Re: Digest Number 78, 79, & 83, _ Secretin, MMR, and . . .

[Guest guest]

As illustrated by the ongoing discussion and postings, we are all just

beginning to get the " truth " about Secretin. Time however seems to be

pushing toward:

1. I do not hear any sources other than a DANN doctors or Dr. Rimland,

believing there is any high probability of success with Secretin

* * Rather, researchers who have tried it are not pursuing it, and / or

studies are beginning to come out of true " trials " which are very unlikely

to show any significant success with Secretin

2. Discussion of potential dangers continues to increase

* * The dangers of possibly triggering a negative / destructive auto-immune

reaction in the body is becoming of greater concern, a child could collapse

/ die on the table from an " anaphylactoid " reaction - a very high risk, the

risk of unknown viral or " sub " viral organism being transmitted is very

high, pushing multiple " wrong " rather than " right " pathways / hormones,

remains an unknown concern.

* * No parent should be offered a Secretin " transfusion " for their child not

properly IRB approved, or at minimum having been offered and signed an

" informed " consent listing the above risks.

3. And unfortunately, as with the MMR " assumptions, " grains of truth or

hope, continue to deceive this " internet " generation of parents and

children.

IF one backsteps to the direction that " these are children " (please see

posting on website www.neuroimmunedr.com ), then not only does the urgency

of finding an answer increase alarmingly, but then, as it should be, one

must carefully weight risk versus gain, and cannot just " experiment " on a

potentially " devastated " family and child. As I have been discussing, it

has become obvious that many / most of these children must start off

healthy, potentially bright children (just as many parents have believed),

and must be thought of potentially treatable, rather than being born

congenitally damaged or " miswired "

With the conference creating a chance to focus a new level of science,

potential new therapies for these children rapidly (obtain tapes from the

conference as soon as available), comes the right to say, these

children must regarded in an " accelerated " model of a medical crisis, but

should only be " exposed " to agents with a high probability of safety and

efficacy, not " unknown " risks, very low probability of gains.

Unfortunately, while suddenly very possible, IF we are to have any chance of

getting these agents to children in the near future, then we are only going

to achieve that by " focusing " parents and groups frustrations and urgency

into a " constructive " grass roots effort (so far no established group is

helping to lead this direction), not diffuse " in " fighting, many " side "

battles, etc. Example: While certainly the MMR may be a " trigger " in some

of the children, science says very strongly it is unlikely to be the cause

of this dysfunction in any significant number. IF one focuses on the

" trigger " concept and the " autoimmune " pathway, there is NO scientific

article that can dispute that possibility. IF one focuses on the idea of

causation, especially implying active measles virus, this leads to great

scientific debate and arguments, because it is not logical. This makes its

easier to throw up scientific arguments / roadblocks, creating more

" studies " (great for the study centers) but not a focus on solving the

problem, creating a solution now. As has been shown time after time, ONLY

scientifically logical (potentially unproven, but NOT disproven) pathways

are going to remain around. This is why a new " cure " comes every 4 - 5

years - frustrating parents and " cheating " these children. We have one shot

now while many of these current children are still young, we all had better

pick the right route.

While it would be nice to sit back and say " wait and see " (ala Dr. Rimland),

and while I do hope parents will begin holding their leader and researchers

accountable for " theories and hypothesis " they may propose (please note who

were proposing " Gamma Globulin " as the wonder drug a few years ago, now

there are increasing stories of kidney damage, along with the ongoing issues

of unknown " transmissions " ), we are at a " crisis " point. UNLESS we can all

focus logically, scientifically, and on a definable objective pathway and

markers (via ), unless we create an immediate scientific pathway to

understand these children's variables (not one open to ongoing debate and

subjective assessment) so that we can " understand " objectively results, any

dramatic change in therapy remain many years away.

As reflected by the last posting, there is a common denominator affecting

many of these disorders. In stead of focusing on each small piece of

science, there is a chance, looking to the " big picture " to really make a

difference for many children and their families now. Please review the

conference tapes (become involved with " MAT for " ), be exposed to a side

and level of science previously denied you and your children, and then

decide if your children are better served waiting 7 - 10 years (for the

existing research networks to " catch-up " - which is starting to happen) or

can we truly utilize the promise of technology and the internet

appropriately / constructively, and have new trials in place for many of

these children by the new millenium.

With hope for many of your children,

Goldberg, MD

Message: 1

Date: Wed, 23 Jun 1999 10:47:39 EDT

From: Wutsername@...

Subject: Re: Physician Responds to Secretin Study Report

<<Date: Tue, 22 Jun 1999 16:38:58 EDT

From: Kkscharste@...

Subject: Re: Physician Responds to Secretin Study Report

Question for Dr. Layton: Are you also doing GF/DF diet with your patients,

as well as treating them for yeast overgrowth, during your trials of

secretin? And if so, perhaps the positive changes you are seeing are due to

these other therapies. Thank you.>>

I am not Dr. Layton, but I am a parent using secretin to help my autistic

son, and I would like to comment on the question above. My son is GF//DF

and had been for a year prior to his first secretin infusion. Up to that

point the diet had helped him a great deal, but there is NO MISTAKING the

benefits he received from secretin. He took a HUGE leap in

receptive/expressive language, eye contact, appropriate social conduct,

symbolic/imaginative play, the rate at which he learns new things, and his

overall interest in the world around him. He had two infusions and both

brought wonderful results, which he has maintained as is now getting

secretin transdermally. He was not being treated for yeast overgrowth or

anything else at the time he received his infusions.

Kind regards,

Ricci Carole Hedequist

List moderator, secretin-discussionegroups

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Message: 3

Date: 23 Jun 1999 15:22:52 -0000

From: 1raptor@...

Subject: Re: Physician Responds to Secretin Study Report

Hi,

Have there been any long term studies on the

safety of using this long term. Last year when I

was checking into this, I ran across information

questioning whether long term use could trigger an

autoimmune problem against your own secretin like

what happened when non human insulin was used for

diabetes. My son already is having autoimmune

problems, so that was enough to stop me from try-

ing. Also there are questions whether it could be

adding more viral problems, which are already a

problem for my son. Does anyone have any

information on the above.

Cheryl

Message: 5

Date: Wed, 23 Jun 1999 12:07:44 EDT

From: Knightmls@...

Subject: Re: Physician Responds to Secretin Study Report

Hi. The recent conference was all about what you have described. You

might want to get some of the cassettes of the conference, which you can do

by calling 1-800-338-2111. The email address is atltapes@.... I came

away from the conference feeling quite a bit of concern about using

Secretin, but decided to go through with my son's third infusion because we

have just seen so many positive effects from the Secretin. I would love to

hear from others about how the conference material affected your thoughts

and usage of Secretin.

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Message: 6

Date: Wed, 23 Jun 1999 12:29:24 EDT

From: Kkscharste@...

Subject: Re: Physician Responds to Secretin Study Report

Yes--your concerns are valid according to Dr. Layton and Dr. Shaw--at a

conference I attended at which both spoke they cited a case of a patient

becoming an insulin-dependent diabetic due most likely to secretin infusion.

I guess everyone has to decide for themselves whether the risks for their

child are worth the benefits.

FEAT DAILY ONLINE NEWSLETTER Families for Early Autism Treatment

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Heal Thyself - dot - com: Salon Article

Monday, June 28, 1999

http://www.salon1999.com/health/feature/1999/04/13/internet_cures/index.html

[As 'wired' patients go online for medical help, the question is: Can a

little knowledge be a dangerous thing? - by Arthur ] Autism might be

the perfect disease for the computer age-a mysterious disorder characterized

by the obsessive ordering of things and the profound inability to relate to

people. Bill Gates is a bit autistic, the parents of autistics say, half

joking-but the disease is not a joke. To be the parent of an autistic is to

be in love with a child who may not be able to speak or heed your voice, who

may bang his head on the floor until it bleeds if you disturb the arcane

geometry of his toy soldiers. Doctors don't understand autism and can't cure

it. But the parents of autistics are a disproportionately wired bunch, and

they grasp for threads-of which there are many on the Web. Every few years,

a new miracle cure comes down the pike, then bombs out. The latest hope, or

hype, is something called secretin, a hormone derived from pig intestines

whose therapeutic workings are as mysterious as autism itself.

Beck, a New Hampshire housewife with a background in the mail-order

business, stumbled onto the substance when she took her autistic son to a

clinic in April 1996 to have problems in his digestive tract checked out.

The FDA approved secretin two decades ago as a diagnostic tool for

gastrointestinal problems-it's dripped into the vein to test pancreatic

function. But 3-year-old Beck got an entirely different benefit from

it. Young , who had communicated mostly by grunting, began to speak

several days after he got his first secretin infusion, and his autism

symptoms have steadily improved since then, says his mother. Other doctors

reported similarly encouraging responses, and the news began to flash

through the autism lists like wildfire. By March, an estimated 2,500

autistic children had been infused with secretin.

Nutritional and medical crazes are timeless. But the secretin phenomenon

highlights something new: the Internet-driven research priority. In the

1970s, the word-of-mouth spread of laetrile, a bogus cancer remedy made from

apricot pits, led thousands of people to squander their lives and fortunes

in the hazy clinics of Tijuana. Today, there's a new laetrile practically

every week, and an entire wing of the NIH is being funded to study

" nutroceuticals, " alternative medical treatments marketed as nutritional

supplements to evade FDA scrutiny-saw palmetto (for enlarged prostates) and

ginkgo (for memory repair) being two recent examples. " We researchers are

backing and filling, " says Dr. C. Shelton, a Vanderbilt University

psychiatry professor who is leading a multi-center study of St. swort,

the herbal depression cure. " We've got patients on these treatments-we need

to know, do they work or not? Our studies are consumer-driven, and it's the

ready availability of information on the Internet that is putting them into

consumers' hands. "

In November, the NIH authorized five trials around the country for secretin.

The FDA, under pressure from Congress, nudged a Silver Spring, Md.,

researcher named Purich to include autistic patients in accelerated

trials of a synthetic secretin compound that Purich had developed purely as

a diagnostic tool. While many seasoned autism researchers shook their heads

in disbelief, the federal authorities maintained-credibly-that they had no

choice. Desperate parents are paying up to $15,000 a vial for the dwindling

supplies of pig secretin. Some have mortgaged their houses, or taken their

kids to those same Tijuana clinics or wherever else there was a doc who

claimed to have a dose of secretin.

" Having been in the field for 25 years, I know that every three to four

years, people come up with a cure for autism that isn't a cure, " says Dr.

Marie Bristol-Power, who's in charge of autism research at the NIH. But

" right now there are literally thousands of people who've been infused with

this drug, " she says. " If this is promising we want to follow up. On the

other hand, if it doesn't stand up in clinical trials, we want to get that

information out, because people are exposing themselves to danger. " In other

words, determined individuals have harnessed the Internet to turn the

traditional pyramid of the American medical establishment on its head. Of

course, research priorities are often politically influenced. But in the

case of secretin, the agenda has been set almost single-handedly by Bernard

Rimland, who heads an autism institute in San Diego. In the 1960s, Rimland

challenged the " refrigerator mother " theory of Bruno Bettelheim, who argued

that autism was a psychiatric disorder caused by unloving mothers. A gadfly

who was not an M.D., Rimland eventually prevailed. By now, thanks in part to

the concentrated punch of patients linked by the Internet, Rimland has

become a gadfly with muscle. He has data banks and patient lists and can use

them to set research agendas. Rimland is feared by specialists, who admire

his advocacy work but also point out that secretin is not the first unproven

therapy or theory he has pushed. In addition, while no one is questioning

their dedication to finding a cure, both Beck and Rimland have a vested

interest in secretin. The two jointly filed a patent for the use of secretin

in autism, and when readers click secretin on the Web site of Rimland's

institute, they get an order form for Beck's book, " Unlocking the Secrets of

Secretin. "

For the pathologically skeptical-to borrow Rimland's phrase for his secretin

critics-it is tempting to see secretin as emblematic of Internet-facilitated

snake oil, of which there is no shortage. On Nov. 10, the FTC led a

consortium of consumer protection groups around the world in a surf for

quacks-and found 1,200 sites offering bogus elixirs, herbal remedies and

crankish mechanical devices to the desperate and gullible. According to a

recent Louis poll, something in the neighborhood of 60 million

Americans have gone on the Web to get health information. At a time when

managed care gives doctors little time for patients in the flesh, plenty of

online docs are dispensing free advice in the disembodied privacy of the

chat room. Which is terrific when the advice is good and frightening when

the advice is biased, poorly informed or part of somebody's plan to make a

quick buck or push an agenda.

A recent example is the growing rebellion of servicemen and women leery of

the anthrax vaccine. This movement is a chimera of anti-government sentiment

and homeopathic gibberish, germinated in virtual rooms where metaphysical

nurses from Santa , Calif., consult with Marines convinced that

President Clinton is poking them with anthrax for sport. The

anti-vaccinationists are claiming that experimental anthrax vaccines caused

Gulf War illness. This is the kind of medical claim that is almost

impossible to confirm. Congress has held some hearings on the subject; more

are scheduled for later this month. For better and for worse, " the Internet

is empowering patients with information, " says Beck, who,

coincidentally, believes a measles-mumps-rubella vaccine triggered her son's

autism. " Through the Internet you meet up with other parents who have the

same story and you feel a certain strength in numbers. " That is precisely

what disturbs traditional doctors. " An epidemic of misinformation, " bemoans

the British Medical Journal; " not too little information but too much, vast

chunks of it incomplete, misleading or inaccurate, " complains the Journal of

the American Medical Association. Tom Ferguson, an expert on online health

experts who lectures frequently to medical doctors, finds them worried by

the speculative material their patients dredge up on the Web. But of course

that's the paternalistic view, and it's partly a defensive one. " A primary

care doctor has to keep up with 700 to 800 conditions, " says Ferguson, who

edits the Newsletter of Consumer Health Informatics and Online Health. " You

the patient need to find out about only one. And if you know what you're

doing, you can spend 25 or 30 hours online and become as knowledgeable about

that one condition as your doctor. " Spend enough time talking to people with

chronic or rare conditions and you realize that however strange the Web,

it's often the only place for them to go. And the front-line physicians who

deal with this population learn to live with the Web as an unbidden

consultant. " I see it as a blessing from God, " says Dr. Yuval Shafrir, a

pediatric neurologist at town University. " Sometimes I see a patient

with a very rare disease, a disease that in a textbook has maybe three lines

written about it. But you go on the Internet and some mother in California

has a support group and Web page. "

When the secretin wave swept in, it literally swamped Shafrir, causing his

e-mail box at town to overflow with mail and leading the system

administrator to cut off his account. The speculation was that secretin

somehow bound itself to brain receptors the way Prozac and other

anti-depressants do. Shafrir was skeptical-but sympathetic to parents who

wanted to try it. " Living with an autistic child is one of the most

difficult challenges anybody can face in life, " he says. He has infused

about 15 children with secretin. Only two seemed to get better, but the

others " at least can be satisfied that they tried. "

" My best guess is that when the dust settles, the percentage of patients who

improve will be well over 70 percent, " says Rimland. The extent to which his

anecdotes of secretin success will turn out to be placebo effect will be

known when the first double-blind clinical trials are completed later this

spring. There is as yet no science to secretin. But then again, nobody knows

how aspirin works.

" I think it's sad that everybody's so desperate that they'll inject this

completely unknown substance into their children right away, " says

London, a New Jersey psychiatrist who in 1994 founded a group, the National

Association for Autism Research, that in some ways rivals Rimland's. " I

wouldn't put it in my kid. " (London has an autistic 12-year-old). But

Rimland scoffs at his critics- " I pity them, " he says. And he issues a

challenge: " Physicians are increasingly being compelled to do their homework

if they want to avoid being embarrassed by not knowing up-to-the-minute

information provided by their Internet-savvy patients. " Who will ultimately

be the most embarrassed by secretin, of course, remains to be seen. But it

won't be the last cure to arise on the Internet.

Message: 3

Date: Thu, 24 Jun 1999 12:46:26 -0700

From: " FEAT " <feat@...>

Subject: Pro & Con Research on MMR, Autism Connection Compared

FEAT DAILY ONLINE NEWSLETTER Families for Early Autism Treatment

http://www.feat.org M.I.N.D.: http://neuroscience.ucdavis.edu/mind

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" Healing Autism: No Finer a Cause on the Planet "

____________________________________________________________

Pro & Con Research on MMR, Autism Connection Compared

Thursday, June 24, 1999

[Thanks again to Ray Gallup who explains that " Dr. Yazbak is one of

our collaborating physicians of the Autism Autoimmunity Project. " ]

" Same Place, Worlds Apart "

The publications of Dr. Wakefield in March 98 and of Dr. Brent

in June 99 share only two important features, they both originated

from The Royal Free Hospital in London, and they both appeared in Lancet.

Wakefield did his first colonoscopy on an autistic child, because the

anguished mother begged him to find the reason why her son had such terrible

gastro-intestinal problems. When he found some very specific pathology, Dr.

Wakefield proceeded to investigate several more autistic children,

identifying and documenting, again and again, the same very unusual

findings.

A particular aspect of the history intrigued Dr. Wakefield. Many

parents adamantly stated that their children's autistic symptoms appeared

shortly after they received the MMR vaccine. One ten year old boy's story

was probably the most striking This child was fine, and absolutely normal in

every respect, as per his doctor, parents, and teachers. Shortly after he

received the MMR vaccine, he started exhibiting symptoms of autistic

behavior, and within three months, he was severely damaged.

Dr. Wakefield, in his very professionally written article, described

each case carefully, history, blood work, colonoscopy findings, and

histo-pathological reports, etc. He went on to review the work of several

distinguished researchers in different fields, who were also looking at the

causes of Autism, and had developed tests, or suggested therapies.

Dr. Wakefield had no choice but to mention that many parents reported

some temporal relationship between the MMR vaccine administration, and the

onset of their children's autistic symptoms.

As an ethical researcher he could not in all conscience, " bury " such a

frequently reported association, and he urged other disciplines to study the

problem.

Although full of medical terms, Dr. Wakefield's paper was clear, and

easy to understand, even by a lay person. Findings were factual, and all

conclusions were justified, logical, and fully supported by the evidence

presented.

The immediate result of Dr.Wakefield's paper was a vitriolic attack

from every front. A flood of opposing articles appeared in the same issue

of Lancet, and systematic criticism, nearing persecution, of this decent

researcher began, and is still going on.

Distraught parents of affected children have become even more

confused, because no one has been able to prove conclusively to them yet,

that an MMR vaccine-Autism connection does not really exist. There have

been no safety follow-up studies looking beyond four weeks post vaccination,

and many studies quoted, have been partially funded by vaccine

manufacturers, with obvious commercial interests.

Indeed, no serious researcher has looked at a large sample, three to

nine months post MMR vaccination, when auto-immune diseases usually would

occur.

When some parents in England became vocal, the pro-vaccine authorities

in the UK reacted forcefully, to protect their MMR vaccination program. The

single measles, mumps and rubella vaccines effectively became unavailable,

and every effort was made to prove Dr. Wakefield wrong.

The Medicines Control Agency and The Public Health Laboratory Service

supported a study, to be carried out by the Department of Community Child

Health Royal Free, Dr. Wakefield's own institution, and University College

Medical School, London.

Again, it is important to repeat here, that Dr. Wakefield never said

there was a causal relationship between the MMR vaccine and autism.

The just published study by et al was hailed by everyone as the

definitive work on the subject, .......but is it?.

I personally believe it has raised more questions than it has

answered.

Dr. 's paper seems difficult to read and understand. The

summary findings are confusing, and the whole report is full of statistics,

symbols and figures, clearly for the purpose of proving that the conclusions

are unquestionably true.

Case series analysis is a very weak statistical approach, and can only

reliably suggest or refute relationships in very large samples. The samples

in this case are small. The methodology used is therefore of marginal

quality, and the authors readily acknowledge its limitations.

Dr. and associates also present some data as graphs, without

text support. This makes it impossible for the reader to check said graph

data for accuracy, and tends to disguise the very small sample size used.

It is customary that study results are written as a text, and then, a

chart or a graph can be added, to emphasize a point.

The authors report numbers clearly indicating a massive and persistent

increase in autism over the years. They then do not offer any sensible

cause for that increase to negate an MMR connection, and choose to conclude

simply that their study fails to prove any causal relationship.

Elsewhere, Dr. and associates, state that the age of diagnosis

was the same before and after the introduction of the MMR vaccine, and then

go on to deduct, that this is proof that the MMR vaccine therefore does not

have a causative role, a conclusion I have difficulty with.

On page 6, Dr. states in his discussion, in the last paragraph,

that " There is uncertainty about whether the prevalence of autism is

increasing " . This totally contradicts all what he reported through the

article, and particularly the statement which immediately followed, " Our

study is consistent with an increase in autism in recent birth cohorts. " It

also contradicts the most impressive California report to the legislature.

and my own, Autism 99, A National Emergency, in which I have clearly

demonstrated a four to seven fold increase in the incidence of Autism in the

last seven years.

On page 7, third paragraph, Dr. states: " For age at first

parental concern, no significant temporal clustering was seen for cases of

core autism and atypical autism, with the exception of a single interval

within six months of MMR vaccine associated with a peak in reported age of

parental concern at 18 months. " In the next paragraph, Dr. states, "

Our results do not support the hypothesis that MMR vaccination is causally

related to autism " . I am personally unable to understand how he can make

such a deduction after he himself reported a peak.

But by far, the most serious problem I have with this study, is the

case selection, ie the very data on which the paper is based.

The MMR vaccination was started in the UK in 1988. The vaccine was

originally administered around age fifteen months to avoid its

neutralization by maternal antibodies. ( Lately, this has been changed to

twelve months of age.) By selecting children born " after 1987 " , Dr.

does not include in the post- MMR series, all children born in 1986 and

1987, who reached the age of 15 months in 1988, and received the vaccine at

some time that year or later. Also not included were the 2, 3 and 4 year

old children, whose parents had not immunized pre 88, and who received the

MMR vaccine when it became available, or when the requirement was enforced.

Finally, also excluded from the sample were many children who had received

one of the single vaccines (Measles, Mumps or Rubella) from 1983 on, and who

were given a booster of MMR in 88 or later. By excluding ALL these

children, Dr. not only removes them from the after 1988 group, but

indeed adds them to the pre-1988 statistics. I believe this flaw alone may

compromise the whole study.

In the first paragraph, Dr. and associates state that " we

undertook the study to investigate whether the MMR vaccine may be causally

associated with autism " . It rather seems to me that this study was

undertaken to prove that there was no causal association between the two.

Similarly, Dr. states in the last paragraph that his results " will

reassure parents and others, who have been concerned about the possibility

that the MMR vaccine is likely to cause Autism, and that they will help

restore confidence in MMR vaccine " . To my knowledge no one has ever said

that the MMR vaccine is " likely " to cause autism. Concerned parents have

only requested that independent researchers investigate why certain somehow

predisposed children exhibit autistic symptoms shortly after they receive

the MMR vaccine. It also seems unlikely to me, that Dr. 's work has

helped restore the confidence of those parents in this vaccine.

It may soon be apparent that in spite of all the publicity that

surrounded the publication of this study, it somehow " has missed the mark " .

I do not believe Dr. and associates have significantly changed

the picture.

The following facts remain,

7 The incidence of Autism has increased significantly in the last

decade.

7 There is every reason to believe that this trend will continue.

7 No one has proved that MMR vaccine plays a role in autism.

7 No one has proved conclusively that it does not.

7 Serious studies by independent researchers are desperately needed,

to look into all aspects of this dreadful disease.

F Yazbak, MD, FAAP

NOTE, The above comments reflect my own views, and not the views or

the positions of any of the organizations to which I belong.

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Message: 9

Date: 28 Jun 1999 03:23:07 -0000

From: parent@...

Subject: Hi, I'm new

Hello,

I just joined the list and have been eagerly working

my way through the archives.I have rheumatoid arthritis

and MS. My oldest son (age15)has Aspergers, epilepsy, ADHD and

learning disabilities. My second son (age14) has

Down syndrome and a severe heat intolerance. My

daughter is now ill with what looks like chronic

fatigue and/or orthostatic intolerance. At the same

time she became ill, she developed a severe

allergy to milk.I've searched for research on possible

connections to all this and I'm looking forward to

sharing and learning with others on the list.

Marie

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Message: 10

Date: Mon, 28 Jun 1999 01:49:58 PDT

From: josiane herben <josianeherben@...>

Subject: Re: Hi, I'm new

>From: parent@...

>Reply-onelist

>onelist

>Subject: Hi, I'm new

>Date: 28 Jun 1999 03:23:07 -0000

>

>From: parent@...

>

>Hello,

>I just joined the list and have been eagerly working

>my way through the archives.I have rheumatoid arthritis

>and MS. My oldest son (age15)has Aspergers, epilepsy, ADHD and

>learning disabilities. My second son (age14) has

>Down syndrome and a severe heat intolerance. My

>daughter is now ill with what looks like chronic

>fatigue and/or orthostatic intolerance. At the same

> time she became ill, she developed a severe

>allergy to milk.I've searched for research on possible

>connections to all this and I'm looking forward to

> sharing and learning with others on the list.

>Marie

hello Marie,

I am Josiane. I'm rather new on the list myself, so I don't feel I'm the

right person to say " welcome " to you ! I just wanted to tell you that I

really found some useful information on the list and I do hope you will find

it too. I wish you a lot of strength and courage in all the problems you

are facing. We are parents of a three year old girl, mentally disabled and

autistic. The future doesn't look bright for her, but we will never stop

fighting. Greetings, Josiane