
My own kid -- I know what he's eaten over the years. From garbage to the zero-calorie condiments that, seriously, this stuff just is plain inedible. To me, it makes sense that if he didn't have the stomach ache from being hungry all the time, he would be bent over in pain just from the stuff he eats.
There's another website which has more information on the diet itself. If anything I've said above is in contradiction to what you read there, assume I'm wrong, I'm still a newbie to all of this. There are people who have been on the diet for years to heal celiacs, and moms of kids with autism--used to have autism--that have been following the diet for close to 10 years.
www.pecanbread.com
Oh, Dave's diet before this was typical PWS fare: 1000-1200, lots of veggies, portion control, whole foods, "free" (low cal) fillers, and all the stuff that he sought out on his own and never told me about. He's at 190, 5'8", the most he's ever weighed thanks in part to new territory since he graduated from HS. He can usually lose weight with aggressive exercise plan and reduction of calories to about 700-800 per day. He's not on hGH, though when he was he maintained 160 with what seemed like twice as much food.
Sandy
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Unfortunately, when talking about how well David was doing, I should have knocked on wood. He got ahold of $100 and spent it--where else? he does have pws--on food. And very few things available in restaurants and convenience stores--perhaps none--are on this diet.
The silver lining, is that I am now sold on this diet. His splurge cost him a weight gain of all his loss, but, heartbreakingly, a regression in his mental achievements. It has been terrible the last couple of days to see him so fogged, but still remembering that he did have that ability to think clearly. Even with the setback, he showed the ability to still realize, perhaps for the first time in his life, what the stealing and lying does. In apology, he just looked at me and said, "Mom, I love you." Now, today (2nd day back on intro diet), he brought me a list of all that he bought and asked me to help him with what was "illegal" on the diet.
Anyway, what I believe is that David's gut is really injured. Just like most ASD kids' guts are. But like the gastro we saw a few weeks ago, most docs say it's like "which came first? the gut problems or the autism?" In essence, he says it's the fact that the child has autism that causes the weak muscle tone in the bowels, the diarrhea, etc. Not the other way around. There's a growing number of people in autism research that now believe that the gut problems of those with autism are what causes certain autistic behaviors.
Here's the critical part to PWS: those autistic behaviors they believe are associated with gut problems are the most common "autistic-like" behaviors that we see in our children with PWS: stimmy behaviors like hand flapping, rubbing, excitability attributed to yeast overgrowth, or aggressive behaviors like tantrums, self-injury or "spaciness" attributed to bad bacterial overgrowth.
This diet was developed with the principal that first you needed to remove the bad bacteria and yeast from the gut, allow time for the lining of the intestines to recognize that it didn't have to overproduce mucous as a defense, but which also impedes absorption of nutrients, and then slowly reintroduce easily digested foods so the newly exposed lining isn't harmed and also put the gut flora back into balance with good bacteria.
My own kid -- I know what he's eaten over the years. From garbage to the zero-calorie condiments that, seriously, this stuff just is plain inedible. To me, it makes sense that if he didn't have the stomach ache from being hungry all the time, he would be bent over in pain just from the stuff he eats.
There's another website which has more information on the diet itself. If anything I've said above is in contradiction to what you read there, assume I'm wrong, I'm still a newbie to all of this. There are people who have been on the diet for years to heal celiacs, and moms of kids with autism--used to have autism--that have been following the diet for close to 10 years.
www.pecanbread.com
Oh, Dave's diet before this was typical PWS fare: 1000-1200, lots of veggies, portion control, whole foods, "free" (low cal) fillers, and all the stuff that he sought out on his own and never told me about. He's at 190, 5'8", the most he's ever weighed thanks in part to new territory since he graduated from HS. He can usually lose weight with aggressive exercise plan and reduction of calories to about 700-800 per day. He's not on hGH, though when he was he maintained 160 with what seemed like twice as much food.
Sandy
To: pws-autism@yahoogroups.com
From: jillaprilb@...
Date: Fri, 15 Feb 2008 12:01:30 -0800
Subject: Re: [pws-autism] SCD - Specific Carbohydrate Diet
Sandy, this is fascinating. I'd like to know a bit more, e.g. how much does David weigh? What diet was he on before? We've had a lot of success with the Children's Institute's red-yellow-green diet, but April (almost 19)'s food-seeking behavior hs become much worse--she even ate playdough in her child development class yesterday! (Well, the teacher did say it was edible, e.g. non-toxic, so go figure!) Love to "sell" her on a diet. She's around 120# now, so 1000 calories is working well for her.JillYahoo! HealthAchy Joint?
Common arthritis
myths debunked..
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