Patchwork protocol
Not Mercury is a new blog created by a parent who once believed that vaccines caused his child's autism. Autism Diva suggests that you go to the Not Mecury blog to find out why this parent no longer sees mercury as a contributor to, or cause of, autism.
This is an excerpt from the latest entry titled, Quit While You're a Head:
The way of thinking of some parents of autistic children as described by Not Mercury is quite evident on the "autism biomedical treatment" Internet support groups, where recipes and protocols are exchanged. The advice given by these parents, some of whom say they are quoting their child's DAN! doctor, ends up being contradictory of advice from other parents. Some of the advice is quite frightening. Other advice is patently bizarre. Some responding to the advice express fear of implementing it. Sometimes they implement it in spite of their fears. Worst of all, there are individuals in these groups who end up being seen as real experts whose opinion is equal or superior to that of any doctor who has actually seen the child:
The following is from a mom:
and from another mom:
That just about sums up what Not Mercury wrote about his experience in trying "biomedical" treatnents on his autistic child. Apart from the dangers of taking medical advice for children from strangers, it's very confusing. For example: one long running favorite, Epsom salt baths, was recently put on the "dangerous" list by parents who said they discovered that there was mercury in some of the brands of Epsom salts.
Not all parents of autistic kids are doing "biomedical" interventions. It's also possible to go berserk on Applied Behavioral Analysis as seen here. It's likely that the majority of parents don't have enough money to go really deep into any biomedical interventions or ABA, and regardless of money some parents are willing to take a less pressured and more circumspect approach, their children can achieve great things and there are no known ill side-effects to use of "acceptance therapy" along with standard of care therapies like speech, physical and occupational therapies.
Autism Diva
a stitch in time
This is an excerpt from the latest entry titled, Quit While You're a Head:
With each new intervention that came along, we expanded our definition of acceptable risks. "Maybe this is something we wouldn't normally give to a child of this age but if it helps the benefit will offset the risk. Right? There are a lot of other parents doing these things and it isn't really blind experimentation on children, not really. Not as long as other parents have tried it and it didn't hurt their child."
Each new intervention felt like the treadmill was turned up another notch. Support and encouragement from other parents kept us going, much like the encouragement from unknown bar patrons in the bad joke. "It helped? Increase the dose" or "If that worked you really have to try this thing."
Where does it end? Where do you stop? Just keep going until your child is typical, is injured, or worse? It becomes almost like a gambling addiction. "I know this one will be the winner! Just one more roll baby and then we can scoop up our winnings and go home winners!" But there's always the chance with any experiment the outcome will be worse than expected.
I'm not one to lecture or offer advice on treating or not treating autism. I realize that most parents are going to listen to a message of hope over voices of experience or reason, at least it was that way for me.
The way of thinking of some parents of autistic children as described by Not Mercury is quite evident on the "autism biomedical treatment" Internet support groups, where recipes and protocols are exchanged. The advice given by these parents, some of whom say they are quoting their child's DAN! doctor, ends up being contradictory of advice from other parents. Some of the advice is quite frightening. Other advice is patently bizarre. Some responding to the advice express fear of implementing it. Sometimes they implement it in spite of their fears. Worst of all, there are individuals in these groups who end up being seen as real experts whose opinion is equal or superior to that of any doctor who has actually seen the child:Lisa My son turned beet red all over his body, red face and especially red eyes. That was the last time I was going to experiment on my kid, then I did DMSA LA LOL. What we won't do...
My kid is sick should I chelate him anyway?
Bad DMSA chelation protocol made this 18 year old boy vomit, he's still vomiting every day. Want to try a new protocol. Will the new one make him vomit, too?
"I haven't seen any improvement since starting TD-DMPS
10 months ago..."
Infrared sauna's are a really bad idea for mercury poisoned people.
My son also developed pretty high fevers using virastop, together with OLE, lauricidin, and sambucol. In doing more reading from other parents, getting through a viral protocol with any of the natural antivirals can be very ugly. I wasn't prepared for how bad it would be, plus I had tried to chelate which in our case made things worse. I think the ugliness is a sign of how effective the natural
antivirals can be.
The following is from a mom:
He has gone from mild/moderate ASD to classical autism since being on Valtrex and I am going crazy! All his "soft signs" are still there and he has not improved yet. Since it has only been 19 days I'm hoping he will come around soon and we will see something positive.
Has anyone had their child get horribly worse on Valtrex and not get any better? I haven't heard this before, but he is slipping away and I don't want that to happen.
and from another mom:
Just curious why you would be switching from TDDMPS to oral DMPS. I just had a discussion about this with my DAN. We have been using TDDMPS on our 8 yr old son for 14 months and just stopped pulling mercury but feel there is still more mercury in him. We discussed all of our options and decided to try suppository DMPS first since it absorbs well and bypasses the gut. We will do a challenge with that and collect 6 hr urine and a stool 24 to 48 hrs after. If no mercury we go to
plan 2...we will do a shot of DMPS into the buttocks. Our DAN is seeing equal results with the shot as with the IV's in adult patients. Again we will collect urine and stool to see what we pull. Last, we will do an IV of DMPS and check urine and stool. We are not going to try oral as it does not absorb well and can injure the gut. This is just info for anyone. I will post our results.
At this point who knows what is right/wrong; works/doesn't work; true/false.........we
are just going to keep on trying!
That just about sums up what Not Mercury wrote about his experience in trying "biomedical" treatnents on his autistic child. Apart from the dangers of taking medical advice for children from strangers, it's very confusing. For example: one long running favorite, Epsom salt baths, was recently put on the "dangerous" list by parents who said they discovered that there was mercury in some of the brands of Epsom salts.
Not all parents of autistic kids are doing "biomedical" interventions. It's also possible to go berserk on Applied Behavioral Analysis as seen here. It's likely that the majority of parents don't have enough money to go really deep into any biomedical interventions or ABA, and regardless of money some parents are willing to take a less pressured and more circumspect approach, their children can achieve great things and there are no known ill side-effects to use of "acceptance therapy" along with standard of care therapies like speech, physical and occupational therapies.
Autism Diva
a stitch in time
posted by Autism Diva at 10:26 PM
25 Comments:
In defence of epsom salt baths, my kids (one NT, one autistic) and I find them extremely pleasant and relaxing, especially if you put a few drops of lavender oil in the epsom salt jar and use that in the bath. Mmmm, great smell, nice warm bath, very relaxing. Epsom salts are used in various kinds of sports medicine, just for the record. Mind you, I don't think it does anything for autism one way or the other, but a nice, warm, scented bath has got to feel good, and I think that feeling good like that can improve some kinds of negative behavior, whether or not you're austistic. ;-)
That being said, the rest of this entry was scary. I knew about this stuff already, that some parents are willing to torture their kids with unknown drugs, herbs, whatever, but it always upsets me when I think about it.
I'd better go have an epsom salt bath to relax... ;-)
I loved Not Mercury's simile/metaphor of the treadmill.
Did you do the graphic? I've just printed it out for a colleague, and wanted to attribute it correctly :)
Diva, your flow chart / mind map / treatment pathway diagram is way cool. It's probably a lot more intricate though, with all the backdoor deals and treatment switchery that goes on. Ugly stuff.
Hi bonni,
Autism Diva is not afraid of Epsom salt baths, there probably is mercury in some (or all) Epsom salts, but mercury is everywhere. It's kind of sad to see people give up Epsom salts because someone on the web freaks them out about it.
Epsom salt baths are probably the only sort of alt-med thing jypsy ever recommended from experience with her autistic son (from her website, "ooops, wrong planet.")
----
M,
Yes, Autism Diva did the graphic. She even made the patchwork in the background, not specially for the blog entry, she is working on it for anyway.
---
D o C,
Yeah, the treadmill thing is right on.
BC,
Yeah, the map doesn't even have all the treatments on there. You can't see the panic of parents finding out that one treatment doesn't work and trying to figure out where they can go for the next one.
Or sticking perseveratively with one that doesn't do anything good and/or harms the child.
Thanks for the plug Ms. Diva and thanks for the wonderful patchwork. Maybe I should have called my post "Quilt While You're Ahead"
I hope you've insured the quilt in case the whole thing goes up in flames one day. I know it hasn't been treated with fire retardant chemicals and some of the swatches quite volatile.
Hi Not Mercury,
One could only hope that this patchwork protocol would go up in flames and leave something sensible behind that would be available to all parents of autistic kids.
There may be something "biomedical" that is helpful to most or some autistics, Dr. Bauman has a formula that she recommends to about 1% of her autism spectrum patients, those who have diagnosed mitochondrial disorders, that formula contains ALA (alpha lipoic acid) and other over-the-counter type supplements.
Going to see Dr. Bauman and having your child that is showing signs of having a mitochondrial disorder, having that ruled out or ruled in, and then having a doctor recommend this formula is quite a bit different than giving all autistic kids all of these supplements and drugs with only time, location and money being the determinant for what treatment the kid gets.
But you knew that...
Those sites you linked to - especially the one about "dead-time" - make me ill. Even when I was an ABA therapist, I didn't believe that kids should be "engaged" every second of every day. Of course, I was basing that on my own whacko brain function...
If many are unable to pay for extensive servivces (such as intensive ABA) it behooves us parents to demand these from school districts and Those Powers That Be.
The scariest part was the parent who had been chelating for 14 months and there was no more mercury coming out. But she and her Dan doctor were convinced that there must be more mercury in him. Why? because he is still autistic? So they are upping the treatment! Are there no medical licence boards in the USA?
I agree with Mike. When does it end?
The following analogy is crude and not meant to equate a person with an object: Can you imagine if an auto mechanic told you to keep changing the oil if the engine kept knocking? Like over and over again? Who's going to do that?
Kristina, I agree that the government can do more and I worry about the backlash of people who aren't related to an autistic person. Some of these people (and I've read some bits of the really wacky ones) don't want to pay for any social services for special needs, period. This attitude ellicits a half-peace-sign hand gesture from me but I also wonder about the role of family and whether or not we should be relying more on our relatives.
I was always amazed in graduate school when I saw a generation of children (predominately Chinese and Korean) being raised by their grandparents while their parents went off to grad school and work. The children benefitted from having a deep relationship with the older generation of their own family and it seemed to me (still does) that western society is missing out on this opportunity.
I wonder if autistics would be more accepted and have an easier life if our society was more clan-like and stuck together. The presence of aunts, uncles, and grandparents could provide an autistic a real sense of belonging and stability. I can't see how that would be anything but a good thing (unless they were bad people or something).
Maybe that's trite, but the novacane's wearing off and my tooth is hurting so I'm going to cut it off here.
-ciao
Ooh, great! Documented, self-admitted instances of child abuse. Oh, wait... their children are autistic? Never mind then.
Wait - Did Cubby just depart in order to self-extract his own tooth or was that my dyslexia at work ; ]
Hi BC,
Autism Diva agrees that there's gotta be a better way than hiring therapists and charging the community/governement whatever for teaching autistic pre-schoolers.
Autism Diva believes what Eric Courchesne said at the MIND institute, the thing he said that is probably the reason why the recording of him saying it is not available on the web... he said, "Lovaas has been oversold." or maybe he said, "overhyped".
Yes, sure, they have some data, but Lovaas' biggest brag is that 40% of his kids became indistinguishable. Looking closer are all autistics itls likely 40% of all autistics can become very functional, to the point of passing for normal in some situations.
Autistics have been growing up and doing well (some, maybe most of them) for millenia, depending on how functional their support system is and how hateful their community is toward them.
The pressure on "Early intensive intervention" is scary to Autism Diva. Autistic children are delicate and need time to decompress and to absorb what is going on around them, to process the stimuli. But Early intensive interventions don't seem to acknowledge that. They want everything to be able to be recorded on some graph paper clipped to a clipboard with Johnny's name and the date on it.
You can't observe the kind of learning that goes on in a kid's head when he's staring at the wall integrating what he heard and saw earlier. Grandparents can supervise this sort of private time though and keep Johnny or Ming Li or Pedro safe while he's decompressing as well as exposing the child to new lessons out in the world and at home.
There's a false impression of power/efficacy that comes from data collection in ABA that is also very frightening to Autism Diva. Shades of "big brother" "brave new world" or something... It's objectifying to the child and as has been pointed out elsewhere, makes the child a "subject". No offense intended to those of you who are using ABA.
Autism Diva's friends know that if any person comes near her or her offspring with a clipboard or m&m's that that person might get hurt. It's an effective aversive stimuli to the people with the clipboards, they don't try it a second time.
We have scads of post doc students here from China and the grandparent phenomenon is common here, too.
Autism Diva hopes your tooth/teeth feel(s) better soon.
hollywoodjaded said...
Wait - Did Cubby just depart in order to self-extract his own tooth or was that my dyslexia at work ; ]
Wait - You only have dyslexia at work? Funny because I have CFS, only at work.
What he said was:
the novacane's wearing off and my tooth is hurting so I'm going to cut it off here.
Indicating the point where he'll be separating it from the root, with a Dremel tool, I would guess. That's why it's important to get started before the novocaine wears off. I thought it was obvious
Hi Diva,
I liked your chart; it manages to be beautiful and terrifying at the same same.
Looks pretty accurate too.
Or rather at the "same time"
The presence of aunts, uncles, and grandparents could provide an autistic a real sense of belonging and stability
Its potentially a good thing but sometmes Grandparents can be pretty counter-productive. Out of my kids 2 sets, 1 set can't help us enough and the other set haven't seen us for close to a year. They don't understand the need for routine and why they can't just drop round whenever they feel like it so we told them to do it our way or not bother - they've decided to not bother. C'est la vie.
Autism Diva's kids wouldn't have had those kinds of grandparents around either, when her kids were little. But it sure seems ideal to have a more old fashioned extended family.
Interverbal, "beautiful and (yet somehow) terrifying" that has been something that Autism Diva has striven for, personally. Not that she ever really ever got there... It helps to be tall, helps more to wear high-heels, but Autism Diva gave up high-heels for Birkenstocks, ... though one's Danskos give one a considerable extra height advantage. Frightening if not terrifying. Dressing in lots of red helps, too.
Then there's the tiara.
Oh, off topic.
Mainline story about "curing autism" here .
Mike wrote:
The scariest part was the parent who had been chelating for 14 months and there was no more mercury coming out. But she and her Dan doctor were convinced that there must be more mercury in him. Why? because he is still autistic? So they are upping the treatment! Are there no medical licence boards in the USA?
A common and probably related weirdness happens with some of the neuroleptic-type drugs we're given.
"It's not working. We'll give you more!"
"It has bad side effects. We'll give you even more!"
Etc.
Or else:
"It's not working. So we'll try one almost like it!"
"And that's not working. So we'll try another one almost like those!"
"And none of them work, so we'll start combining them!"
Etc.
"1 set can't help us enough"
Ah - quick explanation of Britishism - 'can't help us enough' means they're great and do everything they can.
One nation seperated by a common language and all that ;o)
Autism Diva is better at creating emotional impact in her graphics than I am (says my stomach), but I can learn ('follow your stomach'?). Have swiped this "original Diva" for display in HA2. The difference between this and how many non-autistic people treat autistic works (they're made by 'non-humans' so us 'real humans' can take what we please) is that I have the Diva's gracious permission.
Hi Ralph!
Thank you for the kind words. Autism Diva is absolutely impressed with the emotional impact generated by your art and she is happy that you want to display her work on your blog.
:-)
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