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#1 of 22 Old 03-09-2010, 12:58 AM - Thread Starter
 
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I haven't posted here in ages.

Mark is 4 1/2, he has a dx of autism and he has some pretty intense sensory issues (vestibular and proprioceptive), a strange and yet unidentified language delay, some very minor fine motor delays and is about 9 months delayed in gross motor skills. He also has some growing anxiety and I believe ocd issues. He's never had any oral sensory issues, feeding problems, nothing.

But now. Now it's a total fight to even get grape juice into him. He used to be a huge eater, stuffing food into his mouth, eating mostly carbs but also fruits, veggies and some proteins. I could always count on a bowl of applesause and a bagel to be a good breakfast.

The last few months he's slowly grown into being afraid of his food. He takes teensy weensy tiny bites so that nothing touches his lips or face and he totally panics if anything has "strings" or is off color - a piece of grilled chicken must be stripped of any grill marks, spots or blemishes. He won't eat apple slices after they've been on his plate more than 5 minutes b/c they start to brown in the air. He won't eat his beloved rotini noodles because they touch his tongue. He can't take a swig of water to help him chew up something tough because then the food will touch. He cries, panics, coughs and gags his way through almost every meal and this is the same boy who has such a high gag tolerance that he can stick a toothbrush halfway down his throat and laugh at how it feels.

He's behaving as if he has major feeding issues and/or oral motor and sensory problems, but that doesn't make sense. He's eating less than half of what he would normally take in and it's mostly juice, soymilk, the occasional apple slice or a few bites of a muffin. I'm NOT HAPPY. I'm worried about it from many different angles, it's lasting a really long time and getting more and more difficult which is the most worrisome to me, but it's also really frustrating. He won't eat, so he's grumpy and hungry and angry and then he won't eat, so he's grumpy and hungry and he asks for food and then......he won't eat. He's not getting teeth, doesn't have mouth sores or an upset stomach.

WHAT IS GOING ON???
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#2 of 22 Old 03-09-2010, 01:14 AM
 
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Well...he's 4 and he does have sensory issues. We've got one, too. He used to be a great eater--he ate almost everything. Fish, shrimp, spinach, broccoli, salads, meats....everything. He did have feeding and texture therapy as a toddler, but after that it all seemed fine. And then it got worse...and worse...Right now, he's 4.5 too, and although he's not as bad about this as you describe your son, he isn't eating that well and he isn't gaining weight that well anymore. He's scrawny.

The one thing that has helped has been a trial of gluten free eating--turnaround happened in just a few days! Now, we are starting over again...but not too crazy, b/c we have to do some bloodwork this week and need his diet to be the same as what it used to be for the test.

The dev ped did say it's kind of normal for kids like this to get worse about some things as they get older.

You aren't alone! Personally, if he's not in OT right now, I'd get him back in for some help w/this and I'd give the whole GFCF diet a try.

GL!

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#3 of 22 Old 03-09-2010, 01:18 AM - Thread Starter
 
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We do see an OT weekly for sensory work and I do plan to talk with her about this. She has great ideas for oral issues but it's not her area of expertise, I've found.

We're dairy free and have been for 9 months now. Why would going GF encourage him to eat? I've dabbled with some GF foods (Tinkyada rice noodles, gluten free breads and muffins) and he hates them, he's refused them well before this "strike" started.

I've recently had his allergy RAST redone and he's not reactive to anything food related anymore (per this type of test anyway), just the same old enviro allergies.
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#4 of 22 Old 03-09-2010, 01:30 AM
 
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My dd has sensory issues also, and had a strike last year. She wouldn't eat anything. This went on for a few weeks, than she got a rash. Fast forward past a few wrong diagnoses, and it turns out she had freeking scarlet fever She never complained. Anyway my reason for telling you this is because SPD kiddos' sometimes have high pain tolorances. The ONLY reason we even had her throat swabbed is because she was not responding to steroid cream, benedryl. Her doctor said "I know she doesn't have strep, but lets just rule it out" We were all shocked it was positive. After being treated, she started eating again.

Check out possible medical causes, even though your kiddo isn't complaining. He may not feel the pain.

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#5 of 22 Old 03-09-2010, 01:57 AM
 
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I'm glad to see you but sorry he's struggling.
This sounds like OCD to me--particularly the food touching thing if I'm reading right. I hate OCD.
If I'm right I think you need cognitive behavioral therapy and maybe medication. If Caleb worsens to the point we need meds I plan to try insitol with him first (a b vitamin with good research w/OCD including pediatrics) but I'd be pursuing CBT first. I think getting any meds in Mark would be a real struggle at this point anyway.

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#6 of 22 Old 03-09-2010, 09:39 AM - Thread Starter
 
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Rachelle, hi. I was afraid someone would mention ocd. I've been suspicious of it for almost a year now but it hasn't been consistent or troublesome enough. I know ocd can present itself in many ways and it does make sense. He's also so very anxious about everything and he always has been an anxious child, but until recently I've been able to help him through it by being silly, using visuals, doing lots of prep work leading up to anxiety provoking events like transitions and changes, etc. Here's more about the food.

Last night we had chicken and biscuits. He wouldn't even touch the biscuit, turning his head away and screaming from the sight of it because "it has two colors, it's two colors I can't eat it" and then the chicken that he was willing to taste but then he freaked, freaked totally because "but what's in this chicken? what's inside the chicken piece?" and when I told him, and even showed him, that it was just more chicken all the way through he was still upset, saying "but what's IN the chicken piece?" and then I had to pull allllllllll the colors off it leaving just plain white chicken.

He did eat, of all things, the green beans, which is typically the food I'd have to cajole him into eating. He insists upon using a straw to drink so that nothing touches his lips and he takes super tiny sips of the drink itself. He's not eating enough nor is he drinking enough at all. He's a big, tall, hearty kid - not stocky but he's not small or skinny by any means. I'm so worried about this being something that really sets us back.

Kailey's Mom - that's very true. He's got a strange pain tolerance - some things he can't stand even the thought of and others he doesn't notice. I have noticed he has a lot of gas lately and his poop is different.

SMACK HEAD I should be giving him probiotics.
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#7 of 22 Old 03-09-2010, 11:46 PM
 
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We're dairy free and have been for 9 months now. Why would going GF encourage him to eat? I've dabbled with some GF foods (Tinkyada rice noodles, gluten free breads and muffins) and he hates them, he's refused them well before this "strike" started.

I've recently had his allergy RAST redone and he's not reactive to anything food related anymore (per this type of test anyway), just the same old enviro allergies.
B/c IF gluten is bothering him (not an intolerance, not celiac, not allergy), it could be because he can't break it down properly and the resulting particles are acting as opiates in his brain....the same can be true for casein, msg, and aspartame. They all can cause weird symptoms, like high pain tolerance, strange sensations that contribute to SPD, mental symptoms like anxiety, hyper behavior, sleeplessness, etc. Sort of like a drug addict. Kids on the spectrum and kids w/ADHD are more likely to have trouble with this. Once a child who has problems w/these chemicals is completely off of gluten, casein, msg, and aspartame, and has started to heal...he/she may start to eat better, b/c textures, sensations, and anxieties aren't bothering them as much. The best book I've read on this so far is by someone from the UK, Marion Le Breton (Diet Intervention and Autism).

This has been true w/my son. He also said that lots of things he likes tasted funny, which I think is b/c his body wasn't getting enough zinc (for whatever exact reason, IDK) . He had started eliminating veggies and shrimp...his main zinc sources....

As for "gluten free" foods....here's the deal, IMHO, *nothing* gluten free is going to have the same texture as what he is used to or you're used to. The closest I've come for pasta is corn pasta-no one in our family even noticed. My mom and I made a really good Yankee corn bread this week, w/Bob's Red Mill gluten free flour mix and corn meal (even my hubby ate it!) Some gluten free cereals are awesome, like Envirokids Leapin Lemurs, Gorilla Munch, and Koala Krisp. Some Chex are gluten free, and Betty Crocker now makes gluten free cake, brownie, chocolate and vanilla cake mixes. The brownie mix is actually really good if you do it right. The cookies take some getting used to! But the biggest thing is just not depending on breads so much. There are loads of other snacks and treats, which is where it gets tough b/c most snacks and treats are wheat based, so we allow Lays potato chips, Fritos corn chips...that kind of thing.

If it would help, it would probably really help. I know there can be soo many different triggers for our kids' behavior. The developmental ped we saw on Friday said that she doesn't even dx kids before age 8 w/Aspergers, although they treat it, she puts it down as "anxiety" for now, b/c the sensory issues causes such anxiety in all areas of these kids' lives. For our ds, he can have moments like your son has been having, but it just hasn't been as wide spread at this point.

I really feel for you about this! GL!

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#8 of 22 Old 03-10-2010, 12:57 AM
 
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He did eat, of all things, the green beans, which is typically the food I'd have to cajole him into eating. He insists upon using a straw to drink so that nothing touches his lips and he takes super tiny sips of the drink itself. He's not eating enough nor is he drinking enough at all. He's a big, tall, hearty kid - not stocky but he's not small or skinny by any means. I'm so worried about this being something that really sets us back.
Have you tried having him drink other things with a straw? My ds drinks yogurt and applesauce with a straw. Weird, but it works and gets the calories in him so I'm not complaining! LOL! The yogurt he drinks is thicker too so it takes more work (working the mouth muscles) to drink it.

My ds (now 6) is a bad eater too (plain, raw baby carrots, bananas, apples, applesauce, 1 kind of roll, 1 brand of bread, chocolate covered donuts, peanut butter, yogurt (one brand, one flavor), one kind of cheese (if cut a certain way), water, pediasure (sometimes, has to be chocolate) and apple juice (just last week he started!), homemade banana muffins (sometimes), potatoes (if they meet his criteria), ketchup, Little Ceasars breadsticks and sauce, 1 kind of waffle, plain pretzels, cheez-it crackers, apple rice cakes (sometimes), apple nutrigrain bars (but not nutrigrain brand, only kroger and meijer brands), fruit loops (sometimes), cinnamon toast crunch cereal, and sometimes homemade french toast). And that's a huge improvement over what he was eating

It's rough, for sure, but we choose to not make meals a battle time. We make sure he has plenty of food that he likes at mealtimes, but we also put "nonpreferred" foods on his plate. So if we are eating chicken, veggies and rice for dinner then he gets all those things on his plate (he doesn't eat any of them) PLUS he gets maybe a banana, a Hawaiin roll, a spoon of peanut butter and some baby carrots. It doesn't take much extra effort for me to do it and nobody is upset at dinner. If he's having a really rough day and can't even stand the sight/smell of the food he has the option of taking it off his plate (and putting it on a napkin or another dish) but HE has to take it off (either with his hands or, if it's messy, with a utensil). That way HE is taking responsibility for it and it gets him to interact even slightly with the foods.

We also take him to the grocery store with us and encourage him to pick new foods to try. This weekend he picked starfruit (which he touched and licked and started to take a bite of but decided he didn't like it) and kiwi (which we will try tomorrow). Oh, and a stupid little pizza lunchable thing But, again, if it gets him to touch the food.... I don't mind. I know he probably won't eat it, but it will get him touching the food and that's a step in the right direction!

I've had to really let go of my thoughts on what he SHOULD be eating and just look at the bright side. Cheez-it crackers? Not at all good for you. But it does have some vitamins and nutrients in it The yogurt that he eats? High fructose corn syrup We've tried switching to other brands with no success so I have to suck it up and let him eat it because it's a good source of protein too. Chocolate covered donuts? He eats two of those little things (the donettes that come in a white bag) every morning for breakfast (usually with a waffle). I look past all the crap and see that it does have some protein and iron in it! I've found that the more stressed I am about it, the more he fights eating. Now I try to be totally neutral on the issue (and b*tch to my dp about the issue after ds is asleep ).

Good luck! One day at a time

Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)

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#9 of 22 Old 03-10-2010, 01:32 PM - Thread Starter
 
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Steph, he has such a long list of foods now! That's awesome!

OH, I know about the processed vs. whole foods debate thing, I beat myself up about it all the time. The biggest issue for us is that both Mark and my 9 year old have some pretty significant problems with things like artificial food colors, sugar and processed foods in general. Sure, he might eat a hotdog for supper happily (maybe) but then the next 5 hours will be a behavioral nightmare. The tradeoff is too much.

We also have major respiratory issues here, all of them, so we can't have anything with dairy in it at all. Our other allergies are easier to work with - sesame and peanuts. But we're drinking soy and ricemilk instead of cowmilk, no yogurt, etc. And he won't even drink the soy without being dragged along through it anymore. He doesn't like to work hard with his mouth, drinking a thick substance reduces him to tears.

Do I approach this as an ocd/anxiety issue, a sensory/feeding issue, or both??
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Kailey's Mom - that's very true. He's got a strange pain tolerance - some things he can't stand even the thought of and others he doesn't notice. I have noticed he has a lot of gas lately and his poop is different.
FWIW (and I know I am not on the forum a lot lately so it may not be worth much), I think you should rule out a physical/medical cause before you even begin to deal with it from an OCD or sensory standpoint, etc. It sounds like he is trying to communicate that something is not right in his body.

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#11 of 22 Old 03-10-2010, 02:34 PM
 
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Who has the sesame allergy?
Sesame cross contamination (heavily) is in soooo much stuff. It was making Caleb sick but because it was trace I didn't see the type of clear and consistent reactions that would have clued me in. I won't go into the places it's crossed unless you want me to (it's overwhelming and I know you're already overwhelmed) but if Mark is your sesame guy I'd want to address that. It still sounds very OCD to me--the afraid to touch his lips thing sounds very OCD to me and the panic you're describing about the colors as he has you do a ritual (reassuring him it's all chicken, showing him, taking the surrounding parts off). I hope I'm wrong on that. I hate OCD.

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#12 of 22 Old 03-10-2010, 06:30 PM - Thread Starter
 
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The sesame allergy is Jeffrey, my 2 1/2 year old. I know it's pervasive and I know he's still getting exposed to it in small amounts but I'm working on it.

I made a list of all the foods he eats normally and then another list of the foods he's willing to eat right now and let someone totally outside the situation look at it and she said "he won't eat anything cooked". I hadn't noticed that at all. And today, he's eaten a TON in comparison to the last wee. Banana, apple slices, a whole soybutter sandwich, grapes, a cup of juice. In fact, I think today total he's eaten more than he had in the last 4 days combined.

He refused to eat breakfast though - eggs and toast. He said the eggs had strings and the pieces were all different sizes in his mouth and the toast was too hot, then too cold, then the butter side was too wet and then it was too dry. I nearly lost my mind at the breakfast table.
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#13 of 22 Old 03-10-2010, 08:49 PM
 
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That sounds very positive (and not so OCD....). I hope that continues--uncooked is better than nothing.

On the sesame. I have a list of safe foods if you want them. Mine are nut and sesame safe though so there is likely something not on my list that would be ok because nuts knocked it out. Breads and crackers are almost all contaminated. Berlin Naturally Bakery bread is the only commercial sesame free bread. No crackers are safe but they are easy to make (with all our free time...) Let me know if/when you want any sesame information.

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#14 of 22 Old 03-10-2010, 09:56 PM
 
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It's so difficult to figure out what's going on when kids can't tell you. Dd has almost stopped eating a few times - causes at different times have been sore throat, reflux, and cavities - so I wonder if it is a medical problem - hope you can figure it out what it is!
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#15 of 22 Old 03-12-2010, 11:13 AM
 
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this sounds like jet the past few months. i know for jet when he gets generally stressed his sensory issues get worse and he becomes very particular of what he'll eat. it usually happens here when we have been unstructured and he's feeling a little out of control. like after we have been sick and our routines are out of whack. or if he is making big progress in other areas (like when he potty trained recently ).

his food all being uniform and familiar is a big thing for him (and it sounds like it is for your guy, too). he just wants to know what each bite is going to feel/taste like and not have any suprises. sometimes we kind of reset or start over by offering only reliable foods for a couple days and kind of let him get comfortable with food again then let him add foods back in.

for eggs we use egg substitute and microwave it in a small bowl (greased or oiled) and it makes an egg patty.

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when our ASD son started limiting like that, turns out he has UC (ulcerative colitis/small bowel disease). we did have other symptoms to go along with it, but i did want to put that out there - our son quickly learned that eating made him hurt and so he quit.
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#17 of 22 Old 03-13-2010, 12:49 AM - Thread Starter
 
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You guys all have such great insights. I appreciate all of this response, thank you so much. He's still having some trouble but it's not quite as panicked as it was initially. I'm definetly seeing OCD tendencies in it. Rachelle, I'll be pm'ing you when I get my thoughts together.

Aja, how timely for you to mention cooking eggs in a patty, b/c that's exactly what I'd planned to try next time I serve them. His issue with them isn't the taste or texture (that I can tell) but rather that they are irregularly sized and not uniform in color. I served them for breakfast today and only gave him 6 equally sized, flat pieces and he at 4 of them before he refused to eat more. The ones he refused were the ones not shaped like the other 4.

He's refusing anything cooked, which is very strange. But, raw food is GOOD FOR YOU, so I'm not worried about that. I started probiotics again last week b/c he'd been complaining about tummy aches and he was having some unpleasant poops. He hasn't complained of that in a few days so I'm hoping the probiotic was the answer to that.
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#18 of 22 Old 03-13-2010, 09:29 AM
 
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Aja, how timely for you to mention cooking eggs in a patty, b/c that's exactly what I'd planned to try next time I serve them. His issue with them isn't the taste or texture (that I can tell) but rather that they are irregularly sized and not uniform in color. I served them for breakfast today and only gave him 6 equally sized, flat pieces and he at 4 of them before he refused to eat more. The ones he refused were the ones not shaped like the other 4.
You might also be able to make scrambled eggs in an egg ring, to keep a uniform shape

Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)

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#19 of 22 Old 03-13-2010, 09:46 AM
 
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Have you tried the GFCFSF way of eating? Many children overcome such issues after removing the offending foods. I also have a theory that the GMO products that are in most foods today are doing strange things to the children. As hard to believe as it may be, maybe they know there is something 'bad' in there. I suggest to everyone that they remove all food coloring, preservatives, nitrites/nitrates, msg, etc anything which is not real food, eat organic to be sure to aviod GMO and go GFCFSF (gluten free, casein (all forms of milk) free and soy free). It is easy to do and gets such great results. Are you treating for yeast and giving probiotics? Here are some links to resources

http://health.groups.yahoo.com/group/GFCFKids/
http://www.talkaboutcuringautism.org/index.htm (click GFCF diet tab at top)
http://www.generationrescue.org/

To begin to save the world, we must first nurture the children. Read "The Continuum Concept: In Search of Happiness Lost"    saynovax.gifgoorganic.jpgintactlact.gifMe-hippie.gifreading.gifhelp.gif10.5 yo dd1- nut.gifreading.gifblahblah.gif ; 5 yo dd2- angel.gifhearts.gifbouncy.gif
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#20 of 22 Old 03-13-2010, 04:36 PM - Thread Starter
 
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We are dairy free, artificial color and dye free, we eat very little processed food and as much organic as I can afford. We are not soy free and I have no intention of going in that direction.

Yes, we're doing a strong probiotic.

Thanks for your input, but I'm wondering if you've read the entire thread b/c I've mentioned all these things several times.
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#21 of 22 Old 03-13-2010, 04:49 PM
 
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We are dairy free, artificial color and dye free, we eat very little processed food and as much organic as I can afford. We are not soy free and I have no intention of going in that direction.

Yes, we're doing a strong probiotic.

Thanks for your input, but I'm wondering if you've read the entire thread b/c I've mentioned all these things several times.
no, I did not read the thread before posting. I should have. I found it in the new posts section. Hope your son has a better appetite soon.

one more resource I forgot to put down is http://www.danasview.net/ She has pretty much everything covered on this site, yeast, supplements, behaviors and what they mean, but the server gets tied up easily so at times I can't get the page to load. I mentioned soy because it is has been shown to be near the same as dairy as far as how it works on the brain of autistic children and is recommended to be pulled from the diet also. I am sure there is an article on TACA.

To begin to save the world, we must first nurture the children. Read "The Continuum Concept: In Search of Happiness Lost"    saynovax.gifgoorganic.jpgintactlact.gifMe-hippie.gifreading.gifhelp.gif10.5 yo dd1- nut.gifreading.gifblahblah.gif ; 5 yo dd2- angel.gifhearts.gifbouncy.gif
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#22 of 22 Old 03-13-2010, 05:41 PM
 
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ok here it is http://gfcf-diet.talkaboutcuringauti...hat-is-soy.htm

"Q. Why shouldn’t ASD children have soy?

A. Research shows that people with ASD have an abnormal immune response to the protein in soy (as well as the proteins in gluten and casein.) Whether or not your child tests positive on IgE or IgG tests to soy, it must be removed to be on the GFCFSF diet.

Diet research on GFCF alone showed 65% of ASD children improved, but research on GFCFSF (including soy) showed 91% improved."

To begin to save the world, we must first nurture the children. Read "The Continuum Concept: In Search of Happiness Lost"    saynovax.gifgoorganic.jpgintactlact.gifMe-hippie.gifreading.gifhelp.gif10.5 yo dd1- nut.gifreading.gifblahblah.gif ; 5 yo dd2- angel.gifhearts.gifbouncy.gif
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