Plateau effect of kids getting better with biomed....read on

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Plateau effect of kids getting better with biomed....read on

Postby Guest » Mon Dec 19, 2005 6:32 pm

http://www.ravenintellections.com/plateau.htm

Plateau effect in healing autism-spectrum children
Teresa Binstock

Researcher in Developmental & Behavioral Neuroanatomy (9)

PO Box 1788

Estes Park CO 80517

usa

© December 19, 2005 (b)



During November and December, 2005, I visited several autism families in their homes. These visits lasted from one to several days. The home environment allowed each child to display a range of behaviors and gestures that might not be apparent in an interview situation or from other perspectives such as a camp for ASD children and their families (ASD Gathering, Ojai,Calif, 2004, 2005).

Two general categories distinguish the children. Some were early in the stages of biomedical therapeutics and other therapeutics, and others had been following biomedical and other therapeutics for several years (1-5).

For many children treated biomedically in accord with a DAN! approach and the closely related strategy summarized in the book Children with Starving Brains (1), cognitive and behavioral improvements important to the child and to his or her family have occurred. However, as months turn into years, then into more years, some such children retain a negative trait (or several) and/or fail to develop a positive trait that naturally occurs among neurotypical peers of a certain age. In other words, a plateau of healing becomes apparent for some children who have been making improvements via biomedical therapeutics for a long time. In some instances, an affected child who had been accepted by non-affected, similarly aged peers begins to be rejected as the peers realize that their pal is different.

Playing “catch” provided insights. Two soccer balls were available. The younger, unaffected sibling (4yo) understood the concept of “playing catch”, whereas the older, affected-child (7yo) did not grasp the concept of playing catch and threw the ball aggressively without regard to the person who – in a game of catch – ought to have been the recipient. When that affected child was younger – after a year or several of biomedical interventions and other therapies that have been very healing, very helpful – that child’s not comprehending the rules of playing catch may have been overlooked by his peers, but as the affected child and the other children advance in age (eg, as they become 7 or 8 or 9), the affected child’s inability to play catch becomes a significant impairment of sociality – as his peers begin to notice his “otherness”. Concurrently, his parents have come to sense the peers’ reactions to the affected child.

Another lad (aged 12) has made significant improvements via DAN!-associated biomedical and other therapies. Yet he too has remaining traits that are beginning to set him apart from peers, some of whom has been playmates until recently. This lad had biomedical issues delineated by lab data, medical history, and observation, thus he may yet heal in ways that minimize his increasing distance from peers. However, regardless of improvements that may occur in the future, as months turn into years, circa 2005 he is learning about social rejections and about other quirks in his cognition.

In contrast, several affected children who had only recently begun biomedical interventions were amidst wonderful progress and had not been biomedically treated long enough for parents and others to sense if and where each child’s adverse traits would plateau.

Among the children and families visited this fall, an affected child who is nearly five seems to be the closest to achieving neurotypical. In contrast, a somewhat older, still severely affected child has been making major gains via several biomedical and other therapies. Nonetheless, while amidst these ongoing improvements, he continues to be a very affected child. How much progress towards neurotypical each child shall make remains to be determined, as does the nature of each child’s plateau in healing.

The concept “plateau” is not cast in stone. What seems like an enduring set of negative traits (or absence of certain positive traits) may ameliorate with further treatment, perhaps and especially if additional “breakthrough” therapies are developed.

In the absence of new treatments, an important question arises: Does a specific child’s plateau reflect persistent, deeply embedded neurologic and gastrointestinal damage from toxins and suboptimal nutrients? Two ramifications follow.

A. The plateau achieved by long-term biomedical therapeutics may represent the core of what social, environmental, and medical policies have done to injure the child (eg, the allowing of a wide range of toxic exposures).

B. The characteristics of a specific child's plateau become a more precise foundation for physical and cognitive therapies as the child ages, especially for children who have healed to a functional level of self-awareness, social awareness, receptive language, and cognition.

The biomedically oriented book Children with Starving Brains delineated general categories (levels) of improvement in response to parental investments in biomedical evaluations and interventions (1). When considering hundreds or thousands of ASD children, the results of biomedical therapy range from no gains, to some gains, to neurotypical. In most families, biomedical interventions are accompanied by other therapies (eg, ABA).

A baseball analogy is useful. Some parents "strike out" pursuant to not inexpensive biomedical therapeutics, others hit a single and get to first base, others get to second base, while still others hit a triple and get to third, and a size-unknown subgroup of parents hits a home run and their child heals to the point of becoming virtually (and in some cases perhaps actually) neurotypical.

The early years of biomedical therapy are years of hope:

Many and perhaps most children respond to biomedical therapeutics with various improvements (reductions of adverse traits, increases in positive traits). For instance, finally to have potty trained an 8yo is hugely important for a family (1). Generally, biomedical therapeutics receive higher ratings from parents than do pharmaceutical interventions (6). However, as years go by, some parents begin to notice negative traits which are persisting despite continuations of biomedical therapies.

Are these persisting traits actually a plateau for a given child? In practical terms and in real situations, the answer may be Yes. However, in discussing the ‘plateau’ concept with Bernie Rimland, Ph.D., founder and director of the Autism Research Institute (ARI), he cautioned against conceptual limits, because new biomedical therapies and better individual profiling may be on the horizon.

Peer relationships and time:

As children age, peer relationships are expected to change. For some families, the child’s advance in years provides yet another indication of ways that the child is different from peers. In some instances, (despite years of improvements via biomedical and other therapeutics) the affected child begins to be perceived as different by children who had been peers, even friends. As these perceptions occur, the parents notice and may wonder about the next biomedical advance that may elevate or even eliminate the child's recovery-plateau. Additionally, some affected children are sufficiently aware and sensitive so as to be hurt when peers and friends begin to act in ways whereby the affected child's otherness (different-from-ness) is made clear.

Biomedical interventions, related improvements, social awareness, and plateaus occur on a timeline:

Generally (according to many physicians and parents active in the ARI-affiliated DAN! movement; 7), the younger the child when biomedical interventions are begun, the more the child will shed negative traits and acquire positive traits that had been blocked by his or her underlying physiological problems. An additional aspect of time is that as the biomedically improving young child progresses toward middle-school ages, the child's atypical awareness of games and sociality will become a more significant factor as the child interacts with neurotypical children. Sadly but realistically, some parents will observe neurotypical children who ay begin to commit acts of rejection of the affected child who had been a virtual peer to the neurotypical children.



Hope versus limits:

Several parents who have been autism list participants for nearly a decade have had their affected child become violent during puberty and have had the violence persist. Aggression joins with impulse-control difficulties and combines with the pubertal and post-pubertal child’s increasing strength. In some cases, parents have been injured by the child who is now full grown and very strong. Changes such as these prompt some parents to accept the need to place their child in a group home or other facility. Recently, a 16 year-old Asperger’s lad fired a gun repeatedly in a home, police intervened, and the child is now encumbered by justice-system participation. More generally, among inmates of penal institutions, Asperger's individuals are present in a percentage far exceeding the rate of Asperger's in the general population (8)

A bottom line:

As years pass, a given child’s plateau amidst healing may bring increasing “apartness” (ostracism) and may, in some cases, lead to unacceptable moments of violence or other challenges rooted in atypical impulsivity. Thus, there is a persisting reality to the concept plateau in biomedical healing of autistic children, even when combined with other therapeutics. For several children I visited in California, years of biomedical intervention have induced significant improvements in their health, behavior, and cognition, but circa 2005, each of these long-treated children has arrived at a plateau wherein adverse traits persist seemingly unresponsive to currently available biomedical therapeutics. Perhaps additional, perhaps new biomedical therapies will elevate each child’s plateau, but – when considering all children who have improved via biomedical and other therapeutics – most such children and their families are likely to have achieved something less than a “home run”. And the distance from the “home run” may – in many such individuals – reflect an underlying neuronal, synaptic, or gastrointestinal pathology that will remain very difficult to repair.

Thus, circa 2005, the plateau concept has validity and can be useful in guiding additional therapies.

Srinath

What

Postby Srinath » Mon Dec 19, 2005 8:40 pm

What ... OK I didn't get the point of this whole long winded post ... anyway earlier in the child's life you start chelating him, the lesser mercury assault he/she has had, the lesser his/her sensitivity to it the more he/she turns NT. You dont expect to chelate a 35 year old autistic man who has had 100's of flu shots and has extreme sensitivity to Mercury for 2 years and expect him to be neurotypical. 1 Rule ... I think should be sorta remembered ... but its non scientific cos I came up with it ... you can get the mercury out only as fast as it went in. and it will take the same amount of time it sat in there to get it all out. You chelate a 36 yr old for 36 years and he will make a normal 72 yr old. Common sense ... plateau ... maybe they cannot treat him for 36 years, they stop at a point where it feels like it will take too loooooong to make that small bit of progress. I frankly dont expect recovery till we do it for 3 years on my 3 year old.
Cool.
Srinath.

natasa778
Posts: 155
Joined: Mon Dec 12, 2005 1:42 pm

Postby natasa778 » Mon Dec 19, 2005 9:10 pm

Srinath, I am not so sure about this in our case. My son has no mercury poisoning, no heavy metals (only one, I think cadmium, is near the 'normal' ref range upper limit, but still within it). And some things he has improved on a lot, some only in small ways, and there are things (like imaginative play) that we have seen zero improvement with. So although he is a great responder, and he is still very young, only time will tell what really is going on there... But then again, if mercury is the only, or the main problem, at least you know what you are dealing with and what course of action to take.

Natasa

Srinath

Cadmium

Postby Srinath » Mon Dec 19, 2005 9:31 pm

Cadmium ... lots of it in cigarette smoke ...
Cool.
Srinath.

Guest

Postby Guest » Mon Dec 19, 2005 10:17 pm

Bla bla bla …..Im here to recover my child so why would I want to read any different?

I say No plateau or shelf that is mere remeadiation.
Anyone say any different.????????????????????????????
What ... OK I didn't get the point of this whole long-winded post ... anyway


Way to go Srinath.



Thanks
Guest

Srinath

Mercury

Postby Srinath » Mon Dec 19, 2005 11:07 pm

natasa778 wrote:Srinath, I am not so sure about this in our case. My son has no mercury poisoning, no heavy metals (only one, I think cadmium, is near the 'normal' ref range upper limit, but still within it). And some things he has improved on a lot, some only in small ways, and there are things (like imaginative play) that we have seen zero improvement with. So although he is a great responder, and he is still very young, only time will tell what really is going on there... But then again, if mercury is the only, or the main problem, at least you know what you are dealing with and what course of action to take.

Natasa


OK how did you figure out that mercury isn't there. Because it hides the best, everything else comes out first.
Cool.
Srinath.

Guest

Postby Guest » Tue Dec 20, 2005 12:04 am

why would I want to read any different?


To see for example what happens to others doing similar interventions. I am curious. Isn't everyone?

You chelate a 36 yr old for 36 years and he will make a normal 72 yr old. Common sense ...


I'm sorry, I had to ask- are you serious about this?


I thought the article made a great point. It matches what I've seen with my kid and many other parents have seen as well. Whether it is because we've not yet pinned down/treated all their biological problems, or because of irreversible prior damage being done, or because of different brain wiring or who knows, I believe there are in most cases some permanent residua of the disability who will affect future functioning. I'm glad people are mindful of this and keep looking. I saw huge improvements with my son, yet I know in my heart that he will never be completely "normal". In the beginning when it's all about language , understanding and behaviors you think that you'll get those and you're golden. My son has all that, yet I see differences in processing, in relating to the world, pragmatics etc that no supplement in the world will fix. This IS his brain. I'm not saying recovery isn't possible (I haven't met anyone personally, but I know they exist), I'm saying it's a minority. Even on Dr. N's site they talk about children who are "recovered or nearly recovered". The difference is huge to me. My son would probably qualify eventually for "nearly recovered", yet will most likely never completely cross over. I'm not splitting hairs here, I'm sure I'm not the only one who has a kid suspended in a better place of the spectrum who can't make it to the "other side".
I appreciate the honesty of Teresa Binstock's article. It actually matches was Dr. McC says in her book as well. I've always considered myself very fortunate for the way information about autism was revealed to me when my son was first diagnosed. I would hate to be a new parent and somehow get the idea that my child will be "cured" if only I do xyz, and then go through the renewed grief process when a cure doesn't happen by magical age of 5 or 6 and what was promised isn't being delivered.
Our first DAN! doc said from the door "he will recover". When I asked what he based this statement on, given that he had just met my son and had no idea (neither had we) on how he will do on treatments, he couldn't say. I knew not to believe him blindly, just as I knew not to believe the neurologist who didn't offer any hope. IMO, both statements were unprofessional. I think we have to keep in mind the huge grain of salt most of these treatments still have and the many unknowns our kids carry. I'm not throwing in the towel, and I'm not giving up hope, but I'm not giving up my ability to stay realistic either.

Alex's mom

Srinath

36 year old

Postby Srinath » Tue Dec 20, 2005 1:50 am

Well 36 year old being chelated for 36 years isn't actually my main focus. I would just have to say, improvement is subjective, some kids if they have lived with mercury for long enough, even getting it out may not fully restore brain function. Some other kids may bounce back fully. Just a individual difference ... different in their symptoms and different in their treatment and different in their recovery as well. Like snow flakes right. That's what I would think. How far my son comes along can only be measured against his own yardstick.
Cool.
Srinath.

natasa778
Posts: 155
Joined: Mon Dec 12, 2005 1:42 pm

Postby natasa778 » Tue Dec 20, 2005 11:53 am

Alex's mom,

I very much agree with you. Just another thought: it could be that once we see the plateau effect kick in, or even after a complete recovery (ie no obvious signs of autism left) it might just be that, after having missed years of social or communicative development, our kids cannot just catch up on those skills. In the example Teresa gives there, the kid doesn't comprehend the 'social rules' of playing the catch - it could be that having skipped a normal (nt) type of sociallisation this boy cannot just learn those skills out of nowhere. So yes, our kids might get to the stage where they are biologically healthy, be it completely clean of mercury or viruses, or whatever, they still remain 'autistic' in the sense that social (and possibly some other) skills are just NOT THERE. It could just be that those skills take years of CONTINUOUS development, which our kids are not getting.

Which takes me interventions like RDI or similar (I was actually going to enroll to RDI but then found it prohibitevely expensive, shame) interventions, that restore missing skills...

Just a thought.

Natasa

Guest

Postby Guest » Tue Dec 20, 2005 12:18 pm

Natasa and Alex's Mom,

I think you both raise some excellent points. One great concern I have in the biomed realm is that some parents dismiss therapies as unecessary, as presumably when their child is "recovered," these developmental gaps will magically disappear with no intervention. While the gut is healing or metals are being excreted, and while some improvements are seen, the child may be falling even further behind his peers in skill and language areas in the absence of aggressive intervention in these areas. In order to be "recovered," there is a lot of developmental ground to cover and "make up."

Some parents are actually "anti-intervention," not that I can blame them based on the quality of services they have received. However, this would be like taking TMG once a week for six months, seeing no improvement, and then stating that biomed treatments did not work.

Interesting paper.
Winnie

Srinath

Repetetive

Postby Srinath » Tue Dec 20, 2005 12:27 pm

natasa778 wrote:Alex's mom,

I very much agree with you. Just another thought: it could be that once we see the plateau effect kick in, or even after a complete recovery (ie no obvious signs of autism left) it might just be that, after having missed years of social or communicative development, our kids cannot just catch up on those skills. In the example Teresa gives there, the kid doesn't comprehend the 'social rules' of playing the catch - it could be that having skipped a normal (nt) type of sociallisation this boy cannot just learn those skills out of nowhere. So yes, our kids might get to the stage where they are biologically healthy, be it completely clean of mercury or viruses, or whatever, they still remain 'autistic' in the sense that social (and possibly some other) skills are just NOT THERE. It could just be that those skills take years of CONTINUOUS development, which our kids are not getting.

Which takes me interventions like RDI or similar (I was actually going to enroll to RDI but then found it prohibitevely expensive, shame) interventions, that restore missing skills...

Just a thought.

Natasa



See autistic kids learn by many many repeat tries. Then they forget, and have to learn again ... The basic idea of teaching the same thing 100's of times is what drives parents to despair. If the kids get better to such an extent that they are right about on par with their NT's in brain function, you can teach them once and they will remember. As in I didn't start learning riding a bicycle till I was 14. However by 14.1 - 1 month - I was level with anyone that had riddedn for 5-6 years ... after the first few days there is nothing left to learn. Playing catch is the same way. If the kid remembers ... and recognizes this is a ball, you throw it, or kick it ... bingo, no need to spend 1000's of tries teaching him cos there isn't any more. The problem is that they forget ... and dont recognize it as a ball the next time. I dont believe you have missed any real benifit by not doing RDI just yet. It can follow the chelation, or you may realise its not needed after it, you can teach him on a trip or 2 to the grocery store.
Cool.
Srinath.

Guest

Postby Guest » Tue Dec 20, 2005 12:36 pm

If only learning language and social skills were as easy as learning to ride a bike...I wish it were so...but alas, it is not so.

Winnie

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

Yea finally somehting we agree on.

Postby srinath » Tue Dec 20, 2005 12:45 pm

Anonymous wrote:If only learning language and social skills were as easy as learning to ride a bike...I wish it were so...but alas, it is not so.

Winnie



Absolutely true. I evidently have all the social skills of a sledge hammer and as as sutble as one too ... atleast I dont pick my teeth with it ... :lol: ... but guess what ... I am near normal functional and even fairly succesful in life ... so I dont think its as important. See when you know your strngths and limitations you arrange your life to fit you. If you constantly forget what you know and who you are, its going to be rough.
Cool.
Srinath.

Guest

Postby Guest » Tue Dec 20, 2005 1:53 pm

I saw huge improvements with my son, yet I know in my heart that he will never be completely "normal". In the beginning when it's all about language , understanding and behaviors you think that you'll get those and you're golden


Im here to recover my child so why would I want to read any different?

I say No plateau or shelf that is mere remeadiation.
Anyone say any different.????????????????????????????

Guest Elaine

Postby Guest Elaine » Tue Dec 20, 2005 7:55 pm

I thhink a lot of the platea's in improvement are overlooked underlying biomedical issues that still need addressing. We've been seeing nice gains with chelation, but I felt it wasn't enough. We started our 3 yo son on LDN several weeks ago, and have seen more improvements. We did the high dose vitamin A protocol, and it does seem that his gut is better. I keep an open mind to everything, because the ASD kids have a multi-system shutdown. I do think viruses are a big player, very big, for asd kids. We hope the LDN will help with that, and will be having our 3 yo asd son (Stevie) participate in McCandless LDN study - I DO want to have documented evidence what LDN and other therapies are doing to help him with viruses and his whole immune system.

My Motto: Leave no stone unturned - look into EVERTHING.

Elaine

Guest

Postby Guest » Wed Dec 21, 2005 7:51 am

Elaine, I absolutely agree with keeping no stone unturned. There is much danger in focusing on one thing only and getting bitterly disappointed if/when that shows not to be the 'end-all solution'.

Shrinat,
think about this:
Kid A and kid B both receive a vaccine on the same day. Kid A regresses into autism, kid B doesn't (stays nt).
Or the following scenario:
a mother is expecting twins. She has lots of amalgam fillings fitted during pregnancy, also eats lots of sushi etc. One twin is born autistic, the other is born nt.

I guess what I'm trying to say is that there seem to be issues with our kids that run much deeper than simple metal poisoning. Yes, the metals are not being excreted, yes you get rid of them and see noticable improvements, sometimes even full recovery, but the underlying core problems - the fact that our kids system got overburdened (and not went the way of Kid B's), the deeper core problems are still there. So, if say child's immune system is dysfunctional and could not deal with outside stressors (which I think goes closer to the heart of the problem) even after you remove metals this immune system is still not perfect and will be left vulnerable to whatever comes next.

Or on an even 'deeper' note, there was a thread on this forum recently pointing to an article/letter addressed to Dr Rimland by parents of a severelly autistic girl who wasn't responding to any treatments. After years of searching (and almost giving up) it turned out that their child's thyroid function activity was almost non-existent. Which to me illustrates the above point: although this girl probably did have some metal issues, they were almost certainly a result of deeper, underlying metabolic/immune problems.

We need to always keep an open mind when it comes to this big autism puzzle.

Natasa

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

srinath

Postby srinath » Wed Dec 21, 2005 8:47 am

Excellent point ... I would like to point out 1 small encouraging tidbit though. Even the smartest of us use less than 3% is it or 1% of our brain's capacity. Its go so many redundancies built in. The mercury comes out and we take him the rest of the way with training or whatever he needs. The underlying overload related issues will probably be minor compared to the continual effect of the mercury. I also believe younger kids are more likely to get closer to NT since brain development slows with age. Best time to have chelated is right when we were told. I am so kicking myself for missing out a years worth of chelation for my son.
Cool.
Srinath.

wide awake
Posts: 6
Joined: Sun Jun 19, 2005 5:35 pm

plateau effect

Postby wide awake » Wed Dec 21, 2005 7:58 pm

I don't know how well my son will do. But I do know it is a mistake to base recovery on how well kids do in middle school. My own feeling is work towards adult behavior...that will do them the most good in the long run...how many of us were losers...now successful as adults...or winners...now waiting for the phone to ring ? I also think expecting a social butterfly when your child is on the spectrum is a bit much...my goal for my son is age appropriate language, and the ability to live independently.

kathleenjj
Posts: 487
Joined: Tue Apr 19, 2005 1:09 am

Postby kathleenjj » Wed Dec 21, 2005 9:33 pm

Honestly, this post just depressed the living daylights out of me.
Kathleen
Proud Mom

Kenny V

Stories Of Hope

Postby Kenny V » Thu Dec 22, 2005 12:55 pm

*********Stories Of Hope ********

There is no upper shelf level of recovery in my dictionary.
Please don’t prescribe to anything less.

IMO that is the biggest stumbling block that we as parents can have for our children.
It is bad enough that the world around as already doesn't have this “HOPE”, why should we subject our thoughts towards it, nor let our children enter in to this pre-determined methodology of thinking.

This my friends is the “ Old school of thought”
It is callused, bound for remedial, coupled with a predetermined outcome.

But we have this “Hope” and that is why we are all here.
Hold it captive in your thoughts, keep it alive in your prayers and dreams and treasure it in your heart.

Kenny V




Hebrews 11
Hebrews 11:1 (New King James Version)

By Faith We Understand

1. Now faith is the substance of things hoped for, the evidence of things not seen.


http://www.biblegateway.com/passage/?se ... ersion=50;



*********Stories Of Hope ********

Generation Rescue Success Stories - Parent Testimonials
http://www.generationrescue.org/testimonials.php



My sons story coming soon

Look under Stories of Hope
http://www.treatingautism.ik.com/


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