Thoughts on Alternative/special Diets for Kids with Behavioral Issues?

Updated on March 15, 2012
A.E. asks from Saint Paul, MN
17 answers

Alternative heading to this post: Tired, stressed, and out of ideas

So my son is 4 1/2 and was diagnosed last August with PDD-NOS (essentially, a mild/high-functioning form of autism). He has some pretty amazing strengths and the potential to be a very well-behaved kid. But we're struggling with 2 major hurdles (and have been for awhile): potty-training and some extremely defiant behavior. The potty training has me at my wit's end. I've been working on it with him for well over 2 years, and after I finally thought we were making some progress (he was even in underwear for a few months), we fell back to square one. He's never been regular with his BMs, has only pooped on the potty for us a handful of times, and my belief is he started holding his poop in to the point of impaction. In December, he started "leaking" poop out bits at a time on a regular basis. I got so tired of cleaning out and/or throwing out underwear, I put him back in Pull-ups until I could get his system regulated again. In the meantime, he's effectively given himself permission to pee only in the Pull-ups, and some days it's like pulling teeth just to get him to SIT on the potty. To make matters worse, he's still "leaking" out poop, which means I'm changing Pull-ups 6-8 times a day. We have an appointment with a pediatric GI this Friday, so I'm really hoping to get some answers then.

At the same time, the boy has been pushing us more and more in attempts to assert control over any situation (we've starting calling him "The Great Negotiator"). Our battles range from getting dressed to washing hands before a meal to getting in the car to taking a certain # of bites to picking out PJs... He direly wants to call the shots at all times, and even when we occasionally concede, he'll turn around and say no to that too!

So my question is this: Have any of you mamas out there tried a special diet, either temporarily or permanently, to help with either physical or behavioral issues? Anything from gluten-free to GAPS to Paleo Diet to...?? Even something as simple as switching out regular milk for soy or eliminating dairy altogether for awhile? What were the results? Was it worth the extra effort? I'll be asking lots of questions at the GI appointment, but I also wanted to hear about some of your first-hand experiences. Thanks, all!

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So What Happened?

Thanks, everyone, I really appreciate the input. Let me reassure you all, I'm not looking to "cure" my boy. He is who he is, and I love every part of him. My biggest concern is his GI health, and I'm just hoping once we get to the bottom of that, the potty training will fall into place. Likewise, I'd like to believe that a healthier gut will lead to better behavior overall (but not miraculously change him into a neuro-typical kid). As for my own mental health, I am extremely fortunate to be surrounded by some very supportive people (Mamapedia company included!), and I do get some "me time" in, so there is much to be thankful for. I'll update again after our appointment on Friday. Thanks, mamas! :-)

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J.A.

answers from San Francisco on

My daughter's behavior improved drastically after taking out gluten. It did take a while for it to all come out of her system though so remember you have to give any change lots of time! We just took her off dairy a week ago and i am hoping it will help her even more. She has behavior problems as well, and we are just about to get her evaluated as we are out of parenting books and ideas!

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D.K.

answers from Pittsburgh on

There is zero scientific evidence that diet helps autism - despite all the parents who swear it helped their child. As far as helping with the GI issues - ask the gastroenterologist.

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S.C.

answers from Dallas on

My daughter has autoimmune diseases (juvenile arthritis, uveitis, ulcerative colitis, food allergies, asthma). They started before the age of 2. She is almost 8. When the ulcerative colitis was diagnosed two years ago, I found the Specific Carbohydrate Diet (SCD) (www.breakingtheviciouscycle.info) and she has been following it for almost two years. It has been amazing for her. She is off all but one medication (a low side effect, low cost medication). I am thrilled. Lots of work, but totally worth it. We tried eliminating a few items (soy, dairy, eggs. wheat) when my daughter was 2, but she had no improvement.

SCD is the diet that the GAPS program is based on and was created by a pediatrician. It is more restrictive than GAPS, so you would have to weigh the pros and cons, but many people have had success with both. Visit www.pecanbread.com for info about SCD for kids with Autism and GI issues. There's also a Yahoogroup that is very helpful.

Many GI docs will downplay dietary changes. If your son's does, don't let that stop you. My daughter's GI doc said the SCD wouldn't do a thing, but certainly wouldn't hurt. Later, when she saw the results, she said "we don't know if diet works because people generally can't stick with the restrictions." Well that's a lot different than saying it doesn't work. I think it should be encouraged and parents should know it's an option, even if it is tough. My daughter's life and health is worth the extra effort I have to put in, so I choose to do it. I work full-time and manage most of the household chores, so I don't have a lot of free time, but I make it work. Hopefully it won't be a lifelong thing .... as the GAPS program stresses... heal and seal the gut and then be able to eat a less restrictive diet.

Good luck!

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E.A.

answers from Madison on

Hi A.,
Sorry to hear of your struggles! I can understand what you're dealing with. My 7 year old son, also PDD-NOS, gave us very similar conflicts at 4. His potty training was accomplished only by telling him he was not allowed to go to school in diapers and he needed to figure it out before September. Miraculously, one week before school started he did indeed "figure it out".
What I have noticed with my son, and what I have heard from other PDD-NOS moms is that the little darlings are in need of very clear boundaries. My husband and I took a parenting class called Love and Logic. Google that to find the website, there might be classes at the elementary schools in your area. Basically, it taught us to not own the problem. Its your child's responsibility. It taught us to give the child choices and to stick to their decision. (but make the choices each something you can live with) For example, my son would absolutely throw a fit when it came time to put his coat on (in the middle of winter in Wisconsin!) So instead of giving in to the situation and trying to negotiate and talk him in to doing it, I started giving him choices. "Do you want to put your coat on or would you like to carry it to the car?" He would decide to carry it. So, I let him. He won't die from frostbite in the minute it takes to walk to the car without a coat. My son did this two times and then never gave me a hard time again about putting on his coat. My son NEEDs to have someone in charge. If i'm not in charge he will assume the role, thus the negotiating. I am definitely a more strict and firm mom than I envisioned, but as soon as I get "mushy" with the expectations, he becomes difficult.
I don't know if that helped or not, but let me encourage you to look in to Love and Logic, it really helped us a lot. Also, I don't know how similar our kids are but ages 4-5 were hellish for us.......it gets better. Kindergarten was a nightmare! but something happened over the summer that has made first grade very pleasant...maturity?...development? We don't have nearly the struggles we once did. I hope I will say the same for next year, but you never know!
Oh, and to not completely ignore your question about diets... (sorry for the rambling) We tried many different diets with no success. Gluten free, sugar free, dairy free.....in fact going through the "food trials" caused a whole other set of conflicts. But, I would encourage you to give it a shot. I've heard of other moms having a lot of luck with it. Every kid is different and what works for one may or may not work for another. I think the most important thing is that you keep looking and trying to find what helps. We also got our son in to Occupational Therapy, and tried medication. Both of these were a great help.
Good Luck!
E.

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M.L.

answers from Chicago on

Hi A. - I have to say I know your exact struggles. My son is now 5 and I could have written your post verbatim!!!!!! Seriously - take a look at some of my old questions if you have a chance. First, I want to echo with what Dana K and Kristina M said........

We have talked to the behavioral pediatrician, regular pediatrician, behavioral therapist, special ed teachers - they all said we could certainly try - and if the behaviors ARE caused by a food intolerance then the change in diet could help, however if it's NOT caused by a food intolerance behaviors are not likely to change simply by a dietary change.
So - I hope you find success in the dietary changes - we did not but I have heard some have success - best of luck.

2nd - I NEVER thought my son would be potty trained! We went through the EXACT same thing at the EXACT same age. I took my son to the pediatrician (he'd never been 100% trained however he had been doing great and all of a sudden the 'leaking' and not seeming to know when he was pooping happened) - he was impacted. We started using Miralax (per dr. recommendation) for 6 weeks everyday. Things started to soften and while he still had accidents his system had stretched so that the feeling wasn't there to tell him the pressure of needing to go.....so, once things were softened for a month or so he started recognizing again when he needed to go. We still use it but only a half capful a couple of times a week because we tried getting him off of it and find when it's too hard he starts regressing. My son will go weeks with no accidents and we think "great = it's finally over!!!" and then a week comes and he'll have a few accidents.....

Best of luck to you - my son has the same diagnosis and appears to have the same behavioral issues - the behavior we address with a behavioral therapist and through his special ed preschool - we use reward systems. My son very much "needs" to be in control and is defiant even if faced with an option he wants (if he didn't come up with the idea but wants to do it he will say no just because we offered the suggestion - ya know what I mean).

If you need support or just someone to sound things off to - feel free to PM me - I very much understand your struggles.

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E.D.

answers from Seattle on

Nah, I think special diets are only effective for kids with allergies or nutritional deficit/imbalances/special needs. I've not heard of any diet that cures a neuro disorder. I think eating well can help all of our brains function properly and I think if that's not happening, it can sure exacerbate underlying issues, or mimic others.

I hear you about feeling exhausted and exasperated though. That sounds like a tough place to be in mama, and I can relate to feeling like I'm out of options and at my wits end.

I wanted to offer one suggestion, that I got off a mama on the beach. Her little one was about the age of mine, and she'd just gotten back from a convention for parents of autistic kids. I don't know if you'd already tried that with your kiddo, but she told me it really helped her daughter when she drew out pictures before an activity.

For example, let's say she needed to get her daughter to brush her teeth, put on clothes, socks, and shoes, eat breakfast, and then walk outside to the car so they could go to the doctors. Well, she'd draw out stick figures illustrating each point. First there would be a little stick figure brushing her teeth, the putting on clothes, then socks.

I started doing that on some of our more difficult days and it helped a lot (she's got different stuff going on, but I like to grab from all the toolboxes I can find). I find it's also really useful in explaining difficult concepts, or emotionally weighted subjects. She can really relate and prepare, when she has a visual aid.

I also wanted to ask you a question. Do you have an ability to take a break and leave your house for a few hours every week? Just you time to relax, catch up on chores, make a phone call, or take a too hot bath? I parent a very challenging kiddo and I've got to be honest, without taking time out away from my kids I would snap. Since we can't afford a babysitter, I set up trades with a few of my mom friends. One of the boys I trade with, sounds quite a lot like your son, down to the potty training stuff (no leaking though on their end, so probably not as taxing). It's really helpful for both of us. She usually crafts and I usually go out for coffee.

Anyway, I really wish you the best of luck and big hugs. I hope you find the answers that you are looking for.

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C.B.

answers from Sacramento on

Autism is such a challenge for families. What works beautifully for one doesn't help another.

I would try the dietary changes, one at a time. Keep a notebook and see if you notice any changes. Any improvement is worth the effort and you'll never know until you try. Just make sure your Pediatrician approves.

As for the behavioral issues, I would change the way you word things to him. He's obviously very smart. Rather than saying "time to get dressed", ask him "would you rather put your pants on first or your shirt?". The idea is to give him choices (and in his mind- control!) of thing that don't really matter to you. "Do you want to carry your backpack to the car or wear it?"- your goal is to get him into the car but he thinks he controlled the act. Look into the book Love & Logic. Its amazing.

I think you will find some of the bathroom issues improving once he feels like he has control of his life in other areas. The one thing I learned while potty training is they have ALL the control and you have NONE. He's already shown you that by holding his poop. Just be aware of your reactions. Try to act bored by the whole potty issue but get excited when he shows improvement, no matter how small.

Best of luck to you. I hope you get some answers at Friday's appointment.

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R.K.

answers from Appleton on

My granddaughter is 9.5 yrs old and autistic. Her behavior is greatly improved since her mom put her on the gluten free casin free diet.

Google AUTISIM DIET

Also check out autisimspeaks.com and The Easter Seals website. Both have great ideas for parents with autisitcs.

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K.W.

answers from Cedar Rapids on

You could literally be talking about MY little boy, who just turned 4.5 last week. We've had him evaluated for 7 hours over 2 days at a top children's hospital and they insist he isn't "on the spectrum" but his behavior is identical. If you were closer, I'd take you out to lunch because being the parent of this particular type of child is the very best and very hardest thing I've ever done! A few things that have offered mild relief/control:

Eliminate red food dye. I know some people think this is a silly control-freak thing, but it WORKS. We can't even give him medicine with red food dye without him having MAJOR mood swings. If we can navigate the Valentine's season without red food dye, anyone can!

As for the bites of food, we've started using "Four 'cause you're four" with surprising success. It helps that he has a 2-year-old sister and he can then direct her to take "Two 'cause you're two" and feel like he's still in charge. *eye roll* :-)

For a long time now I've had moderate success with "first-then" statements. If he wants to eat his yogurt and I want him to wash hands first, it helps to say "First you wash hands, then you get yogurt!" For some reason, he hears that yogurt is coming and will wash his hands. I've been doing this so consistently that he KNOWS I mean it and will truly give him what he wants. We're at a point where on a "good day" I'll ask him to do something and he'll simply say, "First?!" as in, "I do that first and then get to come back to what I'm doing?"

When he's truly in the "zone" of defiance, if I can manage to keep my cool (which is NOT easy), sometimes I can count to calm him down. He's been counting to 100 since he was barely two and LOVES numbers and patterns. If I can get close enough to hug him and just count for him, then put into words what he's feeling, that helps immensely, but it only happens about 1 out of every 20 tantrums so don't feel bad if you can't get it to work!

Like I said, I wish you were closer so I could offer some support! Praying for you, your son, the upcoming appointment, for some answers for all of you. Feel free to e-mail me anytime!

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N.F.

answers from Minneapolis on

My 4 1/2 year old was recently diagnosed with Autism. I decided to eliminate Dairy, Gluten, Corn and Food Dyes for awhile and see how it went. We did not see a huge difference in his behavior so I started adding things back. Since we eat mostly whole foods food dye is not something that is readily in our diet in the first place. I have added corn and dairy back with no changes but the few times I have given him even a tiny bit of gluten he is uncontrollable. While we don't see a huge positive change in his behavior it does seem to be helping. He is actually eating better now than he did before the change so something must be going on there.

Here is my Pinterest board with most of my favorite GF/DF recipes. When we went dairy free my little man's favorite milk was Silk PureAlmond Vanilla Sweetened Almond milk http://pinterest.com/nicoleferguso/gf-df-food/

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J.L.

answers from Minneapolis on

Diet changes can and do work. Late potty training is often linked to undiagnosed food allergies and more. And yes, even apparent behavioral problems can be caused by alleries. You might want to check out this very informative cd by a specialist named Dianne Craft and the books she recommends on the cd and take it from there:

http://www.dianecraft.org/article-001.htm

http://stores.diannecraft.org/Categories.bok?category=Aud...

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M.G.

answers from Seattle on

Okay it appears that the previous two posters are somehow negating the effects of diets on behavior. My son who has autism could not have cows milk until the past few months at 5 years old. Prior to that it caused regression and other behavioral issues not to mention bowel issues within him due to his digestive tract not being able to properly break down the casein. We switched him to almond milk once this was all figured out.

I definitely recommend taking the advice of your GI doc and seeing what is really going on in your child's gut. This very well could be solely behavioral or it can be a combination of a myriad of things going on inside his body. Hope you get it worked out soon for the health of your son and your own sanity.

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K.G.

answers from Minneapolis on

Goodness, come on over and let's talk! We are on a gluten free and casein free diet for my son with high-functioning autism. It took a few days to a week, but we definitely saw results! He can now feel pain, is more aware and taking other people's perspectives, has better control of his bowels and bladder, is able to find the words to express himself btter (instead of just crying or hitting), and is just an all-around better version of himself! We have done a few other things, too, that for him were even more helpful, but not everyone is interested in the more alternative natural therapies.
If you are interested, seriously, give me a call and let's talk. PM me if you would like. And come on over any time!

Iwanted to add that there is a very big difference between food allergies and food intolerance. My son is anot allergic to any food, but when he has gluten or casein, we lose him. He is lot behind a fog. He has been tested with traditional allergy tests, and they come back with no results. If you are interested in testing blood and urine for intolerances, check out Metametrix. They are the only ones in the US that test for intolerances. I am not sure if your GI will be familiar with them, but ask for those tests. They are incredibly revealing!

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K.M.

answers from Chicago on

Everyone is going to tell you how "Wonderful" and amazing it was changing the diet and the results they saw. I have personally found NO CHANGE in my son (different condition but some simmilar symptoms) with any dietary changes. Now I do agree in finding out if there are OTHER underlying medical issues causing other problems - but I do not think that a food diet change can or will "fix" the problem but can/will alleviate symptoms of other issues. Now, do I agree that if there IS an underlying allergy or intolerance that the body's reaction to that issue can increase other behaivoral issues? Yes, but is it the "miracle cure" some will have you to believe? No. In regards to the potty training - take it from me, take a break. When I finally took a break and stopped he WANTED to do it! Oh for Pete's sake I was so confused, flustered and overjoyed I think I could have tested for a mental disorder myself! So, from my perspective, find out if there is a food allergy - see an allergen specialist and find out if there is an issue with the GI tract itself (you are already doing that) and move forward from there.

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L.S.

answers from Lincoln on

Last fall we started giving our 5 year old a fish oil table each morning and each night. This did help substantially with his behavior issues. I would say it took about 3 weeks or a month to really notice the change. Sounds crazy, but this is one thing that my husband found when he was looking online for solutions/helps for our very defiant, non listening son. The omega 3's help this.

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S.J.

answers from Des Moines on

Can you try the reward system for going potty in the right place at the right time? We used to put a big bag of cheap toys all wrapped up on the back of the toilet, every time our kid went, she got a toy, it worked really well.

As far as diet, obviously you want something high fiber, or give him a fiber supplement. I've also hear the experts say that kids who have high energy need a high protein breakfast (even just peanut butter sandwich and a glass of milk - not what we think as breakfast food, but it would be fine). The theory is that these kids burn up so much energy, if they don't have the protein to carry them, they get cranky because they're hungry or have a drop in blood sugar.

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N.R.

answers from Des Moines on

This may not work with autism and/or dietary issues, but I found that letting the child run around the house (inside only) naked, increased their awareness of their body functions. If they had an accident, it ran down their legs onto the floor. At age 4 1/2 they are old enough to help clean the mess up off the floor with paper towels. I've found that about a week of this and they are completely body trained. Also, if they do wear panties or pull ups and have a poop or pee accident, they are old enough to get a clean panty or pull up, remove their soiled underwear and lay it in the bathtub or take the pull up to the garbage. Another thing that works in warmer weather is to put down waterproof pads on TOP of their lower sheets and have them sleep with no panties or pull ups on. They will feel the wetness and want to be dry. Unfortunately, sometimes the top sheet & blanket gets wet too. If using a potty chair becomes a huge hassle with melt downs, forget the potty and go directly to the big potty. They can use a step stool (with your help at first) and sit on the big potty. There are small size special seats that fit on top of the toilet ring with handles for the child to hold onto so they don't feel like they are falling in. I remember a child who wouldn't sit for anything when starting out with potty training. He wanted to stand up like daddy to pee at the big potty. He mastered that (with help holding onto him) in 2-3 days. You can even play games by throwing a few cheerios in the toilet and having him see if he can "shoot" the cheerio. Just be sure the cereal is kept up out of reach or you may end up with a clogged toilet. Sometimes we did a "potty dance" (both of us) and were very silly dancing on the way to the potty. Sometimes we'd both go at the same time and have a contest to see who could start going potty first (of course you would hold off a little to give him a chance). He would get a reward (M & M's, jelly beans, cookie, etc.) of some sort if he "won the contest". Having races to see who can get ON the potty first, and renting video's at the library such as "Bear in the Big Blue House". My kids loved the potty video's geared for kids and asked to watch them every day. Try to make potty training fun and don't act like you expect the child to accomplish anything - just play games & have fun - something that the child will look forward to on his own without having to be coerced into it.

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