Autism One & Generation Rescue Autism Redefined 2010 Conference
National Vaccine Advisory Meeting Wednesday 12/16 (H1N1)

Autism: Regression, Aggression

Aggressive_children We ran a link to over the weekend to The Cleveland Plain dealer article (HERE) about Sky Walker, the young man who is alleged (there has been no trial due to his autism) to have beaten his mother, Kent State University professor Trudy Stuernagel, to death. Professor Steurnagel had written a letter to her family, in case of her death at the hand of her son. Our contributor Teresa Conrick allowed us to run her comment on the story as a post.

By Teresa Conrick

This could be Megan. I keep thinking that over and over. Too many similarities- I have videos of her playing with her dad and me- peek a boo, laughing, smiling, hugging, and then the gradual disappearance and then big regression.

She was this new child - no sleep, sickly, crying all the time, and it got worse and worse. I used to have all the holidays, then I was home, alone with Megan as she was too out of control, biting, hitting, having daily enuresis and.....worse throughout the house, and so sad. Out of nowhere she would run at me with her little elbow extended, as a weapon to hurt me. She was like a woman in labor, lashing out as the pain would ebb and flow, as the inflammation would ravish her body.

Goodbye marriage,assorted friends, and confused family members. I was on survival mode as I would drive Megan around at assorted times of the day and night so she would stop banging her head or biting. She would become so aggressive as her eyes would dilate, she would run around like she was on fire and I was afraid of what she would do. I didn't know it was pain...but did find Ibuprofen to become imperative to stop these episodes.... the unknown inflammation. There was no medical help as Megan had "autism" and I was told there was no treatments besides behavioral. We did intense behavioral (ABA) and that had no impact on these episodes of aggression.

The car rides would be a way to protect her but more so to get her away from her younger sister who would be terrified in the beginning..then sadly as the years went by, not blink an eye to the madness.

Her school would call me to say they had to hold her down as she was aggressive to herself or others. Many times I would have to leave my job and go get her as they could not stop her behaviors.

My siblings looked at me like I was nuts and vocally challenged my choice to keep Megan at home. They did not understand her huge food issues and how she could not eat many foods as they exacerbated her symptoms, her pain. Abandonment by many became common.

I never thought Megan would kill me but there were many times I thought she would harm herself or worse and I would be blamed. Here is an aggressive, unhappy child and now she has broken bones from a fall or marks on her wrists from biting and I look to be the perpetrator as who would not want to stop her horrible behavior? But, I knew Megan was sick and so very sick as her behaviors showed. I just didn't know how to get her feeling better and functioning better. Enter biomed and ridding her of chronic bacterial and fungal infections, changing her diet, helping her immune system, and decreasing inflammation in both her gut and brain.

I am absolutely in tears at this whole nightmare for Sky and the tragic loss of his mother. If only he could be helped medically, to show that his behavior,,his "possession" (and there were times any innocent bystander would have looked at my daughter and thought this 8 year old child was infiltrated by some unknown force-as she had power throwing furniture down the stairs as her eyes changed and she made nonverbal sounds that hinted of harm) that pain and inflammation could cause this but it did. Add in hormones and this helps explain the big increase we see in seizures and aggression with so many teens.

Megan is happy these days at age 16, laughing with her sister, dancing, using a communication devise, and just won "Student of the Quarter" in Special recreation for leadership, independence and for her beautiful personality that was masked by pain and torment for so many years. The key is vigilance with food issues, reducing inflammation, supplements/probiotics to keep away dysbiotic and pathogenic bacteria as well as the constant battle against yeast-candida. Sedatives, antidepressants, stimulants nor anxiety meds will do that.

Dr. Max Wiznitzer,and all like him who avoid the truth about autism's roots in the immune system and inflammatory pain, will go down in history as psychiatric pill-pushers who let these children suffer.

The equally disturbing issue here is that these children have these damaged immune, mitochondria, gastrointestinal, neurological systems because of injury to them from the environment, and for many, vaccines were that "port of entry" as Kanner said about autism in the DSM.

Sorry about the length here but I have been both cursed and blessed to tell this story as Megan and I are surviving and figuring out how not to be dead. And I am grateful beyond words.

Teresa Conrick has two beautiful daughters. When she is not teaching, she is researching the biomedical implications of autism, both past and present.

Comments

michael framson

Did Wiznitzer commit any form of perjury in his court testimony?

Teresa Conrick

Thanks for this information re Dr. Max Wiznitzer.

here is an important piece on that pdf-

"Max Wiznitzer brought up the interesting issue of the description of an apparent newly
described entity associated with measles vaccine, in which the clinical picture is similar
to that of subacute sclerosing panencephalitis (“VAMP”, vaccine altered measles
panencephalitis), and another with a clinical picture similar to that of autism (“MINA”,
measles-induced neural autism syndrome). These were apparently recently described in
an abstract in the Journal of Child Neurology. There was some question as to whether
these apparent post-immunization phenomena would be captured by our current
definitions. It was decided that one of these apparent cases could be used as a test case,
to see how they might be addressed by the current case definitions."

..."the language was changed to reflect the fact
that the basic hallmark of EEG findings in encephalitis is nonspecific diffuse or
multifocal background slowing, with or without other abnormalities."

How man of our children have had "diffuse slowing"...."abnormalities"?

Megan has.

And how is this possible from Dr.Wiznitzer?:

http://www.cnn.com/2009/HEALTH/02/12/court.autism.reactions/index.html

"As the scientific community has been saying for a long time, there is no good, credible, reproducible research that supports the hypothesis that MMR (measles, mumps and rubella) vaccine causes autism," said Dr. Max Wiznitzer, an autism expert at Rainbow Babies and Children's Hospital in Cleveland, Ohio.

Wiznitzer testified in two of these three lawsuits brought against the government's National Vaccine Injury Compensation Program.

"What the decision tells us is that these vaccinations are safe," he said. "The medical evidence tells us there is no association between vaccines and autism. This is one more piece that helps confirm that conclusion."

Actually, this tells us that Dr.Wiznitzer is not telling the truth as he reported this "post-immunization phenomena".."associated with measles vaccine, in which the clinical picture is similar
to that of subacute sclerosing panencephalitis (“VAMP”, vaccine altered measles
panencephalitis), and another with a clinical picture similar to that of autism (“MINA”,
measles-induced neural autism syndrome)."
as he reported this in 2004 and then said in 2009, in Vaccine Court, "What the decision tells us is that these vaccinations are safe," he said: "The medical evidence tells us there is no association between vaccines and autism."

These are quite contradictory.

Benedetta

Thanks Andrea;
Last I heard from him on this subject was that he was done as he threw up his hands in frustation!

I guess we all get like that though, we say to ourselves (or I did) get on with our lives. But we Can't do it though, none of us can - because our lives are our children.

We just had to sit back helpless and watch the numbers continue to rise. They are Numbers to CDC - but we all know the kind of people that those numbers represent.

Still does not seem to be any hurry - The end of 2110 is a whole year and then that is just to introduce this problem - again. Then another year to decide if they will look at this problem.

michael framson

Janet here's the link:

http://www.brightoncollaboration.org/internet/en/index/working_groups/case_definition_working/completed/encephalitis/minutes.-MainContentPar-0010-DownloadFile.tmp/Encephal_Minutes_6%20July%202004.pdf

Janet Sheehan

Max Wiznitzer DOES know what is going on with the kids. Google "Brighton Collaboration Encephalitis Working Group Conference Call Minutes". On July 6, 2004 he described a new entity of VAMP (Vaccine Altered Measles Panencephalitis) and MINA (Measles Induced Neural Autism syndrome).

This was a meeting discussing ADEM, which is a known sequela of the measles vaccine, but apparently the knowledge of VAMP and MINA never made it to mainstream medicine. Gee I wonder why.

Of course he knows what is going on, there's even an effing name attached to it. I wish I could figure out how to attach the link to the page...hpoefully those interested can locate it. It's unbelievable.

Andrea

Benedetta,

Dan Burton is still around. The latest I saw anything about him and our plight was this:

http://burton.house.gov/posts?tag=Autism

Posted by John Donnelly on October 1, 2009
Autism | Issue: Autism |
FOR IMMEDIATE RELEASE CONTACT: John Donnelly
October 6, 2009 (202) 225-2276


Legislation Seeks To Convene Conference Before 2011, Explore Federal Policy Options

WASHINGTON, D.C. - Rep. Dan Burton (R-IN-05) introduced the "White House Conference on Autism Act of 2009" [HR 3703] last week. The legislation calls for the White House to convene a conference on autism before 2011 for the purpose of exploring policy options to address the increasing rate of Americans with an autism spectrum disorder. Rep. Burton issued the following statement after introducing the bill:


"In a study released yesterday, the journal Pediatrics found that 1 in 100 children in America have an autism spectrum disorder--an increase from the commonly referenced 1 in 150 estimate established in 2003. This finding is extraordinary and naturally implies that the highest levels of the U.S. government need to develop a plan for assisting a generation of millions who have an autism-related disorder.

"I have introduced legislation that calls on the White House to take swift action before the year 2011, and convene a conference on autism with the brightest, most informed minds on the issue. My hope is that the conference will develop effective policy options for the Federal and State levels of government so that public services can be improved and prepared for meeting the special needs of millions.

"I was pleased to read that Dr. Illeana Arias, the deputy director of the Centers for Disease Prevention and Control, recently said, 'A concerted effort and substantial national response is warranted' in response to the growing autism epidemic. The conference I'm proposing would, ideally, capture the attitude of Dr. Arias and instill a sense of sincere urgency throughout the various levels of American government."

Background:
Below is a copy of the "Dear Colleague" letter Rep. Burton sent to Members of the House as he sought cosponsors for the legislation:

Dear Colleague:

As many of you know, autism is a complex developmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others. Autism knows no racial, ethnic, or social boundaries; family income levels; lifestyle choices; or educational levels, and can affect any family and any child.

About 20 years ago, autism was considered a rare disease, affecting about 1 in 10,000 children. Now, that rate is about 1 in 150; making
autism more common than pediatric cancer, diabetes, and AIDS combined. Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise. According to the most recent statistics from the U.S. Department of Education and other governmental agencies, autism is growing at an astronomical rate of 10-17 percent per year. At this rate, experts estimate that the prevalence of autism could reach 4 million Americans in the next decade. Currently, autism costs the nation over $35 billion per year, but this figure is expected to significantly increase in the next decade.

This literal epidemic of autism is a looming and immediate economic crisis to our education system, our health care systems, our long-term housing and care system for the disabled, and especially to an ever increasing number of families across the country. Autism is a condition that can be treated to a degree but it has no known cure; which means that this is a crisis that is simply not going to ``go away.''

I believe that our Nation's educational, labor, housing, law enforcement and medical communities are currently ill-equipped and undertrained to handle this lost generation of autistic individuals and that it is going to take a national commitment driven from the highest levels to marshal the necessary resources and energy to catch up. That is why I plan to introduce legislation (click on the highlighted link to view the bill text) to require the President to call, not later than December 31, 2010, a White House Conference on Autism. I urge you to join the fight and become an original co-sponsor of this critically important legislation.


Sincerely,
DAN BURTON
Member of Congress


michael framson

Gatagora, As usual you're right. Where was the person tugging on Trudy's ear to seek out alternative philosophies of health, wellness, and other interventions? From the article, it appears there wasn't any information reaching her (except the usual drug pushing doctor)in a way which would move her to action in another direction. She was isolated except what was offered to her.

"sheriff's investigative files show medicine cabinets and kitchen shelves in the home laden with bottles of prescription antidepressants, anti-anxiety drugs and tranquilizers."

This is the indictment of the whole system of western pharmaceutical medicine and those like Max Wiznitzer.

Benedetta

Andrea, I heard Senator Dan Burton read this letter on CNN. When he finished he said his own grandson he estimated would also be over six feet tall, and he too worried what was to become of his daughter, and his family.
Has Dan gave up the fight? Not heard from him in a long while about autism?

Timber

I know folks shudder at the thought of long term antibiotics but it can literally change the course of a childs life, especially an aggressive one. I believe PANDAS and what scientists are discovering about bacteria,inflammation,and immune dysfunctions link to ASD's will be groundbreaking!

Andrea

I'll never forget listening to Dan Burton read Ray Gallop's leter in Dec 2002 at a vaccine hearing he held in D.C.

I couldn't find the exact letter online but the following from something Ray wrote is enough to send shivers down a parent's spine.

"In 2002, Eric started to develop aggressions where he would bite,
head-butt, kick, scratch and pull hair. Up to February 2004, we had to call
the police numerous times and Eric had to be taken to the hospital. He
was on various
anti-depressant medications over those two years and in February 2003,
Eric broke my left index finger with his teeth almost amputating it
off. Eric grew to be 6'2" tall and I am 5'10" so he was a handful. We
received no respite care from Eric's school or any state agency. We lived a
life of hell and we were under siege during that time. When Eric had an
aggression, we would have to go behind our bedroom or bathroom doors
and lock them so Eric
couldn't hurt us. Eric broke two bedroom doors by kicking on them and
we had to replace them with stronger doors that were kick-proof. At a
December 10, 2002 vaccine hearing by the Government Reform Committee in
Washington, DC, Congressman Dan Burton read my letter to the members at
the hearing.

Eric had aggressions at school and was suspended various times. In
February 2004, Eric was terminated from school and when I took Eric to the
store he had another aggression. The police were called and Eric was
taken to the hospital where he was born and put in their psychiatric
unit. After a couple of weeks, we were told by the hospital that he would
either have to be taken
home or put in Greystone Park Psychiatric Hospital and if we didn't do
this we would be sued. So we took him to Greystone. The staff and
patients took good care of him and they said that Greystone wasn't the
appropriate place
for Eric. Eric had been on a waiting list for Kennedy Krieger Institute
in Baltimore, Maryland so they finally had an opening in March 2003.

He was released and taken to Kennedy Krieger Institute where they
treated him for his aggressions.

In August 2004 he was released from Kennedy Krieger Institute and was
placed in an out-of-state residential school. When we initially left him
there, he was running to the door to get out because he wanted to go
home with us. Since that time he has gotten better but he is on heavy
duty medication such as haldol and adivan. It takes us 2 and ½ hours to
drive one way to see Eric so we only see him every other weekend. In
January 2005, another patient punched Eric in the eye giving Eric a black
eye. Eric was on a couch and pushed the other patient and the patient
took exception and punched Eric. I worry about Eric constantly and at
times I wonder what his and our lives would be like if he wasn't damaged
by the MMR vaccine. Many a time, I shed a tear for him. In particular,
Helen and I had to make funeral arrangements
for Eric because the state said they had money for this. It was very
morbid and stressful for Helen and I to do this. One person asked me why
couldn't the state do this and not cause us more grief. I had no answer
for them.

Many times when we pick up Eric to go out for lunch he will ask us
about "home" in his picture/word book. It is difficult to respond to him
and we have to say not now. During the last year we have brought Eric
home for the
weekend but it is difficult for myself emotionally, the fact that Eric
is no longer living with us. I'm sure that we won't be the first family
dealing with this. Unfortunately, we won't be the last family dealing
with a
situation such as this.

Recently, I had a disagreement over Eric's medications at the school
that he attends. They have him on zyprexa, haldol, adivan and lithium. I
asked them to put Eric on extra doses of Vitamin B6 to reduce the
tremors he has from
the medications. Eric also has drooling problems and he stares off as
he is so heavily medicated. We now have to look for another facility
for Eric because of our
disagreement. Basically, the state, the education system and the
medical community want our children vaccinated. When something goes wrong
then none of these organizations are there to help. They leave it in the
parent's hands. It isn't their problem, it is the problem for the
families involved."

http://abchomeopathy.com/forum2.php/52008/

maria

This is so heartbreaking :(

The diet of the boy was appalling though, as was the huge amount of medication. That all has got to make someone feel horrible.

Has any of you looked into Nutritional Response Testing and Neurofeedback as part of treating/healing the autism? I know these therapies have miraculous effects on people, as does a diet free of grains etc. I don't know how well this is received in the autism community however and would like some information about people's experiences.

Thanks!

Benedetta

Since so many of our autistic kids do have seizures how can we get the message out to these neurlogists, and doctors that Depokote (valporic acid) first choice for seizure control for children is the biggest no, no for acquired mitochondria cyopathy.

I feel we are losing kids everyday to this bit of ignorance.

nhokkanen

Thanks, Teresa, for talking about Megan and how you worked so hard to improve her health. I find it difficult to believe that so many people don't realize that humans are only as good as their biochemistry. To borrow from the computer lexicon, "garbage in, garbage out."

It's frustrating that psychotropic meds can be prescribed without running labs first and are compensated by insurance, but nutritional supplements are not. We're surrounded by children adn adults participating in a gigantic unregulated human drug experiment.

On last night's local TV news I heard a 911 transcript from a woman and daughter frantic because the husband was threatening violence after psychotropic meds changed his personality. He killed his wife, and then police killed him.

For Jenny:
Doctor preaches wonder cure: Vitamin D
http://www.startribune.com/lifestyle/health/28701254.html
PowerPoint: The Clinical Indications for Vitamin D Testing
http://www.cme.umn.edu/prod/groups/med/@pub/@med/@cme/documents/content/med_content_133119.pdf

cmo

A bit off topic, but in Missoui they are giving away a free university bb ticket with your free H1N1 shot.

oh joy...

Maggie

OMG, sky ate only foods loaded with MSG. The poor child's brain must have been on fire.

Avoiding MSG is the most important thing for kids with autism, diet wise.

Roger Kulp

From the article
"He loved children's food, too. After school, they always drove 20 miles to the same McDonald's, where Sky ordered a Happy Meal of Chicken McNuggets and fries, followed by a vanilla ice cream cone. Then they crossed the street to Arby's where he ate another meal of chicken and fries."

From the comments

"Posted by Autismworries
December 06, 2009, 2:28PM
Sky was on medications. And quite a lot of them. Anti-psychotics, anti-anxiety, and tranquilizers. What else should he have been on?"


That sort of says it all doesn't it?It's no wonder Sky was the way he was.


"Fed Up",I am 49 years old,and I still struggle with head banging.I uesd to make holes in the walls,and then I moued on to big heavy books or a board.I found it was not so much "acting out pain that you couldn't express",as it was a reflex triggered by things like infection or fever,or changes in diet.Sort of like a seizure,where you know what is going on,and can talk about it,but you can't control it.

The only solution is to try to prevent what causes it in the first place,in my case foods and fever.(I regress after it goes away.)I had a severe case of bacterial meningitis in 2007.After this,I had a major regression,that lasted nearly two years. During this time,I would head bang for an hour or two nonstop,until I wore myself out.

It's funny.I started chelating(stirring up mercury)after my porphyrins were three to four times normal.The regressions that it caused were mild compared to either going off casein (Lots of head banging there.),or after a severe infection.That could be because of all of the other stuff I was taking while chelating,like isoprinosine, MB12,Omega 3 fish oil,and COQ10.

"Autism: Vaccination, Regression, Aggression, Biomedical Intervention, Recovery

Posted by: Mercury Dad"

It isn't that simple.Some of us who have multiple genetic methylation defects,severe GI disease,and permanent mitochondrial damage,as I do,need to be on extensive regimens of supplements and medication the rest of their lives in or der to have some degree of recovery.

Kathy Blanco

Been there, yes, Lithium Orotate is a godsend for many of us...it stablizes the nerves in the brain...especially good for lyme infected kiddos...and speaking of that, I truly feel that the aggressive kids have a codiagnosis of lyme borrelia bacteria...which in NT populations can cause aggressions, and criminal behaviors in people, because they are in PAIN, due to inflammation in the brain.

been there

lithium Orotate can be VERY helpful for meltdowns/aggression. Only the Hans Nieper version. Here's one good brand.

http://www.iherb.com/Nutrient-Carriers-Incorporated-Advanced-Research-Lithium-Orotate-200-Tablets/6766?utm_source=gb&utm_medium=pf

It's much safer than lithium carbonate (prescription form) since you don't have to worry about reaching near-toxic levels for it to take effect. Anywhere from 1 to six per day (in split dosages) can be taken safetly. Also, it's very inexpensive and available over the counter.

"Lithium Orotate is targeted to the mitrochondria and only functions there. As a result, it does not show up in blood tests. Orotate forms of lithium are approximately 20 fold more effective than toxic synthetic lithium. If trying to use the natural Lithium to replace synthetic Lithium carbonate or sulphate, take approx double or triple the suggested dosing. So, 120 mg. caps, 1 cap 3x per day or 4 times per day until stabile and then back down to whatever is necessary to maintain metabolic equilibrium. Maintenance is usually 1 cap twice daily."

Gatogorra

Thank you Teresa and bless you for sharing your daughter's journey. Parents starting out need to hear that there's hope in the most extreme cases-- you know, that "dangerous" hope that Paul Offit warns against. Parents also need to understand realistically the process of recovery in order to avoid the gaping pit of rationalizations to drug the living hell out of a child who displays such disturbing, self-harming behaviors. Whether the cause is subclinical seizures, pain or "mercury rage" and agonizingly exaggerated sensory perceptions, DAN treatments address this-- drugs don't. You're absolutely right.

The drugs simply hide the harm out of sight before they drive the child further (and often more permanently) out of their mind. I wonder if this is what happened to Sky, particularly since Trudy wrote that he had not been violent prior to being put on Rispderal at age 13.

13 years of non-violent behavior is pretty significant in autism. If your daughter was able to make such an enormous transformation due to your efforts-- even considering that her starting point was so much more severe than Sky's had ever been-- the tragic message might be that nothing that happened to Sky and Trudy had to happen. The drugs on top of the underlying damage of autism might have been the key to inducing extremely violent behavior. It's not an uncommon reaction even among NT individuals: one study found that 11% of emergency room visits are due to psychotrope-induced mania or psychosis.

Professor Steuernagel would not necessarily have known that in 2003 when she agreed to start drug treatments for Sky and the academic environment she was in tends to be the origin of the bs peddled to the rest of us that the drugs are "safe and effective". Senator Grassley wasn't investigating drug front groups, academic drug research fraud and Ivy League kickbacks yet, and many of the current scandals hadn't broken yet or weren't widely aknowledged at the time.

Very often caretakers take antidepressannts themselves because of the horrendous stress that we all know too well. If 1/10 Americans take antidepressants, the rate could be higher among parents of chronically ill children. Many can respond badly, since the drugs cause the same kinds of brain damage in adults as in children. At the very least the drugs can seriously impair judgment and perception of what the *drugs themselves do* because of issues of "drug spellbinding" or anosognosia. Some drugs impair certain self perceptions. On the extreme side, people developing tardive dyskinesia for instance, may be totally unaware of walking around with a protruding tongue or that one side of their body has been contorted. On the milder side, they may be unaware that their lives are falling apart perhaps due to the drugs because they "feel fine" while, say, gambling away family savings (this obviously doesn't apply to Trudy Steuernagel) or feel like they're watching a movie as a family member disintegrates or engages in destructive behavior; "their" solution becomes everyone's solution-- putting everyone on drugs. Also dependency increases tendencies to passionately defend the drugs for use on anyone in spite of evidence of harm, which makes frank discussions of known and even clinically aknowledged side effects almost as fraught as discussions of vaccine side effects in most forums.

All in all, it's tremendously difficult to avoid and then harder to get out of the trap laid out for parents of children with autism. The best among us can fall and it's actually quite extraordinary when a family evades the trap. For that reason, nothing I'm saying or even speculating on is an indictment of Professor Steuernagel: whatever the details were, she did the best she could within what she knew. She resisted putting her son in a home when many would not have been able to. She may have simply been missing certain pieces of information.

As I watch the industry-embedded press relentlessly trying to terrorize families away from taking the one alternative route that might save them from deepening tragedy, I can't help but see the numbers and the global power machine behind that message. With the billions in vaccine sales, the $40 billion a year in antidepressant sales and $16 billion in yearly sales of antipsychotics at stake for industry-- profits which ramped up since the beginning of the epidemic-- I wonder that anyone makes it out alive at all.

Jenny

Since a lot of these behaviors may be due to inflamation, or viruses that the body is not capable of fighting due to a depressed immune system, I am wondering if anyone has had an experience with vitamin D3? I don't see it on the ARI sight of supplements that have been tried and it's success or failure rate. My daughter was seemingly constantly sick, pale and pasty, bloated tummy, and not a cold went by without it progressing into congestion and days of terrible coughing. Nine days of sickness over and over again with a day or two in between of normalcy before it would start all over again. Now she's been on vitamin D3 (and C) for 2 1/2 months and though I can tell when she's got a germ and gets pale, it's only for a day or two, with a few sneezes here and there. Her meltdowns regarding clothing textures and her need to change clothes constantly are seemingly under control. Knock on wood, the colds don't seem to progress and her cheeks turn pink again and her tummy is definately less bloated. Is this my imagination or are we on the right track?

bensmyson

I wonder what it would be like to live in a bubble somewhere, just Ben, Me and Erica (Ben's mom) eat the same foods, play the same games, read the same books, block out anything from the outside, just sit and sit in a routine, day in and day out.

Today it seems to me that Autism is a bubble. I really believe that my son can feel the skin of the bubble, might not be able to see outside of it but he can feel he is enclosed, sometimes. I feel that way myself many times but I used to know ways out of it, something as simple as a puff or two of some illegal weed or a night out at the clubs, a dinner date or working out at a gym until I puke, or gee this one, getting paid, making money. Ben just sits in this bubble though, this sort of hamster ball that rolls around on the floor going everywhere but nowhere. Every day this rolling bubble, this self propelled or kicked ball smacks into a wall.

I think I may have found a way into that ball, but if I climb in I may not be able to come back out, I mean that's ok right? So what neither of us make it back, seriously, what's worse, being separated or living in together in a bubble?

I wonder now though was Trudy Stuernagel inside the bubble or outside?

Some teach to drag your child through an open window, some of course just wait until the child comes back or just stop looking, but I'm wondering about me going out after him, entering into his world. Ben and I often seem as if we are together but then duh, we aren't.

I just watched (less than two hours ago) a teacher literally drag my son down a hall as he looked back crying. A few years of that and I'm sure he will want to kill me.

I have got to figure this out. I'm pretty sure it's one or the other, either you are outside looking in (pulling) or you are with your child inside the bubble (pushing). Either someone drags your son down the hall kicking and screaming or .... what? What do you do except climb in the bubble or get in your car and drive away? How do I know? How does anyone know? Did Trudy Stuernagel think she knew? Or was she struggling for an answer too?

I think I'm going in!

Benedetta

Marcy, a lot of kids with Kawasaki's have acute gallbladder issues.

Lisa in Texas; CD4/CD8 ratios I have never heard of???

Tereasa, good article! My son use to extend those arms, double those fist and run after at me too when he was little. He was rather muscular like his Dad. Whew!

But, now that my son is now 23 and has just asperbers- he still sometimes just gets so mad and he is not hurting - just is a really bad mood and irratable. At those times it is best to just let him withdraw into his room, and leave him alone. I use to try to get him to go on a walk or ride a four wheeler or something (thinking it was depression) maybe it is, but as time goes on I am finding it easier and easier to just let him spend that time withdrawn in his room.

AnaB

This was my son too....until the ABA therapist, not the pediatrician (who for years attributed his behavior to "just he autism") told me to get a neuro consult. It turns out my son was in Petite Mal seizures 24 hours a day and once that was treated the behaviors stopped. But, since the seizures went untreated for so long he went from high function at 3 to severe by 7. This is why I am big on Petite Mal seizure awareness in Autism.

I would like to ask the AAP why if upward of 25% of autistics have seizures heir pediatricians are incapable of recognizing when a kid needs a neuro consult? Why is my son now brain damaged from seizures when this could have been caught 3 years ago if pediatricians were educated? The emperor wears no clothes....pediatricians do not treat Autism yet they present themselves to the public as Autism experts.

Teresa Conrick

Lisa in Texas-

Thanks and what an incredible story. So glad your guy is better! You said-

"Treatment for PANDAS according to NIH involves long term antibiotic treatment, which the doc and I are not in favor of, but we are looking at other solutions."

We have been going after biofilm (bacteria, metals, etc) - and yes it has helped. Talk to your DAN! and see if it could be an option. We go slow and easy and change accordingly. Meg is very sensitive so long term antibiotics could never be an option.

Mercury Dad

Autism: Vaccination, Regression, Aggression, Biomedical Intervention, Recovery

Anne Dachel

Teresa,

Your story shows the side of autism we never see or hear about in the media. Autism is usually covered showing cute kids playing on gym equipment. We're told that autism is an inability at social interaction and a lack of communication skills.

That doesn't sound so bad. The public has no concept of what autism really is like for so many seriously ill children. It's a scary future ahead for this nation when these children become adults.

Anne Dachel
Media

Lisa in Texas

Thanks Teresa for your heartfelt story. My 9 year old son is usually lovable and docile, even though he is very big and strong for his age. It wasn't always this way. Before we started biomed and a GFCF diet, he was on behavior controlling meds and still tantrummed and destroyed everything. After 2 years on the meds, he gained 30 lbs and developed borderline diabetes. That's when I had enough and discovered the GFCF diet and the Autism Research Institute and began biomedical intervention. It was life changing, and my son (nonverbal) began speaking after three months into it. Today he speaks in sentences!
However, two weeks ago, he cracked a tooth and had to have it capped. The following few days he was really lethargic and I wondered if he had tooth pain (he could not tell me). Then he became very aggressive and in one day at school he knocked over two bookcases, destroyed the classroom, slapped the teacher, threw rocks on the playground and became a different child within the span of one week. The school nurse called and said she thought he was having seizures, and he had developed some sudden facial tics and was constantly licking the backs of his hands. Many parents would probably be perplexed by this, but these were all behaviors I saw last year when he had PANDAS. We took him to his doctor, highly knowledgeable about the immune system in autistic kids, and he confirmed PANDAS. Three days of Zithromycin took away the tics, licking the hands, aggressive behaviors, and he is now calm and happy again. I used this opportunity to educate the entire school about the medical issues related to autism and gave the teachers, assistants, school nurse, therapist, dentist and others a copy of my notes from Dr Swedo's PANDAS presentation. Only the dentist had ever heard of it before, and he agreed that maybe the cracked tooth could have led to an exposure to strep. Our doc believes our son could have had the flu (the few days of lethargy) which gave the PANDAS an opportunity to emerge. Treatment for PANDAS according to NIH involves long term antibiotic treatment, which the doc and I are not in favor of, but we are looking at other solutions. This experience also has made me reflect on how far we have come in recovering my son, only to have a sudden and acute setback triggered by an infection. Our kids have fragile immune systems, and the 'mainstream' does not seem to understand this. I dream of a day when every pediatrician is looking at an autistic child and thinking immediately of gut issues, pathogens, heavy metal toxicity and checking immune function with CD4/CD8 ratios. Do you think that will happen in our lifetime? Right now there are only 200 or so physicians that treat autism as a medical and neuro-immune disorder. The other physicians prescribe medications to control behaviors without looking at the cause of those behaviors. I feel so sad about this story with Sky Walker, and wonder what kind of medical care he received.

Natasa

Marcy, have you considered that those episodes can be seizure related?

Seizures can sometimes present as outbursts of aggression.

AnneS

Thank you for posting this Teresa. I can totally relate. We were physically assaulted for a few years starting when our child was just 5 years old. I'm so thankful to have found the right diet and supplementation.

Sally Miller

Teresa, thank you for writing this. We have been there. Of all the aspects of autism, I really think aggression is the worst. We know all about the dilated pupils and the instant flip into 'crazyland'. For my son, who is quite verbal, it wasn't pain, but inflammation for sure. I'm sure brain inflammation matched the bloated belly we could see with our eyes.

Thank God for biomed. Thank God for DAN in general, and Scott Smith in particular. We now have an 8th grader in regular classes, making good grades, and our family is living a basically 'normal' life. That dream seemed impossible only a few years ago.

For those still in the trenches of aggression - never ever give up. There is hope.

Fed Up

The headbanging at my house was off the charts. One day I decided to count the number of times my son banged his head, I stopped counting at 200. The headbanging fallout: 1 busted window, dozens of sheetrock dents and holes, one traumatized tooth for dad that required a root canal, countless headbanging fights with brother. I stopped patching those holes a long time ago. After 4-5 years the headbanging has finally gotten better, but we still have a few episodes now and then.

Parent

Thank you Teresa - Megan is blessed to have you for a mom, and we are all blessed to hear your story.

I'm so, so tired of mainstream medicine and its patent refusal to see the truth of what we are doing as a society - to innocent children!

If I see one more message (on a mainstream parenting board) from a new mom asking why her baby needs acid reflux meds, I swear I am going to scream. The same goes for severe excema (sp?).

My son is not autistic but his gut issues sidelined him for a big chunk of his early school years. It took our own research, money and persistence to finally figure out what was going on. What a blessing it is to finally watch him blossom.

We went in for a camp physical and our mainstream ped said "wow, you guys haven't been here in a long time and your son looks great!" I felt like saying NO THANKS TO YOU.

Marcy

I have a 9 year old son who presents just like your dughter. We have been trying for 3 years to find the source of his pain episodes. I have been afraid of him during these pain episodes on several occasions. We keep searching for a cause of his pain. I finally pushed a GI doctor to write a scrip for Nystatin, but he and the pediatrician don't really buy into its use and neither knows how to dose Diflucan for and ongoing treatment. We will be seeking a new DAN! doc after the new year. We recently discovered 9thru persistence) that his gallbladder is not functioning properly, we don't yet know what that means for him. I suspect we are looking at surgical removal.

I am glad to hear that your daughter is doing much better know than when she was little.

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