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Does anyone with an autistic child have them on this diet (gluten free, casein free) or have you tried it in the past?
I am interested in hearing others experiences.
My son is 4(will be 5 in June).
He was diagnosed at age 2 with PDD-NOS (he also has down syndrome which complicates things)
Last fall he was diagnosed with severe autism.
He has regressed in several areas, including speech and some fine motor and gross motor skills. His stimming and lack of focus have really increased lately.
I feel like changing his diet and adding supplements is the next step I need to take. Just wondering if anyone has been there,and how it has worked for you.
AmyinWI
Does anyone with an autistic child have them on this diet (gluten free, casein free) or have you tried it in the past?
I am interested in hearing others experiences.
No and no, plus it just wouldn't work for our family.
I suggest doing your own research AND doing a behavior study of your child if you do decide to proceed. Quantify the behaviors, then test to see if there truly IS a change.
So many times people *perceive* an improvement (or regression). For instance, take "sugar highs"--people expect kids to be wild after eating sugar, so that's what they experience. Same with placebos. Gluten free may work for your child, but then it may not.
Even a "professionals" word should be taken with a grain of salt as they will be biased for/against by their own training and experience.
But too, I'm not sure that regression in the late two's is that uncommon. Rather, I think it is relatively common as it partially explains why so many people believed the vaccination myth.
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We tried GFCF, and it had no impact on my son at all. The only thing that seems to impact him as far as diet goes is food dye (he actually has a physical reaction to it, so we know there's something going on there). I agree with making some sort of behavior chart (maybe don't tell daycare, nursery teachers, etc. to get an unbiased opinion) to quantify the behaviors.
I have read that kids with DS have a higher incidence of Celiac/gluten intolerance though, so it might be worth a try.
The GFCF diet made a difference for my kids (one severe autism, bipolar, and epilepsy and the other an Aspie), but the SCD diet was needed to see a big enough difference to let them function well most days. Corn was the key to my son's rages (he rages on corn, and doesn't without it, and the reaction is dramatic and within 1/2 hour of ingestion consistently). I'd strongly recommend giving it a shot, since worst-case scenario you've fed your kids a healthy diet and spent a bit extra for a few months. I'd also recommend looking into SCD, since without that I may have concluded GFCF was a crock. Autism has a variety of causes and what helps one child may do nothing for another, but given how dramatically diet helps my kids I do recommend that other parents give it a shot.
Oh yeah, as for ABA you can download a ton of lessons free by using a free trial on [url=http://www.rethinkautism.com]RethinkAutism[/url]. I kept the program and used their consultants for a few months until I got the hang of things. There are also excellent guides for parenting autistic kids on [url=http://www.timberdoodle.com]Timberdoodle Co - Homeschool Curriculum, Homeschool Program, Resources, Education, Homeschooling Materials & Books[/url].
ladyjubilee
No and no, plus it just wouldn't work for our family.
So many times people *perceive* an improvement (or regression). For instance, take "sugar highs"--people expect kids to be wild after eating sugar, so that's what they experience. Same with placebos. Gluten free may work for your child, but then it may not.
But too, I'm not sure that regression in the late two's is that uncommon. Rather, I think it is relatively common as it partially explains why so many people believed the vaccination myth.
So you don't have an autistic child, you haven't tried the diet and even if you did, you would dismiss trying it because it "wouldn't work for your family?"
If you DID have an autistic child, wouldn't you want to try every possible treatment possible?
What if you had a nearly 5 year old child that lost the ONLY 15 words they ever said,along with sign language and other types of communication? Would you want to try to make it work for your family? That is where I am at!
I am not expecting a miracle AT ALL.... but I can say that after 14 days of no gluten and no casein.. my son has said "Mama" more than 10 times. He has not said that in over a year. :clap:
He has also slept through the night every night for the past week. He normally would be up until midnight, then awake at 2:00 am, then up again at 4:00am. Last night he slept from 9:00 pm until 7:00 am.
I also noticed he is no longer constipated and his episodes of regurgitating after meals has stopped. If this continues, I think we can take him off his reflux meds finally!
I know there are a lot of naysayers, but so far, my son is doing amazingly well on this diet. I will give it a 6 month trial, and see what happens. Nothing is too difficult for me,that I can't do this for my child. I have found lots of resources online,and am so surprised at the glutenfree products in stores. I made gfcf pancakes yesterday and my (very picky) 16yo said they were the best pancakes he's ever had!
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my18yodd is an ABA therapist.. she gives me alot of tips, if she werent' so busy, I would have her working with him more often.
RhondaBear
The GFCF diet made a difference for my kids (one severe autism, bipolar, and epilepsy and the other an Aspie), but the SCD diet was needed to see a big enough difference to let them function well most days. Corn was the key to my son's rages (he rages on corn, and doesn't without it, and the reaction is dramatic and within 1/2 hour of ingestion consistently). I'd strongly recommend giving it a shot, since worst-case scenario you've fed your kids a healthy diet and spent a bit extra for a few months. I'd also recommend looking into SCD, since without that I may have concluded GFCF was a crock. Autism has a variety of causes and what helps one child may do nothing for another, but given how dramatically diet helps my kids I do recommend that other parents give it a shot.
I have read a little bit about the SCD diet, and the feingold diet. I'm going to try gfcf for awhile, then try eliminating phenols and salicylates.... and see what happens. after that, I'll look into other diets more closely.
I really believe diet and nutrition is so much more important than what the medical community makes it out to be.
Adoptsis
I have read that kids with DS have a higher incidence of Celiac/gluten intolerance though, so it might be worth a try.
My son has LOTS of GI problems.. he has had them since about 12 months. His reflux has been severe. they keep saying he will "grow out of it" He is nearly 5!!!
In the past week I've not noticed him regurgitating once!! It used to happen several times after every meal.
Suzeb1
Hi. My dd isn't on the spectrum but has sensory processing disorder, large and fine motor delays, and met all the criteria for ADHD. The GFCF diet has been amazing for her.
The good news is that it's risk free. Try casein free first. It's easiest and the quickest to get out of the system. Oh, and we avoid almost all soy, too, since the protein is so similar to G and C.
ETA: she no longer meets the criteria for ADHD!
Interesting.. makes me wonder if it would help my dd with sensory issues.
I have found removing casein to be easy, but the dietician recommended soy milk to replace the pedisure my son was drinking before. I really hate the soy milk, I am not a fan of soy. Almond or rice milk is my preference. However, he is still on the soy,and until I can research some safe protein/fiber powders to add to his almond or rice milk, I will keep him on it. I need to look into vitamins and supplements too. Everything I read is so confusing!
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AmyinWI
Interesting.. makes me wonder if it would help my dd with sensory issues.
I have found removing casein to be easy, but the dietician recommended soy milk to replace the pedisure my son was drinking before. I really hate the soy milk, I am not a fan of soy. Almond or rice milk is my preference. However, he is still on the soy,and until I can research some safe protein/fiber powders to add to his almond or rice milk, I will keep him on it. I need to look into vitamins and supplements too. Everything I read is so confusing!
Amy, I'm so glad to hear you may be seeing some postive impact! A great resource is the "Kid Friendly ADHD and Autism Cookbook." The authors (a physician and a nutritionist) do a good job of introducing diets (including a very brief overview of SCD) and have some good ideas for protein. I liked it for the overview of why diet works, the recipes are okay.
The earlier discussion of "perception" of improvement is an interesting one. My dd was in OT when we went CF and she had measurable improvement on a whole series of objective assessments. GF "fixed" her constipation (which she had had since she was an infant) and her constant movement. We received her report card yesterday - for the first time ever she met expectations for being able to stay still and listen in class! I agree with you that when it is your child, and there is no harm, there is nothing that isn't worth a try.
Susan
We are just about to end a 5 week trial of gluten-free for my (bio) 8 year old. The main issue with him has been encopresis. After a month it seemed to be helping but now we're not so sure. We're trying casein-free next since both my husband and his bio sister are sensitive to dairy.
Keeping a record helped a lot, but it helps even more if you begin recording before you start. Sounds like you are having success, congrats!
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