Further research took on the challenge of testing sucrose and aspartame effects by comparing them to saccharin as a placebo. It was found that “even when intake exceeds typical dietary levels, neither dietary sucrose nor aspartame affects children’s behavior or cognitive function” (Murray 1994).

I have heard that aspartame can cause problems. How is that a control?

beautifully played.

D, they could have given them all sugar. The moms were the focus of the test, not what the kids actually did. The study hinges on the mothers' understanding of what was given to the children.

Well just because UT is convinced is no reason for me to be also. I can think for myself as well. ;)

Although you may be right in saying that the medical community generally agrees about the rest there is still no actual proof that most of these diseases didn't exist previously [eta: in the numbers that are now being diagnosed], and it's going to be impossible to ever know for sure simply because there isn't the historical data available.

While I understand your point of view and somewhat agree, I remain skeptical. That's all I'm trying to say.

Medical research is a massive industry with stakeholders from all arenas vying for the money offered by governments and other organizations as you know. I think it'll be another 50 years or more before we really know if what we think is going on now actually is.

Something that has been gnawing at my mind also is the fact that so many kids have been diagnosed with certain behavioural issues and put on medication to regulate and control those issues, and yet the number of teen suicides is on the rise.

Logically, if we’re heading in the right direction with these things, shouldn’t that figure be falling?

I know mental health issues aren’t the same as physical health issues, but they’re linked.

Yes, but he's read the evidence. Have you? There is historical data available, there is "actual proof." But you have to look at it to come to a conclusion.

Better hope to God we're wrong, in that case. If things are the way we think they are, and nothing changes between now and then, in 50 years we'd be looking at an autism rate of 78%. There's a reason people are shouting that we can't afford to wait any longer on figuring this out.

I certainly agree that's a sign that they're doing it wrong. Medicating the kids is not the long-term answer. Finding the root of the behavioral disorders is.

Clod, he's read the book you recommended and that's great.

I'm not going to argue with you. I just wanted to express a point of view.

I wish you luck with your quest. I think you're doing a great job of informing yourself.

But don't you see, that's the point. I didn't inform myself until I had to. Until it was too late. I had the exact same "it can't happen to me and my family" attitude that most people have. All I can do now is try to inform others.

Ask yourself this: if, God forbid, three years from now Max is diagnosed, how will you feel if you didn't inform yourself? I know exactly how you will feel, because I feel it every freaking day. You don't have to reach the same conclusions I have, not at all. But every parent owes it to their children and themselves to honestly look at the evidence.

It's funny you would post that, because I was just this instant thinking the same thing. But I've been reading your thread and all the information you've presented, and I'm 10 times more informed than I was previously.

I thank you for that.

There are just some things that you're convinced of that I'm not, and possibly never will be. I don't have and surely can't be expected to have the same perspective as you Clod. Just for the record though, I'm not suggesting that what you're saying is wrong. I just don't believe we have enough evidence, and you have said yourself there needs to be more research done by independant sources such as government. I wholeheartedly agree with this.

We all need to protect our children.

What? Someone is actually thinking of the children?

All autoimmune diseases are on a rapid rise. Do a google search on the rise of autoimmune diseases. Lots of opinions. No proven answers.

Which is another reason why so many people are of the opinion that autism is also an autoimmune disease, rather than a neurological deformity that one is "just born with." Helps a lot with the treatment if you know what you're trying to treat. :)

Interesting, Clod. I didn't know that.

Oh happy days!!


We nailed down the final piece of the puzzle in Minifob's unending diarrhea.

It was all because of the... coconut. We had suspicions, because when we gave him this new (awesome, wonderful, and now can-never-be-eaten-again :() coconut yogurt, his poop actually got worse. I wouldn't have thought such a thing was possible, but it was. But it's not like he's having coconut all the time, we mused to ourselves--oh, wait, what's that? There's coconut in the vitamins he takes every single day? Well, what an opportune time for the nutritionist to tell us to go ahead and stop all vitamins for two weeks so we can get a baseline on his pee and poop tests.

And sure enough, three days later we had real, solid poo! :turd: I was still leaving room for the possibility that it was something else in the vitamins causing it, but then we gave him a piece of his (old and stale at this point, but it was all we had) birthday cake, which had coconut sprinkles on top. Diarrhea came back. Hyperactivity came back. Now, a little over 48 hours later, all is well again. VICTORY IS MINE.

Thursday is sample collection day. Then we do the "proctologist's special," and then we can start him back up on some different vitamins that are not tainted with the aforementioned big hairy nuts.


In other news, a friend of mine's husband has been diagnosed with Celiac disease, and they're pretty sure the 9-month-old baby has it too. So I'm helping her get acclimated to her huge new lifestyle change. Now, if I can just get the other friend whose son has a number of behavior and digestive problems to put her kid on the diet, we'll be at an even 50-50 in the Sunday school class. :borg:

*cheers* yey. Any victory is sweet Clod. I know it's shit that that's another nice thing taken off the diet sheet. But damn, yuo must feel pretty good right now.

Oh, and hey Jim? Thanks for politely but firmly kicking my ass back in this post. I needed it, and you were right. So thanks.

Anything new, Clod?

He's just trying to recruit anybody he can with his hippy rabbit-food propoganda. No thanks, mister! We eat real American in this house.

Fixed it for ya!

Well, we're still in the midst of his full intestinal cleanout. (I screwed up and gave him fruit just before the original lab sample collection date, so I didn't end up getting that taken care of until yesterday.) The poop is still a-flowing in a neverending torrent, but at least he doesn't mind the taste of the magnesium citrate, so I'm only nominally holding him down when I give it to him. We're up to 3 Tablespoons every couple of hours with no end in sight.

In other news, I got to be all bitter a few days ago when some insurance paperwork arrived in the mail. The neurologist (whom we had to go see as a formality back in April for an official diagnosis by someone qualified to do so) billed my insurance $500 freaking dollars for what was, no exaggeration, less than 15 minutes of time spent with us, 90% of which was me describing again all the behaviors that I had just thoroughly described to his nurse. But because he's a "real doctor" and he's only charging people indirectly rather than straight out-of-pocket, no one thinks that's a fucking scam.

Yet when I pay less than $120 for over an hour of face-time with a biomedical nutritionist, and I walk away with no less than twenty pages of information specific to my son's current symptoms, including recipes tailored to his known sensitivities, plus then receive several followup emails from the office reiterating all the next steps we talked about at the visit, and replies to my direct questions about things that have come up while following those instructions in the last two weeks... oh no, those people are "so expensive" because they refuse to deal with insurance. I am thrilled to pay Thoughtful House out-of-pocket. So far they have earned every penny of it. And it's so disgusting that people can't put two and two together and realize they are ultimately paying for the ridiculous doctors' fees that go through insurance. Anyway, I'm done with that rant now.

We're going to start a cool new thing next week at the occupational therapy clinic. It's called auditory integration therapy, and it's based on the same principal as all of the other sensory stuff we've been doing, that audio signals are not being interpreted correctly by the brain, and with the right input it can be retrained to function along normal pathways. You use this set of 20-30 CDs that sound just like normal elevator music, but they actually do funky stuff with specific frequencies being played at certain intervals--including the really high and low vibrations that most people can't even hear, but studies have shown the brain is still picking up on them. Ideally you listen to them through headphones, because that directly resonates the bones in the inner ear and makes the strongest connections, but some benefit can still be achieved if you play them over a speaker in a room, as long as the room is pretty quiet and the speakers are of high enough quality to play all the extreme frequencies. I assured our therapist that I do, in fact, have audio equipment up to the task. :) Unfortunately the discs are pretty expensive, since they're meant to be purchased by therapy offices rather than individuals, and I've been told that the copy-protection on them is extremely good. So we're going to do the full set over time in her office, and in the meantime I'm going to order a single disc for home use and see what kind of benefits we get from playing them through the speakers.

But the real reason I want one for home use is for Minifobette. She's inching closer and closer to having her own diagnosis, and one of her traits is definitely auditory defensiveness (as opposed to Minifob who was all about the tactile defensiveness, refusing to wear long-sleeve shirts or have his hair cut and such.) She screams and covers her ears at specific noises that aren't especially loud or grating, but they freak her out every time. Like when the water is running in the downstairs sink, or whenever this one character is talking on a particular Elmo DVD. He can be on the screen just fine, but as soon as he talks she throws her hands up and starts shrieking. Supposedly the misinterpreted audio signals are causing her to hear certain frequencies much louder than they actually are. Auditory Integration Therapy has been shown to help all kinds of autistic kids, but of course the greatest benefits are seen by those who have obvious auditory sensitivities. Anyway, it's going to be hard enough to get one kid to sit there with headphones on for any length of time, but two would be extremely difficult. So hopefully we'll get at least some benefit by just broadcasting it in the room while they're playing together.

But man I wish I could see what those waveforms look like...

Edit to add: Oh yeah, crazy story about one of the series of AIT discs: the discs all have different music on them, since the music itself isn't really what's important, and a handful of them have nature sounds like whalesong and stuff. The people who developed these particular CDs said that at first, the groups of autistic kids they were testing them on were freaking out and hated the ones with dolphin sounds on them, and they got one of the older ones who spoke well to explain that the dolphins sounded "upset," that she could tell they were "locked up in prison." So they scoured audio libraries until they found dolphin sounds that were definitely recorded out in the ocean instead of from dolphins in captivity somewhere, and the kids did a complete 180 and said they liked the sounds now. The engineers swore they couldn't hear any difference between the two kinds of dolphins, but all the kids agreed that the ocean dolphins were "happy."

I'm tellin' ya, it's a superpower.

Wow - glad to hear the mag citrate is tolerable for him - I cried at the thought of you having to restrain him like that. And I'm sure you're glad that part is almost over!

Agree about "real doctors" vs. people like Thoughtful House - sounds like they know exactly what they're doing because that is ALL they do. I'd rather pay them for their true understanding than him for what he read out of a book who knows how long ago.

And love the AIT - it makes sense - hope it works with both of them! My mom's house cleaner (wow, that sounds snobby) has a son who is blind and autistic - my mom suggested piano lessons - my old piano teacher has raised her own autistic daughter for twenty something years, so she knew what she was getting in to - the most patient, kind, loving woman, who gets truly happy and excited when she sees half an ounce of progress - and the kid is THRIVING off of it.

Music really is the best invention ever.

How expensive are the audio cds?

About $50 each. Not bad, really, unless you're trying to get the whole set. For some of the programs, you're supposed to do the entire set in order, progressing from one to the next. Therapy offices usually buy these, because they're more intense and thus more effective. With others, though, all of the discs pretty much serve the same purpose, the only reason you'd want more than one is to mix it up and not let your kid (or their brain) get too used to one exact set of sounds. They say you can help drag it out by putting the tracks on random, plus we have a little visualization app on our DVR that will randomly select different themes and patterns each time a song comes up, so I think one or two discs will go pretty far for us. Plus, you're only supposed to listen for a maximum of 30 minutes at a time, and some parents say their kid gets awfully fidgety after about 15 anyway.

Yup. To all of this, but especially to the music stuff.

It's funny, because coincidentally we just signed both kids up for a weekly music class over the summer. It's one of those "mommy and me" style things for preschoolers, except instead of incorporating gymnastics or art, this one focuses entirely on music. Both the kids enjoyed the demo class we attended, but I was still on the fence until I saw in their scheduler that they offer a class just for developmentally-delayed kids--including the use of social stories and picture schedules, so it would seem they actually know what they're doing. That sealed the deal for me right away. My only complaint was that they hadn't advertised this anywhere that I had come across, it wasn't even mentioned in their own brochure. If they advertised this thing in the right places, I guarantee you they'd have enough people for 2-3 classes, at least. I emailed the information to our therapist in case she wanted to pass it on to any of her other clients, so hopefully it'll be a good chance to meet other parents in our area--confidentiality laws prevent us from meeting anyone through our therapist or school district, even if both parties are interested in doing so.

Aaaaand it's official. I have two children with autism.

Fuck autism.

Anyway, we had our next visit at Thoughtful House yesterday, the first one with the actual doctor, and it was just as enlightening and encouraging as the nutritional consult. We expected the stool tests to show yeast, and they did show a moderate fungal infection, but surprisingly they also showed a strong bacterial infection. I didn't realize that was possible, the two being natural enemies, but apparently they have either created their own equilibrium or are simply colonized in different sections of his gut. Furthermore, the culture showed exactly zero beneficial bacteria inside him, despite the fact that we've been giving him acidophilus supplements every day. So either my supplements are crap and dead on arrival (no way to know for sure, but it is a reasonable-quality brand,) or the infection is bad enough that the good bacteria have no chance of survival in that environment. So starting today he is on a prescription for a strong antibiotic, to be immediately followed by an antifungal drug. After that comes new, much stronger probiotics, and a collection of vitamin and mineral supplements to address the other nutritional deficiencies his tests showed.

But meanwhile, the tests also came back showing extremely high levels of lactic acid, but low-to-normal levels of a substance called pyruvic acid. Taken together, these readings indicate that he may have a relatively rare subset of autism (about 5-10% of the autistic population) that is caused by a mitochondrial disorder, which is genetic and incurable. (This would be the same type of autism that Hannah Poling has, by the way.) So if the mitochondrial disorder is confirmed, it means it would be impossible for him to ever make a "full" recovery, i.e. one where he could stop taking his medicines or go off his diet. However, it's still possible he could have a "managed" recovery, where the continued medicine/supplements and dietary restrictions would allow him to be indistinguishable from peers. It all depends on how severe the disorder is and how it would manifest over the rest of his life--many people live with mitochondrial disorders for decades and don't even know it. At any rate, confirming it would at least give us a clearer picture of how to proceed with some aspects of his treatment, so we had another round of blood testing today, and should know the results in a few weeks. A word to the wise: blood draws on an incredibly strong 3-year-old are not advisable, especially when they have to take eleven damn vials. He knocked out the needles so many times, I had to restrain him for twenty minutes to get it all done. My muscles were shaking afterwards from the workout, I kid you not. But once he was free he got over it within two minutes, so that was nice.

Meanwhile, Minifobette has started her intake procedures with Thoughtful House, and will get her own occupational therapy sessions once Minifob starts school in August. Whee.

So... Hanna Poling's parents won their vaccine injury case - with the CDC admitting that because of her mitochondrial disorder, she was injured by vaccines and developed autism... although I don't think they have decided on the monetary 'award' yet (but Bailey Banks (mmr injury) will receive over a million dollars over his lifetime for the care he will need because of vaccine induced ADEM leading to autism).

What does that mean for you guys?

Fuck autism, cancer, coma...

Edit: Are you getting your probiotics out of a refrigerator at a popular health food store that goes thru stock quickly - and checking for the freshest date? That shit dies quickly in the bottle...

Are there any hippy farms around you that make goat yogurt? That might be the better route despite the 'dairy' connection... actually a lot of people believe that the milk sensitivity thing is limited to only some types of cows ie. holstein bad / gurnsey good.

It means if we want to, we can put together the medical evidence (assuming the mitochondrial disorder is confirmed) and join the 5,000+ other pending mitochondrial cases on the Vaccine Court's docket. I'm not going to hold my breath on getting to the front of the line though.

Is a class action inappropriate because of the level of documentation needed?

I know it's the probably the last thing you want or have time to do.... but their care is gonna get [more] expensive. The time will pass anyway...

Oh bollocks, fobble, that's and extra kick in the knackers, so to speak. You sure do have your work cut out for you. You're doing splendidly so far, though, those are two lucky kids.

I honestly don't know. I know "Vaccine Court" really is its own independent body, so the same civil lawsuit rules don't apply.

Oh, we'll look into it, but I don't know what's actually involved. Maybe it's as simple as filing documentation, or maybe we'd actually have to hire a legal representative to argue our case, or something. Honestly, with Minifob there wasn't an obvious, demonstrable regression, his symptoms were already showing up by 3-6 months old. With Minifobette, on the other hand, there was a distinct loss of speech and social skills at 12 months. So she might have more of a case than he would anyway.

The new probiotics are refrigerated from the start, yes. The old ones supposedly only had to be refrigerated after opening, which never made sense to me, but that's what they said... They actually sell goat yogurt at our grocery store, but Minifob reacted poorly the first time we tried it. They say he might eventually be able to tolerate it after more time. I've got to say, though, the stuff tastes pretty tangy. He wasn't a fan. If I wanted to go really hardcore I could buy a yogurt machine and use my own starter cultures to make almond milk yogurt...

You can make yogurt from almond milk? How much is a yogurt machine?

My understanding is you can make "yogurt" out of any liquid that can be thickened and has a decent sugar content to feed the starter bacteria. Yogurt makers are about $40 to $60 bucks depending on the brand, but the real work is getting the containers completely sterilized before you start so you don't grow nasty bacteria alongside it. I know Griff's wife makes goat yogurt from their goats, maybe she would have some pointers. :)

Hi Clod, The yogurt recipe I have for goat milk yogurt is a vanilla yogurt with sugar and vanilla so it tastes yummy. It also has non-fat dry milk to help it get thick. You can probably skip this part if you don't mind it a little runny. We don't know how well the almond milk will set anyway.
I don't know if there's a milk-free starter. I just use store-bought cow's milk yogurt. It only takes about 2 tsp of starter for a gallon of yogurt so it's not much dairy. Or, assuming you get a successful batch of non-dairy yogurt, you can use a little of the first batch to start the second batch and that will be virtually dairy-free.
As far as cleaning the jars goes, I probably don't do as well as I should but it wouldn't take much to do better. I clean the jars with hot, soapy water then pour in boiling water (while they're still hot so they don't crack) then pour it out using a canning grabber so you don't burn your fingers. To improve on that, put them in a stock pot of water and boil for 10 miinutes or so just before putting in the yogurt mix and sealing.
To grow the culture, I fill a canning pot with 90 degree water and put the sealed jars in. (The yogurt recipe has you heat up the yogurt mixture to something like 120 so the contents will be close to 90 degrees by this point). Then put it in the oven with the light on and the door propped open a little. It's a little tricky to find the right environment to keep the temp close to 90 degrees (I think 90 is the right number). That's where the yogurt makers earn their keep. The recipe says it takes 4 - 6 hours but mine seems to take 8 - 12 hours to set up. It will set up a little more after it cools off in the fridge too. Now, if we've already decided that it probably won't get thick, I'm not sure how to tell when it's done. It'll probably get a slimy texture like, um, runny yogurt. And taste a little tangy.

I don't have the recipe with me but if you want, I can post it when I get home. It's probably similar to most yogurt recipes. Let me know how it goes.

I just found this on another site: (Is it our Shawnee?)


"THANKS to Nancy LC on another Board , a recipe is available the following are her words of wisdom:

Non-dairy yogurt Recipe

Ok, I gotta post this because I'm getting asked how to make this in several forums and I keep repeating the instructions. Instead, I can link to this!

I have a Salton Yogurt maker that makes 1 quart of yogurt, so this recipe fits that yogurt maker nicely.

Here's the steps one takes for making anything into "yogurt".

1) Kill the bad bacteria in your starting medium (milk, coconut milk, whatever). For non-milk products you can usually just boil it.

2) Add gelatin or pectin if you want it to get a yogurt like consistency, otherwise, if it isn't milk, it'll have more of a kefir like consistency. A thick liquid.

3) Add your bacteria food (something with sugars in it, like 1Tbl honey, pureed pineaple or banana). Mix well.

4) Cool to 90-100 degrees.

5) Add culture and incubate for 4-24 hours.

6) Pour into a clean container and refrigerate until it sets up.
================================================
__________________
~Shawnee

MAINTAINER since Aug. '01 "

Thanks, Pete. I suspect the almond milk will set pretty well, because it gets thick in the container unless you regularly shake it up. I'll have to look into the best starter culture to use--maybe I can just open up one of our current probiotic pills and dump it straight in? I have found that almond milk gets kind of brownish-grayish when you cook it, so I may end up using hemp milk or Dari-Free (powdered potato milk) instead to keep it from being so darn unattractive.

In other news, I am mailing the following letter to our pediatrician today:

[/quote]

You amaze me, Clod.

Jesus Christ! Wow.

Girl!! You go...

That's the best bitch slap I've ever read! Your intelligence and abilities are boundless. :notworthy

I think we need to replace the phrase "kick 'em in the c*nt" with "Clodfobble 'em". WTG

I just hope she reads it. I made myself cut out several bits about her personal failings, but I'm afraid there's still a decent chance she's going to toss the whole thing in the trash after the first few sentences. I actually included a photo of the kids to try to counteract that temptation, because it's a lot harder to just throw away a picture of cute kids, right?

God, and then I saw this today. Made me cry. This woman says a lot of what we're all thinking but never say, if you're curious.

Oh shit, but somehow I missed this!! As of June 10th, just one month ago...

My insurance is headquartered out of Connecticut (which is the only thing that matters, not what state you live in.) This is me. We are now covered. Fuck, that's why my insurance suddenly started reimbursing us for the Thoughtful House claims, when I had been told awhile back I was welcome to submit the forms, but it wasn't gonna happen...

Hey, could y'all do me a favor? Go here, and just do a quick entry of your name and click Send. This will send a fax to Nancy Pelosi's office urging her to include autism in the H.R. 3200 healthcare bill, and basically make a nationwide version of the Connecticut law I just talked about, superseding the remaining 37 states that still don't cover autism treatments in one fell swoop. Or, if you really feel like being proactive, you can call her at (202) 225-0100 and bitch her out for specifically excluding it in the first place. :)

Done, Clodfobble! And keep up your good work, to think if everyone were as proactive as you.

Awesome!
 

But of course, you submitted them anyway. And eventually, they started paying them. And why? because of people like you.

Done, Clod. :thumbsup:

Clod you're amazing. You really are. Wtg girl.

It wouldn't accept my address. We get that now and then. We're about to be re-addressed for 911, so maybe that'll work.

Done, Clod.

I got a "thank you" email from Autism Advocacy that ended with...I'm not sure how I'm suppose to respond if I do get that message from Pelosi?
Guess I'll worry about it, if and when, it happens. :cool:

I just figured do nothing: sounds like the organization takes care of getting them to The Nance.

Man, what a smack-yourself-in-the-forehead moment I've had. You think you're so good at this, you've totally settled into the diet and you completely have a handle on it... Okay, so, both the kids are on calcium supplements since they're not getting any dairy. They make these little gummy bear vitamin things for kids these days, but Minifob refused them for some reason, so he gets a liquid that we can administer against his will rather than something he has to voluntarily chew. But Minifobette liked them, so that's what she's been taking.

The label says:

Great, right? Nope. Notice what's missing from that list? Artificial sweeteners. Sucralose is the number one ingredient. So having realized that, I took her off them, more out of curiosity than anything.

On her second day without them, she began nodding and shaking her head yes and no for the first time. The day after that (today,) she said her very first word ("bear") since losing all her words three months ago (none of which, incidentally, were "bear.") As an added confirmation, Mr. Clod and I have a running agreement that I won't tell him when I experiment with the kids' diets/supplements/etc., and he will tell me when he thinks the kids are being particularly good or bad, as an objective comparison to how I think they're being. He has mentioned three times in the last two days that she's being remarkably interactive and playful.

Even when you know it's real, it's so hard to believe it sometimes. Now I've just got to figure out what to do with a 3/4ths full economy-size jar of calcium gummy bears.