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I spoke to the CEO of autism Canada today


Forum: Children with Developmental Delays and Disorders

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  #1  
April 21st, 2008, 11:45 AM
MrsStuartD's Avatar Platinum Supermommy
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Location: Ontario, Canada
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She gave me some great advice. She home schooled her child and has has fully recovered from autism (not to say that her way will work for every child). Anyway, she strongly suggests I try a lactose and gluten free diet just to see if I notice a difference in Cameron so I'm going to try that. Also she would do one on one play with her son and she would stim with him! I was shocked by this. But that is how she got him to notice her. He didn't feel alone anymore and he would then look at her and she could communicate with him. In her case she felt it was most important to focus on his social skills first and it worked great. I do similar teachings with Cameron but I haven't stimmed with him. I am going to try it and see what kind of reaction I get.

We also talked about vaccines and O/T's (she never used one). So if you want to know more just ask. I just thought I'd share.
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  #2  
April 21st, 2008, 12:32 PM
picklesmama's Avatar <;,><
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GFCF is a pretty controversial diet - I could never do it with Gus, too unhealthy for him. I'll be extremely interested in whether you think it has an effect on Cameron or not. Whenever I have heard of families getting results from it, it has been combined with therapy, I'm inclined to believe it's the therapy and not the diet, myself. But, I'm keeping an open mind until this NIMH study's results are out (supposed to be this month):
Quote:
Diet and behavior in young children with autism
Principal Investigator: Hyman; site: University of Rochester

A gluten-free casein-free (GFCF) diet is one of the most popular interventions for autism. In our area, about 50% of families with preschool children with ASDs use this diet, despite the absence of evidence for its clinical effects or safety. We have preliminary evidence that many children with autism are at nutritional risk because of their self-imposed dietary restrictions, and that imposition of the diet may result in greater risk. Thus, it is critical to determine whether the GFCF diet has beneficial effects on some patients and to develop criteria for identification of children whose behavior may improve with dietary intervention. We propose a challenge study in which all subjects will be on a strict GFCF diet and all will be receiving the same intensity of behavioral intervention. This study will determine the phenotypic chacteristics of children who respond to dietary intervention and the nature of the response. All participants will be tested for a set of suspected genetic risk factors for ASDs to determine whether any of these are related to response to treatment. Several candidate genes for ASD susceptibility are expressed in the developing gut as well as the developing brain. These include HOXA1 and GBX2. Our hypothesis is that susceptibility genes that play a role in development of the gut are the ones most likely to play a role in response to dietary intervention.

Specific Aims:

We intend to establish a nutritionally complete diet that eliminates all gluten and casein in preschool children with ASD receiving intensive behavioral interventions. The protein nutrition of all children will be monitored before, during and after an eighteen-week period of dietary intervention. Parental adherence to the diet will be monitored and supported by formal diet diaries with nutrient analysis and weekly interviews with a dietitian.
The hypothesis that dietary gluten and casein alter the behavior of a subset of children with autism will be tested by assessment of children's responses to a series of dietary challenges delivered as snacks--containing wheat, milk, both or neither--during their educational program. Both the treatment team and the family will be blind to the content of the snacks.
The treatment team and the parents will collect data for three types of outcomes before and after these challenges:
a) Behaviors related to ASD (e.g. communication, stereotyped behaviors, social reciprocity)
B) Behaviors not specific to ASD (e.g. activity level, sleep pattern, appetite, aggression, self- injurious behavior)
c) Physiologic measures (e.g. stooling pattern, heart rate)[/b]
Good luck with it - keep us posted!
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  #3  
April 21st, 2008, 01:11 PM
MrsStuartD's Avatar Platinum Supermommy
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Well we will just be sticking to a few things. Like changing his pasta to rice pasta and changing his milk to Natrel Lactose free milk. He will still be eating well and getting his daily vitamin. I don't see how this will impact his nutrition negatively? He'll still be eating pasta with meat sauce and vegetables. He'll still get fruit and cheese and the like. How can that be an unhealthy diet? What will he be missing that is crucial?
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  #4  
April 21st, 2008, 01:18 PM
picklesmama's Avatar <;,><
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Quote:
How can that be an unhealthy diet? What will he be missing that is crucial?[/b]
If Cameron eats a healthy diet, it won't be unhealthy for him. But like this line of the study summary says,
Quote:
many children with autism are at nutritional risk because of their self-imposed dietary restrictions, and that imposition of the diet may result in greater risk.[/b]
it would be unhealthy for us to try it with Gus. Because of his food and sensory issues, his diet is already so limited. He has problems with texture, and new things, and trying GFCF would whittle his diet down to apple juice and peanut butter sandwiches.
That's why I am looking forward to hearing how it works for you. I can't form an opinion based on my own experience since I can't try it myself
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  #5  
April 21st, 2008, 01:33 PM
MrsStuartD's Avatar Platinum Supermommy
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Oh I see. You had me a little worried there! As a parent I never know what to try and what not to try. I never know what the right thing to do is. But in Cameron's case I'm going to give it a try, at least some of his foods and see how it goes. I'll keep you posted for sure Thanks for your time and replies. I really appreciate it. I in no way want to start arguments or debates. I truly am just trying to learn.
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  #6  
April 21st, 2008, 07:15 PM
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Thanks for sharing. Sometimes I stim with Jay and he always finds it funny.
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  #7  
April 22nd, 2008, 10:47 AM
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Quote:
Well we will just be sticking to a few things. Like changing his pasta to rice pasta and changing his milk to Natrel Lactose free milk. He will still be eating well and getting his daily vitamin. I don't see how this will impact his nutrition negatively? He'll still be eating pasta with meat sauce and vegetables. He'll still get fruit and cheese and the like. How can that be an unhealthy diet? What will he be missing that is crucial?[/b]
I have been thinking about doing the GFCF diet. I thought that the problem was not the lactose but the casien and you would have switch to soy milk. From what I understand you have to remove ALL casein and Gluten from the diet for it to work. I would think if you just remove a few things but still give him dairy and gluten with other stuff you will not really know if it helps. Unless you are just omitting these foods gradually. I have talked to some mothers that have. You are going to find casein not just in milk but also cheese, yogurt and pudding. I know they make soy yogurts ect.. here. Not sure about Canada. I am just going by what I have read in books and people I have talked to.
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