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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.


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