Advice Needed!!! | Autism PDD

Progress?? Well he's definitely not regressing. Social interaction has increased but it may also be coincidental with increase in age.  

Some backround: My son is 2.5yrs and a picky eater. He's had eczema since infancy and we've suspected Autism I guess a year or so. We finally had an evaluation the other day and are awaiting the report.

We haven't been able to get him to eat foods that his "normal" peers are eating. His meals (and inbetween) consist of a mixture of Similac Alimentum and Gerber Foods. In the morning we mix his formula with Gerber Fruit. In the afternoon, with a Veggie and/or Meat. In the evening, a mixed Gerber... like Chicken and Wild Rice.

He'll show interest in Chicken Nuggets and Fries, but tends to vomit when he has anything other than his fluid diet. Including crackers, cheerios, etc. It's quite a production to get him to accept anything from a spoon or fork. And he must have sensory issues because he's only willing to pickup/touch dry foods like Gerber Zweiback Toast, Carrot Wagon Wheels, and Banana Puffs.

He's thin and tall, like his parents, but his cheeks are full so the Pediatrician tells us not to worry and to keep trying. But he only eats half (or even less) when we try the spoon and/or other textured 3rd stage foods. The only finger foods he will consider are like I said...Nuggets and Fries. He loves Gerber Zweiback Toast, Carrot Wagon Wheels, Banana Puffs and sometimes the Biter Biscuits but he vomits from those too if he's had something to eat prior to.

Recently, our Walmart started selling the DHA Gerber Rice cereals and 2 fruits. So I thought we'd try 'em. Give him something different. And without even realizing it/trying, we did notice a difference in him. He just seemed a bit more "awake".

Shortly thereafter, we finally went for our 1st evaluation. Where the Dr. has recommended the GFCF diet...in conjunction with Gerber ORGANIC foods. She recommended NO MIXED foods like Mixed Veggies. If we want to feed him Peas and Carrots...just mix one container of Peas and one of Carrots. She says there's more preservatives in mixed foods and to avoid such when possible.

We haven't started all the GFCF stuff yet because it's been difficult to find everything she's prescribed, but we have switched to ORGANIC Gerber foods but I think I already made a mistake with that...I fed him Organic-Pasta Primovera. Which just because it's organic doesn't mean it's GFCF. To some of you "label readers" I'm sure my mistake was obvious to you, but proper nutrition and reading labels has never been my thing.

Granted I feed my son as healthily as possilble, but as for me I'm a fast-food junkie. So knowing what's in what is REALLY new and really OVERWHELMING to me.

But I'm doing my best to educate myself and make some changes. And in the few days I have attempted the GFCF diet, I haven't been able to rule out everything... I have at least reduced some of his intake. Which thinking about it, weaning is probably a better approach. And I have noticed a difference in his mood. Even his eczema has improved slightly.

I'll have to get the books mentioned above. It all just seems so overwhelming right now. I work nights and care for my son during the day, so I rarely have time to sleep, let alone read or make my own foods.

Hmmm...I think she prescribed some enzymes. I'll have to double check. Like I said, right now...it's all so overwhelming and I don't know one product from another...probiotics, etc. ???

We missed the DAN! craze and I am not going to try it now (this is my personal decision, of course).  However, it doesn't surprise me to hear that many kids who didn't previously have apparent gut issues improve to some extent on these diets. My feeling is that that's because the parents are finally FORCED to get their kids to eat reasonably good foods and a wider variety of foods.  Personally, I don't think it's because most of the children need to be without gluten and casein. It's just that they needs BETTER DIETS overall.  I know many parents who tried these diets for up to two years and so no positive changes and then went back to "normal" diets and saw no negative changes.  So it's totally individual. However, I don't see a lineup of tons of "recovered" kids.  In fact, of the hundreds of ASD kids I know, not a single one has "recovered."  Most have improved, but that has been through many years of lots of therapy, not through any diet that I have seen.  Others on the alternative therapy threads will tell you otherwise.  Obviously, you need to weigh the evidence and make your own decision.

The truth is, it's not going to hurt your child to try these things. But I would keep VERY close track (as in ABA-type data collection) of the behaviors you want to target through using the diet. Those you want to increase (social interaction, for example) and those you want to decrease (stimming, for example).  Just keep track all day every day of these behaviors.  Over a period of months, you should see some pattern.  If there are no changes or if there are significantly negative changes (I'd wait at least 3 months) then stop the diet.  If there are positive changes, you'll obviously continue. I'd also take videos regulary to visually track your child's progress. I'd also keep track of the interventions he's getting in school.  If you track those interventions alongside of the diet intervention, you might be able to tell if it's actually the SCHOOL intervention that's doing the most good. For example, if you see the least stimming on Tuesdays and Thursdays and it turns out that those are your child's OT days when he gets A LOT of sensory integration therapy, I think you can conclude that the SI therapy has something to do with the improvements.

If you depend solely on your perceptions over time and not on contemporaneous note taking, you'll never really know what helped, if anything.  Good luck.

I just want to post a little note of encouragement.  My son is now 19 months old and has been gfcf since early March.  In that time he has made astounding progress.  Before going gfcf I had a terribly fussy, picky, rigid, whiny, headbanging, self-isolated, stimming boy who made very little eye contact, resisted hugging and rocking, and had no social vocabulary.  Now I have a talkative, sociable, pleasant boy who snuggles on my lap and picks up new words on a daily basis.  He is still a little quirky and his eye contact is not what it "should" be ... but neither is mine.

I was never into special diets or alternative/natural treatments before I saw this work with my own eyes.  I thought this kind of thing was for kooks. 

A good thing to keep in mind is that autism is just a set of symptoms and a child may display these symptoms for many different reasons.  It also isn't always apparent which children have food intolerances.  Many kids who cannot tolerate certain foods just appear to be extremely sensory-seeking or badly behaved.  It's obvious to me that in my son's case, food sensitivities aren't the only factor at play.  We also have a lot of engineers and analytical thinkers in the family.  My son's systematic approach to life (and his social delays) is likely due to this as well. 

We just went to it last week. I have been able to replace most of his food items. I created a 2 week rotation menu on excel and posted it on the fridge so dad & the daycare person would know what to feed him. A good website with recipes www.tacanow.org I was told and read Children with Starving Brains, 3rd edition, that older kids take 1-3 months to see results. Check out this published paper by Dr. Jim Adams at ASU. He is head of the Chemistry Dept. at ASU and has a daughter with autism. I know people who have said their child went from night to day with the diet. http://www.eas.asu.edu/~autism/Additional/Summarybiomed07.pd f 

Good Luck! Also my local whole food grocer will order foods for me by the case (usually 4 loaves) of gfcf items. Kinnick bread is great and their donuts are AMAZING!