evaluation

[Guest guest]

My son (3 1/2) was diagnosed by a developmental pediatrician as having

Asperger's Syndrome. The eval consisted of me filling out tests, a 1 hour

consult with the doc where he did many tests with my son and observed him

playing for a few minutes. A week later, the doc diagnosed him and told us he

needed daily education, speech therapy, OT and behavior therapy.

So, i thought we were well on our way until I realized how much this DOESN'T

tell me about my son.

How do I find out about things like strengths, weaknesses, areas to focus on

now, what can wait, educational needs, etc?

We started Speech, OT, and 3 days a week preschool. We just started so it may

get better, but it's just " okay " right now.

Another person recommended we do the full evaluation at Texas Children's (we

live in Houston). He would be seen by an OT, Speech, psychologist,

developmental ped, and neuro-something?.

this is obviously anothe BIG deal and i'm sure costly. Has anyone done this

eval and was it very helpful?

Thanks

________________________________

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of blessingsx10@...

Sent: Wednesday, April 19, 2006 9:08 AM

To: Texas-Autism-Advocacy

Subject: Re: Age of Autism: POX -- Part 1

From Monsters and Critics.com

Consumer Health

The Age of Autism: Pox -- Part 1

By Dan Olmsted

Apr 18, 2006, 19:00 GMT

OLYMPIA, WA, United States (UPI) -- Children in families with problematic

reactions to chickenpox virus may be at risk for developing autism if they get

that live-virus immunization too close to other live-virus vaccines, a

three-month United Press International investigation of cases in one northwest

U.S.

city suggests.

Several such families in the Washington state capital of Olympia watched

their children regress into full-syndrome autism -- losing language and social

skills and adopting repetitive behaviors -- in the months following the shots.

Two children had participated in small clinical trials in Olympia of

investigational Merck & Co. chickenpox vaccines in combination with the

live-virus

mumps-measles-rubella vaccine -- the MMR.

Federal health authorities consistently have rejected concerns about a link

between immunizations and autism. But a family background of problems coping

with viruses used in live-virus vaccines has not been considered a possible

risk factor, experts said.

One of the children in the clinical trials, Jimmy Flinton, now 4, got about

10 times the standard dose of chickenpox vaccine in a shot that also contained

the MMR.

Called ProQuad, that combined immunization was approved by the U.S. Food and

Drug Administration last September -- the first time four \'attenuated\' or

weakened live viruses have been mixed together in a single shot.

The second child, Baltzley, now 6, got an investigational \'process

upgrade\' chickenpox shot and a separate MMR shot at the same office visit.

Both children have a parent who had unusual reactions to chickenpox virus.

`s Baltzley`s mother, , had chickenpox three times, the last

at age 16, just three years before he was born. Jimmy Flinton`s father, ,

had shingles as a teenager. Shingles is reactivated chickenpox virus that

painfully inflames nerves and mostly affects older people or those with

weakened immune systems.

Both children got the vaccines at 12 months, the age at which chickenpox and

MMR immunizations are first recommended by the Centers for Disease Control

and Prevention. They were among a total of 101 subjects in the two trials in

Olympia, according to the Western Institutional Review Board, which approved

the trial protocols.

Half-a-dozen other parents of preschool-age autistic children from the same

neighborhood in Olympia recognized a common thread: unusual chickenpox

histories in their families and simultaneous or closely timed chickenpox and

MMR

shots in their children.

\'It`s the proximity of the chickenpox and MMR vaccinations\' and the family

histories that stand out, said Rohrbeck, mother of 3-year-old Grant.

Rohrbeck has not been able to develop immunity to chickenpox despite being

twice vaccinated as an adult, the last time just two years before her son was

born. A couple of months before he got the standard chickenpox and MMR shots

at the same office visit at age 1, Grant had a stubborn and severe case of

roseola, which like chickenpox is a herpesvirus.

Four days after the MMR and chickenpox injections he became ill with a fever

and lay limp in his mother`s arms for the first time in his life.

\'He began having chronic diarrhea, and by his 15-month checkup he had

regressed so drastically that his pediatrician suggested he could be

autistic,\'

Rohrback recalled. The doctor agreed to the parents` request for an immediate

neurodevelopmental evaluation, which resulted in a diagnosis of full-syndrome

autism.

Rohbeck said she began looking for a possible connection between vaccines

and autism among neighborhood children after the Thurston County Health

Department did not follow up on parents` concerns raised at a meeting last

October.

With the parents` continued involvement, she has now compiled vaccination

records of 14 Olympia children diagnosed with autism, as well as 16 who are

not.

The admittedly unscientific chickenpox-MMR association continues to be

striking, and the two cases following the clinical trials seemed to underscore

it,

she said.

A Merck spokeswoman said the company reported those two cases to the FDA

this March -- the same month UPI asked Merck about them.

\'We just received these reports in March 2006, six months after ProQuad was

approved in the U.S., and they were sent to the FDA after we received

them,\' Merck`s Fanelle said in a statement. She said Merck received

\'the two reports of autism AEs from Olympia -- one from the parent of a child

in

the ProQuad trial and one from the parent of a child in (the `process

upgrade` chickenpox) study.\'

Parents Flinton and Baltzley say they never called Merck

and wouldn`t know who to contact there; last summer, Flinton reported

Jimmy`s autism to the federal government`s Vaccine Adverse Events Reporting

System, attributing it to the cumulative effects of vaccination. The federal

health employee she spoke to on the phone said she would follow up by

gathering lot numbers and other information on the vaccines.

The parents said their pediatrician, who conducted both of the Merck-funded

trials in Olympia, knew about their children`s autism diagnoses within months

of their participation in January 2001 and October 2002.

The Olympia trials were part of wider Merck studies conducted at several

sites in the United States and abroad. Fanelle said Merck would not disclose

information about any other reports of autism.

\'We have confirmed your original inquiry on whether we received the two

reports out of Olympia,\' she said. \'We are not going to comment on reports

beyond this.

\'There were more than 7,000 children in our ProQuad trials, 5,800 of whom

received ProQuad vaccine,\' she added.

Sparby of the Western Institutional Review Board in Olympia said it

had not received reports of autism from the local ProQuad study, but she noted

the protocol \'was not designed to assess long-term safety, as it called for

follow-up for only 42 days following vaccine administration.\'

The FDA, which approves drugs after determining they are safe and effective

and monitors reports of side effects after they come on the market, did not

respond to repeated inquiries from UPI about the Olympia cases or parents`

concerns about family chickenpox histories.

Other unusual histories in neighborhood families with autistic children 6

and under:

-- Another child had roseola 12 weeks before getting his chickenpox and MMR

shots;

-- Another father had shingles as a teenager;

-- Another mother had chickenpox as an adult two years before her pregnancy;

-- A mother had chronic cold sores, also a herpesvirus, as a child that were

so severe they had to be treated medically;

In addition, another mother had a case of measles as an adult.

Merck, which manufactures the standard MMR shot and the standalone Varivax

chickenpox shot as well as the experimental vaccines used in the clinical

trials, said repeated studies show no relation between vaccines and autism.

\'We don`t see an association,\' spokeswoman Fanelle said, citing as

confirmation a 2004 report by the widely respected Institute of Medicine, part

of

the National Academies. That report rejected a link between autism and either

the MMR vaccine or the mercury-based preservative thimerosal. The report also

urged that research dollars be spent on \'more promising\' autism research.

\'There will always be some people who say vaccines cause autism despite the

lack of scientific evidence,\' Fanelle said.

In the United States, controversy over a possible link has centered on

thimerosal. Beginning in the late 1980s children were exposed to increasing

amounts of thimerosal, which is half ethyl mercury, as more vaccines were

mandated.

Thimerosal was phased out of routine childhood immunizations -- but not all

flu shots given to children and pregnant women -- beginning in 1999. Although

the Olympia children with autism were born after the phase-out was

recommended, their vaccine records show more than half of them got at least one

shot

containing thimerosal during the first year of life. It is possible all of

them did, but incomplete information from manufacturers makes that uncertain.

Chickenpox and MMR immunizations don`t contain thimerosal because the

mercury would inactivate the viruses, but some proponents of a vaccine-autism

link

suspect thimerosal exposure from other immunizations could have a

potentiating effect, damaging a child`s defenses and paving the way for live

viruses to

wreck havoc.

All live-virus vaccines are attenuated -- significantly weakened based on

the theory that this creates immunity without causing the actual disease or

other adverse health consequences. Other vaccines on the U.S. childhood

immunization schedule, including hepatitis B and the polio shot, contain killed

or

so-called inactivated viruses. Live polio virus was dropped in 2000 after

health authorities determined it was actually causing polio in a small number

of

cases.

Despite the Olympia parents` concern, none points an accusing finger at

doctors.

\'I worry about pediatricians being vilified,\' said Rohrbeck. \'We

vaccinated our son because we shared their faith that vaccines were safe.

\'If it turns out that some vaccines are not safe for all children and that

these hazards could have been found with more rigorous testing -- or worse,

that the dangers were already known -- that`s the fault of the CDC, the FDA

and the manufacturers,\' she said.

\'I`ll defend doctors to the end on this point. They are a convenient front

line for those agencies to hide behind -- it`s just shameful.\'

The theory that live virus immunizations could trigger autism first arose in

1998 in Britain, when gastroenterologist Dr. Wakefield published a

paper suggesting a possible association between childhood MMR immunization,

bowel disease and regressive autism.

The premise: Interaction between viruses -- scientifically known as immune

interference -- could depress a susceptible child`s immune system, lead to

persistent infection by the measles virus in the GI tract and possibly the

nervous system itself, and trigger autism-inducing brain damage. While the case

has not been proven, it gains plausibility from the fact that naturally

occurring measles infection is known to cause delayed brain damage in a small

percentage of children, proponents of the theory say.

Wakefield`s study, and his plea in Britain to separate the component

measles, mumps and rubella (German measles) vaccines and administer them a year

apart to reduce possible risk, caused an uproar. Co-authors subsequently

repudiated part of the paper, conflict-of-interest allegations emerged, and the

prestigious Lancet, which originally published the study, issued a statement

calling it \'fatally flawed.\'

Wakefield was asked to leave his medical job in Britain and is now doing

research in Austin, Texas.

After the Olympia cases were described to him by UPI in March, Wakefield met

with several of those parents at an autism conference in Portland, Ore. He

also read studies Merck cites as central to the FDA approval of ProQuad.

\'It`s actually heartbreaking, listening to these parents, because you`re

staring into an abyss,\' Wakefield said afterwards. \'You`re listening to

stories which reflect the fundamental misconception of vaccine manufacturers of

what viruses are and what they do. The whole perception of these people is

dangerously naïve.\'

In contrast to the United States, British health authorities have not

recommended chickenpox immunization. But an MMR-chickenpox shot was under

discussion there at one point, and Wakefield said he warned its developers that

putting four live viruses in one shot was a bad idea.<!--page-->

He says the Olympia cases show why.

\'As far as I`m concerned, you are further increasing the likelihood of

persistent infection and delayed disease, which they are never looking for and

therefore they will never find if it does occur, as it did clearly in a

relatively short space of time with some of these children, and it`s never

ascribed

to an adverse reaction to the vaccine.\'

On its Web site, the CDC says such concerns -- and Wakefield`s studies in

particular -- are not based on good science.

\'Current scientific evidence does not support the hypothesis that MMR

vaccine, or any combination of vaccines, causes the development of autism,

including regressive forms of autism,\' the CDC says.

\'The existing studies that suggest a causal relationship between MMR

vaccine and autism have generated media attention. However, these studies have

significant weaknesses and are far outweighed by epidemiological studies ...

that

have consistently failed to show a causal relationship between MMR vaccine

and autism.\'

(_ http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-mmr.htm_

(http://news.monstersandcritics.com/ " http://www.cdc.gov/nip/vacsafe/concerns/aut\

ism/autis

m-mmr.htm/ " ) )

Dr. Jeff Bradstreet, a family practitioner in Florida who treats 3,000

autistic children and has worked with Wakefield, said he believes the risk of

autism rises the earlier and closer together that live-virus vaccines are

administered. He warned the Institute of Medicine in 2004 that it was ignoring

the

possibility that younger children are more vulnerable because their immune and

neurological systems are immature.

\'There`s definitely been an association of kids getting MMR at 12 months

and crashing (becoming autistic),\' Bradstreet said.

He said adding 10 times the standard dose of chickenpox virus, called

varicella-zoster, to the MMR shot and administering it to 1-year-olds is

playing

with fire.

\'We think putting varicella with MMR is just nuts.\'

British researcher Shattock sees another reason to be concerned with

combining the four viruses: He suspects that children who get wild -- or

naturally occurring -- chickenpox too close in time to the MMR shot face a

higher

risk for autism. That scenario parallels the one Olympia parents noticed with

the chickenpox vaccination.

Shattock, director of the Autism Research Unit in the School of Sciences at

the University of Sunderland, said he noticed that autistic British children

whose parents blame the MMR for triggering the disorder had a pattern of

\'undisclosed viral illness\' around the time of the shot.

He studied the records of 100 of those children, compared to 100 children

whose parents did not cite the MMR as the trigger, to see if there was a higher

incidence of chickenpox cases three months before or after the MMR

immunization.

\'Now, there was,\' Shattock said in an interview while attending an autism

conference this month in Washington, D.C. \'It wasn`t statistically

significant at the 95 percent level -- but enough to make you think that if it

was a

huge study, it might be.\'

His concern about adding chickenpox to the MMR shot: \'I`m worried about it

because of the interference of the vaccines, mainly because it depresses the

immune system by yet another mechanism.\'

A Merck scientist discussed that issue at a CDC meeting in 2004, the year

before ProQuad was approved, according to agency minutes. Dr. Florian Schodel

\'confirmed the possibility\' that the chickenpox virus component of ProQuad

was \'causing a local immune suppression and an increase in measles virus

replication. ...

\'The current hypothesis is that the varicella and measles virus are

co-infecting the same or proximate areas of the body and engaging in a specific

interaction, but how that works is as yet unknown.\'

He said the interference appeared to involve only the chickenpox and measles

viruses -- \'there is no such effect for the mumps or rubella vaccines

administered locally at the same time.\'

At the same meeting, Merck`s Dr. Barbara Keller said the amount of

chickenpox virus in ProQuad is \'about a log\' -- or 10 times -- higher than

Merck`s

standalone chickenpox vaccine, Varivax, in order to overcome immune

interference.

Both Wakefield and Shattock said the Olympia families` unusual histories

with chickenpox are worrisome because their children might have inherited

problems coping with the vaccine.

\'There`s no doubt the immune response to viruses is determined by our

genetic constitution,\' Wakefield said. \'It may well be there is a genetically

determined predisposition to abnormal handling of chickenpox virus, at least in

children.

\'This kind of phenomenon has been shown to (play a role in) measles. The

immune response to measles is determined by your genetic profile. It`s

certainly consistent with what is known about the immune response to viruses.\'

ProQuad is likely to be widely adopted by healthcare professionals who

previously administered separate MMR and Varivax shots.

\'Use of licensed combination vaccines, such as (ProQuad), is preferred to

separate injection of their equivalent component vaccines,\' says the new

edition of the CDC`s authoritative \'Pink Book\' on vaccine-preventable

diseases.

\'When used, (the immunization) should be administered on or after the first

birthday, preferably as soon as the child becomes eligible for

vaccination.\'

This series of articles, based on reporting in Olympia in February and

March, tells the families` stories, looks at the scientific controversy and

examines implications for the autism-vaccine debate.

--

Next: \'He has gone backward mentally ... \'

--

E-mail: dolmsted@...