Hopefully the prize will be hugs and smiles from Minifob. You are an amazingly strong woman Clod - I deal with the "usual" eccentricities with Princess of the Ryche and have to take the occasional deep breath. Can't imagine your level of pure joy when you hear new words or see a pattern broken.
(Re the waffle iron, can you buy the normal sized square one and cut them down to circles, or is that too much additional work? Or do you think he'd notice? Or is he over it?)

oh, clod, you -- you're just incredible to be doing all this.

wish I could send you a bunch :flower: :flower: :flower: :flower: :flower:

Hang in there CF -here's proof positive that the diet effort is worth it. It will get easier.

Motherfuckinggoddamncumslutbitchasswhores...

There's a new food Minifob can't have. By now we know the signs--he eagerly demanded the new food several meals in a row, and lay on the floor screaming and begging for more when I told him we would be having his (old) favorite food instead. This was right about the time that his behavior, which had been steadily recovering since Sunday, took another plunge.

The problem? This food--little spicy tortilla strips that are supposed to go on salads, but I thought they would function nicely as a chip for him too--is supposedly gluten-free and dairy-free. There's a slight chance that the unnamed "spices" on the ingredient list contains something like whey powder or sodium caseinate, and I've emailed the company to ask, but they would be breaking food labeling rules if that's the case. It seems more likely to me that he actually has a problem with something else in the list, and the obvious culprit would be everyone's favorite neuroexciter, MSG. (Did you know MSG directly affects the brain? That's why it tastes so good when it doesn't actually taste like much of anything.) Most sources of MSG are already eliminated by the GFCF diet anyway, but one major exception is canned fruit. There's still plenty of brands out there with no artificial sweeteners, including the ones we've been serving him all along, but I was really hoping I could find just one thing that I could definitively say it was always safe for him to eat without having to check the label every time.

One thing he likes, anyway. It doesn't do me much good to say he can always have raw broccoli.

Shit Clod, are you going to have to grow and can your own food? :smack:

Hang tough, you don't seem to be catching a lot of breaks, and your living it every damn day. But from a spectator's point of view, I'd say you've learned so much, and made so much progress, in just 4 months, it's a tribute to your dedication. Baby steps perhaps, but progress none the less. :notworthy

MSG is the evil.

Hang in there, Clod.

From where I'm sitting, it's just amazing everything you are doing Clod. I'm really impressed with how dedicated you are, and patient too.

Your kid isn't going to thank you, because kids don't do that, but you are awesome and deserve recognition for everything you are doing. I have nothing of any value or insight to add to any of this discussion, so I haven't been posting much in this thread, but you're my hero.

Historian John Hope Franklin died yesterday at age 94. I heard on NPR that he had been awarded the Presidential Medal of Freedom from President Bill Clinton. They said it was the highest civilian award you can receive.

You know, like, every mother deserves this award. But especially the great ones like Clod here. And Pooka of course.

Hey Clod - Does it make you cry sometimes? Cuz if it does, I just wanted to tell you THAT'S OKAY. You're allowed to get frustrated and angry and sad. You are amazing.

As recently as last night. Doing good so far today though. I should get one of those OSHA signs, "_____ TEAR-FREE DAYS ON THIS JOB SITE." :) I just got an email back from the manufacturer of his lotion letting me know that the container I have is pretty old, and newer versions of the product don't actually have dairy in them anymore. So that's nice.

What she says. and hugs from across the pond. You RAWCK!
(that's a good thing, 'kay?)

Hey Fob, see if you can get some sympathy/blackmail samples of the new product out of them...... ;)

What a sucky time you're going through. Have you gotten a massage recently? If not, I heartily recommend it.

Dude. That's the terrible twos. He should come out of them sometime between 3-4 years old.

Children at that age are damn near unmanageable. You just have to tough it out.

Have you READ the rest of the thread? Seriously?
:headshake

Heh... well, ah, just in case TGRR is wrong... :rolleyes:

This book has been amazing. It is basically a summation of every single autism-related medical study ever. I read it cover-to-cover in two days. Okay, maybe I skimmed some of the more technical bits, because it does get extremely scientific in some places. But it's laid out well enough for the layperson to understand. It dips into the vaccine debate, including the methodological drawbacks of studies on both sides, but that is just a small section of the book. The most important thing it does is explain which subset of the autistic population seems to respond to which therapy, and why. So now, instead of browsing the internet and finding 50 different treatments and no evidence to back them up except opposing anecdotes that it either dramatically helped a child or had absolutely no effect, I have each one laid out and explained, and can identify myself which ones Minifob might have success with. (The nutritional supplement that counterbalances glutamate in the brain, and has shown success specifically with kids who seem to have problems with MSG? That one's at the top of the grocery list.)

What's more, the author of the book currently practices in--get this--Austin, alongside several other doctors who are convinced of the connection between autism and diet/digestion issues, including Dr. Wakefield. Yes, that Dr. Wakefield. I've filed an intake form online with their practice, so I guess I'll find out on Monday what kind of a waiting list they have...

Awesome.

Oh, and another thing the book explained: it is the same single enzyme that digests both gluten and casein. Thus, if you have a problem with one (a problem in the opioid sense, that is, not just lactose intolerance or something) you by definition have a problem with the other. Goddamn hippies on the internet could get themselves taken a lot more seriously if they would bother to medically justify their claims, you know?

We are now on day 4 of 100% gluten-free. After two more baking attempts, I found a homemade gluten-free bread mix he will tolerate, if grudgingly. We have not yet had the opportunity to have the "no more Cheerios" battle, so we'll see how that goes eventually. Yesterday's awesome discovery is that he can (and will) eat a normal entree at Chipotle on this diet. I've also come to accept that Minifobette is going to have to be on the diet too, because I can't keep her brother from poaching unsafe foods from her tray or off the floor under her chair. But since we're starting early, she'll never know what she's missing.

Did you hear anything from Dr. Jepson? And how have days 5 and 6 been? I like your attitude with Minifobette - she probably won't figure it out until later in life when you'll be able to keep her food separate from his more feasably. (Don't forget to breathe. You're doing a great job.)

Fob rocks. It just needed to be said again.

This is awesome news!

I may be doing some of this too - my son is showing some ADHD symptoms so we are going to re-examine his diet. Nothing as major as yours though.

What an inspiration!

Things are progressing through emails with the staff, but they are currently scheduling initial phone consults (which do last an hour, so I can at least expect a fair amount of conversation to be had) 4 weeks out. What happens after that depends on how the consult goes.

I wish I could find a way to be more ecstatic without sounding ridiculous. The last two days have been awesome. His behavior has been unbelievable--not even a whine about a single thing, all day today. The last three naps/bedtimes he has just followed me upstairs without a peep when I announced it was time to get ready for bed. And his language usage is through the roof, so much so that the ECI woman who came today told me we'll need to completely rewrite his official program goals the next time she comes, because he's suddenly doing everything we'd been working on. For example, we'd been doing picture therapy to try to get him to consistently identify things by their names instead of sometimes resorting to using the item's color instead, but that's completely irrelevant when he now says to me, "Go downstairs, eat yellow waffle ah jelly. Open the gate, please." At the same time, he is more hyperactive than he has been recently, mostly in the form of running in circles around the house for fun and doing headstands, but he's doing it quietly, and he can be diverted to another task when necessary without freaking out, so he's welcome to run to his heart's content as far as I'm concerned. He's also been lining things up more than he had been, but he doesn't get mad if they get knocked out of place.

We had the Cheerios battle yesterday, and he gave up relatively easily. Still won't eat any of the three cereal options he can have, but he hasn't bothered to ask for Cheerios again, at least. We've also started him on some general vitamin supplements that are supposed to promote intestinal healing. I don't know if they'll do any good, but I've made sure they are harmless in any reasonable dosage, so I don't mind just giving them to him blindly until he can actually get some lab work done, either at the specialty clinic or through his regular pediatrician.

Speaking of his pediatrician, I'm gearing up for a little headbutting with her in a couple weeks. Minifobette is due for her one-year checkup, which is about the time they recommend the MMR vaccine. Most people don't realize that Dr. Wakefield's original study connecting autism and the MMR vaccine was never intended to demonize vaccines, and certainly never intended to become the political touchstone it has. It barely mentioned thimerosol in passing; the main point was that this group of autistic kids had a high incidence of chronic, live measles in their digestive systems, and that measles is known to cause intestinal damage, which is of course the major theory behind all the diet modifications, that these kids have "leaky guts." Getting measles for real would be even more devastating for these kids who are for some reason more susceptible to intestinal damage, so the vaccinations are still in theory a good idea, it's just a question of timing it when their immune systems are strongest, and perhaps not giving them all three diseases (measles, mumps, and rubella) all at once. So anyway, I've special-ordered the three vaccines separately from a pharmacy in Massachussetts, and I'm going to have them give Minifobette just the measles shot at this next checkup, while she's still breastfeeding so my added antibodies will give her the best chance to completely fight it off. They can do the other two at her 15-month checkup; those diseases never affect the gut so they pose no particular risk to her. The office staff were audibly annoyed at having to deal with my questions and my special order, but they complied without a fight, so I imagine the pediatrician isn't going to do much more than maybe roll her eyes when I inform her of my plan.

Please forgive the massive amount of detail, but I have a few family and friends following this thread now so I don't have to keep updating everyone individually. :)

OK guys, we have to be on our best behavior now. Her family is watching!


The information you've posted is really interesting. I have never closely followed the whole MMR/autism thing. The intestinal damage side of it is brand new to me and actually makes a lot of sense. It's like your comment before about how the hippies on the internet would be taken a lot more seriously if they would explain the scientific rational behind their rants.

I'm amazed at what you've learned about diet's connection. Who woulda thunk?

You are doing great!

There are literally dozens of diseases that they're beginning to connect to problems with the digestive tract. The specific thing with autism (at least Minifob's brand of it) is that he also happens to have the inability to digest casein/gluten. A different person could be missing some completely different enzyme, so their hypothetical leaky gut would result in some other protein getting into their bloodstream that is known to cause, say, rheumatoid arthritis, or liver inflammation, or any number of things...

Still in awe and blinded by Clods awesomeness. :notworthy:

In the case of milk protein lactose, it's lack of enzyme lactase that's the problem... so brand Lactaid is just milk with a little lactase added. Maybe the answer is to add the appropriate enzymes?

Clod you're doing your homework and making informed decisions, that makes you immune to eye rolling and the like.

I am so thrilled to hear about the last couple of days! I can only imagine how that makes you feel - Please on the end of a complete sentence? Amazing!!! I am so proud of you for sticking to your guns, doing the research, doing what you know works - You are probably the strongest mommy I have ever heard of - Most would have thrown their hands up and left it to doctors or shrinks at this point. Three cheers for Clod, and for Mini for his progress!!!

Hell, Mrs Lookout won't even do that. ;)

You're doing great lady.

Yes, I have since discovered that you can purchase the appropriate enzyme supplements. But they are expensive, and even the makers of the product tell you not to try to use it as a substitute for the elimination diet. They suggest instead that you do the diet, give your intestines many months to heal, and then slowly begin to reintroduce small amounts of casein/gluten in conjunction with the enzymes, to see if you can tolerate it. It's definitely a possibility for when he's older though, and has the self-control to understand why he's on the diet and why it's important to keep up with it. And maybe they'll be cheaper by then too. :)

Thank you for all of your hard work and congratulations on your breakthroughs with minifob. Way to go supermom!!

Walgreens has a store brand for the lactaid tablets. They're not quite as expensive.

But those are for lactose, not casein. These are the ones for casein. 1-2 pills per meal equates to anywhere from $22.50 to $45 a month. Not that far off from a prescription copay, sure, but don't forget the insurance deductible, and the occupational therapy copays, and the gluten-free foods which cost three times as much (no shit, $6 for a small loaf of bread, $8 a gallon for rice milk)... plus the fact that you may or may not be able to trick the toddler into taking it with every meal. The most I can guarantee is one dose a day, sometime during the day.

That doesn't look like it addresses whey proteins either, which I think is the bigger problem.

Fantastic, Fob. You sooo rock. I have more to say about that, but others have said it already so, I'll STFU and grin like an idiot on your behalf :D

Ouch. Do you have time to make your own? Evidently there's a bread machine now with a gluten-free cycle. Dunno how good it is.

Clod where are you getting your rice milk? Walmart has Silk and Rice Dream in 1/2 gallon containers in the milk section for less than $3. Silk also comes in single serves, like juice boxes, by the case for like $18.

IMO unsweetened Silk is the closest to cow milk in flavor/texture.

The bake-it-yourself mixes cost about the same, the advantage is they taste better. (That's what I eventually succeeded in getting him to eat, a mix called Bob's Red Mill Homemade Wonderful Bread... I'd say "wonderful" requires a pretty big stretch of the imagination, but it's edible.) If I were to go completely hardcore old-school-grandma-style, I could mix my own flours and buy things like xanthan gum, and then it would be cheaper. But I'm having a hard enough time coming to grips with the fact that I'm going to have to spend 4-6 hours a month baking bread and waffles for the next 16 years of my life. You may recall I don't enjoy cooking, and baking even less so. The things we do for our kids, eh?

My grocery store sells Rice Dream quarts for $1.99, no half-gallons. At this point he's still refusing all cereals (that aren't Cheerios) anyway, so smaller packages means less spoilage until he gets back into the groove. On my to-do list is to go check out the local Costco; a dietician friend of my mom's said they've actually got a really impressive selection of special-diet foods. They'll probably have it cheaper.

Back when my wife was a vegetarian, we let my Sam's card lapse and signed up for Costco because of much healthier foods available.

OK here's the plan: Fobette being ready for preschool will co-incide with the beginning of the economic recovery, and those first green shoots will be heralded by companies wanting training videos for their new hires and authoritative voices for their commercials to inspire confidence in the market place. You'll reem in the money and be able to emply a cook to deal with all that special diet crap. better still, you can write his/her salary off as a medical expense on your taxes :D

The reward, the hard won reward, revel in it! :thumb: No no no no, we want every stinkin' detail, type until your fingers fall off. Moar!

Heh... we were talking about that just the other night actually, how if we find a winning lottery ticket on the street the first thing we're doing is hiring a full-time chef. :) But you better believe the medical expenses are getting written off next year. 7.5% is a high threshhold to meet, but a lot of ancillary costs count, like paying for daytime care for your other kids so you have time to deal with the one kid's therapy.

Oh, be still my beating heart...! I have discovered a completely GFCF cafe just a few miles from our house which specifically caters to children.

And there are hints that they sell "family portions" to go, like I could maybe order 50 of their chicken nuggets and freeze them at home for future use. Assuming they're any good; we'll be finding that out soon.

AND if nothing else, they have a little retail pantry section too, and they sell two Minifob-approved snack foods (Glutino pretzels and Kinnikinnick animal crackers) at prices cheaper than the health food store I've been buying them at.

Awesome!
As time goes on, you will find more and more resources. It's hardest when you're just starting!

Having some nearby alternatives for the days that there is no time, or you're overwhelmed, is fantastic. Even the days you don't need them, just knowing they are there is comforting. :thumb:

Wow, clod! What are the odds? I am so pleased that the world is finally realizing there are people out there with DAILY special needs. How is the little Fob? And how are you?

I commend you for all the work you're doing to help your son.

I'd like to offer a food option that you may not have discovered in your quest for gluten-free foods -- kasha, aka buckwheat groats. And especially since you've taken him off milk products, another great aspect of kasha is that, [r]ich in potassium and calcium, buckwheat works with sodium to regulate the body's waste balance and builds and maintains strong bones and teeth.

Kasha is really quick and easy to cook, has a wonderful nutty flavor and smells like popcorn when you're cooking it, so it might really appeal to kids. I don't follow the directions on the box, but have created my own kasha pilaf recipe, though if your kids have any objections to onions and/or mushrooms, it's easy to just leave those things out and make just plain kasha. There are more recipes here.

Wishing you all the best!

Today was Minifob's evaluation with the school district, and it has been officially recommended that he be placed in the PPCD class next August (he's not eligible until he turns three, which is 2 days before school lets out for the summer.) But the evaluators did note a significant improvement from when they saw him just 2 months ago, pre-diet. Now I need to go meet the teacher and visit the classroom, to make sure it's a place I'm actually willing to put him 4 hours a day, 5 days a week.

In the meantime, I've heard a disappointing anecdote from my Early Childhood Intervention coordinator about Thoughtful House, the specialty clinic we're on the waiting list for. She says she had a family with an older autistic child who had begun experimenting with some enzymes and nutritional supplements on their own until they could finally get their appointment. They had some success, and sure enough, when they saw the doctor he confirmed that these treatments were indicated by the test results, and from now on they could purchase said supplements out in the lobby. The parents pointed out that the ones they'd been using listed identical ingredients to the ones in the lobby, and cost $30 instead of $200. The doctor told them that they could not vouch for supplements from other distributors, and would not treat him at all unless he was on their own brand of products. :eyebrow: I'm going to keep my initial phone appointment and see if perhaps there was a misunderstanding, or maybe these parents were talking about a single specific drug rather than generic vitamins, but I'm extremely wary.

This is one of the things that has pissed me off from the very beginning of all this research: fucking everyone is selling something, and it completely undermines their credibility. Oh yes, the GFCF diet works wonders--just buy our $80 instructional DVD, and order our wide variety of gluten-free products shipped right to your door... it's like, I don't know, the medical community should research this shit, so they can actually recommend legitimate treatments to their patients, and the patients won't have to weed out information on their own from shysters on the internet. For the record, the GFCF diet has been no less than a miracle for us, my kid is leagues better now than he was even three weeks ago, and you don't have to pay me a goddamn thing to tell you so. I take every opportunity that I can to say it for free, in fact, because I think helping people is a good thing.

The good news is, I talked with his pediatrician yesterday at Minifobette's 1-year checkup, and she is supportive of the diet, if not as enthusiastic about it as I am. She also said she is able and willing to perform some of the basic testing that is part of the biomedical protocol--for example, testing for yeast in the stool. If she finds yeast, she can treat it with an anti-fungal, regardless of whether she actually believes it is contributing to his autistic symptoms. I couldn't name any of the other blood tests off the top of my head, but she said to bring a list of the tests/treatments to his next appointment, and she'll happily proceed through it until she gets to a test she doesn't know how to do or a treatment she can't get on board with.

Sounds like you have a great doc there, Im sure that helps.

This thread, thanks to all your hard work, has become a light in the forest for other parents desperately looking for solid information.
Cool, what a great help to have someone with not only the knowledge but the power to actually help.

Good work Clod! Scammers are pretty thick in the autism community and given the individual differences you're probably best off being the expert on your kid.

A humorous anecdote in the life of an autistic kid:

At the rehab center where he has his occupational therapy, the administration has apparently decided to put cameras throughout the building. Maybe because they want to safeguard against sexual harassment suits or something, with those physical therapists touching people all over and whatnot... but at any rate, all the occupational therapists were letting us know that there's a slight chance we'll be getting a call at some point from some uninformed administrator reviewing the tapes, and could we please tell them that yes, our child normally screams in horror when people come near him, and when the therapist picks him up and flings him into a pile of beanbags, it's not torture, it's therapeutic.

Ha ha ha, that's great. Politically Correct clashes with real world solutions.

there was an item on the news while we were away about a couple who's autistic son was "cured" by their aggressive early intervention and their refusal to give up. he had speech therapy, physical therapy and diet adjustments. hang in there, you're doing the best you can and it's not just a blip on the chart that you're already seeing benefits from your hard work.

Here's another five families: http://www.autismyesterday.com/trailer.html

There are dozens, if not hundreds of recovery stories out there. The sad thing is, some of them have been out there since the early 90s, but no one bothered to listen until that airheaded harpie Jenny McCarthy demanded the spotlight about it. (And don't get me wrong, any publicity for the cause is probably a great thing in the end. She's just, ah, not the greatest spokesperson, you know? I've talked to some people who have actually been turned away from dietary interventions simply because she's the loudest voice pushing them right now.)

Thought this might interest you.
http://cellar.org/2009/autism.jpg

Sibling rivalry
 

I alluded to this in a random comment in some other thread, but having become so thoroughly educated on the symptoms and causes of autism, we started noticing things about Minifob's little sister that we never would have thought twice about otherwise (and indeed, didn't think twice about back when it was Minifob exhibiting the exact same behaviors...) As a sibling, she has a 10-30% chance of being autistic herself, depending on who you ask.

When we put her on the diet alongside Minifob--out of necessity, because otherwise he would swipe her unsafe foods--nothing really happened. But she's still breastfeeding, and in the week leading up to her vaccination, I decided to go ahead and put myself on the GFCF diet, just on the off-chance that it might help her fight off the disease in some small way. And she totally changed. She became more talkative and more playful, while before she was our quiet "observer" baby. And she almost completely stopped doing this odd little gesture she does when she's around people she doesn't know, where she sticks her arm up beside her face to physically hide from their view. It's not like she was exhibiting symptoms before--she has good eye contact, she smiles and interacts, she points, she says a handful of words. But these are all things that Minifob did too. And given how she responded to the diet, we started doing some other food challenges along the lines of things we've already discovered Minifob has mild behavioral and digestive problems with (nothing as severe as the gluten/casein reaction, but it's apparently quite typical for autistic kids to have lesser allergies as well.) Sure enough, I can get completely undigested food to come out in her poop, just like he has when he eats the wrong foods. So at the very least, I am convinced she has similar digestive problems, whether or not they are ultimately bad enough to affect her neurologically. We're now experimenting with giving her 1/4 doses of his enzymes to see if she improves the way he has.

At least group therapy sessions do offer discounts. I saw a special on Discovery awhile back that featured a woman with six autistic kids. What kind of person does it take to say, "Hmm, I have five autistic children, I think I'll pull the trigger one more time and see what happens?"

What are the other foods? Where do you get the enzymes?

Tomatoes and Oranges are the big culprits, and other fruits to a lesser degree. This is consistent with foods that have high levels of phenols, and the thing that digests them is PST, Phenol Sulfur-Transferase. High-phenol foods give him (and her) mild diarrhea with undigested bits of the food in it, and in his case, they lead to extreme hyperactivity and visual stimming (shaking crap in front of his eyes, staring at things very up close,) but do not seem to increase the tantrums or decrease language usage or sociability.

We've been using this enzyme so far, but we're hoping that as his digestion settles he'll be able to scale back to a combination enzyme like this one, because that will include a smaller dose of the phenol enzymes plus some of the enzymes Undertoad was asking about that digest gluten and casein, in case he has accidental infractions through playing with playdough or kissing an Aunt wearing the wrong face lotion, stuff like that.

so, clod, now your sig reads 8,065. Is that the number of words left to write in your autism nutrition book?