Recovered? Nearly recovered? What does it mean?

Discuss autism diets and biomedical treatments of autism.

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srinath
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Joined: Tue Dec 20, 2005 12:33 pm

The problem with that

Postby srinath » Sat Dec 24, 2005 7:46 pm

BTDT wrote:Wow srinath that is some conspiracy theory you got going on there! On the other hand, maybe Winnie is a just a Mom who has been around long enough to see treatments come and go, and she just happens to be smart enough to ask the right questions. She is doing what all of you ought to be doing. And you should be asking these kind of questions of any professional (alternative an mainstream) that proposes treatment or therapy for your child, this goes for schools too.


OK the problem with that assumption is ... if she's talking about here say on chelation being bad that is the same as us talking about chelation working for our kids ... if she has chelated her kids and seen nothing, she would have posted details and why and what ... thereby making her position un ambigous. BTW I now have another theory to drop into the mix. She is a service provider - ABA, or OT or SI or similar, there by chelation directly takes $$$ out of her pocket ... There is always a motive ... I need to see therapists get put in their place, I need to see the kids need less and less and less of it so that their Extortion rates will drop and I can get mine in as soon as I can ... 1 year wait list is insane ... and $85 an hour not covered by insurance is insane too ... ergo ... I need to get on top of chelation, have it work in my sons case and I need to find any and all snippets of information ... just like the OT, ST, SI and ABA therapists need to keep us from getting all the info ... BTW my autism society is in their pocket ... they show up and preach ... ironically its also in a church ... Just fits perfect ...
Cool.
Srinath.

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Sat Dec 24, 2005 7:52 pm

Srinath,

If you get a heavy metals hair analysis done and it shows elevated amounts of lead then your son can possibly qualify for a chelating agent like DMSA, ETDA, or DMPS. We use TD-DMSA with Sasha and on day 3 he started trying to potty train himself. He is peeing in a cup and a little urinal that we bought for him but it's a start. We were amazed at the results we saw with chelation and I'm excited to start the next round.

I hope all works out well for you. Great Plains is BCBS PPO if you have that insurance. They send all of their metals test to doctor's data lab and basically act as a middle man. That's only for metals test though. If you do not have BCBS PPO then going directly through Doctors Data Lab is cheaper. I think its about $60 for a metals hair analysis. www.doctorsdata.com

-Crystal

Guest

Postby Guest » Sat Dec 24, 2005 7:53 pm

Hey srinrath, what gives with aba providers being so anti biomed?? My own aba supervisor tried to convince me last week that my son's "floppiness" was behavioural. She also attributed his recent gains, made on MB12 as being ABA induced. I mean, talk about taking credit !

by the way the clinical supervisor of my ABA program, who i must pay every six months for a consultation, costs 220 bucks an hour. the supervisors cost 85. I guess that is about the same everywhere??

If my son was walking with a limp cause his mommy spends all her money on aba therapy, and cant afford splints, would that be "behavioural" too??

hmmm
respect

Guest

Postby Guest » Sat Dec 24, 2005 8:10 pm

Crystal:
Please don't get me wrong. I really respect all that you are doing with your son, you've obviously done a lot of research and are a very dedicated mom. It's great that you got the ball rolling so early for Sasha. I wish I had known as much as you do when Alex was Sasha's age.

I've been at this since 2003 and have read everything that has come into my hands on autism including quite a lot on biomed (I'm actually reading the DAN! manual right now). So please know that I'm NOT against biomed and certainly not against recovery.
Oh, and in case anyone asks, I'm not an undercover for Big Pharma either.

I think that some of your posts though are confusing to people who read them carefully. And potentially even more confusing to new parents who are weighing their options right now.

Look I haven't seen any studies from 10 years ago b/c they aren't available to the public.

I just got an email from one of the parents
.....
She also stated that it was an informal study that was meant to get the ball rolling and that the DAN! group did not "form" on account of the informal study


OK, are there or aren't there studies ? You seemed pretty affirmative earlier that they exist. Unusual that a 10-year old recovery study would not be disclosed to the public should such a study exist. Dr. Rimland's patient (BTW, I had no idea he was actually seeing patients) is certainly an interesting case, but maybe we should redefine the notion of "studies"- usually a case report, or even 10 case reports is not a "study".

Look, it's OK to say that we don't yet know for sure, but that we are doing our best to find out and help our kids. That's my take on it, anyway and any DAN! doc worth his salt would be the first to say that there is still a lot to be learned. There is really no point in exaggerating , claiming studies nobody has heard of, and using isolated examples as standard of care, while blowing off anyone who dares to comment. Autism is an emotional issue, people can get blinded easily, controversies abund, there is always something new popping up and meanwhile our kids need our undivided attention. No wonder there is some heat. Let's not sacrifice accuracy , it will just weaken what we believe in.

Alex's mom

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Sat Dec 24, 2005 8:24 pm

I haven't seen anything on paper so unless there are parents out there conspiring together to make up a story then I don't know. If I had access to anything that could help you all I would certainly share it with you. I don't know if Dr. Rimland saw patients on a regular basis or not back then, if he does things out of his own pocket for funding, or if we'll ever really know what happened years ago that these parents claim happened and now have kids that are doing great b/c my son isn't one of those kids.

Other mothers have pointed me in the direction to speak with these people. A friend of a friend of a friend who claims their child is recovered and it all started years ago when their pediatrician dumped b/c they refused to vaccinate their child's siblings due to the things they had found. One of the moms lives in California and says that she had a doctor that would sign off on labs for her son and mail the results to other doctor who were doing independate studies. Not just the famous Rimland.

I don't think that this thread was intended to get this deep into controversy. I can not provide anything but another parent's word so take it o leave it. Probably leave it the way that you have responded but that's ok.

I do not believe that DAN! works for all kids. I have never claimed that and never will. My best friend is treating her son with the NAET treatment which Winnie bashes and calls quacky and says that no one should listen to their garbage. Her son was on DAN! for a long time and saw no improvements at all. Now he's doing NAET and accu pressure and accu puncture and he is doing better than he ever has. All kids are different and that's the bottom line. This thread has become a bit silly; even on my part responding to the attacks.

Merry Christmas all.... we're going to have family time now.

Crystal

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Sat Dec 24, 2005 8:27 pm

One more thing... Just like you say people have different opinions of how they define "recovered and cured".

Maybe we have different opinions of what we believe a study is. You say a case report but in my opinion some type of studying was done to gather the case report and they are the same thing to me.

Stacy uses the word study when she talks about her son but maybe if you were to see the "study" you would possibly see it as a report.... i don't know. I just wanted to post that b/c you were questioning if there is a study or not.

Off topic but here is a website that may help anyone looking into DAN! from a mothers view. Dana has gathered a ton of information and has a great website. www.danasview.net

-Crystal

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

ABA

Postby srinath » Sat Dec 24, 2005 8:34 pm

Sasha's mom - I do have BCBS PPO, but instead of dealing wiht them I prefered to send it with my credit card ... I will send the bill to them after its done and I check with them. BTW group policy with BCBS is faaaar better than individual/family, whihc is what I have, after some severe arm twisting I am going to a group BCBS in a bit though ... Hope ... cant wait ...

Respect - the aba therapists and consultants like WTF I have heard of software consultants, or management consultants ... its like saying she's a consulting school teacher ... in my town are seriously expensive ... The state funded Teacch is OK and available at all levels of school and pre school and EI ... but ABA is 20K a year, 1 year waiting at the preschool level and its all payable at time of admission and guess what, they are in the busiest and priciest part of town ... luckily the shills were so effective at their pitch that they have had 300% more enrolement and waitlisted all the extras ... Now with being anti Bio med, heck my autism society is anti bio med. I now realise that one lady that totally blew me away at the first meeting wrote her number etc and under that wrote STAR ... and never said a word about it. Insane. The general idea is ... parents of older kids want us to cope with the problem due to guilt, the fact that they have mostly missed the boat and the fact that they can pat themselves on the back for having gotten thus far and see to it that the govt funded support system however pathetic stays in place ... sorta like Diva/Winnie, and the younger kids parents want it out so their kids can be recovered ... Not hard to imagine ...
Cool.
Srinath.

Guest

Postby Guest » Sat Dec 24, 2005 8:39 pm

Maybe we have different opinions of what we believe a study is. You say a case report but in my opinion some type of studying was done to gather the case report and they are the same thing to me.


Oh my... :lol: ...a new thread maybe? What does "study" mean to you? thanks for the chuckle...

Merry Christmas to you too,

Winnie

sashasmom
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Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Sat Dec 24, 2005 9:11 pm

I swear this is getting so silly. Let's just drop it and let it be. We can all agree that we all have different opinions and views. I don't want to disrespect or make hard feelings with any of you anymore. It's really not my intention or my personality. This subject is very touchy to many people and it can bring the "beast" out in all of us, including me. I get myself all worked over nothing b/c I want so badly to be able to provide something to back up the info I'm giving but I can't. I really don't need to be stressing over a silly thread but it's actually hard not to. I excluded myself from my familys Christmas Eve party due to heart related issues and yet I find myself more stressed out on a message board than I do at the family gathering. (I'm not anti-family.... it'sjust that sasha doesn't do very well with my aunts and uncles... they're all really loud and as you can imagine he has a hard time... that stresses me out).

I've got to go get "santa's" toys ready for the boys. My husband is hung up on a PS2 snowboarding game so I'm sure I'll be alone in this and it will take a while. I hope all of you have a Merry Christmas and your kids are excited in the morning when Santa drops by. I normally don't like the holidays but this year we have a tree and foyer is loaded with presents. It's been a good year.

-Crystal

Guest

Postby Guest » Sat Dec 24, 2005 9:55 pm

This subject is very touchy to many people and it can bring the "beast" out in all of us, including me.


Agree, agree ... which is what I meant by it being hard to have a discussion or "debate" while keeping all our parental emotions in check...I don't tend to get as bothered over discussion threads anymore -- probably because I have just been at it longer...

I've got to go get "santa's" toys ready for the boys. My husband is hung up on a PS2 snowboarding game so I'm sure I'll be alone in this and it will take a while.


Hey, he's helping! He is testing the game! Don't stress, go enjoy Christmas...

Winnie
(who learned long ago that "some assembly required" does not lead to Peace On Earth)

BTDT
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Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Sun Dec 25, 2005 8:06 am

:?:
Last edited by BTDT on Fri May 02, 2014 9:06 am, edited 1 time in total.

BTDT
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Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Sun Dec 25, 2005 8:08 am

Crystal,

Thanks for the info about the Taurine. I started my son out on a low dose, and he seemed okay with that, although no positive effects. It was when I tried increasing it that he got so crazy.

Guest

Postby Guest » Sun Dec 25, 2005 11:14 am

I have been skimming this thread over the last few days and felt a little intimidated to post. Let me just say that I hope that we are able to debate... even argue these issues forcefully... without anyone taking personal offense. And even if someone does take offense, that does not mean the debate should stop, we are all searching for the truth, and that may be unpleasant. We all probably defended traditional medicine at one point until it was pointed out to us otherwise by someone who was standing up against the "establishment" and willing to take the unpopular position for the sake of truth. Every single intervention we do with our children should be able to hold up to the same tough questioning and scrutiny to which we now hold traditional medicine, or we are once again just like sheep.

The exchanges between "Winnie" and Rick were very interesting. I have no doubt Rick can handle himself just fine in a heated debate with anyone about the Neubrander approach, and "Winnie" has not asked any questions (unless I missed something) that we all should not demand of professionals claiming to have something that can help our babies get better.

Winnie, I hope you stay on this board. You have articulated the "opposite" side from what we usually hear here, and you have kept a level head. And thank you to those of you who took part in this debate (Sasha's Mom) for making it so interesting.

Guest

Postby Guest » Sun Dec 25, 2005 11:24 am

I think we should read Kenny V’s message of recovery in his post
"The best present ever."

Thanks Kenny for sharing
Guest

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Sun Dec 25, 2005 12:34 pm

BTDT wrote:I thought I'd just try to set the record straight about Bernard Rimland. He's not an MD, so he wouldn't be able to order any lab testing on anyone.


I made my comment not so clear. I said "he ordered test" but later corrected myself so that it wouldn't be misinturpeted saying that he basically requested the orders and had the child's doctors "order" the actual test and sign off on them. I'm just repeating what has been told to me.

-Crystal

M.B.

What does recovered mean?

Postby M.B. » Sun Dec 25, 2005 5:42 pm

Hi. To answer the question in the original post, I have one child who is not recovered and one child who did recover. The recovered child had mild PDD-NOS to begin with, and no longer has a diagnosis, any special education services, an IEP, etc. Are there autistic-like symptoms? Yes, I see them, but probably few other people do. We still do the GFCF diet and supplements, but we don't do anything else.

We didn't chelate this (recovered) child, but we did our other child, who has gone from moderate to severe autism to mild PDD. Our child who has not recovered was always the most severe, and we did more interventions with him than the child who was milder. We did GFCF, supplements, ABA (which helped the most), auditory training (not much help), sensory integration (some help), MB12 (not sure yet) and finally chelation (still not sure yet). One thing I have learned is that every child is different, and what works for one may not work for another. Best wishes to all parents of children with autism and hope that "recovery" becomes more common that it is now.

Leslie
Posts: 151
Joined: Thu Jun 09, 2005 11:37 am

Postby Leslie » Tue Dec 27, 2005 3:38 am

BTDT,

I just wanted to also add to Crystal's advice on the Taurine. My son is currently on 2000 mcg (and he is a little guy, only 30 lbs so I do not think weight is a huge factor). We started at 250 mcg and slowly upped it over a couple of months time. We also saw a little hyperness when we got up around 1000 mcg but found that if we changed the timing we avoided any negative side effects. JW gets 1000 mcg in the morning before school, this seems to help him focus better, 500 mcg with afternoon snack, and 500 mcg with his "after dinner vitamins". When we tried to give it all in one or two doses he gets hyper, so we split it up into three. And suprisingly, if we miss the evening dose it is harder to get him into bed than usual, so Taurine is at the top of our must have list. Hope this helps as well.

Leslie

Oh and one more thing, we did not see any positives until we got up around 1500 mcg, then focus, behavior, and sleeping patterns improved immensly.
Mother to 4 year old JW, my little angel!

Guest

Postby Guest » Wed Dec 28, 2005 1:56 am

Vicky wrote:Lulu, my oldests story wouldn't be much use to that board because we quite literally didn't do anything, unless you count fish oils, infact being as he has a younger brother who is very profound he probably gets far less input than even a regular child.
His story is interesting though, language was after 4yrs old, he had all the lining things up, insistance on sameness, routines, obsessions etc, etc and he has just moved onwards and upwards through the spectrum, he now has a firm group of friends where until 9yrs old he had never had any, but I would insist he isn't cured of his dx there are things that seperate him from his peer group, things like tying shoe laces, telling the time etc, but that is all small fry to the problems he did have and his brother still has.
My youngest is now 8yrs and I think with age the gap widens, you just know there will be no spontaneous moving up the spectrum.
What I would say though about therapy of any sort, for me personally I only really sit up and take huge notice of improvements after 4yrs old because my sons story may be unusual but it is proof kids may have moved up anyway at this age, and maybe his story is not that unusual, we really still know so little about autism in general, what might be of interest though is my oldest boy is far less food sensitive than his brother and has a normal working digestive system, his brother has the guts from hell, which suggests for us at least the gut, candida, dysbosis etc all seem to play a part in how "autistic" my boys are.
Vicky :? :? :?


thanks, it is interesting to hear your story because my oldest is basically the same athough did have little bit of intervention early on at 4 and 5. but sounds so similiar to your oldest and interesting our youngest is more autistic too with gut also and lots of intervention has had pretty minimal effect. but over time now sleep eat speech sensory etc has improved but not to the point of no longer needing help. what we are looking to research is everything including family history and sibilings because maybe there are alot of kids like our oldests out there. food for thought...lulu

BTDT
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Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Wed Dec 28, 2005 1:46 pm

:?:


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