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Autism Diet Challenge: Just Try It! March 1, 2010

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting, specific carbohydrate diet.
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Right off the bat I want to warn you that I am sticking my neck out here in an effort to save the world, instead of  just worrying about helping my own son. And I’m sure someone is going to make me regret that I did, but I’m going for it so I can sleep at night…

Ok. I try to be open-minded, and I love a good debate. And I really try to be respectful of other people’s opinions when they differ from mine.

But if I’m being truly honest with myself, I need to face this one pet peeve I have that sort of deviates from what I just said.

I can’t for the life of me understand why parents won’t at least TRY an autism diet to see if it would help their child!

Let’s examine some top reasons why people won’t try it:

1. There’s no proof it works, and recently, there have been reports that say it doesn’t.

To that I say: Not everything, especially something like the implementation of a diet and it’s affect on behavior, can be adequately tested in a study. Is there anyone out there who wouldn’t trust their own gut and eyes over a medical report? Let’s not forget how many decades the government and medical establishment let us go on thinking cigarettes weren’t harmful…

2. It’s too expensive.

Yes, it is more expensive in the sense that you will spend more money on food for a special diet than a mainstream diet… unless of course your regular diet is one of take-out food. But, if your child felt better and behaved better, wouldn’t that be worth the cost? Maybe you’d offset the diet’s cost with the money you might save on other treatments that may now not be needed.

3. It’s too hard to do.

It is hard, at first. And at times, like parties and holidays. But parties and holidays with a wild child are hard too. What if the diet helped your child and you and he could enjoy the party for a change? In time, the diet  just becomes a part of life and that’s how you’d have to look at it. Look at it as a lifestyle choice, not a diet. Otherwise, like all diets, it’ll be doomed to fail. 

4. I can’t imagine “doing this to him” for his whole life!

First of all, take small steps. Tell yourself you’ll just give it a real try for 30 days. And then give it a real, honest try. Even when it’s difficult. And it will be hard at first…especially if it is working! No cheating. You will know in 30 days if there’s some noticeable improvement in your child. And when you see that change, that is where the strength to continue the diet comes from. And support groups online. For me, I saw improvements in my son within 2 weeks, but it took about 18 months on the diet before his gut healed enough that he finally had a formed stool…just days before his scheduled colonoscopy and endoscopy, thank God.

In my son’s case, we were fortunate enough to have very specialized labwork done through an autism study he was involved in (lab work you can’t just order from a local lab) and we KNOW he has some mutations and can not digest the proteins in certain foods. In fact, his body breaks them down into harmful opiates, which, when released into the bloodstream, travel to the brain and contribute to the autistic behaviors. For me, feeding him the typical American diet is like feeding him poison. What if your child has that kind of mutation, but you don’t know it?

5. He won’t eat that food. He’s picky.

Okay, who is the parent here? This is the time to get tough.  And the earlier you implement a diet, the easier it is to do. My son was just turning 3 and you have more control at a younger age. Plus the diet will be well established by the time he starts school and he won’t even remember McDonald’s nuggets, so he won’t long for them, though he may be curious about them.

Think of those processed foods as the enemy. Most kids are picky eaters. It’s in your hands whether you are going to let your kid’s chosen 4 favorites be healthy ones or not. If you stick to your guns, your child will eventually give in since his survival instinct will make him eat this way if that’s all you offer. Plus, some kids are actually addicted to foods their bodies are craving because bacteria in their guts need those foods to live. If that’s the case in your child, you need to break that cycle by depriving the bacteria from feeding. You do that by eating differently. You starve the bacteria and they die. And the gut heals.

6. It’s not healthy.

Come on. How balanced do you think the typical American diet of chicken nuggets, hot dogs and pizza is? With so many children becoming obese and diabetic, these diets are actually a gift of health that you can give to your child.

Even adults would do well on this diet. The Specific Carbohydrate Diet that my son is on has been helping celiacs, Crohns and IBS patients for over 50 years. Have you noticed how middle aged folks are suddenly unable to tolerate dairy or gluten? I’ve been told it’s because our bodies haven’t evolved fast enough to keep up with the processing of the foods we eat today. We so-called healthy people can’t break down these chemically-processed foods. How can our children then?

Under the supervision of a medical professional and with the proper nutritional supplementation if needed, these diets can resolve intestinal and digestive problems that you may not even realize your child is suffering from. Don’t you want to feed your child a diet that makes him or her feel their best?

7. My child doesn’t have any food allergies or sensitivites so he doesn’t need the diet.

Maybe. Maybe not. A doctor can give a diagnosis. But a mother’s instinct says a lot, too… if she knows what to look for. Does your child have any of the red flag signs of an allergy or sensitivity…such as red cheeks, skin rashes/eczema, dark or reddish circles under their eyes? Maybe constipation or diahhrea? Does he eat certain few foods to the exclusion of most others…almost like an addict? Can’t sleep at night?

8. I don’t know where to start.

First, find a doctor who supports autism diets. A recommendation from a friend is best, but failing that, look for a DAN (Defeat Autism Now) doctor or chiropractor. Allergists and immunologists with autism practices may be able to help you. Some, but few, pediatricians may too. Be sure they have experience with autism diets.

Do some research. There’s a few different diets out there. The best one (in my opinion only) is the Specific Carbohydrate Diet  my son has been on for 5 years and you can learn all about it by reading the fascinating book Breaking the Vicious Cycle by Elaine Gottschall. SCD is like GF/CF to the extreme since it allows no grain at all and my challenge is to try this diet for 30 days if you think you can handle it! (For more info, see the Autism Diet Help tab in this blog). But there’s also regular GF/CF (gluten free/casein free) diets and the Feingold Diet.

****I’ve always been an advocate of therapies that may improve the lives of our autistic children …so long as they do not have the potential for harm. These diets are healthy ways of eating for anyone. There is no harm if a doctor is on board with any nutritional supplementation. It may not make any difference in your child’s behavior, but it won’t hurt him or you to try it. 

But what if it helps him? What if it even recovers him?

Can you live with yourself if you didn’t take that chance? It could be the simplest of answers. Just 30 days to see if it may help. You don’t need Jenny McCarthy or me to tell you. You will know if it’s helping. And if it’s not, go off it with the peace of mind of knowing you gave it a real try, instead of living with the nagging wonder if you should do it.

By April 1st, those persistent red cheeks and shiners could be gone. Maybe even some language. Please trust me and just try it. And come back and let me know how it went!

What has your experience been with autism diets? I want the good, the bad, and the ugly…

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Regression by Strawberry May 2, 2009

Posted by hopeauthority in Autism, autism diet, Children, Health, school, specific carbohydrate diet.
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Gotta love those care-free days of youth and all the fun school projects you do in special ed first grade. You’ve got the non-edible projects with macaroni and glue. And, occasionally, you get the edible ones.

And when your kid is on a totally restrictive special diet from hell , these projects are the ones that make you want to kill somebody. Or kill yourself. Oh, and it’s extra special when you get only one night’s notice about the project…

So the note comes home:

We’re going to be making peanut butter and jelly sandwiches in class tomorrow. Can you send something in so that Fabio can participate?

Unlike the hundred of thousands of kids who’d die from it, it’s not the peanut butter that’s a problem for Fabio.  I have a special organic peanut butter with no additives that he loves.

And it’s not the bread. I make Fabio bread from cashew butter, eggs, baking powder and a pinch of sea salt. 

It’s the freakin jam/jelly that is the challenge.

I’ve been canning jams and jellies for competition for almost 20 years, so thankfully, I have a leg up on most folks in that area. And I can substitute honey for sugar in the recipes. The trouble is the fruit options.

Fabio can eat many fruits, but not the ones that make popular jams. He can’t tolerate berries, grapes, or apples due to their high natural salicylates and/or phenols. And what’s worse is…he loves them. If you put out a bowl of blueberries and a cake, he’d go for the berries every time.

When he eats these fruits, he is in heaven. Until the next day. And the five to ten days thereafter. Yes, you heard me. The effects far outlast how long the food was in his body.

It’s like a Jeckyl and Hyde thing.

He regresses across the board. Total loss of eye contact and any functional language. Very bad behaviors. Repeated tantrums. And it goes on for days! Of course, it’s never worth the moment of pure joy he had while eating the coveted fruit. And yet again…

Still, every 6-12 months a situation will arise when the temptation is too great. When heroic efforts would be needed to avoid the fruit. When just enough time has elapsed since the last time to let me forget how hard those several days of hell are going to be on all of us.

When you think that maybe… just maybe… this time it will be different because maybe… just maybe… he somehow outgrew this allergy.

So I stay up til 2 am making this gorgeous, ruby-red strawberry jam for my little man. And I bake him a fresh loaf of his bread and slice it a bit thicker so he’ll be able to spread on it without ripping. And I packed a little container of his peanut butter. And I crossed my fingers.

Sleepyhead walks in to the kitchen at 7am, sees the jam in his lunchbox, removes the container, and says very nonchalantly: “No thank you.”

Umm… No freakin way!!! I thought. And… with the look of daggers coming from my tired eyes as I replaced the container in the lunchbox… I said through gritted  smiling teeth:

“Mommy made you yummy jelly to make peanut butter and jelly sandwiches today at school.”

“No thanks.”  As he removes it again.

Okay, this is going nowhere. So, I give him a tiny taste. And in one instant a memory awakened inside him. And his green eyes widened. And he smiled. Big.

So he happily went off to school with the promise of more jam in his future. And I met him up there later to give him some enzymes to help him digest the berries. And he came home begging for more PB&J sandwiches…which I gave him… until the small allotted amount of jam was gone. And he was in heaven.

Until the next day when regression set in.

But I’m happy to say that it is less severe than it’s been in the past. He has more language now and has retained it. Eye contact is okay for the most part. The bad behaviors are only evident when demands are placed on him that he doesn’t want to do and even then, not as bad as before.

It gives me hope that my boy will someday be able to enjoy the simple pleasures in life.

Like fresh strawberries in the summer.

And maybe a friend to share them with.

Green M&Ms Make Me…Angry September 19, 2008

Posted by hopeauthority in Autism, autism diet, Health, specific carbohydrate diet, Uncategorized.
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Argh! Another dietary infraction at school. It seems ‘C’ got an M&M…from the floor, no less! And here’s the ironic thing… when the school nurse called my cell to tell me about it, I was eating breakfast with some of the moms from his class. And one of them sent in M&Ms that morning.

This mom is a new friend of mine. A few of us formed a breakfast club of sorts, meeting for french toast, bacon and support every Thursday morning at the diner. (Don’t know why we didn’t start this club up last year, but I guess we just had to get used to our own transitions to kindergarten.)

These women are already so important to me. We not only have parenting an autistic child in common, but our kids share the same teacher. Our shared experiences really empower us. We are becoming our own little “force” to be reckoned with. A little like “Don’t mess with the kids in class 1-5”. Wait til we join the SEPTA team next week!

So, the M&M thing really set me off… especially coming right on the heels of the “raisin incident”. And mostly because it set ‘C’ off–literally. It had chocolate, dairy, sugars, and artificial color/dye, just to name a few of the offensive parts. Who wouldn’t want one? Especially a little boy. Or the little girl who was the intended recipient of the candy.  In fact, I know several people who can’t push themselves away from a bowl of them. (Of course, they are my husband’s family and that’s a whole other post…)

So ‘C’ is not his usual self now. And how long that will last remains to be seen. (Bananas do him in for 10 days.) The regular ‘C’ is gone… replaced by a boy who waffles between maniacal laughter and bouts of sudden crying and sadness. He squeeks out “feel better”, but can’t tell me what hurts. His verbals are down.  He peed a little in his pants because he is not as focused. He peed a little in the tub for the first time in his life.  He’s even limping a little, but he didn’t injure himself. And so we wait…

So I’m mad about it all. Not at my friend. After all, she sent them in as a reinforcer to motivate her child. If ‘C’ didn’t have these diet issues, I can’t say I wouldn’t have sent them in for him, too. Though I do wish the kids, who are all advanced enough in age and skill, would all just move on to non-edible reinforcers, like stickers, playgound or computer time, or something similar and a little more toward mainstreaming. No one would argue that most kids would be better off without candy-especially in the morning.  (Of course I’ve always been put off by the food reinforcers, even when used on ‘C’ as a toddler. They always made me feel like ABA was dog-training. “Do this trick, and here’s your treat”)…

I am mad ‘C’ can’t have M&Ms. I’m mad other kids can–and do–in front of him. I’m mad that they are always at my husband’s family’s functions. I’m even mad at myself for eating them when ‘C’ is not around.

So, I guess green M&Ms make me mad. And to all of you out there with your minds in the gutter… they certainly don’t make me horny. What’s that  anyway?  Anyone remember?

Autism Diet and Schools Don’t Mix September 15, 2008

Posted by hopeauthority in Autism, Children, Health, Parenting.
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(First-timers: See Autism Diet Help section)

Only a week into school and the phone call came.

“Uh, Mrs. M… It’s Ms. V.  We got a call from the cafeteria…” the school social worker began. “It seems that ‘C’ got…a raisin…”  I remained silent for a moment, to take in the inconvenience of the statement.

“I’ll be right there with an enzyme”, I replied with a slight sigh.  And so the saga goes when you have a first grader with special needs on a special diet.

Now, could I have just brushed the incident aside? After all, it was only one raisin… and by the time I got to the school, it’d have been at least 20 minutes from when he ate it.  But then, I’d be sending a message that small infractions can be overlooked.  I’d almost be giving them permission not to take a future infraction seriously. So I had to go.

And just to be clear. Raisins are allowed on the SCD. Its just that my son can not tolerate them due to the salicylates/phenolic compounds they naturally contain. He is supersensitive to many foods high in salicylates/phenols.  When he used to eat a reasonable portion of them, he’d suffer behavioral consequences for several days…long after they physicaly left his body. Frankly, it wasn’t worth it.

So, off I went and gave my son an enzyme meant to assist with phenol digestion. That doesn’t guarantee anything, but it may help.  Fortunately, he didn’t appear to suffer any negative effects from the “single raisin incident”, other than it reaffirmed his longing for the fruit he can no longer have.

My son’s school is great. The teachers and aides seem to understand the seriousness of his diet… He can not eat anything that I don’t make and send in for him myself.  He’s starting his second year there and there’s ample help in the classroom and cafeteria. But accidents happen…and my son has quick hands if an opportunity presents itself. (Hey, maybe he’s “typical” after all…) I just have to hope that the infractions are few and far between.

His dietary restrictions are on his IEP. But as attentive and fast as the staff may be, the kids are apparently faster.

And they don’t read IEPs…