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AofA Science Summary: Redox regulation of the influenza hemagglutinin maturation process: a new cell-mediated strategy for anti-influenzatherapy.

Autism and PANDAS

AUTISM PANDAS  teresa conrick- graphic adriana gamondes
By Teresa Conrick

My daughter, Megan's recent diagnosis of an autoimmune condition coupled with an abnormal EEG are big, red flags that help illustrate why she is so ill.  Finding that out hardly ends my journey for more answers to help improve her health and her life.  The disturbing behaviors and symptoms of vocal tics, dilated pupils, agitation, enuresis, and OCD are a barometer of brain dysfunction.  Add in estrogen-induced seizures that developed at age seventeen in tandem to her autoimmune diagnosis and that may be another clue.  As a result, I have been exploring more of the issues that connect her to those children who have a P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Diagnosis Associated with Streptococcal Infections) diagnosis as Megan has had numerous bouts of Strep and other infections that exploded into severe movement and vocal tics over the years.  Her original regression into an autism diagnosis slowly happened after vaccinations along with increasing viral and bacterial infections as a toddler, then an acute rash, fever and loss of language after her MMR vaccine.  We now seem to be in the land of chronic waxing and waning of symptoms and the most sobering part --- we are not alone.


More parents are finding each other and connecting via their child's medical issues.  Autism and P.A.N.D.A.S. may be cousins of a similar origin as there is overlap in symptoms, both behavioral and medical.  A good place to learn more about P.A.N.D.A.S. is this informative site.  A warrior mother in the P.A.N.D.A.S. trenches, Diana Pohlman, developed it in 2009 as she decided to bring parents, research and researchers together to investigate why their children were becoming acutely affected by a monster that Streptococcus bacteria seemed to awaken.  Like so many of us, she saw her son regress into an immune illness that severely affected his mood, behaviors, functioning -- his life.  More and more children each year seem to be developing tics, severe anxiety, obsessive compulsions, involuntary movements and psychiatric issues, not randomly, but due to an infection affecting the brain.  It is usually Streptococcus, an evil little bacteria that these mothers despise, because it is stealing their children.  So Autism parents and P.A.N.D.A.S.parents are beginning to link arms to tackle both cause and cure. As it states on Diana's website above, "Parents Helping Parents," is a key for many families to compare medical issues and treatments.

P.A.N.D.A.S. is a medical diagnosis yet many still do not understand it thus, there is confusion on its causation, how to diagnose it and then appropriate treatments.  We in the trenches of Autism are familiar with these issues as we have been dealing with them for too many years.  Our toddler or child becomes ill, either through an infection or after vaccination and there is a regression in skills. Odd, perseverative and debilitating behaviors creep in.  Life forever changes.  Doctors dismiss the cause and labels are given.  Precious time is lost then more medical symptoms, more labels. A stinging reality -- lack of proper medical treatments cause worsening behaviors.  This continues to happen at an alarming rate.


Some significant research continues to evolve with P.A.N.D.A.S., and the names Cunningham, Swedo and Murphy are becoming instrumental in connecting the hated bacteria to the hosts they have kidnapped.  Another interesting development was the apparent acknowledgement from Dr. Tom Insel that P.A.N.D.A.S. was indeed a real, medical illness. For those who do not know him, Dr. Insel is Director of the National Institute of Mental Health (NIMH), the component of the National Institutes of Health "charged with generating the knowledge needed to understand, treat, and prevent mental disorders", per the website,  including Autism and now also, P.A.N.D.A.S.

 
Here is a portion of what he reported a year ago:



....." Probably the most compelling case for such involvement is children who develop obsessive compulsive disorder (OCD) and/or tic disorders “overnight,” following a strep infection. Despite continuing debate over its parameters, evidence is mounting in support of P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Diagnosis Associated with Streptococcal Infections)  — or at least a syndrome modeled on it......Interest in PANDAS has also been spurred by an increasingly vocal network of affected families and the clinicians who are treating their often severely-impaired children.


.......Columbia University researchers demonstrated, for the first time, that strep-triggered antibodies alone are necessary and sufficient to trigger a PANDAS-like syndrome in mice.4 In an autoimmune-disease susceptible strain of mice, exposure to strep triggered OCD-like repetitive behaviors and antibodies that attacked specific molecules in the brain. PANDAS-like behaviors also emerged in naïve mice after they received antibodies from such PANDAS mice. These included impaired learning and memory and social interaction. As in humans with PANDAS, these impairments were more common in males than females.....In the second study, a Yale University research team reported that OCD and Tourette Syndrome (tic) symptoms worsened slightly following a strep infection in some affected children.


 .....NIMH is preparing to launch a new trial of intravenous immunoglobulin (IVIG) treatment for PANDAS this Fall, with support from a NIH Clinical Center....They are predicting that IVIG treatment will produce striking benefits for OCD and other neuropsychiatric symptoms, and will be most effective for those children who start out with the highest levels of strep-triggered antibodies that go astray and attack parts of the brain.


Do infectious agents influence the development of autism, anxiety, or mood disorders? This remains a frontier area for NIMH research. The increasing evidence linking strep infection to OCD in children suggests that microbiomics may prove an important research area for understanding and treating mental disorders."


While I appreciate the mention of Autism, I think Dr. Insel needs to know that we are past the "frontier" days of Autism.  I have a daughter with a history of regression, who presents with BOTH Autism symptoms and P.A.N.D.A.S. symptoms.  It is devastating and she is not alone as there are MANY more who are unlucky enough to have both of these illnesses. Some families are reporting one child with Autism and another with P.A.N.D.A.S.  What's in a name?  Many have reported regression in their child after vaccination leading to an autism diagnosis, while some say illness alone caused regression.  Many P.A.N.D.A.S. parents report acute regression after a Strep infection (other infections as well) but some have reported P.A.N.D.A.S diagnosis after vaccination or severe flare up of symptoms after being exposed to Strep or exposed to those who have been vaccinated with Flumist, for example. Unfortunately, the history of funding for autism research via NIMH stresses GENETIC studies with minimal dollars invested in immune/autoimmune issues.  How is that possible?


Both Autism and P.A.N.D.A.S. share a family background of autoimmune diseases including Rheumatic Fever, a Streptococcus induced illness. Neuropsychiatry Online, PediatricsNIHPediatrics Digest .  This study in Clinical Psychiatry News, discusses the evidence that "It’s likely that innate immunity plays a role in PANDAS..... indicative of macrophage activation, a key component of innate immunity."  Interestingly, Autism also shows  evidence of macrophage activation and a connection to innate immunity.

 
That same P.A.N.D.A.S. study also brings up a fascinating and pertinent avenue of research - ..."in animal models of familial autoimmunity, interleukin-6 blockade diminishes pathologic behaviors in the treated offspring.." To fully see these connections, here is a nice summary of IL-6 as it relates to both P.A.N.D.A.S. and Autism:

Interleukin-6 and chronic inflammation

"Interleukin (IL)-6 is produced at the site of inflammation and plays a key role in the acute phase response as defined by a variety of clinical and biological features such as the production of acute phase proteins. IL-6 in combination with its soluble receptor sIL-6Rα, dictates the transition from acute to chonic inflammation by changing the nature of leucocyte infiltrate (from polymorphonuclear neutrophils to monocyte/macrophages). In addition, IL-6 exerts stimulatory effects on T- and B-cells, thus favoring chronic inflammatory responses. Strategies targeting IL-6 and IL-6 signaling led to effective prevention and treatment of models of rheumatoid arthritis and other chronic inflammatory diseases."

This appears to show that research and treatments aimed at reducing inflammation to be key.  Coincidentally,  Donald T, Case 1 in the infamous Dr. Leo Kanner paper of 1943,  as reported by Blaxill and Olmsted in their superior, investigative book, The Age of Autism Mercury Medicine and a Manmade Epidemic  was diagnosed with rheumatoid arthritis and following treatments with gold salts, had a remarkable recovery in BOTH his Autism symptoms and the acute rheumatoid arthritis.  These are facts that directly link even the first cases of Autism to what we are seeing today -- children who appear to develop anxiety + OCD +"odd" behaviors = mental illness,  which then is reversed when the immune system + targeted medical interventions = treating the underlying immune/autoimmune illness.

Some examples of factors that can cause IL-6 release shown in Autism studies:

Mercury induces inflammatory mediator release from human mast cells.

"HgCl2 stimulates VEGF and IL-6 release from human mast cells. This phenomenon could disrupt the blood-brain-barrier and permit brain inflammation. As a result, the findings of the present study provide a biological mechanism for how low levels of mercury may contribute to ASD pathogenesis."


Immunosuppressive and autoimmune effects of thimerosal in mice

"....we found that IFN-γ and IL-6, but not IL-4, is important for induction of ANoA ( Antinuclear Antibodies ) by thimerosal."

 Detection and Sequencing of Measles Virus from Peripheral Mononuclear Cells from Patients with Inflammatory Bowel Disease and Autism

"....we have carried out the detection of measles genomic RNA in peripheral mononuclear cells (PBMC) in eight patients with Crohn’s disease, three patients with ulcerative colitis, and nine children with autistic enterocolitis....One of eight patients with Crohn disease, one of three patients with ulcerative colitis, and three of nine children with autism, were positive. Controls were all negative. The sequences obtained from the patients with Crohn’s disease shared the characteristics with wild-strain virus. The sequences obtained from the patients with ulcerative colitis and children with autism were consistent with being vaccine strains. The results were concordant with the exposure history of the patients.....In addition, it has been reported that the persistence of measles virus in human cell lines is associated with enhanced production of IL-6"

More considerations:

Role of Chronic Bacterial and Viral Infections in Neurodegenerative, Neurobehavioural, Psychiatric, Autoimmune and Fatiguing Illnesses: Part 2

IL-1β and IL-6 in community-acquired pneumonia: Bacteremic pneumococcal pneumonia versus Mycoplasma pneumoniae pneumonia

IL-1β and IL-6 in community-acquired pneumonia: Bacteremic pneumococcal pneumonia versus Mycoplasma pneumoniae pneumonia

Autoimmunity induced by adjuvant hydrocarbon oil components of vaccine

There is much overlap in Autism and P.A.N.D.A.S., and though discussing these issues that connect them may be controversial to some, it is nonetheless, imperative to investigate how to help these very sick children and to prevent the process in others.  As Dr. Insel's website states:

"generating the knowledge needed to understand, treat, and prevent mental disorders"

 Teresa Conrick is Contributing Editor to Age of Autism. (Thank you to Adriana Gamondes for the image.)

Comments

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CD

Samime,

Hang in there! It does get better. Every kid is different and healing times vary. Best thing you could do is get with a leading expert clinician in PANDAS and don't stop at one if you haven't seen full improvement. One place to start is the PANDAS network website. Also the PANDAS facebook groups are invaluable. That's where you can learn the most about clinicians, latest treatments etc....most are closed groups but you can be added via invite. Here are two of the most active groups-- https://www.facebook.com/groups/pandasparents/ and https://www.facebook.com/groups/PANDASParentsGroup/.
Good luck!

Samime Baldini

Please anyone, how long till they start going back to normal, my 21 year old has been diagnosed, its been 2 months, shown improvement, but it has been a living hell.

Kim Housley

Such good information in the article and comments. Just learning more about PANDAS, since metal detox/parasite cleanses seemed to uncover classic symptoms for a few in my family. Just FYI, I know a group of moms who are successfully using YL essential oils to treat PANDAS. Great way to protect your gut flora. Blessings and prayers to you all in your journey.

Heidi Hamilton

Hi , my 10year old boy with moderate to severe autism has all of a sudden presented with extreme OCD and almost manic behaviour, I initially thought it was just another awful stage of his Autism, Burt after reading this site I am becoming convinced that he may have PANDAS, he is usually very loving and easy to be around, he is becoming increasingly agitated and violent Stimson are aprt of the OCD as well, any thought please ? He is also unwell a lot of the time and I have always been very concerned about his immune system.

Benedetta

Dale,

I have been giving mine N Acetyl cysteine.
I think that is a kind of methylated sulfur -- three hydrogens on a carbon - stuck on a sulfur (I think).
There are tons of research on pubmed about it.

It is Anti tumor
It is the only known thing to help in overdose of tylenol.

Is ths organic sulfur better than that?

Maybe that is what is so good about fermented cabbage, and fermented foods they all have been raving about over at Mercola's website and other places?

Dale Komai

Sourced from Patrick McGean's comments originally posted on Natural News and reposted on Organic Sulfur For Health.

http://bit.ly/11ooLYi

Organic sulfur is a crystal food that has returned 19 autistic kids to their mothers. Autism is the result of heavy metals in the blood brain barrier. Mothers who tell us their 2 year old was the smartest kid until their 2nd year vaccination when they got lost in their own minds. All of this "funny kid" syndrome - could it be from vaccines?

The cause of the entire Autistic Spectrum are heavy metals, especially mercury, which was first reported by a chemist when his son became the first autistic child. In 1954 they took the sulfur from our diet. Since then, we've watched the Pied Piper of pHarma take the minds of one child at a time with no sulfur in our food to sulfate the mercury, lead, and aluminum out of the body. Sulfur can not be stored.

Life, liberty and pursuit of happiness depends on you knowing who you are. Add a teaspoon of organic sulfur to your diet twice a day and see what happens to your kids and your folks.

Patrick McGean
Director Cellular Matrix Study
Body Human Project est. 1999

Benedetta

Anne
This study was done with piglets that had been weaned early.

http://www.ncbi.nlm.nih.gov/pubmed/20345096

Here is one on Guar Gum
http://www.ncbi.nlm.nih.gov/pubmed/12729015

And another one

http://www.ncbi.nlm.nih.gov/pubmed/10664849

Benedetta

Anne;
My sister-in-law is in her 40s began getting pneumonia three to five times a year.

Immunology tested her and found that she is not producing IgGs - that is the part of the immune system that IVIG provides.

She received treatment for several months and then stopped the treatments for almost a decade, but this year she again came down with pneumonia and the immunologist told her that for the rest of her life she should take IVIG treatments once a month.

She is so very worried about the price of this treatment.

I don't know what she is going to do.

I did not tell her; I am not sure??? but IVIG might have aluminium in them also?

So to me that makes it between the Devil and the Deep Blue Sea!

There are some research that indicates certian fibers in the diet make mice produce more IgGs.

Rice bran and Guar Gum seem to make the body produce IgG but not wheat bran, not so much!

I will try to find those.

I know what you mean about one strep infection after another. My daughter was 18 - 19 - and it was one strep after another and I believe she also might have come down with mono -- we don't know, but she stayed in the bed and slept 24 hours at a time for a whole semester of college. She finally just withdrew from all classed for that semester. It kind of reminded me more of fatigue syndrome.

Sorry my blog seems to have no end.

Anne

Has anyone done an IVIG for an older kid? My son is 17 and we've fought strep for years. He is on a daily dose of antibiotic. We are seeing an immulogist this Thursday to see why he keeps getting infections. Any advice would be greatly appreciated.

Fever

Asperger, Hans . ''Postencephalitische Persönlichkeitsstörungen'' Münch. med. Wschr. 91, 114—117, [1944]

Debbie Preisler

I stumbled on this website and have been reading through all that is written...I need more info! My daughter was diagnosed with PANDAS in November 2009 at age 20 after a year of testing, doctors and more doctors...drugs and more drugs..We have been on antibiotics since '09 and had an IVIG in May 2010..things improved after about 6 months and seemed to be cured for about a year...but now many of the symptoms are returning..not as severe as in the beginning (which started literally over night) but we definitely have days when she can not function normally.

What has caught my eye that i had not seen before leads me to think i need to investigate more family history. I have a nephew with severe Crohns - my grandmother had severe rhuemetoid arthritis - My husband and I both have low vitamin D and are taking prescription strength supplements.
We are in texas and the dr we are seeing for PANDAS is in Illinois. He thinks we should try the IVIG again...major decission since it is not covered by insurance because it is "Experimental"..and at about $15,000 will it work this time?
So i am looking for ideas, treatments...etc...

Valerie

The more time wasted by doctors disputing what is true or not true, the longer our children go untreated by a medical system not equipped to 'fix' them (as much as can actually occur).

I found a psychiatrist willing to run bloodwork, tests, etc on my son to find out more about why his adrenal glands are not functioning correctly, and very low vitamin D even after 5,000 iUs 5x/week, (both of which we found through bloodwork). We are in the process. I have to drive an hour to see him and spend even more time on the phone trying to get authorization for and schedule these tests. It has been a few months and I feel like I'm trying to get out of quicksand here. Wouldn't it be nice if my son's pediatrician would do all of this for me? If only.

The medical profession really needs to merge with nutritionists and dieticians in order to make this possible and start training the next generation to at least look into children with these problems. Any info on how to find another doctor to help me with this or any tests to run would be appreciated as well.

My son shows obvious signs of OCD, stemming, anxiety, speech delay, sensory issues. He is almost 10 years old. He is classified PDD-NOS by school boards, but no official diagnosis.

Managing Editor

Jessannie, Annica - nice try.

Benedetta

HEY!!!!!!
Jessica must be one of those that are from the Kawasaki's website I was banned from. Probably run and operated out of that Boston's children hosptial????
They constantly told me that I was acting like a doctor for mentioning that there was research that said Kawasakis messed up lipid metabolism, and thus we all might try a low carb diet to see if we could get our children's legs to stop hurting.

They constantly said that I was not staying on the subject -- no matter what the starting blog was about ---- I was never on subject???? The blog could begin with "What are the lasting effects of Kawasakis"

And some parents would write in that their kids were irritable, grumpy,learning problms, mood swings long after Kawasakis ---we were off topic - since our complaints were about more than than the heart.

Jessica what are your credentials????? What is your educational background?
What do you do for a living?
Who do you work for?
What is your life experiences that it includes "everything" about PANDAS????

Teresa Conrick to Jessica

Hi Kim,

I think Jessica's comment was to me since I have been writing about PANDAS and our experience. I believe that Jessica also wrote another negative comment to me on the last article I wrote about PANDAS.

This was my comment then to her and I think it will work for this one too-

"Jessica-

Your comment- "I think its really important not to write things like this. Autism and PANDAS are two VERY different diseases. The basal ganglia region is in part responsible for speech so if that area is under attack then obviously speech will be a problem...but once the attack remits it wont be. In Autism speech hasnt developed at all." -

is just not accurate at all. The basal ganglia is very involved in both of these disorders and "In Autism speech hasnt developed at all." - is absurd.

How will we ever stop regression of healthy children if we don't look for the medical issues? Not investigating or writing about it will keep everyone in the dark. Your idea of censorship - not writing about it - is disturbing.

Managing Editor

Jessica, how insulting to Julie Obradovic who has done countless hours of research for her daughter. When I contacted my pediatrician about my daughter's PANDAS she had heard of the diagnosis but asked ME to provide any information I could. She was happy to help me, but had NO knowledge of how to treat or what to do. Next time you visit, please bring better manners.

Jessica

I really think articles like these can do a lot more harm than good. It generalizes. It doesn't take into account genetics. It ridiculously simplifies two incredibly complex diseases. It should be left to doctors to publish information about PANDAS & Autism that the general public sees... not a mother of an incapacitated child with clearly no medical background.

Anonymous

I'm posting anonymously to protect my daughter's privacy.

When our eldest daughter was 7 years old, she suddenly developed high anxiety focused especially on two issues: choking on food, and fear of fire at school.

Her autistic brother has always had a strong gag reflex and difficulty in chewing his food properly, so he was very resistant to solid food. One day (before GFCF) he was eating Ritz bits crackers and filled his mouth too full and started choking. We had to help him empty out his mouth and clear his throat.

Suddenly our neurotypical daughter was afraid to eat anything but purreed foods and liquids. She would eat yogurt but not the sprinkles, lasagna only if it were pureed.

At the same time, at school they had several fire drills because they were having problems with the alarms. She became convinced that the reason for the drills was that there was going to be a fire at school. She was terrified. All rational arguements had no effect. There had never been a fire at school before. The drills were just for practice. She was in a bungalo, so in the unlikely event of a fire it would be easy to exit. Most of the building materials are not even flammable. But her little friend told her that fires can travel as fast as cars.

She did not want to go to school without me. I changed my work schedule so that I could drop her off myself instead of our babysitter. Every day it was hard to say goodbye. She saw the school counselor, and a friend's mom who was often at school helped to reassure her, but it was a constant struggle.

And the odd thing is, she was and is such a strong, competent, sociable person, an excellent student with lots of friends and great leadership skills. Yet she had these intense irrational fears.

We took her to a psychologist who after talking to all of us (together and apart) said that our daughter did not have any big issues that needed discussion, that the problem was biochemical, and that she should be on medication. She gave us the name of a psychiatrist who could prescribe anti-anxiety meds.

We thought about it, and although we didn't know much about it at the time, we didn't feel comfortable putting a 7-year-old on med (thank goodness!) We found a counselor and I took her once a week for counseling (in addition to her time with the school therapist). Certainly there were issues to discuss, as our son had a major level of mental impairment and there were stresses on our family. After something like nine months the counselor told us that she didn't think our daughter had any emotional issues that needed continuing treatment, and that she (the counselor) had talked to a friend who said that our daughter was just trying to get attention. This made me mad because I am quite sure that her anxieties were intensely real.

I have been reading about PANDAS with mild interest because it didn't seem like something that related to our son. But I recently read that separation anxiety and anorexia related to fear of choking (rather than to body image) are common in cases of PANDAS. Our daughter is 21 now, but I am going to have her request a copy of her medical file from the pediatrician. I really wonder whether this episode was preceeded by a strep infection. I remember one time when she had a bad outbreak of cold sores which suddenly became infected. Could that have been a strep infection? I'm curious to find out when that was, as I don't remember.

Over the years, our daughter has continued to have a tendency towards anxiety, though still so successful socially and academically. During her childhood she also had a tendency to get a sore throat during periods of stress over for example a performance or competition. Could that have been from chronic strep? I'm wondering.

It's important to note that PANDAS is not only caused by strep, but by the immune system's response. The strep bacteria triggers an auto-immune reaction against certain parts of the brain/nervous system -- perhaps because the immune system has been overly primed by so many vaccines? Vax-injury deniers will say that we just have better diagnosis of PANDA, but I think the reason it has come to the attention of doctors is because we have more of it.

George Fayne

Thank you for all the amazing information. Thank you for explaining this. It's great to learn from the community. Keep up the excellent work. You rock and help so many others who are in the same situation.

Kelly

My passion is Canary Party Principle #6. I advocate for my children. We must know how the immune system works. Pathogens and toxins sound an alarm bell in the cell. If the condition is chronic, it turns off the immune system and more pathogens get in keeping the vicious cycle going. These microbes are able to horizontal gene transfer which wreaks havoc on normal functioning. It is very difficult to get them out. But we have a shot at it if we understand that steroid 1,25D in high amounts turns off the DNA transcription of antimicrobials. When you are told that you have "low vitamin D" your doctor is negligent by not measuring your 1,25D. The alarm bells (inflammation) in your cells are screaming for more 1,25D in a desperate attempt to turn on the VDR, which is one of 52 nuclear cell receptors needed to turn on DNA gene transcription. Over 1000 genes are made with this signal including metallothionein, which protects you from oxidative stress in the first place. Many other hormone receptors are also affected by high 1,25D. Our toxic world (including injecting infants with vaccines) has opened Pandora's Box to an infinite number of ways microbes can do damage to you. We must learn what humans are before we change the environment. We evolved with microbes. We are hosts to vast populations of bacteria and viruses with significant consequences to health and disease. Low 25D is the key; it means 1,25D is high and turning off your immune system. Our toxic world is driving inflammation and calling for 1,25D which is made from 25D. Normal ranges for 25D have been skewed upward because 1/3 of the population has undiagnosed inflammatory disease. The Merck Manual normal range for 1,25D is 20-45 pg/mL. Vitamin D is a steroid not a vitamin. And it acts like a steroid; too much and it turns off the immune system by de-sensitizing the nuclear cell receptor, VDR. We are testing the wrong D metabolite. I have collected dozens of studies linking microbes to chronic disease. Here's the latest that begs us to read between the lines: we are hosts, we have changed the cell's environment, we cannot function normally when organisms horizontal gene transfer with your DNA and proteins. It is beyond complicated. We can spend time bandaiding the millions of pathways that go wrong and some will benefit or we can understand how and what chronic inflammation is and how it turns off the immune system. http://www.sciencedaily.com/releases/2011/08/110830193847.ht

Diana Pohlman

Currently, PANDAS it is being realized is cureable with antibiotics and/or IVIG. That is why the NIMH has a new study on it. My child had a severe onset, normal childhood development, at age 7. It took two years with antibiotics and IVIG to heal him. He is fully recovered now.

Dr. Swedo at a recent Texas A&M conference regarding neuropsychatric issues and infection (info on pandasnetwork.org website latest newsletter) stated that a new name PANS (pediatric acute neuropsychiatric syndrome) is being used to describe flare ups of a psychiatric and neurological nature after VIRUSES or other INFECTIOUS ILLNESSES. There is currently no talk of vaccines.


Anil Minocha

Autism is obviously a heterogeneous disorder with multiple factors involved including potentially an infectious episode that can set off an autoimmune cascade in an otherwise genetically predisposed subject. I believe that disordered gut (gut bacteria, gut permeability etc) lies at the core of many (not necessarily) all of the patients with autism.

paul shapiro

China prepares for big entry into vaccine market
By GILLIAN WONG | AP
http://news.yahoo.com/china-prepares-big-entry-vaccine-market-072555312.html

Nicole

Thank you to all the parents and medical professionals when 2 years ago my then 5 year old starting having severe chorea and extreme OCD within a matter of hours. PANDAS is a constant battle. However, I am so grateful for the autism parent community who pointed us in the right direction and to his wonderful physicians who help us in this constant monitoring.

Karyn

My 7-year old son was diagnosed with PANDAS four months ago. "Regular autism" was a walk in the park compared to PANDAS. The regression and personality change is so hard to see, especially because I know that HE knows something isn't right within himself. Antibiotics seem work really well, but given his history of gut dysbiosis, it's not a treatment option I want for long term. Hopefully insurance coverage for IVIG will work out for us. Another option I'm looking into... camel milk.

Thank you for your work in this article, Teresa! I'm sharing it with family, friends and school staff.

Teresa Conrick

Hi Maurine,

Best thing to do is read Diana's site. She has a lot of valuable/pertinent research and parent reports. I can contact you with some other info, too.

Teresa Conrick

Need to add ..... Please support and join The Canary Party so we can make progress in helping these Canaries - "real political pressure to clean up the corruption in the medical establishment that was allowing bad pharmaceuticals, bad medical practices and bad public health policy to assault human health on such a wide scale."


http://canaryparty.net/

Teresa Conrick

Hi Jennif-6,

I did not mention Lyme in the article as I was stressing the Strep connection but as most of us have found out, many types of bacteria, viruses and even yeast seem to trigger regression and flares. There are others and we all need to band together to get the proper research and treatments for these very vulnerable and sick kids.

Lyme and syphilis share some common characteristics and in the Age of Autism book, we can see how mercury and Syphilis mixed to cause General Paralysis of the Insane. Some similarities here to that process. Thank you for your comment!

Cheryl Gaudino

NON-STOP OCD, rages, tics, aggressions, SIBs, crippling anxiety--oh yeah, and autism--this was my son's life (or lack thereof) before he was diagnosed with PANDAS. Our entire family was in crisis and on the verge of collapse.

After 18 months of IVIG, he is a happy, active, and almost OCD/anxiety-free 15 year old. He loves school. He has friends again. He has a more active social life than I do!

He's doing well now but for his (and our) physical safety, had to be hospitalized for months and lost years to regression because of a very real, treatable medical condition. When will mainstream medicine catch up to the parents??? Frustrating...

Maurine Meleck

This is all very confusing to me. To see and hear my grandson, one would certainly think PANSDAS. Yet, we tried antibiotics for a while and saw no change. I understand there's no test for PANDAS. Is that right? So I really don't know how to appraoch this with him anymore. Are anti-biotics not true test? But IVIG.?
Thanks Teresa. You work is so appreciated.
Maurine

Jennif-6

Thank you for the article, Teresa. My sons have been diagnosed with PANDAS, and most likely lyme(based on low cd 57, vitamin D hydroxy low,and interminate western blot bands,some positive,for lyme) I felt something was wrong for a long time, because of jekyll and hyde mood swing and violent rages that could not be stopped. I first thought it was food allergy. After repeated strep and my own lyme diagnosis, I found an integrative dr who tested for lyme and ran an ASO. The ASO on both boys were in the 700s. Two weeks after the blood work, my youngest son woke up in a panic about school and began displaying ocd symptoms. After tonsillectomy, we have seen some improvement in the OCD. Thank you for bringing awareness to PANDAS and for sharing information and research.

Amy Gfesser

My son is unvaccinated, has a diagnosis of moderate level autism, and has elevated Anti-DNase B levels. Anti-DNase B is also a strep B infection, but I do not think that it is as severe as PANDAS. My 5 y/o son does not exhibit OCD symptoms.

I recently went to a neuro-immmune symposium where Dr. Kendal Stewart, MD spoke. He said that everything that he has learned, he has learned from treating children who have an autism diagnosis. On his handouts, he wrote that Anti-DNase B "blocks" dopamine receptors or just blocks dopamine. He said that dopamine is needed for sensory integration. I think that it is important to mention this in regards to this article and PANDAS. I am not sure if any of the links have citations that link PANDAS to low dopamine levels.

Amy

Teresa Conrick

Hi Gatogorra,

Thanks for bringing up the virus piece. That is true and again, though it may be a subset -- or all -- it needs to be looked at thoroughly. From the PANDAS website- http://pandasnetwork.org/

Are Other Bacteria or Viruses Activating PANDAS Symptoms?
After several months, the autoimmune process is in full swing and the child may negatively react to many viruses, bacteria, URI’s and even chemical compounds like paint or chlorinated pools.

And, herein, lays the confusion with researchers attempting to understand the illness post-PANDAS onset. Many (but not all) of the parents have discussed the fact that after a period of weeks or months of cessation with antibiotic treatment – the child continues to have minor exacerbations. The baseline personality (OCD) and/or physical well being (Tic) of the child has altered and is constantly excited by both viral and bacterial interactions

Also want to add that a study got lost that I wanted to post so here it is to illustrate more on the IL-6 issues:

IL-6 is increased in the cerebellum of autistic brain and alters neural cell adhesion, migration and synaptic formation. http://www.ncbi.nlm.nih.gov/pubmed/21595886

Gatogorra

Teresa-- thanks for covering this. Until you started writing about it a while back, I had no idea PANDAS could also be viral. It explained my daughter avoiding the cracks in tile and the sidewalk last year after a virus, yet the strep tests came back negative. Now we get it-- it could still be a viral PANDAS.

Son in Recovery

Thanks for this insightful article. My 7 year old high functioning autistic son was diagnosed earlier this year with PANDAS. Now that I know his symptoms and trigger signs I can see that he has been fighting this for years. I had brought this to the attention to several doctors 3 years ago and finally stood my ground this spring and asked for the blood test. Mom's diagnosis was right and can I tell you what a different child I have now - even his school is amazed at the progress he is making in mainstream 1st grade. The unfortunate side of things is that he is on a small dose of antibiotics daily to help keep the PANDAS in tact. I know my son still struggles with Heavy Metal issues and an impaired metabolic pathway.... we continue to focus on his recovery and building his immune system. I just wish we had more answers... but just like Autism the charge with PANDAS has been lead by parents.

Benedetta

Strep:
And as reported on the Kawasakis website; Parent after parent complained their kids had strep again and again and again.

That pretty much describes me rising my kids. That strep that there was a cure for, and relieved that this time it was something that could be detected. But then those other fevers that lasted forever that there was no cure for (a virus the docs said) that lasted 2 weeks at a time and left my kids in dark rooms, very sick.

Even my husband some years after his reaction to the Tetanus had sepsis - strep in his blood.

Even after my daughter got older she came home one weekend from college - Sop year -with 104 - we took her to the emergency room and it was strep.

Benedetta

Tereasa:
This researcher (not giving his name since he is trying to get this published and maybe it would not be a good idea for his name to appear on age of autism before this happens) He did help in the book by Mark and Dan: Age of Autism.
"Recently, a single nucleotide polymorphism (SNP) of the inositol 1,4,5-triphosphate kinase C (ITPKC) gene was found to passively confer susceptibility for Kawasaki syndrome (KS) and subsequent coronary arterial lesions. This is believed to be the result of defective phosphorylation of inositol 1,4,5-triphosphate (IP3), which releases calcium from intracellular stores. Defective ITPKC activity would increase IP3 levels, and thus, calcium levels. We hypothesized that an environmental agent which influences IP3-mediated calcium release is potentiated by the ITPKC SNP. This led us to an attractive candidate, thimerosal, an organomercurial medical preservative still used in several pediatric vaccines. Thimerosal is well-known to sensitize IP3 receptors via its induction of oxidative stress"

Another report from NIH said:
"A genome-wide association analysis reveals 1p31 and 2p13.3 as susceptibility loci for Kawasaki disease."

Are these things the same as IFN-γ and IL-6 because I am getting lost here? Maybe they are close at least?

They are saying it is the high current winds out of China sweeping around the Pacific Ocean carrying with it from the very polluted China mercury! Yes, it is being promoted as the newest idea although it was reported here on AOA some time ago.

They also are saying: but I may be mistaken that some people are more suspectable than others to mercury????

But if that is so how come the numbers of all auto immune diseases rising?

kathy blanco

Vicki, my son is thirty and at twenty nine, he was diagnosed by a blood test via Dr Cunningham. He had sudden onset of panic, aggressions, OCD, tics, harsher seizures, sydehams and also has antibodies against his cardiolipin tissues resulting in having a pacemaker implanted because he lost sinus node rhythem, often found in peole who have rheumatic fevers as children. Looking back as you, hindsight, I think he has had this for some time. He often cannot walk because he tics so bad. We have had some relief when we focused on brain inflammation, via baclofan, spirolactolone, minocycline, AKGacid, and even NSAIDS. This is a bigger issue than all of us realize, it's not just pediatric. This is a neurodegenerative disorder, call it autism? No, this is much worse than that description. And, I don't think it's just strep, it's a multipathogenic load, because many of those same kids have lyme, hhv6, retroviruses, etc.

Laurie Cramer

I should add: My son is on IVIG treatments. A MIRACLE for him. We have had fantastic results with IVIG.

Laurie Cramer

So we are not the only ones! My son was diagnosed with PANDAS 3 years ago (also on the autism spectrum). I was told for YEARS that I was "just trying to find a cure for autism" as his medical needs went undiagnosed and ignored. I cried and cried when a leading doctor in Boston (yes, we had to go to a specialist in Boston to get attention) said "lets test for PANDAS." I wasn't the "crazy autism mom" anymore. Great article. Thank you. Laurie/Ohio

Lin

Thank you so much for your continued hard work, Teresa!! This is invaluable information to have!

Patrick

I will never forget finding information on the Good Morning America website about tics and P.A.N.D.A.S.
There is a video about a boy "catching" O.C.D. and I was amazed at the understanding that the Mother has of this condition and how to treat it:
http://abcnews.go.com/Health/pandas-strep-throat-trigger-obsessive-compulsive-disorder-children/story?id=14668292&page=2#.TtOaibnNR5f
I believe the video is on the left hand border labeled 'catching' OCD.

Vicki Hill

My son, now age 24, was diagnosed with PANDAS 14 years ago, His diagnosis was so early in the research on PANDAS that a blood sample was sent to Dr. Swedo for her ongoing investigation into this syndrome.

What I can report to the parents of children with PANDAS today is that the PANDAS symptoms - tics and obsessions - were nearly completely gone by age 18. However, the autism symptoms, which were so mild that he didn't get diagnosed until age 12, became more and more obvious, even to the casual observer. (His current diagnosis is Asperger or PDD-NOS, depending on which professional you talk to.)

In hindsight, I would have focused more on his immune system (known to be weak from birth)and behavioral interventions for the autism symptoms (interventions he didn't get because everyone was focused on the tics and obsessions). Even with Tourette Syndrome, tics tend to become far milder by adulthood. It is hard to convince a parent of a severe ticcer to wait and let 'tincture of time' work its magic. But the tics nearly always go away in time, no matter the treatment. As for the obsessions, the best approach I found was to make him laugh, thereby changing the subject in his head. Don't try to psychoanalyze or rationalize obsessions; that just makes obsessions stronger.

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