Recovered? Nearly recovered? What does it mean?

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

Guest

Postby Guest » Sat Dec 24, 2005 2:52 pm

ok I have a question...you (winnie) say that you have noticed many parents who discontinue educational therapy...where is it that you have noticed these things, who were these parents you speak of? These are not meant to be nasty questions I really want to know.


Your question may risk provoking another series of emotional posts, but I'll use two examples, only because these individuals have already posted on this thread (there is no judgement involved here, only responding to the question).

As far as delaying or withholding educational methods, Srinath posted this earlier on another thread:

BTW I am in line for the ABA school, only I will have done 1 year of chelation on him by that time. Just getting to all aspects but the order has been dictated by circumstances. I am in a position to exactly point out what is the result of chelation and what is therapy. Since we are waiting for everything at this point where it comes to therapy ...
Cool.
Srinath.


From Crystal's news coverage posted on this site (DAN article):

One year ago, Kevin and Crystal Worley were at the point where speech and occupational therapy were resulting in only minimal behavioral improvements in their autistic son, Sasha.
and
A speech evaluation at the same time put Sasha on a zero- to one-month-old language level. At that point he qualified for government-funded Early Intervention services. After they saw no virtual progress with speech therapy, they sought out a diagnosis-and at 23 months, it came back as Autism.


Crystal's comments made me wonder how much intervention her son had received in the Early Intervention program, as frequently EI provides very little and often it is of a very poor quality...and I wondered if this might give parents the idea that traditional therapies are not effective (it was a news article). There is another whole realm of information regarding effectiveness and frequency of educational interventions.

I know that biomed isn't going to magically bring back all those years of learning. I know that only traditional therapies ie: speech therapy, occupational therapy, and in our case ABA as it works so well with Matthew...will be the things that help him to "catch up" to his peers.


I agree, but I am not sure that all parents would. I think this is one of the reasons that hammering out a clearer concept of "recovery" would be useful.

Winnie

Guest

Postby Guest » Sat Dec 24, 2005 2:59 pm

Until we have clearly isolated the cause, and found a way to reverse it, there will be no cure for autism - we can only treat the symptoms (either at the external, behavioral stage, or the internal, physical stage), and treatment will have to be ongoing.


Thanks, Chilliwackmom, I thought your post was a very clear explanation of the "what is autism" question from your perspective on both the biomed and educational realms...

Winnie

r's mom

Postby r's mom » Sat Dec 24, 2005 3:13 pm

BTDT,
I have been mostly lurking on this site (for moral support i guess)
I have a son (3.5yrs) who has been officially diagnosed as aspergers (A year ago he would have been diagnosed as more severe) , I have been taking my son to a naturopath and an acupunturist (w/o needles) and follow that treatment so at this stage I don't need advice on supplements etc - Winnie has never asked a question about what to do for her child wrt treatment, questions about behaviour reactions etc, you haven't introduced your child. Sorry but to me it doesn't sound as if you or Winnie are trying to recover a child. Just MHO.
Asking questions is good, however I think a lot of parents use this site for answers to their treatment questions and for a respite from the constant disbelief that there is hope for improvement/near recovery/recovery/cure.
Also to share hope, success and to get support for regressions.
As with life you get a variety of people on a site who have different perspectives - and some are more open to different points of view than others.

Guest

Postby Guest » Sat Dec 24, 2005 3:32 pm

"Asking questions is good, however I think a lot of parents use this site for answers to their treatment questions and for a respite from the constant disbelief that there is hope for improvement/near recovery/recovery/cure. "

here here!!

This forum is waaaay better than what we get in terms of "real life" support and for me its a life line.

respect

Guest

Postby Guest » Sat Dec 24, 2005 4:05 pm

One MAJOR point. A child can lose the Dx but since they missed the developmental milestones NT kids go thru, they need ABA/OT/Speech to catch up what was missed. Losing a Dx does not mean missed milestones magically enter the brain and the child can immediately fit in. Losing the Dx does mean that the child now has the cognative tools to learn and develope and with therapy can catch up to his peers.


I think this point is indeed HUGE, and very interesting. I just posted on the other side of the board the DSM-IV criteria for autism, and then proceeded to "count" my son's criteria, something I hadn't done in a long time. Well...lo and behold he doesn't fullfill diagnostic criteria any more (still comes in pretty close though :( with 4 major criteria in the top categories, where one needs 6 to be labeled as autistic). However, in spite of being a pretty functional little guy, he remains VERY impaired, very much in need of therapy, and I doubt that he will ever be au par with his same age peers. It's like much of the really "weird" stuff is gone, but boy, are his delays substantial !
I'm not spending much time pondering on recovery, but somehow, after reading the Lovaas study and the more recent Wisconsin study, it's always been my understanding that recovery meant no more "catch-up" intervention needed (like ABA, speech, OT). It makes a lot of sense , too. Defining recovery as "cognitively OK" but still needs ABA (for example) for catch up sounds pretty relaxed to me. I'm not talking about biomeds at all, I'm just saying that for most people a recovered kid is one who no longer needs an IEP. After all, how far each kid will come only time will tell.

I think any progress should be acknowledged and celebrated. I don't think you are either recovered or in deep trouble, and I sure hope that my son, while not "recovered" (by my criteria of indistinguishability)can still lead a productive and (fingers crossed) independent life.

On a more personal note, why is anyone who voices a personal opinion, question or concern without attacking anybody by it, seen as a troublemaker? As far as I'm concerned a lot of good has come out of this discussion. I never realized how many meanings the word "recovery" could have to different people. To me, it's always meant "indistinguishable", being done with therapists coming in my house, no more IEP meetings etc. I've always assumed all parents and providers see it the same way. I see that it helps to clarify these things when we compare notes.

Exactly ... which is why I think she is a pharma shill ... and I know she denied it ... but if you were a pharma shill you would deny it too wouldn't you ...


Can't argue with that logic. Some things just speak for themselves :).

Happy holidays everyone. May our kids come as close to recovery as possible, and may we all hold it together in the process.

Alex's mom

Guest

Postby Guest » Sat Dec 24, 2005 4:10 pm

LOL, this thread is hopping ! I started my post, then had to entertain Mr. Alex who wanted to play his new game, then finished posting a couple of hours later, and now I see there are tons more entries. I haven't read them, but please excuse if I've said something terribly repetitive or redundant.
Alex's mom

r's mom

Postby r's mom » Sat Dec 24, 2005 4:41 pm

chilliwackmom

You have some good points, however I dont think there is a blanket genetic total inability to detoxify in the "autistic" person. From what I have been reading I believe that in a lot of cases the system gets overwhelmed by a toxic insult/or series of toxic insults then cant recover without biomedical help. Presumably once the system is balanced and functioning again and as long as the system is not overwhelmed again it should be able to cope in those cases where the problem has been system imbalance.

Susan'sHope
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Joined: Sat Oct 15, 2005 1:46 am

Postby Susan'sHope » Sat Dec 24, 2005 4:43 pm

r's mom, I completely agree with you. I'm not offended by Winnie, but I do think her questions are the type that lead to debate. Since most parents here believe in biomed and are here for guidance, having someone continually asking questions that make biomed treatments debatable gets irritating. Actually the only type of comments that she has made that offended me were her comments regarding parents emotions regarding treatments.
This would probably be an interesting discussion among parents doing both or choosing one path over the other (assuming parents could keep their emotions in check).
I think it's fine to ask questions, but when you put opinions like that into your questions it does become a little offensive. To me having a child on the spectrum is emoitional. I have found this forum to be one of support and to gain valuable information from other parents. And parent experinces are the most valuable to me, because they are the most honest. If something is harming their child they will definelty let you know. In MHO I do not think that a lot of parents here are interested in debating. Maybe there are other forums that have parents who enjoy debating more. For me the best bet to end a debate or to not let one get started is to not respond to debate type questions, unless of course you feel like debating - lol! Though like I said before I haven't noticed to many parents on this forum who enjoy debating that much. Just my 2 cents.
Knowledge Without Experience Is Just Information ~ Mark Twain

BTDT
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Postby BTDT » Sat Dec 24, 2005 4:56 pm

:?:
Last edited by BTDT on Fri May 02, 2014 9:03 am, edited 1 time in total.

BTDT
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Postby BTDT » Sat Dec 24, 2005 4:59 pm

Oh, and just in case anyone is interested in seeing the abstract of the study I mentioned above:

http://www.thieme-connect.de/ejournals/ ... 005-868011

Neuropediatrics 2005; 36
DOI: 10.1055/s-2005-868011

Children with autism: A pilot treatment trial with fishoil EPA/DHA. Evaluation of symptom change and changes in PUFAs after supplementation – a randomised double blind, placebo-controlled pilot study
C Klier1, P Amminger1, M Hollmann1, M Schlöglhofer1, M Feucht2
1 Univ Klinik für Neuropsychiatrie des Kindes- und Jugendalters, Wien
2 Univ Klinik für Neuropsychiatrie des Kindes- und Jugendalters und Univ Klinik für Kinder- und Jugendheilkunde, Wien



Objectives: The principal aim is to investigate the effects of 1g/day EPA/DHA in addition to existing psychological and pharmacological therapy in individuals aged 5–17 years with autism on behaviour and lipid status.


Material and Methods: Patients were all recruited from a center which actually treats 120 children and adolescents with autism. All subjects were diagnosed by a specialist using the Autism Diagnostic Interview-Revised (ADI-R) (Poustka et al., 1996). For the dimensional assessment of psychiatric symptoms the Aberrant Behavior Checklist (ABC) (Krug et al., 1980) and the Clinical Global Impression Scale (CGI-S) were used.


We started with a pilot phase including 20 children using a 12 weeks, prospective, double blind, placebo controlled, single center, randomized cross-over study design.


Statistical Analyses


A clinical relevant outcome is the reduction of the ABC irritability score of >35%. (see McCracken et al. 2002). A lower ABC irritability score means lesser behavior symptoms. Also a significant increase in GCI during the time of administration of the verum would show an improvement of the overall functioning. The Topical Niacin Flush Test was performed at baseline and after twelve weeks (developed by Pauline Ward, Highland Psychiatric Research Group, modified assessment score sheet by Dr Gregor Berger, Documentation with high-resolution digital camera for blind rating).


Results: Results of the Niacin Test were negative. Results of the pilot study are positive, which means a decrease of >35% of the ABC irritability score according to the ABC ratings by parents, teachers and professionals or a significant increase on the GCI during the 6 weeks of verum supplementation.


Conclusions: We aim to proceed with a 3 months prospective, double blind, placebo controlled, single center, randomized study including 25 children in each cell.

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

Postby sashasmom » Sat Dec 24, 2005 5:37 pm

Winnie,

We were getting weekly OT and Speech at our home and also driving to a center class twice a week for speech and "social interaction" at our local EI center. We did see literally no improvements and this went on for over a year. We had 1 speech therapist "give up" on him during the process with EI. And actually not all Early Interventions are "no help". EI is designed to teach parents how to help their child. Not take the child away from the parent to give the parent a break. I've been with my son every step of the way and until biomedical we saw NOTHING.......

Sasha has speech 3 days a week, OT twice a week, is in a special ed K3 class, and has a wonderful IEP. I'm not against educational therapies. However when they aren't working for a child it makes sense to me that a parent needs to be aware that there may be something medically wrong with the child that is holding him back from allowing the educational therapies to help him. In our case Sasha had a TON of medical problems. No genetic problems.... just metabollic, heavy metal, mineral deficit, and his immune system is just about gone. (we'll soon be doing IVIG)

Anyway, once we started treating the medical side of his Autism the speech and OT started helping him and we continue therapies to this day.

Just wanted to answer you comment about the article.



Merry Christmas everyone!
Crystal

sashasmom
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Postby sashasmom » Sat Dec 24, 2005 5:44 pm

BTDT,

Sorry forgot to respond to your post. If you want origical study information then start reading books written by the people who started the DAN! protocol.

I wouldn't dare post anyones email on this message board b/c they wouldn't appreciate that. I wouldn't either if I were them. The original studies is what made DAN! what it is today. Start joining yahoo message boards and maybe you'll become friends with a few of the people on there who's children are cured/recovered.

I never said ALL kids are that successful. I said I have spoken and emailed with parents of 15 different children who's response to biomedical what a peak point that it really does work and that Autism is not just a developmental disorder; the kids are truly sick in different ways.

I do accept that Sasha is the way he is however I have also accepted that this isn't really him. He is a lost child and I'm working my hardest to bring him back. With over 250 times the EPA's allowed amount of mercury being administered into his body I'm working to rid him of the toxins so that HE can come back to me.



Anyway, you have a Merry Christmas too.
-Crystal

Guest

Postby Guest » Sat Dec 24, 2005 6:10 pm

DAN! has been available for a long time and I talk to parents who's children were in the ORIGINAL studies years ago and all of their children are CURED and most all of them just take a multi vitamin which we could all use. The kids ages range from 10-15.


I never said ALL kids are that successfull


Got it :wink:

Alex's mom

momtoMatthew
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Postby momtoMatthew » Sat Dec 24, 2005 6:20 pm

:)
Last edited by momtoMatthew on Wed Jul 28, 2010 2:36 pm, edited 1 time in total.

Guest

Postby Guest » Sat Dec 24, 2005 6:35 pm

I probably don't know as much as Crystal, I didn't even know there were DAN! recovery "studies" whose kids are now 10-15 years old. It's just that statements like "all" and "cure" catch my eye.
Along with autism I've become really good at managing uncertainty in my daily life, but I am counting on information accuracy whenever possible.

Alex's mom

sashasmom
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Postby sashasmom » Sat Dec 24, 2005 7:14 pm

I see how my post came across a different way that I meant it to. I meant that all the parents that I talk to who's kids were in the study are recovered/cured. Not all hundreds of kids that were in the study.... I was specifically speaking of the 15. And I'm not exactly what the "official name" of the studies are called... I just know that it involved Dr. Rimland and several others that started the DAN! protocol. It's not a "cure autism DAN! study". From what I understand the parents saying it was the study that originally sparked the interest into looking further into treating kids biomedically. After Dr. Rimland helped his Autistic son who is quite older than most all of our kids (he's in his late 20's or mid 30's, not 100% sure of that) he started doing things with kids and called it a study. He has written book about it and so on. I'm sure that Dr. Rimland had many different areas of studies along with his colluges besides the parents kids that I speak to. Here is link that is helpful on current DAN! information. http://www.autismwebsite.com/ari/index.htm


Sorry that came across wrong but when I re-read it I actually did say 15.... and when BTDT posted she wanted to know how "all kids in the study" were recovered and that was not what I posted b.c. they werent "all" recovered. I don't even know "all" of the people who were involved. But the more you research and the more groups you find (especially yahoo groups) the more you will learn and make relationships with important families who have been there/done that and can help you.

Can we move on from the thread now? It's getting a little old.....

-Crystal
Last edited by sashasmom on Sat Dec 24, 2005 7:38 pm, edited 2 times in total.

Guest

Postby Guest » Sat Dec 24, 2005 7:20 pm

Hi Crystal,

You have repeatedly advised posters to use the search feature, and since you have stated that my questions were "ignorant," I did avail myself of the miracle of search engines.

Here is what I found and didn't find:

I didn't find any DAN! original studies (contrary to your accusation, I have been around for quite some time, and have not heard of these). Did you mean testimonials instead of studies (I can't imagine that these are secret)?

I went to your website to look for this info, but didn't find them there either (really cute pics of your family btw).

Then I ran some other searches. I found quite a few media stories featuring you and your son. I found a number of your posts on other message boards. Your website often pops up too.

I also ran across one of your posts (posted four months ago) where you described a VERY different level of service/experience with early intervention than what you just posted on this board. I think that our bias as parents and point in the journey influences our recounting of events over time. We can't help it, it is hard to be objective and clinical about our own children, and while testimonials are always good information, the data and documentation are important too.

BTW, you may want to reconsider inclusion of the Great Plains/Laidler link on your site. The author of the article has since reversed many of his opinions.

Winnie

BTDT
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Postby BTDT » Sat Dec 24, 2005 7:22 pm

:?:
Last edited by BTDT on Fri May 02, 2014 9:04 am, edited 1 time in total.

sashasmom
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Postby sashasmom » Sat Dec 24, 2005 7:37 pm

I don't know of any of the yahoo groups you are on... sorry. I am a member of CK2 as well as about 15 others which none that you are on except GFCFKids.

Look I haven't seen any studies from 7-10 years ago b/c they aren't available to the public. Some of Dr. Rimland's findings are in his books but probably not all of his research. I just rely on what I see and what the children are doing that are considered recovered. In my opinion they look and act like what most would consider normal NT children. Here is a link to a very young child recovered from autism. Ask his mom what her opinion of recovered is since she has a son who is recovered.
http://slatersjourney.blog-city.com/

Go on Dr. Neubrander's website and watch the videos of recovered kids.

I never ever posted that a study of recovered kids would come up in the search engine. I said that these questions have been raised before... maybe the thread name wasn't "what's the def of a recovered child" but when I have time I'll find the thread and post it for you.

I just got an email from one of the parents and she said that her son was seeing Dr. Rimland 10 1/2 years ago and during that time he ordered several labs (some which DAN!'s do not use order at this time b/c they did not bring much help) and started her son of several different supplements (some of which did not help but many did). According to her he also started to remove certain things from her son's diet which gluten and casein were not the focus at that time. In the end he was on a GFCF diet, many supplements which our kids now take, and yeast was a huge issue that they had to take care of. They also chelated like most of us all do with our children. She said that no MB-12 was involved.
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. They did that for their own reasons which you posted above.

-Crystal
Last edited by sashasmom on Sat Dec 24, 2005 7:57 pm, edited 1 time in total.

sashasmom
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Postby sashasmom » Sat Dec 24, 2005 7:42 pm

BTDT wrote:We tried Taurine after I did a search on it on this board and it seemed like a lot of people used it with success. But it also seemed to be activating for my son, it just made him even more hyper than he already is.


Taurine can be helpful for many kids in high doses. I have heard that in low doses many kids have had a hyper side effect. Taurine is one of the ingredients in many energy drinks like Red Bull and so on. We were using up to 3000mg at one point and saw much success. We slowly started lowering the dose and the effect remained the same. We can definately tell a difference when he misses his dose of Taurine, even at 500mg.

-Crystal


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