September 30, 2005

100 plus kids will kill themselves on Strattera

(UPDATE: Commenter noted that dear husband added a zero. Math fixed. Wife will pay closer attention next time.)

It also looks like the article was poorly written and suggested that the total number of participants (including placebo) was 1357, while another source said that the number of those receiving the drug was 1357. So I will correct later when I have time.)

When I got home today, my husband had printed this article out and written his notes on it for me. Here were his observations using the numbers in the article:

1357 test subjects
851 given placebo - none with suicidal ideation (SI)
506 given Strattera - 5 with SI - this equals 1% of the group.

3.4 million patients on the drug
75% are children
2.55 million children on Strattera

1% of 2.55 million = 2,550 children will have suicidal ideation because of the drug.

"There are 2,400 adolescents thinking about suicide for every one that commits suicide"

This means 100 or so kids will successfully kill themselves because of Strattera.

FDA Warns About ADHD Drug Strattera
By JOHN J. LUMPKIN,
Associated Press Writer Thu Sep 29, 8:33 PM ET

WASHINGTON - The Food and Drug Administration warned doctors Thursday about reports of suicidal thinking in some children and adolescents who are taking Strattera, a drug used to treat attention deficit hyperactivity disorder.

Manufacturer Eli Lilly & Co. announced that a black-box warning will be added to the drug's label in the United States. Such a warning is the most serious that can be added to a medication's label, and similar warnings will be added to the drug's labels in other countries. The company said a study showed instances of suicidal
thinking were rare.

In a statement, the FDA said it "is advising health care providers and caregivers that children and adolescents being treated with Strattera should be closely monitored for clinical worsening, as well as agitation, irritability, suicidal thinking or behaviors, and unusual changes in behavior, especially during the initial few months of therapy or when the dose is changed."

Eli Lilly said it provided the FDA results from Strattera clinical trials of 1,357 patients that found five youths taking the medication reported having suicidal thoughts, while none of 851 patients taking a placebo reported having any. One young person taking Strattera attempted suicide, but survived, company and FDA officials said.

There was no evidence of increased suicidal thoughts in adults taking Strattera, which also goes by the generic name atomoxetine, the Indianapolis-based company said.

"The
actual risk is very low," said Dr. Thomas Laughren, head of the FDA's psychiatric drug unit. Despite the warning, he said, "FDA still views Strattera as an effective drug."

At the FDA's request, Eli Lilly will publish a guide for doctors and pharmacists to give to people who are prescribed Strattera.

The warning is the result of a larger FDA review of psychiatric drugs and their possible association with suicide, the agency said. Old drug studies are being reviewed for occurrences of suicides and suicidal thoughts. Last year, the FDA ordered warnings on all antidepressants that they "increase the risk of suicidal thinking and behavior" in children who take them.

Strattera won praise from some doctors and parents when it became available because, unlike Ritalin, it is not a stimulant, a class of drug that can be addictive. But its chemical makeup is similar to certain antidepressants.

A review of other ADHD drugs is continuing, Laughren said.

About 3.4 million patients — adults and children — have been prescribed Strattera since it became available, with Lilly officials saying about 75 percent of those taking the medication are children.

Dr. Harold Koplewisz, a professor of child and adolescent psychiatry at the New York
University School of Medicine, said that 19 percent of all teenagers have
suicidal thoughts, making "suicidal thoughts in adolescents part of the normal
experience."

"There are 2,400 adolescents thinking about suicide for every one that commits suicide," he said in an e-mail. "We are talking about a medication that may make some children and teenagers uncomfortable, which is very different than a lethal situation like a gun in a house."

Still, he said, all children and teens taking psychiatric medication should be monitored.

Attention deficit hyperactivity disorder affects as many as 7 percent of school-aged children and 4 percent of adults in the United States.

Strattera's worldwide sales have dropped lately, falling 31 percent to $123.5 million during this year's second quarter from a year earlier.

Lilly warned doctors in December to stop using Strattera in patients with jaundice or who show signs of liver problems, and it placed a warning on the label and in prescribing information after at least two patients on the medication developed liver problems.

The company said Thursday it believes the drug is safe.

"While suicidal thinking was uncommon in patients on the medication during clinical trials, it is important for parents to be aware it can occur, and to discuss any unusual symptoms with a physician, " said Alan Breier, Lilly's chief medical officer, in a statement. "Lilly continues to view Strattera as a safe and effective treatment option, and those doing well on the medication should be able to continue their treatment with confidence."

The Age of Autism: Regression

The Age of Autism: Regression
By Dan Olmsted, UPI Senior Editor

Regression, regression, regression.

That's the theme of much of the e-mail this column has received, sparked by two recent installments. The first reported confirmation by a University of Washington study that parents are right when they say they have watched their children lose language and social skills and become autistic. The study reviewed first-birthday videos, which documented that regression had come afterward.

The other article reviewed 83 reports filed during the 1990s in which doctors or parents suspected a link between vaccinations and the onset of autism.

Monday's column featured a parent who filed such a report -- to the federal Vaccine Adverse Event Reporting System -- in 1996. That was well before a possible link became a matter of public debate later in the decade.

In 1998 a British doctor published a study that suggested a possible link between the MMR -- measles, mumps, rubella -- vaccine and autism. The next year the Centers for Disease Control and Prevention and the American Academy of Pediatrics urged that a mercury-based preservative called thimerosal be phased out of childhood vaccines as soon as possible.

Health authorities -- including the CDC and AAP -- dismiss any link between vaccines and autism. Some as-yet-unidentified environmental factor might play a role, they say, but vaccines are not that factor.

Here are some e-mail comments by parents to Age of Autism. Two of the correspondents agreed to be identified by name.

The cases sound so familiar to my granddaughter's. On Jan. 20, 1997, my granddaughter received a DPT-Hib shot (diphtheria-pertussis-tetanus and haemophilus influenzae type B); her leg swelled and got very red for about five hours and she cried a high pitch scream. Would not sleep.

My grandchild's skills started to disappear and then she started having seizures. She was diagnosed with autism. Now at the age of 9 she does not talk; has seizures; every day she wears diapers, cannot feed herself. I know it was the shot because everything changed about her as soon as the shot was given.

She was put on the Vaccine Adverse Event Reporting System not long after she was damaged.

After I read that column (about first-birthday videos documenting subsequent regression), I got the courage to view one of my family's home videos, taken on Easter in 2002 when my sons were 1 and 4.

While I knew that my son Matthew had regressed (he had lost about 50 words so that was hard to miss), I wasn't certain about other developmental milestones -- after all, I wasn't looking for autism. I have listened to and read the work of many experts who state that autism is present from birth and that parents probably miss the earlier signs.

So, I just wasn't sure. Had Matthew once had normal eye contact? Normal engagement? Had he answered to his name? Had he pointed to show us things, brought us things? Had he done all those normal things or had the absence been subtle and I hadn't noticed?

What I saw on the video, Easter 2002, when Matthew is 16 months old, simply stunned me. In the 20-minute tape he does all the developmental milestones listed above, as well as more.

What I saw was a completely normal toddler, joyfully opening his Easter basket with his older brother, fully engaged with what was going on around him. He answers questions, brings my husband things from his basket, points to show us something, responds to his name -- and is alive, aware and happy in a different way than he is now.

Honestly, I cried hysterically while viewing the video, and when I called my husband he thought someone must have gotten in a car accident.

I think my husband was equally surprised at all of the normal development Matthew displayed on the video. Time really plays with your memory and the last couple of years have been a blur to us. Although my husband was not nearly as emotional as myself(!), he did and does feel anger.

My older son Jay, who just turned 8, also viewed the video. His viewing was punctuated with such comments as "Wow, did you see Matthew do that?" and "Wow, you only had to say Matthew's name ONCE and he turned" (unlike now where we must say it several times to gain attention).

As you can imagine, Jay is wise beyond his years and turned to me after and said, "Have you figured out what happened to Matthew or are you still working on it?"

Knowing Matthew was so normal up to that point leaves me feeling a huge "what if." I am more determined than ever to do everything in my power to restore my son back to the child he was meant to be.
- Jeannie Meijer, Acton, Mass.

Our daughter was born in August 1995. I may have my dates off ... but she was given the MMR in or around Oct 1996. She was progressing nicely in language skills at that time. A few weeks after the shot, we traveled from New Jersey to Florida on vacation. While there, she got sick, a cold, and was given an antibiotic.

Not being attuned to autism, we didn't immediately focus on the reversal of her language skills, and the sudden temperamental behavior from what had been an easygoing girl. Eventually, she was diagnosed with a language deficit and was diagnosed as autistic. With some wonderful work at the JFK You and Me Program in Edison, N.J., she is now an almost completely normal fifth grader, in a mainstream school, without an aide.

When we got the diagnosis of autism for our daughter, we were in the seventh month of pregnancy for our third child. We immediately read everything we could find. By 1999, the vaccination/MMR story was out there, and we presented it to our pediatrician. He agreed to postpone the immunizations as long as possible, and then give them one at a time.

One theory was that after the mumps, measles and rubella shots were lumped into one (MMR), the observed rate of autistic children rose dramatically. Too much vaccination, often given to a too small child. Our son might have been approaching 50 pounds when he got the first shot ... as we faced the medical requirements of entering preschool ... it didn't work. He was diagnosed at 4, although he had better communication skills than our daughter did at that age.

Even today, it is apparent that the nature of his issues are different than those that affected my daughter.

I, too, am a parent who is convinced my child was adversely affected by the MMR vaccine. Over the years he slowly regressed into a high-functioning form of autism.

We took him to a DAN (Defeat Autism Now!) doctor some months ago and he was found to have no significant levels of any toxic metals, but his immune system was totally out of kilter.

He showed no immunity at all to measles (despite two MMR injections) combined with an ultra-high immunity to rubella. In addition he had score of 24 on the myelin basic protein autoantibodies test when the norm is under 5. This indicates his autoimmune system is attacking the myelin shield in the brain. We are now considering ways to treat this.

I have taken a little time to research vaccinations on the Internet and found some fascinating information. Israel is a medically advanced country where the life expectancy is in fact higher than in the U.S., while cases of autism occurring there are considerably lower.

What I learned is that in Israel, which has an extensive vaccination program, they do not give them MMR. Rather they vaccinate young children for measles only and vaccinate them for mumps and rubella only when they are older. Their reasoning seems to be that since mumps and rubella are not known to occur in very young children, why vaccinate them for something they cannot catch?

This makes a great deal of sense to me in that if you are vaccinating children for a disease to which by nature they are not susceptible, this could indeed harm the autoimmune system.
- Harry Eisenberg, Glen Rock, N.J.

My son, now 14, was harmed by thimerosal. I would be happy to provide all of his medical records, my own medical records from labor and delivery onward ... anything to help this cause.

I also can show documentation by video of the days after the vaccination that sent his world into darkness. It is eerie to know how and when it happened. Heartbreaking.

At 14 my son understands that he has autism and why. He is livid with the "people who did this to him." Every day he says he wants to go to the hospital to get the shot to get rid of autism. Every day.

September 29, 2005

Risks of Hep B Vaccine

I am not a fan of the Hep B vaccine. Chandler had two major adverse reactions to it. The 'birth dose' at two weeks left him with three months of 'colic' and fevers and years of bowel problems, and his dose at 18 months left him speechless. This was all the more sad for me when I found out that Chandler is not even at risk for hepatitis B as he is neither an IV Drug User nor sexually promiscuous. Here is a press release from Europe this week:

MULTIPLE SCLEROSIS RISK TO BRITISH BABIES HEALTH
27 September 2005.
NEWS RELEASE

Multiple Sclerosis Risk to British Babies

- Newly Revealed By Previously Concealed Evidence

London, England & Versailles, France [27] September 2005/Romeike/ Strong scientific evidence confirms British infants will be exposed to an unacceptably high risk of complications, including multiple sclerosis, if the British Medical Association's (BMA's) recent universal infant hepatitis B vaccine recommendation goes ahead. Whilst other evidence is embargoed, Dr. Marc Girard, a specialist in the side effects of drugs and commissioned as a medical expert by French courts, has been able to publish a scientific review of the unembargoed evidence of the vaccine's hazards (Autoimmun Rev 2005; 4:96-100). Dr Girard shows that French health authorities suppress studies demonstrating serious risks. France was the first country to implementuniversal hepatitis B vaccination in 1994.

Legal and ethical concerns also arise over the BMA's recommendation because those at high risk from the hepatitis B virus are not infants but promiscuous adults engaging in unsafe sex and intravenous drug abusers. There is no clear individual clinical benefit of universal hepatitis B vaccination. The duration of any protective effect is uncertain whereas the vaccination carries with it risks of numerous chronic auto-immune disorders, including Guillain-Barre syndrome, lupus, rheumatism, blood disorders and chronic fatigue. In contrast, the BMA's 10th May 2005 press release stated children were at risk of hepatitis B infection from:

* biting and shared toys

* shared toothbrushes and razors

* mother to child transmission during birth

Dr Girard said:

"The BMA's recommendation is a surprising and unexpected change of heart given the scathing public scepticism in the British Medical Journal in 1996 to a pharmaceutical company promotion advocating universal infant hepatitis B vaccination (BMJ 1996; 313: 825). It is all the more surprising because whilst the risk factors for babies have changed little, there is now impressive evidence that for a preventive measure, hepatitis B vaccine is remarkable for the frequency, variety and severity of complications from its use. The toxicity of this vaccine is so unusual that, even if crucial data are regrettably concealed or covered by Court order, scientific evidence is already far higher than normally needed to justify severe restrictive measures."

In addition, just days ago (20 Sept, 2005) the European Medicines Agency EMEA) announced the withdrawal of hepatitis B containing Hexavac vaccine, claiming concerns over efficacy. Hexavac had 4 months earlier been associated with sudden infant deaths (Zinka et al. Vaccine 2005 May 18). Hexavac combines hepatitis B vaccine virus with other routine vaccine components. The EMEA's reasons for withdrawal are questionable. Efficacy trials are normally performed before vaccines are licensed.

Other research supporting Dr Girard's findings includes research on UK data showing a 3.1 increase in the relative risk of multiple sclerosis after hepatitis B vaccination (Neurology 2004; 63:838-42).

Clifford Miller, British lawyer, graduate physicist, co-author of a recent peer reviewed critique of flawed medical evidential practice and former university lecturer said:-

"British Doctors administering hepatitis B vaccine to infants could face criminal prosecution if fully informed consent is not obtained.Civil prosecution for damages is possible over 21 years later if the injured survive as adults."

"English and European law requires the application of the precautionary principle. With such strong scientific evidence of harm it is unclear why the BMA's recommendation was made, nor why universal infant hepatitis B vaccination is reportedly being considered by the UK Joint Committee on Vaccination and Immunisation."

"This is not the first time the BMA has executed a spectacular `U' turn. Up to 1987 they consistently recommended against mumps vaccination. In 1988 that conflicted with new government policy and the objection was quietly dropped. The BMA's links with the pharmaceutical industry are also a concern. The next government proposal in the pipeline is to vaccinate against chickenpox, the mildest known of all routine childhood diseases and for which the UK Department of Health has ready prepared stories claiming it is a killer."

"The British public should be concerned their children's safety rests with independent researchers from overseas who can face harassment, obstruction and official vilification for their work."

In his new paper now in press and available on line (Med Hypotheses, doi 10.1016/j.mehy.2005.08.012), Dr Girard and co-author Y. Comenge review the various mechanisms likely to account for the biological plausibility of auto-immune disorders such as demyelinating diseases and other hazards of this vaccine.

Because of the significance and scope of these observations and related cross- correlations, Dr. Girard suggests that even in high-endemic countries, the risk/benefit ratio of this unusually toxic vaccine must be carefully re-assessed. Regarding the health situation in the UK, the conclusion not to vaccinate is obvious.

INFORMATION FOR EDITORS:

About Dr Marc Girard:-

Pharmaceutical Industry Consultant: Glaxo, Aventis & others

Court Appointed Expert: Includes Bayer/Baycol cholesterol drug litigation

Medical Doctor: Qualified 1983, trained: Hopital des Enfants Malades,

Paris, France

Masters in Mathematics 1976: Universite d'Orsay, Paris, France

References Used in Press Release:-

"Multiple sclerosis and hepatitis B vaccination: Adding the credibility of molecular biology to an unusual level of clinical and epidemiological evidence" Comenge Y; Girard M (Med Hypotheses, doi 10.1016/j.mehy.2005.08.012)

(Text available in electronic form on request.)

"Autoimmune hazards of hepatitis B vaccine" Girard M (Autoimmun Rev 2005; 4:96-100)

(Text available in electronic form on request.)

"BMA calls for universal childhood vaccination against hepatitis B" Press Release (10 May 2005):

http://tinyurl.com/7ca6j

"Medicine and the media: Shire Hall Communications and the case for hepatitis B immunisation" BMJ 1996;313:825 (28 September 1996) :http://bmj.bmjjournals.com/cgi/content/full/313/7060/825

"European Medicines Agency recommends suspension of Hexavac" Press Release - 20th September 2005

http://www.emea.eu.int/pdfs/human/press/pr/29736905en.pdf

"Unexplained cases of sudden infant death shortly after hexavalent vaccination." Zinka B, Rauch E,

Buettner A, Rueff F, Penning R. - Vaccine. 2005 May 18;

http://tinyurl.com/drm8g

"Recombinant hepatitis B vaccine and the risk of multiple sclerosis - A prospective study" Hernan MA, Jick SS, Olek MJ, Jick H(Neurology 2004; 63:838-42).

"Flawed Evidence Denies Drug Victims Justice" - Press Release, Romeike/PA

http://tinyurl.com/adk38

"On Evidence, Medical and Legal" Dr D W Miller, Clifford Miller: - 10; 03- 70. J AmPhys Surg -

http://www.jpands.org/vol10no3/miller.pdf

========== Contact information

Dr. Marc Girard
Address: 1 bd de la Republique 78000-Versailles (France)
Mobile phone: 00 33 6 82 94 54 62
E-Mail: agosgirard@free.fr
Telephone: 00 331 39670110
Fax : 00 331 396700111

Mr. Clifford G. Miller
Address: Burnhill Business Centre,
50 Burnhill Road,
Beckenham,
Kent BR3 3LA (UK)
Mobile: 00 44 7941-976021
E-Mail: mediapr@cliffordmiller.com
Telephone: 00 44 208 663 0044
Fax: 00 44 208 663 0011

Another Success Story

Patrick Sullivan Jr. has a wonderful story on Pat Sr's blog. It is by a chelating dad about the day his "autistic" son became indistinguishable from his older brother's entire flag football team after only 3.5 months of chelation.

This is the message that this Dad wants to pass onto others:

For the parents out there that are reading this and considering chelation therapy for their "autistic" child and are trying to decide whether it is worth it, let me just say this. Do not listen to the people that tell you that this is BS and that the parents doing this are stupid. Remember one thing. The vast majority of these people telling you NOT to do it HAVE NO EXPERIENCE WITH IT! Instead, listen to the thousands of parents that are doing it now. They do not lie. Get several opinions. Listen to the other parents that are not doing it also and compare the results of the two sets of children. That is why I decided to proceed with this treatment. Out of the dozens of parents of "autistic" children that I spoke to before I started my son's treatment, all of the ones that were seeing drastic improvements in their children had one thing in common.... Chelation Therapy.


UPDATE: Clarification and Update from his dad:

Scott Shoemaker (Joshua's Father) said...
"Hi Ginger, thanks for helping to get the message out. There is one thing I would like to correct, though. My son WAS distinguishable from the other kids on the team. You have to remember he was 2-4 years younger than the other kids. The amazing thing was that the coaches could not tell there was anything wrong with him. He just came across as a typical 3 year old trying to fit in with kids that were much older than he was, when prior to chelation he would have just watched them from the sidelines jumping up and down flapping his hands and spinning if he watched them at all.

Also, it was a month and a half since I posted that story, and we are still seeing big gains."

September 25, 2005

Mercury Activity

The Keene Sentinel
Editorial
Sunday, September 25, 2005

In the current tight energy market, coal is a bargain for generating electricity. It’s cheaper than oil and gas. If you count the massive cost of storing spent atomic fuel for 100,000 years or so, it’s a darn sight cheaper than nuclear power.

But the country’s 600 coal-burning power plants pose a serious problem. They pump out 48 tons of mercury every year. About 136 pounds of that come from the two coal-burning plants of Public Service Company of New Hampshire: Schiller Station in Portsmouth and Merrimack Station in Bow. Merrimack Station is PSNH’s largest power plant.

And that mercury gets into the air, and into water, and into the fish we eat. It can cause nerve damage. It affects people’s cardiovascular and immune systems. It is especially dangerous in pregnant women, as it can cause permanent memory and language problems in children. It has also been linked to autism.

So how would you like to live downwind of Merrimack Station?
Earlier this year, that frightful question prompted the New Hampshire Senate to pass a bill that would supersede the Bush administration’s lax environmental regulations and require PSNH to cut its mercury emissions by more than half — to 50 pounds — by 2009 and to 24 pounds by 2013.

At the time, PSNH complained that meeting those strict limits would cost tens of millions of dollars, if it could be done at all. Some environmental experts said that a carbon-injection system for smokestacks could trap most of the deadly mercury for less than a million dollars, but PSNH contended that carbon-injection technology was doubtful and unproven.

Probably as a result of those objections, the New Hampshire House did not pass the bill. But the House did send it to the Science, Technology and Energy Committee for study. Real study, as it turns out. The committee has been meeting over the summer and expects to bring the bill back early next year in some form or another.

In the meantime, PSNH has gotten religion. It conducted a small test of carbon-injection technology this summer — results should be known soon — and it has just teamed with a Colorado engineering firm to apply for a $2.5 million federal grant to try a more extensive test next year at Merrimack Station. “PSNH is actively exploring strategies to reduce mercury at its power plants,” said Gary Long, PSNH’s president and chief operating officer.

It’s tempting to be cynical about this, to conclude that PSNH is only responding to the challenge posed by the anti-pollution bill. But so what if it is? Isn’t that the way representative self-government is supposed to work? People complain, legislators act, good things happen.

And if only the possibility of a tough mercury-pollution standard can generate so much positive activity, just imagine what will happen if the New Hampshire House and Senate actually get together in a few months and pass one?

September 21, 2005

UA: ATTENTION FAMILIES IN THE GULF COAST REGION

Unlocking Autism has been dealing with families displaced by Katrina and has advice to offer those in the path of Rita:

We have all learned lessons from Hurricane Katrina. As Hurricane Rita, which is has grown into a strong Category 4 storm, begins to approach the Gulf Coast, we are working hard to use what we learned from Katrina to prepare for Rita, only three weeks later.

ATTENTION FAMILIES IN THE GULF COAST REGION:

If you will potentially be impacted by Hurricane Rita (along the coast of Texas and Southwest Louisiana), you are invited to register your family or families you know about who have children with autism? at the AutismCares website, free of charge. You can put in emergency contact information so that our coordinators can call to check on you after the storm hits. A checklist to help you and your family prepare for the storm is listed below. Should your family need anything after the storm, we will do our best to assist you in coordinating those needs.

Registering prior to the storm will help us be more effective

in our efforts once it passes.

To register, please fill out the form at www.autismcares.org before landfall on Friday/Saturday.

We are still working hard to assist families we have located in the aftermath of Katrina. If you know of a family in need of assistance, please contact us at 1-800-960-1844 or email us at autismcares@talkautism.org .

1-800-960-1844

For our friends preparing for Hurricane Rita, please find a list of hurricane preparations below:

Discuss the type of hazards that could affect your family. Know your home's vulnerability to storm surge, flooding and wind. Prepare your house and your yard for the approaching storm. Remove things in the yard that could become projectiles in heavy winds and secure windows as needed.

Locate a safe room or the safest areas in your home for each hurricane hazard. In certain circumstances the safest areas may not be your home but within your community at a shelter. Is the room you select as your safest spot high enough to evade flood waters? Is there glass in the room that can break with winds? If your area is prone to high flood waters, put an ax in the attic so that you can break out if needed. If your home is not safe, evacuate to a shelter.

When selecting your safe room, consider your child's special needs. Will winds be too loud? Bring a battery operated headset with soft music to keep your child distracted or a portable DVD player, games or drawing materials, if possible. Be sure to bring food and beverages with you to the room so that you don't have to leave it during the height of the storm.

If you have to evacuate in separate modes of transportation, determine escape routes from your home and places to meet. These should be measured in tens of miles rather than hundreds of miles. Have directions with alternate routes available in the event that you are diverted to a different course than what you originally planned by officials. Have a map in the car.

Have an out-of-state friend as a family contact, so all your family members have a single point of contact. Register at AutismCares when you evacuate so that we will be able to assist you more quickly and bring the toll free number with you in your important papers. Remember that phone lines are often damaged for weeks after the storm so having a contact that is several hundred miles from your own area code is a good idea. Make sure that your cell phone is fully charged and that you have important phone numbers either programmed into it or a list of those numbers with you.

Refill any necessary prescriptions for all members of your family. Have medication and supplements that your child might take on hand with enough for a two week supply, minimum. Bring a copy of your child's doctors names and phone numbers.

If you do evacuate to a shelter, put a label on the back of your child's shirt with their name, your name, your emergency contact information and their diagnosis in case you are separated during the evacuation.

Bring any important documents with you including a copy of your child's IEP, insurance papers, medical records, school records, evaluations, etc. Take pictures of your house in each room if you can and bring the film with you. Be sure to have pictures of all family members with you in the event that any of you are separated so that you can notify people more quickly.

Contact the local Red Cross, or local emergency officials, in your area to determine if Special Needs Shelters have been set up prior to the storm's arrival in case you need to evacuate to one. A Special Needs Shelter is more prepared to handle your child's needs.

Make a plan now for what to do with your pets if you need to evacuate.

Post emergency telephone numbers by your phones and make sure your children know how and when to call 911.

Check your insurance coverage - flood damage is not usually covered by homeowners insurance.

Stock non-perishable emergency supplies and a Disaster Supply Kit. You will need candles, flashlights, batteries, enough bottled water for your whole family for five days, charcoal, lighter fluid and matches for cooking, mosquito repellent, ice , toilet paper, body wipes, diaper wipes, plastic bags, diapers (as needed). We also recommend keeping hand cleansers like Purell handy. You might want to make sure that you have Bleach in the event that you need to use it to sterilize water or surfaces contaminated by sewer backups or flood waters.

In the most affected areas, fill your bathtubs and any other containers with water after the storm passes in the event that water pumps fail. This will allow you to still be able to flush your toilet by boiling the water from the tub to the toilet. Be sure to keep small children out of the bathroom to avoid them stumbling into a full tub.

Use a NOAA weather radio or other battery operated transistor radio. Remember to replace its battery every 6 months, as you do with your smoke detectors.

The majority of deaths associated with Hurricanes result in the post storm flooding. Do not venture out after the Hurricane has past if at all possible until officials indicate that it is safe to do so.

The Age of Autism: Adverse events

The Age of Autism: Adverse events
By Dan Olmsted
UPI Senior Editor
Sep. 21, 2005 at 12:59PM

Years before the alarm sounded nationwide about a possible link between vaccines and autism, some doctors were making that connection themselves.

The evidence: 83 reports filed with the Vaccine Adverse Event Reporting System associating the onset of autism with childhood immunizations. The reports, compiled and catalogued by the Centers for Disease Control and Prevention and the Food and Drug Administration, were analyzed by Age of Autism.

A report from 1992 listed Feb. 21 as both "vaccination date" and "adverse event date" for a 1-year-old boy: "Patient received MMR vaccination (measles-mumps-rubella) and experienced fever, autistic behaviors, encephalitic condition, began to tune out; sound sensitivity, hand-flapping, wheel-spinning, nighttime sweats, appetite increase."

The child's diagnoses included autism, encephalopathy (brain swelling), mental retardation, personality disorder and speech disorder.

Another report: Two days after being vaccinated in August 1994 a 1-year-old girl experienced "low fever, much discomfort. Patient laid in bed and cried and moaned; three-four days post-vaccination, rash traveled over patient's body and lasted at least one week. Within six weeks of vaccination patient was observed as losing previously gained language and social skills; diagnosed autistic."

The reports do not prove that any of the autism cases resulted from vaccination. Rather, their potential significance is that a number of qualified observers -- primarily doctors and other health professionals -- suspected a connection and made the effort to report it well before the issue was on the national radar.

In July 1999 the CDC and the American Academy of Pediatrics recommended that manufacturers begin phasing out a mercury-based preservative that was in several childhood vaccines. The concern: As the number of required vaccinations expanded around 1990, children inadvertently got too much mercury, a known neurotoxin.

Since then federal health officials, along with a panel of the Institute of Medicine, have dismissed the concern as unfounded. But some scientists and parent groups continue to assert that childhood immunizations are behind a major rise in autism diagnoses.

The adverse-event reports examined by Age of Autism were sent to VAERS between June 1991 and June 1999 -- the month before the CDC recommendation to phase out thimerosal.

Based on a 1994 report by a California physician, 10 of the 83 cases are unknown children "who received vaccination and (were) diagnosed with autism and encephalopathy." That doctor reported "there are currently 10 cases of autism in children who received DPT/OPV/MMR at 15-18 months." (The reference is to the diphtheria-pertussis-tetanus, polio and MMR vaccines.)

That report also cites a statement from an unidentified vaccine manufacturer: "Dr. ... is not treating physician and does not possess any original records; unclear whether reporter is suggesting possible causal association."

The following excerpts start with the date the report was received by VAERS and the age of the child when vaccinated. The type of vaccine is not always clear and is indicated here only when specified in the event narrative. Medical abbreviations are spelled out for clarity.

--

-- June 5, 1991, age 1.5. Four days post-vaccination developed running fever. To emergency room, temperature 104 and very lethargic. Several tests for various things and couldn't find anything wrong; given antibiotics as a precaution; then lost speech and was diagnosed with autism.

-- July 7, 1995, age 1.9. Patient developed localized swelling with redness in injection site following vaccination. Also had high temperature, loss of balance, limping followed with high-pitched screaming and loss of speech. Diagnosed pervasive personality disorder/autistic.

-- May 29, 1996, age 1.3. Patient received vaccination, experienced a fever of 104.6 which lasted for approximately three to four days. Patient was very lethargic and appeared changed in temperament and abilities; symptoms of autism such as head banging were noticed.

-- April 3, 1997, age 1.2. Evening of vaccination, patient developed temperature of 104.2 and cried all night with high pitched screaming. (Next day) patient wouldn't eat and was listless; patient went off all solid foods; within next three months patient lost all speech abilities; diagnosed with autism.

-- April 15, 1997, age 1.3. Patient received vaccination and developed a big change in mental status that was described as an atypical infantile autistic state with mild seizures; at the age of one or two the patient started sleeping all the time.

-- Aug. 4, 1997, age 6 months. Patient received vaccination and immediately experienced a fever of 104 and developed a quarter-size lump at the injection site; 30 to 60 days post-vaccination patient developed autism; the quarter-size lump persisted for approximately six weeks.

-- March 2, 1999, age 1.3. Loss of all developmental milestones immediately post-vaccination; patient has autism; communication disorder, auditory processing disorder, asthma, food allergies, chronic diarrhea, digestive problems.

-- April 21, 1999, age 1.5. Patient received vaccination; (three days later) after midnight patient woke up screaming unconsolably with hysteria. Later in morning, patient could not talk and could not comprehend anything. Extensive testing done; diagnosis: autism. Continues in this state today.

-- May 27, 1999, age 1.3. Fever immediately post-vaccination -- diarrhea, ulcers on diaper area; chronic digestive problems, loss of speech; stimming behavior; autism, seizure disorder. The patient's ulcerative colitis and gastritis are currently under the care of a physician.

--

Since 1999, the federal government's vaccine databases have come under scrutiny from critics who charge they have been manipulated to show no connection between vaccines and autism. They also say the CDC has a built-in conflict of interest because it sets the universal childhood immunization schedule that is then adopted by the states.

The agency vigorously defends its research and denies that its role in vaccination policy compromises its objectivity.

Last week Sen. Joseph Lieberman, D-Conn., said he plans to seek funding for an independent review of another CDC vaccine database.

"Part of what I'm going to require in this amendment we're going to put up is that the independent studies not only look at the data, but actually talk to some of the -- examine some of the kids and families to go over family histories," Lieberman said.

September 20, 2005

Age of Autism: Research Reversal

The Age of Autism: Research Reversal
By Dan Olmsted, UPI Health Editor

As public funding all but dries up for research into a possible link between vaccines and autism, advocates are trying to tap new sources, but it's too early to tell if they will find any.

"It's just appalling," said Jim Moody, counsel to SafeMinds, a group that backs research into a possible link between autism and a mercury preservative called thimerosal that was used in childhood vaccines. He said a number of scientists -- including researchers at Columbia University, the University of Washington and the University of Arkansas -- have been turned down for federal grants to follow up on such studies.

"They're doing cutting-edge work that is being published in nationally significant journals on important issues of national health policy," Moody said, suggesting the projects are being denied for reasons other than merit.

Moody and others said the shutdown stems largely from a recommendation last year by the Institute of Medicine, part of the National Academy of Sciences. The study found no link between vaccines and autism and suggested that money should go to more "promising" areas of autism research.

"It's not surprising it's happened," Moody said of the difficulty finding grant money. "They (the IOM) said it should happen."

Last month on NBC's "Meet the Press," moderator Tim Russert asked IOM
President Harvey Fineberg, "You're absolutely convinced there's no connection between thimerosal and autism?"

To which Fineberg responded: "I'm convinced that the best evidence all points to the lack of an association. These studies can never prove to the point of absolute certainty an absence of an association, but I would say this: Other avenues of research looking at other possible causes today are much more promising ways to spend our precious resources."

A number of other studies and funding sources are being explored by advocates who say the vaccines-mercury issue deserves more scrutiny. Among them:

• Environmental attorney Robert F. Kennedy Jr., who last week discussed launching an independent study of vaccination records at the Centers for Disease Control and Prevention in Atlanta.

Kennedy volunteered his clout as a fundraiser and said he could make lawyers available to go after the federal government if it denied access to the database.

Kennedy also discussed using a never-vaccinated group, probably the Amish, as a "control" to assess relative autism rates. United Press International reported earlier this year that autism seems significantly less prevalent in that community, based on anecdotal information and the assessment of doctors who treat the Amish.

• Sen. Joseph Lieberman, D-Conn., who said last week he plans to ask Congress to fund an independent review of the thimerosal issue and of the statistical analyses performed by the CDC.

Lieberman has become a vocal advocate of continued investigation of a possible link between thimerosal and autism. Some critics argue the CDC has an inherent conflict of interest in examining the issue, because the CDC recommends the childhood immunization schedule that is adopted by the states.

• Rep. Dave Weldon, R-Fla., who told Age of Autism he wants to fund a study of autism rates among the Amish compared with surrounding communities. Weldon, a medical doctor, is a member of the powerful House Appropriations Committee.

• William Raub, a top official of the Department of Health and Human Services who told parents this summer that a study of the Amish or similar group was an interesting idea and could be done via the National Institutes of Health.

Last month a group of scientists and advocates met with officials of the National Institute of Environmental Health Sciences -- a unit of the NIH -- to outline research into possible environmental causes of autism. Raub attended part of the meeting.

Called Environmental Factors in Neurodevelopmental Disorders, the two-day seminar tackled a wide range of possible research topics, including mercury toxicity. Participants are now formulating a research roadmap to present to the NIH and Congress.

The seminar was held in Bethesda, Md., and was sponsored by the National Autism Association and SafeMinds with a grant from NIEHS.

Such developments persuade SafeMinds counsel Moody the funding dearth is "a temporary glitch. I'm fairly sure we'll get this fixed," but Moody said the lack of interest in such research -- in fact, the interest in discouraging it -- is suspicious.

"If I wasn't convinced of the connection between mercury and developmental disorders," he told Age of Autism, "what would convince me is the inaction."

September 17, 2005

The AAP Ignores Autism this Annum

From John Gilmore at A-CHAMP

The American Academy of Pediatrics is having it's annual convention in Washington DC starting Saturday, Oct. 8. More than 6,000 pediatricians will gather to discuss and learn more about what is important to them. Given the crushing surge in the number of children's lives impacted by autism, now approaching 1 out of 80 boys in the US, a rational person would think this modern plague will no doubt be a top priority at the many educational seminars at the convention.

Autism, though, doesn't seem to be among the AAP’s priorities, according to the AAP convention website (proudly sponoserd by a grant from Astra Zeneca). More than 350 educational sessions are planned. How many do you think are about autism? 30? 15? 5?.

Try 1.

And that session is about the effectiveness of an anesthetic for use on kids with ASD.

For an abstract of the study and others presented at the convention check here. (Sponsored by Shire, your ADHD Support Company)

New treatments? No. Mercury in Vaccines? Is this an issue? Epidemiology? What epidemic? Autistic enterocolitis? Nope. Chelation? Please... Nothing new.

That's why a whole bunch of parents, friends and family of kids with autism are going down to Washington on October 7 and 8 to not only educate our lawmakers on Friday but to educate the physicians who are doing nothing to help our kids.

Please join us. For more info see www.nationalforce.org


This really surprised me.

With ALL that has happened this year, with 1 in 250 diagnosed with Autism, with a child dieing during chelation, with the Senate investigating the only CDC study on vaccines relationship to autism, with parents marching on Washington, with David Kirby's book, with chelation success stories being shown almost weekly on local television... etc. etc... the only question the AAP is interested in is, how to best anesthetize these kids.

Hubris.

UPDATE: Teresa, Queen of Research, has found that the AAP WILL be offering a few seminars on autism, or issues that are associated with Autism. None on chelation, which would make me happy, but enough to know that they not ignoring us. I feel much better as I considered the idea that they were not even going to address the basics of autism this year as a huge slide backward in trying to get docs to really study and treat our kids.

Here is the list she came up with:

Council on Children With Disabilities H108
Saturday, October 08, 2005 8:00 AM-12:00 PM

Update on the Biology of the Autism Spectrum Disorders (ASD)

8:00 am - 8:10 am
Welcome
-Paul Lipkin, MD, FAAP, Section Chairperson
-Diane R. Edwards, MD, FAAP, Program Chairperson

8:10 am - 9:10 am
The Genetics of Autism
-Ellen Roy Elias, MD, FAAP



9:10 am - 10:10 am

Atypical Autism: Recognizing and Managing the Child with High
Functioning Autism and Asperger Syndrome F290
Sunday, October 09, 2005 5:00 PM-5:50 PM

HFA and AS, different labels or different entities? The answer is controversial. This session will address characteristics of each and how they are similar and different in regards to clinical presentation, diagnostic criteria, screening, diagnosis and management. Upon completion of this session, participants will be
able to:

· List the diagnostic criteria for HFA and AS
· Generate a differential diagnosis for HFA/AS
· Describe the screening and evaluation process
· Describe the important components in management

Speaker(s): Chris Plauche Johnson MD, MEd, FAAP

Track(s): Developmental & Behavioral Pediatrics



Autism Spectrum Disorders (ASD)X307
Monday, October 10, 2005 6:45 AM-7:45 AM

Case discussions will be used to illustrate unique challenges in the diagnosis, differential diagnosis and management of children with ASD. In addition to cases prepared by the speaker, cases from practice are welcome. Upon completion of this session, participants will:

· Be aware of existing challenges in screening and diagnosis
· Describe management of challenging behaviors and/or co-morbid health issues
· Adopt a strategy for working with families who choose non-traditional interventions

Speaker(s): Chris Plauche Johnson MD, MEd, FAAP

Track(s): Developmental & Behavioral Pediatrics



Nexus on Environmental Health H313
Monday, October 10, 2005 9:00 AM-12:00 PM

9:00 AM - 9:40 AM:
Thermometers to Fish: What Every Pediatrician Needs to Know About Mercury
Christine Johnson, MD

9:40 AM - 10:20 AM
Common Environmental Health Problems: Case Studies
Christine Johnson, MD
James R. Roberts, MD, MPH

10:20 AM - 11:00 AM
Finding and Managing the Child With an Elevated Blood Lead Level
James R. Roberts, MD, MPH

11:00 AM - 12:00 PM
Annual Business Meeting and Box Lunch

Speaker(s): Christine L. Johnson MD ,James R. Roberts MD, MPH, FAAP



Vaccine Update: The Next 1000 Days
S356
Monday, October 10, 2005 1:30 PM-3:30 PM
The U.S. immunization program has been enormously successful in improving the health of infants, children and adolescents. The near future holds hope for the program to be raised to the next level with the possible addition of conjugated meningococcal, Tdap, rotavirus, MMRV and human papillomavirus vaccines to the childhood and adolescent immunization schedule. The objectives of this seminar are to review the current program, discuss vaccines and vaccine recommendations on the horizon, and outline major policy and service issues these changes will bring.

Speaker(s): Larry K. Pickering MD, FAAP ,Margaret B. Rennels MD, FAAP

Track(s): Infectious Disease



Vaccine Safety Issues S376
Monday, October 10, 2005 4:00 PM-6:00 PM
This seminar will review: current vaccine safety issues; the nature and scope of vaccine hesitancy and its management in primary care; the components of the US vaccine safety system; school entry laws and immunization exemptions; the balance between preserving individual choice and protecting the public health and the need to sustain a broad immunization consensus to achieve the full benefits of modern
vaccinology.

Speaker(s): Edgar K. Marcuse MD, MPH, FAAP ,Walter A. Orenstein MD, FAAP

Track(s): Infectious Disease



Etiology and Management of Autism
S483
Tuesday, October 11, 2005 4:00 PM-6:00 PM

This seminar will review standard criteria for the diagnosis of the autism spectrum disorders (ASD) and will discuss management. ASD children may nor present with indicators of ill health in the same manner as typically developing children and the "Red Flags" suggesting potentially significant medical conditions will be discussed. Upon completion of this session, participants will be able to:

1) Recognize the key core diagnostic characteristics of ASD
2) Be aware of appropriate studies to assist diagnosis
3) Identify atypical symptoms of ill health in ASD children
4) Identify criteria for appropriate interventional strategies
5) Evaluate effectiveness of treatment plans

Speaker(s): Adrian Sandler MD, FAAP ,Margaret L. Bauman MD, FAAP

Track(s): Developmental & Behavioral Pediatrics



The Epidemiology of Autism-Is there an epidemic?
-Craig Newschaffer, PhD

10:10 am - 10:30 am
Questions & Answers

10:30 am - 10:45 am
Break

10:45 am - 11:15 am
Arnold J. Capute Award Presentation
Introduction: Fred Palmer, MD, FAAP, Capute Award Committee Chairperson
Recipient: Pasquale J. Accardo, MD, FAAP

11:15 am - 12:00 Noon
Section Business Meeting

September 15, 2005

Update from Baton Rouge

I work for the Baton Rouge Business Report in my real life, as my real job. Working for a news agency during the Hurricane Katrina aftermath has been very interesting to say the least and I thought it was interesting working for a hotel in the wake of Hurricane Andrew!

Many of you have written and asked how things in Baton Rouge, LA have changed with the passing of the storm. The storm hasn't full passed. The ramifications of it are everywhere. Our editor in chief, JR Ball, has summed up to a tee how our lives have been changed forever down here in the Red Stick.

If you want to read more on the local impact of Hurricane Katrina, visit www.businessreport.com. I am proud of the coverage they have given in this issue to what has become one of the most profound things to ever impact my view of life.

After you read this, think about how your family with your children would have survived with whatever you could throw in a car or pack in a little bag to evacuate.

One of the families I met this week from New Orleans in a shelter in Thibodeaux, LA was a single mother of four children ages 10-13 with two children with autism. They had survived the ordeal at the Convention Center by sitting in a corner and holding hands in the dark. They had no food or water for days. She has nothing to go home to and no one to help her. Her home was under water. The Walmart where she worked as a stock clerk was destroyed by looting and floodwaters.

We were there to pick up another two families when we found her and we didn't have room to pick them up and bring them with us. She came out to the car when we were leaving and I had given her our information and told her we would do our best to get back in touch with her. Then I gave her an ice cold Coke from the ice chest in the car.

She was tired and weary but was not broken. She is determined to make a new life for herself and for her children.

Tears were rolling down her face as she sipped on the Coke and they were rolling down mine too because I couldn't get them all in the car. I made her promise me that she would stay in touch with us. We are trying to track her through the Red Cross now.

I don't know how some people do it.

Life goes on and your world has probably gotten back to normal after the media onslaught of the last two weeks. Our recovery down here on the Gulf Coast is going to take much longer than that.

Shelley Hendrix Reynolds
President, Unlocking Autism
www.unlockingautism.org

On Hiatus

Chandler started school this week and I have been wrapped up in getting him adjusted with his new life and getting his teachers and his aid up to date with all his little idiosyncrasies.

He loves school by the way. I am thrilled!

Will get back to blogging in a few days when he gets settled in.

September 11, 2005

Surfer's Healing


If you have not heard of Surfer's Healing, you gotta.


These are a few pictures from their latest event in New York.


When Chandler is old enough, we are so there.

September 10, 2005

Katrina Magnets

From AutismLink.org:

Help Us Help Hurricane Katrina's Families with Autism!



Only $5 each (includes shipping!) 100% of the proceeds from yoru purchase will go to aiding hurricane victims with autism at Camp Yocona!! Camp Yocona is providing shelter, food (gluten free/casein free too!), and stability to the most vulnerable of Katrina's victims!

Flicker Of Light

From my friend Kel:

Ginger,

I have started a website for the Katrina Survivors called www.flicker-of-light.com. The purpose of this site is to reunite the missing family members, pen pals, and for folks to go to great links that can help.

Yesterday I went and talked to the survivors one on one, and most of them were telling me they're hopeless in finding their family members. So I started to take names of the missing, and my pen pal club has now become a missing persons board too!

In less than 24 hours I have reunited a 71 year old woman with her son, daughter in law and 3 grandaughters the youngest being 1 month old. When one of her grand babies called me today from Houston. She had told me that they all thought for sure that she had died in the flood as she didn't want to leave her home. The story she told me was a living hell. So I feel blessed that I was able to help her out so much.

I have been contacted by State organizations that are going to be getting the message out there about Flicker of Light. So if you have any links to put on there I would much appreciate that.

I just want to get the word out and I thank you for listening.

Kel
Coyote Blog has made observations about the differences between the top-down and the bottom-up efforts to help Katrina Victims. In my view, it is the bottom-up stories that are the most beautiful.

September 8, 2005

Thanks to Dan Olmsted

Thanks to Dan Olmsted for writing about me and my views on Leo Kanners big mistake this week in his column. For those of you who are new to the site, welcome. The piece that Olmsted referred to, "In Defense of my Ire" can be found here in its entirety.

The Age of Autism: One angry mom
By Dan Olmsted Sep 7, 2005, 14:55 GMT

WASHINGTON, DC, United States (UPI) -- Ginger Taylor of Los Angeles describes herself as 'a thirty-something wife of the nicest man alive and mother to the two cutest boys ever. I am a former Johns Hopkins-educated family therapist, and also a Web designer. Most importantly I am a mom. Chandler, born in March `02, is autistic, and Webster, born in Sept. `00, is a mostly typical boy, with a few Autism Spectrum Disorder traits.'

When Taylor saw the recent Age of Autism columns on the first child diagnosed with autism -- and how he appeared to improve after treatment with gold salts in 1947 -- she got mad. As a Hopkins alumnae and a family therapist, she could not believe that doctors at Johns Hopkins, where that first child was diagnosed, had somehow missed the possible connection.

Leo Kanner, the leading child psychiatrist of his day, first diagnosed autism in a child known as Donald T., who came to see him at Johns Hopkins in Baltimore in 1938 at age five. Seven years later, Donald had a life-threatening attack of juvenile arthritis and was treated with gold salts at the Campbell Clinic in Memphis.

That is according to Donald`s brother, who still lives in the small Mississippi town where the two grew up. Donald also lives there, but has not responded to our request for an interview.

Following are excerpts of a post by Taylor on her blog, adventuresinautism.blogspot.com

--

Looking around, I seem to be the only one who is so upset with Kanner for not giving Donald`s medical treatment the consideration it deserved in assessing his considerable improvement from his 'nervous condition.' I think my anger at him for this stems more from a professional place than the place of a parent, although the two together are a potent combination.

As I have mentioned elsewhere, I am a former marriage and family therapist and earned my master`s degree at Johns Hopkins. I also worked there as a grad student, doing my practicum in the psychiatry department in an outpatient program for adolescent substance abusers.

With my professional history, I feel able to put myself in Kanner`s shoes, in a basic way, in that I treated 12-year-olds at Hopkins, and I know what a huge responsibility it is. My criticism of him, I believe, is founded because I know how irresponsible it would have been for me if I had done a history on a patient, and not to included something so vital as the near death, extensive medical treatment and subsequent vast improvement of two very serious medical conditions, of said patient.

If I took patient histories this seriously as a 27-year-old grad student getting her master`s, then Leo Kanner, seasoned medical doctor and Psychiatrist, sure should have taken it all the more seriously.

If I went to the home of a patient to do follow-up after not seeing him for a few years, and noted that he had managed to kick heroin during a break in drug treatment, after a change in living arrangements and after a three-month hospitalization for a life-threatening illness, and I only reported the great living arrangement that he was in, I would not be doing my job. It could end up harming the patient, his family and heroin users everywhere who could be offered a treatment that might have stemmed from whatever medical treatment could have sped his recovery.

Is there a new medical treatment that can help heroin users kick the habit? Who knows? Ginger didn`t write it down, so no one looked into it.

Even if the family had not mentioned the hospitalization or attributed his recovery to it at the time, it would still be my responsibility to get ahold of his medical records even if only to assure continuity of care. This would be so much more true of Dr. Kanner as he defined autism and therefore took responsibility for every aspect of the diagnosis and all of the subjects that he took under his care. Add to the fact that he was a doctor at Hopkins in the first half of the 20th century, when doctors were considered godlike and few people questioned them, and his breach becomes all the more egregious.

In defense of Kanner, I don`t think that he was a heartless parent-basher and he should not be placed any where near (Bruno) Bettelheim, who destroyed so many lives and families. I just don`t think that he was thorough enough at a moment where it really, really counted. He made a freshman mistake that cost many people dearly and left the door open for Bettelheim (who blamed parents for their children`s autism).

'In further defense of Kanner, I have not read his follow-up paper, and I am taking the word of (The Age of Autism) and others who have written about it. I tried to read it last week but got so emotional about what happened to these children and couldn`t continue. I will reserve the right to amend my judgment of Kanner after I get the guts to read his paper.

In respect to the gold salts, I did not read the discussion of how the gold salts treatment may have impacted Donald`s 'nervous condition' as a recommendation for parents to run out and try gold on their children, but merely as a discussion of how gold may have made a change in this specific case and what that might tell us about autism and its potential treatments. What I took away was not that gold could mitigate my son`s autistic symptoms, but that Donald`s treatment represents another case that points to the toxicological and autoimmune features of autism.

I don`t see gold as the answer to my son`s autism any more than I see kitchen mold as the answer to his ear infection. But the happy accident of a moldy petri dish in 1928 has led to hundreds of antibiotics to treat everything from a skinned knee to anthrax. The happy accident of Donald`s recovery might have meant the same for autism, had Kanner written it down.

If it had come to the attention of the medical community that gold salts had improved autism, then autism may have been recognized as an autoimmune disorder long before the 21st century. It may have also have shed light on how the body`s immune system works and how autoimmune responses are triggered, giving immunologists information that could have moved the entire field forward. It could have led to a better understanding of toxicology and how heavy metals could contribute to neurological disorders, and lead may have been removed from paint decades earlier than it was.

At the very least, we might know what autism, in all its forms, is by now.

Would any of these things have happened? Who knows? Leo didn`t write it down.

This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: dolmsted@upi.com.

September 7, 2005

How You Can Help

So many of you have already given donations and offered your homes and everything else but you are wanting to know ways that you can help on a greater scale.

We have some ideas for you below:

FIRST:

Many of the refugees are now being moved out and relocated to other parts of the country where they will be in shelters managed by the Red Cross. If you will have a Red Cross shelter in your community, contact your local Red Cross to find out if you can volunteer. Once you are trained or processed and allowed access to the shelter you can look for families or adults that might need our community's assistance. If you don't find anyone in the shelter with autism, make sure that you leave contact information so that they can find you after your shift is completed.

Also, if you don't find a shelter with a person with autism, there will be plenty for you to do and your help is needed.

IF YOU FIND A FAMILY WITH AUTISM:

a) Ask if they have resources where they can go to live? Family in another state that can help them transition? Do they need help getting there with airplane tickets, bus tickets, etc?

b) If they don't have any resources available they have THREE options:

1) They may relocate from the shelter to the camp in Mississippi that Peg Pickering and her people have so graciously coordinated. Contact information to let them know that resource exists is on our site at www.unlockingautism.org.

2) They may relocate to another area of the country. We need to know the top three areas where they would like to go so we can see if we have host families in those cities.

3) They can find an apartment in the area where they have been staying and we will assist with the first month's rent and/or deposit as needed.

We will provide this to as many people as we can as long as we have the funds available.

ONCE A FAMILY IS SETTLED:

Leaders in your area will be getting in touch with you to let you know when a family has moved into your area. They will be organizing a pantry and basic home furnishings stocking party as needed. The families needs all vary. Keep in mind that we are all different shapes, different sizes and our kids all have different needs.

To recap:

Order of priority:

FIND THEM

SHELTER

FOOD

CLOTHING


Once these people have an address, we can help get things to them but finding them first is critical. Giving them an address is the next best thing we can all do.

We have a report from Dr. Jeanette Gallagher who volunteered as a Red Cross volunteer today in Houston. Dr. Gallagher is from Kenner, LA and is currently displaced herself but she volunteered to look for families in the shelters near her. She found two families. She reports that the conditions are nice and that for families with children with autism, they have provided partitions to give them as much privacy as possible. There are air mattresses and things are clean and organized.

Shifts change every 8 hours just like nursing shifts so if you drop off information at the start of one shift, it may or may not be there when the next shift takes over. If you have a fax from your home you can send it at the beginning of each shift or call to make sure they are aware that you are there as a resource to connect them back to their community.

Thanks for being patient as we move through this. We have never done this before and are doing our best to keep it all straight and figure out what needs to be done! Keep your ideas coming!!!!!

The Unlocking Autism Staff

AutismCares.org

The efforts of Unlocking Autism have grown to include most of the national autism organizations and they have now set up a central web site to corrdinate the project.

http://www.AutismCares.org

If you have a house or services to offer, please register it there.

If you are interested in helping us out with families reloacating to Los Angeles, please write to me at katrina@adventuresinautism.com.

Here is the latest from Unlocking Autism:

After speaking with state officials this morning, we have learned that in the state of Louisiana alone, early estimates indicate that there are a minimum of 900 children with autism that have been displaced and that is simply based on the number of children in public schools. The five parishes in Louisiana that were hardest hit by Hurricane Katrina were homes to more than 1/3 of the children in Louisiana with autism. Those parishes include: St. Bernard, Plaquemines, Jefferson, Orleans and St. Tammany.

900 Children

This only accounts for children ages 3-22 in the state of Louisiana diagnosed with autism and does not include any child in a private school, home based educational program, under the age of 3 or any adults.

The needs here are massive.

The thing that we have realized over the last 48 hours in counseling families is that the trauma is overwhelming. They are in shock. It is difficult to get them to focus on the fact that they need shelter, clothing and food and water before they even start to think about schools and therapists and everything else that comes with having a family member that has autism.

We cannot tell you how much we appreciate everyone wanting to open their homes to help relocate these families. Please be patient with us. Many of these families that we have talked to want to stay in the area to see if they can eventually get back to their house to see if any photos survived or their grandma's necklace or something.

We have many state agencies that are working to help us identify families as they come.

We just wanted to send this information out to you as our community today so that you would understand that magnitude of this situation.

And the thing that is boggling our minds is that this does not include the number of children displaced in Mississippi or Alabama as a result of this catastrophe.

Unlocking Autism

Katrina: Missing Autistic Children

13 Year-Old Girl Missing

From CNN:

Megan Carter is 13 years old, unable to speak, and was last seen with her caregiver Linda Jones in Kenner, LA (Near N.O. Intl Airport). Megan is non-verbal, and not toilet-trained (wears pull-ups). She cannot feed herself, but likes any kind of food; particularly milk. She does not like
candy or chips.

Her mother is currently disabled and in the hospital, and her relatives are safe in Greenville MS. She is in the Red Cross's database and other lists. If you have any information, please call her relatives at 662-334-4770.

For her picture, please see: http://www.autisminfo.com/Katrina3.htm:

UPDATE: MEGAN HAS BEEN FOUND!!

We just found out that Megan Carter has been located in Texas with her caregiver. She is safe, doing fine, and is ready to be reunited with her family - what great news!

Brad
AutismInfo.com

• • •

Missing 16 Year-Old Boy

Scott Gammage, Co-President of the Autism Society of Greater Tarrant County, went personally to all the shelters in Tarrant County (Fort Worth area) to see if there are any families with autism who need help. We have found a mother here in Fort Worth who is searching for her son with autism.

The mother Adrian Collins is at the Will Rogers Complex in Fort Worth. She is from New Orleans. Her son Eric Collins has autism and is 16 yrs. old. He is verbal and does pretty well with routine and his meds.(concerta, resperidol). She was concerned that he probably has no meds. Adrian thinks he is with his older brother Kennith Collins Jr. and his wife Karen Collins. They were also from New Orleans. She has no idea where they may have been taken but is confident they were bused out of New Orleans. It is an inconceivable understatement to say she was worried about them.

Adrian is also disabled from a stroke a few years back. She was gracious and grateful that someone here would be concerned.

Eric Collins birthday 12/21/88 Kennith Collins birthday 4/17/75 - Karen Collins

We are also searching through the Red Cross data bank to see if we can locate him. If anyone has any way to check with other shelters for Eric we would be most appreciative.

Marianna Bond, Autism Society of Greater Tarrant County 817-498-6133

• • •

Looses Touch With 21 Year-Old Son By Julie Goodman for The Clarion-Ledger http://tinyurl.com/9hnot

LAUREL — Sharoyn Kehlor held up a creased photograph of her son, Michael, standing in front of a Christmas tree at his group home in Kenner, La.

"Hmmm," she said, kissing his image. "My boy."

Kehlor, who has joined more than 700 other evacuees at a shelter here in Laurel run by the American Red Cross, has not talked to her son since Aug. 26 when Hurricane Katrina barreled into their lives.

Michael is 21 but with autism functions more as a 5-year-old and is used to speaking with his mother by phone every night and seeing her every Wednesday.

But instead of looking forward to her next visit, Kehlor, 55, is shuffling through her new home — the fairgrounds where rodeos are ordinarily held — navigating with a cane around barefoot children, pregnant women and armed men in fatigues.

Sharoyn Kehlor and her husband Michael sit on a cot at a Laurel shelter for Hurricane Katrina evacuees. The couple have not been able to locate their son.

She is surrounded by large fans, Coke machines and cots, and finds herself talking over an occasional loud-speaker announcement, sometimes delivered in Spanish.

Instead of listening to Michael go on about his beloved special needs bus or his favorite holiday, Halloween, she is surrounded by talk about a cot shortage, missing persons and shower time — women at even hours, men at odd.

She does not know where her son is, and she's been crying like crazy, she said.

The Friday before Katrina struck, her son's group home evacuated, supposedly transporting residents to Baton Rouge or Gonzales, La.

It was painful for her, she said, but she had to evacuate without him, knowing that the shelter where she and her husband would land would not be able to provide the 119 pills her son has to take every week, many for behavioral problems and ulcerative colitis.

She was given an emergency contact number for her son, but the information got lost in the shuffle.

Full report here: http://tinyurl.com/9hnot

September 5, 2005

Unlocking Autism to Help Katrina Victims

(bumped to top)

Help Katrina victims with Autism

Update: Special Edition of The Power of ONE! on Autism One Radio Saturday, September 3rd, beginning at 3:00 pm ET. Shelley Hendrix, president, and Nancy Cale, vice president of Unlocking Autism discuss efforts to help families of children with an autism spectrum disorder whose lives have been badly disrupted by the tragedy in the South.


Original Post: In view of the tremendous needs of families with children on the autism spectrum in the Gulf area hit by the hurricane, Unlocking Autism has set up our website to accept donations for these specific needs.

Shelley Reynolds, UA President, lives in Baton Rouge as well as several other UA volunteers. We also have a UA State Rep who lives just outside of New Orleans. These contacts will enable us to find needs and distribute funds to those with children with autism.

If you would like to specifically help these families you may do so by going to www.UnlockingAutism.Org and click on Gulf Disaster Relief. Unlocking Autism is a non profit (501 c 3) organization.

Thank you for your help in this disaster situation. Please remember to pray for all those affected and the safety and health of all residents and those serving in rescue and relief.

Nancy H Cale
Vice President, Unlocking Autism
770.463.4475 home office
866.366.3361 UA Office
www.unlockingautism.org
NanCale@aol.com


UPDATE: From Shelley Hendrix Reynolds with Unlocking Autism

Unlocking Autism has set up a collection to help with the Gulf Coast region relief for families that are stranded as refugees in Southeast Louisiana, Mississippi and Alabama.

Many of these families will not be able to return to their homes for a long time, if then and many will have to relocate elsewhere. Many were only able to leave with whatever they could get into their cars. Most will not have a job to return to unless they are with a larger company that can move them to satellite offices.

The population of Baton Rouge is expected to grow by 500,000 people by the end of the week.

Electricity is still out in many places, phone service (cell and land) is spotty at best and it takes a long time to get phone calls in and out.

They are issuing a dusk to dawn curfew everywhere and looting issues have spread to Baton Rouge now. It is pretty chaotic because the streets here are full of cars. I have never seen anything like this in my life. We have had hurricanes and messes before but this is just nuts.

We are working to reach people who are in contact with families who have children and adults with autism in their family who need assistance. Please do not send us the names of people you know from this area unless you currently know where they are and have a means to locate them. We might have known where they were this time last week, but we don't know where they are now. Our website will be updated later tonight to receive this information.

We are collecting money through our site at www.unlockingautism.org to assist with getting them supplies, paying for hotel rooms, helping them find accommodations to rent housing, buying supplies to help accommodate any school programs.

My family has been really lucky. Liam and Mairin are staying with their daddy and he has electricity and things are ok. Liam doesn't know why he can't go to my house which has him a little confused and it is because the backyard is full of power lines...I can't afford to have him run back there to try and get on the swingset...the lines are draped across the chainlink metal fence. But I cannot imagine trying to handle this if we were evacuees from New Orleans and trying to stay put in a shelter with a child with autism with thousands of other people in there with me.

They have not been able to contain the levees and are predicting that it will be a minimum of 3 months before people can go back into some areas of New Orleans. They are trying to block the leak with a barge and by bringing in sections of the Twin Span bridges that fell into the lake, but they are saying that they can't seem to get that to work.

They are putting people with special needs in the LSU Fieldhouse here in Baton Rouge but I have not been able to get there to find out what that all entails and which special needs those may be. We are also in contact with the East Baton Rouge Parish School System to find out if they are enrolling new children with autism because everyone is coming here to enroll their kids in school.

We will keep you apprised of the situation as we can get you information. Thank you all for all of your support and your prayers. Please keep praying for those people still trapped in New Orleans. There are people down there who need prayers for more than just shelter, they need prayers for their lives.

We love you all...thank you for your support.

Shelley


Update: If autism is not your thing, lots more charities here and here.

September 3, 2005

Julie and Eric

When you’re growing up, there’s at least one person who will make a drastic impact on your life. My brother, Eric, is the one who stands out.

September 2, 2005

Small Business Steps Up for Autistic Kids

From my beautiful friend Brynn:

Ginger~
I'm donating $1 per letter sold from 'My Love's Letters' (see link below to my CraigsList posting) to the hurricane victims and can't imagine a better place for this to go, so if you know anyone who might be interested in getting hand painted wall letters for their kids then please spread the word :-)Here's the link to my CraigsList posting:
http://losangeles.craigslist.org/bab/94791124.html

Love you and thanks for alerting us to the specific challenges that these families are facing - I just didn't even think of how this would effect families with autistic children....
Much love~
Brynn
http://www.mylovesletters.shutterfly.com


Go buy her beautiful, and they are beautiful, letters for your child's room.

So who else? Come on. You have a business don't you?

Autism Community Helping Its Own

From Karen Jones who is taking help to some leaders in the autism community who have been hit by Katrina:

Hi all... we are headed tomorrow to meet Ann and her husband to take humanitarian aid. We'll leave in the AM. Many thanks to all of you who have sent notes (I will print and take these) and also the donations and those who have sent things directly to her.

Several this AM have asked if it is too late to do a donation. Here is the plan after talking to Ann this AM.

We are taking water, food, supplements and other basic items to them tomorrow.. as much as we can fit in an SUV and cargo van. There is a dire need right now for all of this. We discussed my forwarding to Ann any further donations and she will work to get these to families who are in need IF we do not need to take more supplies next week. We will do what is most needed-whatever that is. All families who have been hit by this are incurring extra costs right now in order to just live and this will be a great blessing to them to have both supplies or financial help to get what they need most. Ann may get her church to help with this but it is a great chance for us to
reach families of children with autism since Ann said she knows so many of them and can work to get the help to them on an individual basis that is needed. She may also help other families or elderly...

I know that she will use any and all we send in the best way possible and be a wonderful steward of the funds.

We may also take more supplies back next week if they do not yet have electricity and if goods are scarce. We will play this by ear but either way, the things we are giving will be used by those desperately in need of our help.

If you would like to ship something to her directly , please email me privately for her address. If you would like to contribute money to be used for supplies to take them and for families in MS, then please send it via paypal to greatlake@mindspring.com. Or email me privately for an address to send it to if this is not possible.

This has all developed quickly and many thanks for helping us to help them. It's so interesting to me that many outside our ASD community have given me so many reasons NOT to do this... gas, FEMA should be doing it etc etc. The fact is that the things they need are not there and we are close by and have the means to help and
will do that...in spite of any challenges or those who feel it is too difficult to tackle right now. Many wonderful people have come forth and a good majority are from our ASD lists. I sat in just amazement last night at the outpouring of love and concern. I know that this concern will mean more to Maranie and Ann than anything and I am taking to her all the notes that you have sent.

Please say prayers that we are able to safely get there tomorrow and that we can overcome the gas issue. I have spoken to the Chief of Police this AM in the town where we are meeting and he has guaranteed us gas for return trip once we arrive in his town. I have seen so many people like this who are willing to help make this
happen. It has been heartwarming.

Our efforts are small but even if they make a difference for a few families, it will be worth more than words can say.

Thank you again for all your love and support and we will plan to head out with supplies in the AM (Wellness Pharmacy in Birmingham AL is driving tonight to my town with supplements and donations from Kirkman's and that Wellness is giving) and we will load it all and head out in the AM.

I wanted to add also that Kirkmans has generously sent things that will arrive overnight delivery today. I am sure other supplement companies will do the same but have just not been contacted yet due to time.

Thanks again and to answer the question about sending donations or packages, it is not too late as I will be forwarding them to Ann next week after they have cleared my paypal account and anything that you would like to ship personally, will be greatly apprecaited I'm sure.

I put the info in an email last evening on how to send paypal donation, and requesting info for address for packages or checks... please just email me privately. This is NOT tax deductible of course since we are doing this as a grassroots effort as a neighboring state so please know we cannot provide any type receipts of this type. We are just friends trying to help friends in the quickest way we know how.

Many blessings to all and please remember all of these folks in prayers. Wonderful things will come of this and you are all so generous to care and help.

Ann and Maranie send their love and thanks!

Blessings,
Karen Jones



Update:
Hi all... I am racing tonight but wanted to post a quick update. We have gotten so many wonderful donations and we will be taking two vehicles tomorrow packed with food, water, supplies, medicines and other things (chocolate for Ann!).

Thank you all so very much for what you donated and for the things you have shipped to Ann. I can't tell you how much this has meant to she and Maranie. We plan to leave early in the AM... actually. Wellness folks just called and it's about 10:30 PM and they are getting into Auburn, my hometown. They will be going with me tomorrow and have brought a ton of stuff from Birmimgham and Kirkman. Also
Klaire/Prothera called this AM and they shipped directly to Ann this AM some supplements. Everyone has been so wonderful.

I've got hours of things to do before we can leave in the AM but just wanted to update you that we have about $2000 of supplies packed to go and will be taking more next week if needed or giving Ann the additional funds to use there in MS-whatever is best for them.

Thanks again so much... they are fine and have the generator working. Gas is VERY scarce and it took hours to get enough to come and meet us 2 hours away today....but they did finally get some for the car and generator. Maranie found out today that her power will be off for about 3 more weeks at least so if anyone has access to a
generator, please let me know and we'll try to find a way to get it to her. There are virtually none here in the southeast that are not incredibly expensive. Dean is doing well and coping well...we have his supplements that were lacking or running low in the car for them and lots more that can be shared with other families too.

You are all so totally amazing. I have been in awe of your kindness and generousity all day today and have printed each and every note and paypal notification and will be taking these with me for Ann and Maranie to read tomorrow.

I'll update on Friday night or Saturday and will give them hugs from all of us.

God bless you all.
Karen in AL

For Katrina/Autism Families Looking for Help

Someone once said, 'when your child is diagnosed with autism, you begin to meet a better class of people'.

From Peg Pickering

Camp Yocona, Toccopola, MS (near Oxford) is willing to house up to 350 temporarily (4-5 weeks before we start having space conflicts with groups the facility has committed to). They have cabins which house 8 and each group of cabins (4 to 5)has a bathhouse. Centralized commercial kitchen and dining hall. We have a great gfcf cook willing to fly over from Hawaii to help get set up etc. if we have a group going there. I also live locally and will help with logistics, etc.

The Ranger at Camp Yocona has asked me to coordinate for them (He's recovering from surgery) please contact me with information.

Also, Camp Lake Stephens, Oxford, MS has opened its facilities to anyone who needs them. They have air-conditioned cabins with 8 beds and private baths each. 662.234.3350 Don't have lots of particulars, but these are good Methodist people wanting to help if they can.

They have offered their facilities to several groups and have heard back from none so far. The director of the camp has an autistic son so he "gets it."

Peg Pickering
mitsmom@yahoo.com
662-488-9619