Fw: Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

[Guest guest]

> Theresa,

>

> Something else that sticks in the back of my mind concerning ABA.

> Maurice's children and others born in the mid eighties didn't

> receive the onslaught of mercury as the children born after 1988 received.

>

> I'm so happy for the great response to ABA, but for the children who have

> received such great doses of mercury (as well as those children before

> 1988 who were extremely sensitive to smaller doses), biomedical

> interventions are critical. (I personally know of families left destitute

> from ABA therapy alone, and unfortunately are hesitant to shell out more

> money, hope, or energy for recovery).

>

> As I've heard it stated, if a child has cancer, do you stop educating him?

> NO WAY! ASD children should receive the benefit of educational

> interventions as well as biomedical, without question.

>

> Becky

>

> Re: Slow-Motion Miracle: One Boy's Journey Out of

> Autism's Grasp

>

>

>>

>> My jibe at NYT today is because virtually all their articles don't

>> mention therapies other than training, thus today's article reinforces

>> yesterday's, which was far more blatant by bashing non-mainstream

>> approaches. Even Bernie Rimland says that intensive training asap is

>> beneficial. Many parents report that ABA effects were minimal until

>> augmented by biomed evals and child-specific treatments. CSB delineates

>> 4 main categories of response to biomed treatments, from wonderful, to

>> really nice, to just something or other, to nothing at all. Several

>> challenges attend the child who hasn't improved. For instance, some

>> fetal and neonatal neurologic impairment may be permanent, eg,

>> disruption of synaptic development during critical developmental periods

>> has long been known to induce lasting effects. Also, the current vogue

>> of lab-test arrays seems designed to be helpful for most kids but not

>> for all kids. Hugh Fudenberg's 1995-6 panels were far more thorough (4).

>> Today's panels have some categories Hugh didn't use. Every day I

>> wonder, how many of the non-responders to CSB-like protocols could be

>> helped this year if an expanded lab array had been purchased. And at

>> this point the cost of lab arrays becomes crucial. A more thorough array

>> costs more and would identify treatable pathologies in only a small

>> percentage of additional kids.

>>

>> I find myself wondering: among the non-responders, how many kids have

>> been evaluated for the antibodies Connolly describes (1)? For

>> intra-monocyte pathogens whose atypical presence (2) could contribute to

>> the BBB antibodies Connolly et al described? These two questions point

>> towards lab tests most docs don't recommend, towards lab assays

>> described in clinical-research articles but virtually unavailable to the

>> general public, and towards potentially treatable pathways in small

>> subgroups of autistic kids. Of course, only the very wealthy can afford

>> more thorough lab arrays.

>>

>> A 1979 book was remarkably prescient in describing the small subgroup of

>> autistic kids who got better (3). At one of my mini-DAN! presentations,

>> I offered quotes from the book (including the 1979 got-better rate) and

>> compared that rate with today's rates of improvement (eg, via IMFAR

>> chelation abstract of Holmes, Cave, El-Dahr) and asked if the new biomed

>> therapies are helping more kids than got better in 1979. The answer

>> appears to be Yes, even though not all kids get better enuff to attend

>> NT schools w/o aides.

>>

>> A parallel to today's NYTimes article is found in cancer literature.

>> Spontaneous remissions are described, even in folks who refuse

>> treatment. The bodies of such individuals found ways to fight back

>> against the cancer and did so w/o chemotherapeutic intervention. A

>> question today's NYT article doesn't seem to ask is: Was the child a

>> sick child (go to times, see his picture) who for various reasons got

>> well, and, as this occurred, was having ABA therapy?

>>

>> For some parents, a non-responder to biomed evals and treatments faces a

>> dilemma - expand the array of lab data? Bail out? There's no sure

>> answer here. Each parent must choose. I recommend the DeMyer book for

>> parents and physicians wanting an eye-opening glimpse of autism circa

>> 1979, when (even then) some sick kids who qualified for an autism dx

>> recovered.

>>

>> Today, 53 copies were available vir http://www.Bookfinder.com, many

>> quite reasonably priced.

>>

>>

>>

>> 1: J Pediatr. 1999 May;134(5):607-13.

>>

>> Serum autoantibodies to brain in Landau-Kleffner variant, autism, and

>> other

>> neurologic disorders.

>>

>> Connolly AM, Chez MG, Pestronk A, Arnold ST, Mehta S, Deuel RK.

>>

>> Departments of Neurology and Pediatrics, Washington University, St. Louis

>> Children's Hospital, St Louis, Missouri, USA.

>>

>> OBJECTIVE: Etiologically unexplained disorders of language and social

>> development have often been reported to improve in patients treated with

>> immune-modulating regimens. Here we determined the frequency of

>> autoantibodies

>> to brain among such children. DESIGN: We collected sera from a cohort of

>> children with (1) pure Landau-Kleffner syndrome (n = 2), (2)

>> Landau-Kleffner

>> syndrome variant (LKSV, n = 11), and (3) autistic spectrum disorder (ASD,

>> n =

>> 11). None had received immune-modulating treatment before the serum

>> sample was

>> obtained. Control sera (n = 71) were from 29 healthy children, 22 with

>> non-neurologic illnesses (NNIs), and 20 children with other neurologic

>> disorders

>> (ONDs). We identified brain autoantibodies by immunostaining of human

>> temporal

>> cortex and antinuclear autoantibodies using commercially available kits.

>> RESULTS: IgG anti-brain autoantibodies were present in 45% of sera from

>> children

>> with LKSV, 27% with ASD, and 10% with ONDs compared with 2% from healthy

>> children and control children with NNIs. IgM autoantibodies were present

>> in 36%

>> of sera from children with ASD, 9% with LKSV, and 15% with ONDs compared

>> with 0%

>> of control sera. Labeling studies identified one antigenic target to be

>> endothelial cells. Antinuclear antibodies with titers >/=1:80 were more

>> common

>> in children with ASD and control children with ONDs. CONCLUSION: Children

>> with

>> LKSV and ASD have a greater frequency of serum antibodies to brain

>> endothelial

>> cells and to nuclei than children with NNIs or healthy children. The

>> presence of

>> these antibodies raises the possibility that autoimmunity plays a role in

>> the

>> pathogenesis of language and social developmental abnormalities in a

>> subset of

>> children with these disorders.

>>

>> PMID: 10228297 [PubMed - indexed for MEDLINE]

>>

>>

>> 2: Med Hypotheses. 2001 Apr;56(4):523-31.

>>

>> Intra-monocyte pathogens delineate autism subgroups.

>>

>> Binstock T.

>>

>>

>> Immune panels of many autism-spectrum children reveal signs of atypical

>> infections and shifted cell counts. In conjunction with trait-related

>> cerebral

>> hypometabolism and hypoperfusion, these findings suggest a hypothesis:

>> Several

>> autism-spectrum subgroups derive from intra-monocyte pathogens such as

>> measles

>> virus, cytomegalovirus, human herpesvirus 6, and Yersinia enterocolitica.

>> Furthermore, with much inter-child variation, their effects manifest as

>> diminished hematopoiesis, impaired peripheral immunity, and altered

>> blood-brain

>> barrier function often accompanied by demyelination. In some such

>> children, one

>> or more of these pathogens persists as a chronic-active, seemingly

>> subclinical

>> infection etiologically significant to the child's autistic traits.

>> Within these

>> subgroups, immune impairments and atypical infections may be treatable.

>> Copyright 2001 Harcourt Publishers Ltd.

>>

>> PMID: 11339860 [PubMed - indexed for MEDLINE]

>>

>>

>> 3. n K. DeMyer. Parents and children in autism.

>>

>> 4: Biotherapy. 1996;9(1-3):143-7.

>>

>> Dialysable lymphocyte extract (DLyE) in infantile onset autism: a pilot

>> study.

>>

>> Fudenberg HH.

>>

>> Neurolmmuno Therapeutics Research Foundation Spartanburg, S.C., USA.

>>

>> 40 infantile autistic patients were studied. They ranged from 6 years to

>> 15

>> years of age at entry. 22 were cases of classical infantile autism;

>> whereas 18

>> lacked one or more clinical defects associated with infantile autism

>> ( " pseudo-autism " ). Of the 22 with classic autism, 21 responded to

>> transfer

>> factor (TF) treatment by gaining at least 2 points in symptoms severity

>> score

>> average (SSSA); and 10 became normal in that they were main-streamed in

>> school

>> and clinical characteristics were fully normalized. Of the 18 remaining,

>> 4

>> responded to TF, some to other therapies. After cessation of TF therapy,

>> 5 in

>> the autistic group and 3 of the pseudo-autistic group regressed, but they

>> did

>> not drop as low as baseline levels.

>>

>> Publication Types:

>> Clinical Trial

>>

>> PMID: 8993773 [PubMed - indexed for MEDLINE]

>>

>>

>>

>> wrote:

>>

>>>This seems to be a story written by the father - maybe they don't

>>>know about chelation and biomedical intervention. Or maybe they do,

>>>and have chosen not to try it. Is your point that the NYT shouldn't

>>>publish stories about autism that don't mention alternative

>>>treatments?

>>>

>>>We're doing just about everything with our son BUT ABA. He's made

>>>some improvements, but I really don't know if they are due to the

>>>interventions or the natural course of his autism. I'm really

>>>wondering lately if we're missing by the boat by not also doing ABA

>>>or VB.

>>>

>>>

>>>

>>>

>>>

>>>

>>>>{Words like Chelation, Autism Research Institute, and supplements

>>>>

>>>>

>>>do not

>>>

>>>

>>>>appear in this article. The NYT's one-sided, propagandistic

>>>>

>>>>

>>>approach to

>>>

>>>

>>>>pseudo-journalism continues. -}

>>>>

>>>>Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

>>>>By JOHN O'NEIL

>>>>http://www.nytimes.com/2004/12/29/education/29autism.html

>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>

>>

>>