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Undertoad 06-11-2009 04:38 PM

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).

Flint 06-11-2009 04:41 PM

1 Attachment(s)
Quote:

Originally Posted by Undertoad (Post 572969)
maybe you can study your own response if you eat a bowl of dicks


DanaC 06-11-2009 04:43 PM

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

Undertoad 06-11-2009 04:43 PM

beautifully played.

Undertoad 06-11-2009 04:45 PM

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.

Aliantha 06-11-2009 05:10 PM

Quote:

Originally Posted by Clodfobble (Post 572685)
That's type 2. Type 1 is autoimmune, when the body suddenly begins attacking the pancreas. It is unexpectedly triggered in childhood, and requires immediate and lifelong insulin dependence. Type 2 is when the pancreas is just tired and worn out after years of abuse, and can often be controlled with an improved diet and exercise.

Both types are on the rise, but of course everyone can see why Type 2 is going up--diet and crappy lifestyle, as you said. No one can explain why Type 1 is surging.



Challenge it all you want, there's scientific data to refute you, which even Undertoad acknowledged was convincing. Autism is the only one that's political; the medical community generally agrees about the rest. Type 1 diabetes and life-threatening allergies can't linger undiagnosed for years because they kill you, in ways that make it very obvious what you died from.

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.

Aliantha 06-11-2009 06:05 PM

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.

Clodfobble 06-11-2009 06:10 PM

Quote:

Originally Posted by Aliantha
Well just because UT is convinced is no reason for me to be also. I can think for myself as well.

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.

Quote:

Originally Posted by Aliantha
I think it'll be another 50 years or more before we really know if what we think is going on now actually is.

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.

Quote:

Originally Posted by Aliantha
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.

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.

Aliantha 06-11-2009 06:14 PM

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.

Clodfobble 06-11-2009 06:36 PM

Quote:

Originally Posted by Aliantha
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.

Aliantha 06-11-2009 06:45 PM

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.

ZenGum 06-12-2009 12:57 AM

What? Someone is actually thinking of the children?

dar512 06-12-2009 11:38 AM

Quote:

Originally Posted by Clodfobble (Post 572685)
No one can explain why Type 1 is surging.

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

Clodfobble 06-12-2009 02:02 PM

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. :)

dar512 06-12-2009 03:42 PM

Interesting, Clod. I didn't know that.

Clodfobble 06-16-2009 06:02 PM

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:

DanaC 06-16-2009 06:08 PM

*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.

Clodfobble 06-16-2009 06:24 PM

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.

Queen of the Ryche 06-23-2009 10:54 AM

Anything new, Clod?

Flint 06-23-2009 10:57 AM

Quote:

Originally Posted by Clodfobble (Post 574780)
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.

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.

limey 06-23-2009 12:41 PM

Quote:

Originally Posted by Flint (Post 576776)
He's just trying to recruit anybody he can with his hippy rabbit-food propoganda. No thanks, mister! We eat real Americans in this house.

Fixed it for ya!

Clodfobble 06-23-2009 02:43 PM

Quote:

Originally Posted by Queen of the Ryche
Anything new, Clod?

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."

Flint 06-23-2009 02:52 PM

Quote:

Originally Posted by Clodfobble (Post 576835)
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.

Queen of the Ryche 06-23-2009 04:27 PM

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.

xoxoxoBruce 06-24-2009 03:02 AM

How expensive are the audio cds?

Clodfobble 06-24-2009 03:17 AM

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.

limey 06-24-2009 05:13 AM

Quote:

Originally Posted by Queen of the Ryche (Post 576867)
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.

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

Clodfobble 06-24-2009 07:14 AM

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.

Clodfobble 07-15-2009 04:44 PM

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.

jinx 07-15-2009 07:59 PM

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.

Clodfobble 07-15-2009 08:06 PM

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.

Griff 07-15-2009 08:11 PM

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

jinx 07-15-2009 08:21 PM

Quote:

Originally Posted by Clodfobble (Post 581826)
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.

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...

monster 07-15-2009 08:43 PM

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.

Clodfobble 07-15-2009 09:36 PM

Quote:

Originally Posted by Griff
Is a class action inappropriate because of the level of documentation needed?

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

Quote:

Originally Posted by jinx
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, 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.

Clodfobble 07-15-2009 10:06 PM

Quote:

Originally Posted by jinx
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.

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...

xoxoxoBruce 07-16-2009 12:37 AM

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

Clodfobble 07-16-2009 07:01 AM

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. :)

Pete 07-17-2009 08:42 AM

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.

Pete 07-17-2009 08:53 AM

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 "

Clodfobble 07-18-2009 02:53 PM

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:

Clodfobble 07-18-2009 02:56 PM

Quote:

Dear Dr. _______,

I have a lot of lingering frustration over things I didn’t say at our recent appointment, both because I was too tired from the earlier labwork with [Minifob], and I was in a hurry to let my mother get back to work. Let me start off by saying I completely understand your skepticism of the biomedical treatments for autism, and skepticism is an excellent trait in a doctor. You do not want to be treating your patients on hunches and faith. But at the same time, it’s hard not to take it personally when you effectively insinuate that the things I am telling you I see in my son must be either coincidence or imaginary. I assure you, I am giving every treatment offered by Thoughtful House the same careful consideration I would give to any medical treatment, weighing the risks and evidence available. I am being rigorously objective in my daily documentation of both [Minifob's] and [Minifobette’s] symptoms, and whether each one improves or not with any given treatment. What’s more, I am taking videos, so that others can judge the difference for themselves:

Before the GFCF diet: http://www.youtube.com/watch?v=10XofXCoctw
After the GFCF diet: http://www.youtube.com/watch?v=BLnWlLO8p6A

I know that when you repeatedly say, “We really like M*****,” (his occupational therapist at ***** Rehab,) what you are really telling me is, “I approve of occupational therapy as a treatment, and it has studies to back up its effectiveness,” and the implication is that you don’t approve of the biomedical protocol (despite the fact that it, too, has many recent studies to back up its effectiveness, and you have biomedical books on autism on your own shelf in your exam room.) I know that you are not actually endorsing M***** herself, because the truth is you don’t know M*****—if you did, you’d know that she strongly supports the biomedical treatments, she knows that they make her own sensory integration treatments far more effective, and she has been particularly blown away by the immediate and complete change [Minifob] showed when I implemented the diet as strictly as I have (he and [Minifobette] are not just gluten-free and casein-free, by the way, but also following the Feingold rules of no artificial colors/flavors/sweeteners or preservatives.) Within two weeks, M***** was asking me to write down all my resources and tips for the diet so she could give it to her other clients who were struggling with implementing it. In fact, [Minifob’s] sensory issues, which improved only very slightly with therapy from January through March, completely disappeared after going on the diet, and now we are only keeping the regular OT appointments as social interaction practice for him, and in anticipation of [Minifobette] needing the sessions for herself once [Minifob] starts PPCD in the Fall. Because again, I know occupational therapy is effective at what it does, so I know [Minifobette] will definitely need some OT despite already being on the diet. But M***** and I both also know that the therapy will be quicker and more effective, because I am treating the other aspects of her autism simultaneously.

In addition, everyone involved in [Minifob's] PPCD program was also in favor of biomedical treatments before they ever met us, including the school psychologist and all four professionals who performed his assessment. When I told [Minifob's] teacher that he is on the GFCF diet, she said, “Oh wonderful, that means he’ll be one of my good kids.” They all know this stuff works because they work with autistic children every single day, and they know who is getting better and who isn’t. [Minifob] is not just “a lot calmer,” as you have acknowledged—he leapt straight from gestures and echolalia to 3-4 word spontaneous manding, with no learning curve in between; he started making eye contact with strangers; his physical and visual stimming are way down; his tantrumming is down to the level of a normal three-year-old, and the causes of those tantrums are now logical (because I have told him “no,” for example, rather than because he can’t get his cars to line up exactly right.) In the last two months he has already met half of his IEP goals, before ever setting foot inside the classroom. The one thing that has gotten worse is that the overall quantity of his echolalia has skyrocketed, but I suspect that is because he is now eager to talk, but hasn’t learned the social contexts of conversation yet.

I know that you have particular distaste for the idea that a yeast infection is somehow the root of autism, and rightly so—there is no one root of autism for even a single autistic child, let alone all autistic children. Yeast infections are championed by dirty hippies as the cause of everything from toe pain to cancer, and they clearly are not. But that doesn’t mean there is no such thing as a fungal infection—my husband has chronic ringworm on his legs, and it is treated with anti-fungal creams, and of course vaginal yeast infections and infant thrush are very real maladies. The truth is fungal infections are just one common comorbid condition of autism, along with many other gastrointestinal problems. Not all autistic children have chronic digestion issues, but mine do, as I have mentioned many times. And as it turns out, [Minifob's] stool and urine samples didn’t show a significant yeast infection, so the doctors at Thoughtful House obviously are not recommending that we treat as if he has one. What they did show is a strong Clostridium bacterial infection (another common comorbid condition, but one that doesn’t happen to have been picked up as a battle cry by dirty hippies, so it doesn’t get the same negative association.) Perhaps your position on this information will be 1.) the test results were inaccurate or falsified (again, they came from your own preferred lab down the hall,) or 2.) the infection is real, but it has no association with his autistic symptoms. But even if that were the case, why wouldn’t I want to treat an infection in its own right? I’d like my son to stop having chronic loose stools, even if his autistic symptoms don’t improve one bit. However, at every step of the way, when we have adjusted any aspect of his food intake or digestion, his autistic symptoms have changed as well (either for better or for worse; it is often a case of trial-and-error, not steady improvement,) so I am personally quite confident that treating his intestinal infection with an antibiotic will be no different. (I know you have suggested Lactobacillus acidophilus as a first step for both [Minifob's] and [Minifobette's] digestive problems—and that is also something recommended by the doctors at Thoughtful House—but he has been taking multiple doses daily for months, yet his labwork showed zero colonization of beneficial bacteria.)

Clodfobble 07-18-2009 02:59 PM

Quote:

The party line is that “early intervention” is the key, but what does that actually mean? It’s early, I’m ready to intervene—what specifically do you suggest I do? We had to wait four months to see the pediatric neurologist, and his assessment was, “Yes, [Minifob] is autistic. Come back when he’s 4 or 5 years old, and I can put him on antipsychotics.” How is that early intervention? Similarly, the allergist we were referred to for [Minifobette] basically refused to do any testing on her at all since she was so young and hadn’t had an anaphylactic reaction to warrant it. It was only by sheer demand on my part that he gave her a skin prick test for a total of three foods before we were ushered out. He, too, suggested we come back when she is several years older. Do you think his attitude will have changed in the last six months? Meanwhile, the waiting list for ABA therapy is over a year long, and I cannot afford $40,000 a year regardless. Occupational therapy has already outlived its usefulness for [Minifob], and I am confident that [Minifobette] will only need a few months of it herself. So what other options does that leave me? So far, not a single treatment advocated by Thoughtful House has had any risk at all—and so far, we have seen extremely positive results with every step. I’m not sure what it is that you want me to “be careful” of. If you think I am being given false hope, all I can say is the results have been quite real so far, and I have the behavior logs and the videos to prove it. If you are afraid I will be scammed out of money, you should know that insurance is reimbursing me at the standard out-of-network percentage, and what’s more, their pricing is at a fair, up-front hourly rate, which equates to an actual hour of face-time with the doctor, and is quite a bit less than, say, the pediatric neurologist, who billed my insurance $500 for less than 15 minutes of time, 90% of which was me re-describing the same symptoms I had just given in great detail to his nurse. If you are afraid we will end up agreeing to something more risky like chelation drugs, I will admit that it is a possibility in the future, after careful consideration of the prerequisite lab test results, and whether Thoughtful House has continued to earn our trust with successful treatments. But a quick search of antipsychotic drugs shows there are far more known side effects and risks for those treatments, especially in children, and the neurologist was apparently ready to dole them out like candy to my son without any additional information or examination of him. So who should I be more careful of, again?

As for whether [Minifob] may or may not have a mitochondrial disorder, my question would be: do you think the tests showing extremely high levels of lactic acid (coupled with low pyruvic acid) were just wrong, or is it merely that you think the doctors at Thoughtful House won’t know how to properly treat the condition if the additional testing indicates he does have it? “Those guys,” as you referred to them, are all real medical doctors, not osteopaths or naturopaths. They came from a variety of other medical backgrounds, including surgery, gastroenterology, etc., and were all compelled into autism treatments because they have autistic children. Did you know that? Almost every single person who works at Thoughtful House in any capacity has at least one autistic child. They have each been compelled to completely redirect their careers, and focus all their efforts on studying, refining, and providing the autism treatments that they personally witnessed working miracles in their own children, just as I have been compelled to tell everyone I meet about the dramatic changes I have seen in [Minifob]. These changes are neither coincidental nor imaginary, and multiple professionals outside of Thoughtful House have agreed with me on that. It is a travesty that legitimate medical work has gotten tied up by the inherent politics of the situation. In fact, I have volunteered to participate in several of their currently-running medical studies, even though it means [Minifob] may sometimes receive a placebo at first and delay his treatment by a few weeks, because I know published studies are the only way to prove what everyone in that office, everyone in the PPCD program, and all the occupational therapists at ***** Rehab already know to be true. In twenty years, the biomedical protocol (the genuine set of proven treatments—gastrointestinal, immunological, and toxicological—not the silly anti-yeast, cranial-sacral, balance-your-chi nonsense that people mistakenly associate it with) is going to be the standard accepted treatment for autism. When [Minifob] was first diagnosed you were adamant that I seek out “good sources of information” (and of course I knew even then what the ‘bad sources’ were that you wanted me to avoid,) such as Autism Speaks. Are you aware that even Autism Speaks now advocates the use of the GFCF diet? As the evidence accumulates, things necessarily change. Medical knowledge is a constantly evolving thing: we laugh at what we thought was true thirty years ago, and it is utterly foolish to think we won’t still be laughing at many of today’s assumptions in another thirty years.

Please understand I’m not angry—you are a good doctor, and I have no intention of leaving your practice in search of someone who already agrees with me, because that would defeat the purpose. Instead I plan to demonstrate to you that I’m right about this, however long that may take. I look forward to sharing my children’s continued improvement with you.


Sincerely, [Clodfobble]
[/quote]

kerosene 07-18-2009 04:40 PM

You amaze me, Clod.

Flint 07-18-2009 07:58 PM

Jesus Christ! Wow.

jinx 07-18-2009 08:00 PM

Girl!! You go...

xoxoxoBruce 07-18-2009 08:43 PM

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

monster 07-18-2009 10:00 PM

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

Clodfobble 07-18-2009 10:12 PM

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.

Clodfobble 07-18-2009 10:46 PM

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

Quote:

Connecticut is now the thirteenth state in the country to enact comprehensive autism insurance reform.

The Connecticut law requires insurers to provide coverage for behavioral treatments, including Applied Behavior Analysis (ABA) therapy, of up to $50,000 for a child who is less than nine years of age, $35,000 for a child who is at least nine years of age and less than thirteen years of age, and $25,000 for a child who is at least thirteen years of age and less than fifteen years of age. ABA therapy is recognized as an effective, evidence-based treatment for children with autism.
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...

Clodfobble 07-19-2009 08:42 AM

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. :)

Shawnee123 07-19-2009 09:07 AM

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

Flint 07-19-2009 09:55 AM

Awesome!
 
Quote:

Originally Posted by Clodfobble (Post 582391)
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...

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

xoxoxoBruce 07-19-2009 09:08 PM

Done, Clod. :thumbsup:

DanaC 07-20-2009 04:30 AM

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

Griff 07-20-2009 05:20 AM

Quote:

Originally Posted by xoxoxoBruce (Post 582532)
Done, Clod. :thumbsup:

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.

kerosene 07-20-2009 10:55 AM

Done, Clod.

xoxoxoBruce 07-20-2009 11:14 AM

I got a "thank you" email from Autism Advocacy that ended with...
Quote:

P.S. You may receive a response from Speaker Pelosi's office about sending your message to a different email address. Please know that we are keeping on track and continuing to send these emails to her! Thanks!
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:

Shawnee123 07-20-2009 11:44 AM

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

Clodfobble 07-20-2009 02:50 PM

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:

Quote:

This product contains no artificial colors, flavors, preservatives, wheat, gluten, milk, eggs, peanuts, tree nuts or soy.
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.


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