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Autism and PANDAS: Parents Knew It and Science Now Shows It

Science post imageBy Theresa Conrick

For years now, parents of children on the autism spectrum have been on the internet and social media sharing their stories.  Many, like me, have had horror stories of their child being sick too often and then abrupt and bizarre behaviors would appear. Strep throat was often a trigger for us.  ---- The strep infection triggers a misdirected immune response causing inflammation within the basal ganglia, a portion of the brain responsible for speech, involuntary movement (tics) and emotion. This inflammation causes an abrupt onset of neurologic and psychiatric symptoms including OCD, tics, anxiety, emotional lability, urinary frequency and sleep disturbances.

While strep is the initial trigger, PANDAS patients can have recurrent symptom exacerbations (flares) later in the disease when exposed to other (non-strep) infections.

We are not crazy.  What we have been living is real and our children are very ill.

Fresh research from my favorite group studying PANS and PANDAS in autism, has their study completed -  and an abstract published - Anti-neuronal and anti-microbial immunity link CaMKII and autism spectrum disorder with pediatric acute-onset neuropsychiatric syndrome .  The full study will be out in late Fall as I had emailed Dr. Cunningham.  She is an awesome researcher and a very compassionate person. She shared that she is involved in similar research, Human anti-dopamine receptor 1 monoclonal autoantibody (mAb) identifies potential mechanisms of neuronal signaling in post-infectious autoimmune-mediated neuropsychiatric disease, and as a result, the full papers are coming out later.  Let’s take a look at the highlights of the asd abstract:

♦  Autism spectrum disorders (ASD) may be associated with neuropsychiatric symptoms such as tics, obsessive-compulsive behaviors, and other symptoms characteristic of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS).

♦  Functional anti-neuronal autoantibodies which signal CaMKII and induce excess dopamine release were found in ASD/PANDAS serum.

♦  Interestingly, a CamKII mutation has recently been associated with autistic symptoms in animal models and also in ASD in humans. https://www.ncbi.nlm.nih.gov/pubmed/28130356

♦   Children with ASD/PANDAS had significantly elevated anti-neuronal autoantibodies by ELISA, and strong IgG responses against the group A streptococcal epitope GlcNAc were observed in ASD/PANDAS.

♦  Our study links three common microbial antigens to anti-neuronal antibody responses in ASD/PANDAS and suggests that molecular mimicry between host and pathogen may play a role in development of the autoantibodies and potentially lead to neuropsychiatric symptoms in ASD/PANDAS.

♦  Thus, ASD may be complicated by anti-neuronal antibodies which can develop during infections and may contribute to the co-morbid symptoms of PANDAS in ASD.

What that means is that PANDAS happens when the immune system produces antibodies, intended to fight an infection, and instead mistakenly attacks healthy tissue in our children’s brains.  Inflammation occurs at the basal ganglia, which causes the behaviors --  abrupt and sudden onset of movement disorders, neuropsychiatric symptoms and abnormal behaviors.  One of the initial episodes for Meg presented with her having severe Parkinson’s-like movements, not eating, frequent urinary accidents, wanting to wear sunglasses in the house and severe anxiety, where she did not want to leave her room.  That was years ago but the symptoms continue and exacerbate with illness still.  Due to her AUTISM diagnosis, many in the medical field ignored our plight and blamed her symptoms and medical issues as, “that’s just autism,” and offered little help or shrugged their shoulders, not knowing how to help.  This line of research is like rays of sunshine finally creeping in after years of darkness for too many families, like mine.  I am grateful for it and hope the treatments that come from it can improve Megan’s quality of life. 

This is important research.  It not only validates what many parents have been seeing in their children for years and years, but helps hasten the changing paradigm of increasing cases of autism being immune-mediated and autoimmune.   Meg, is one of these cases.  Life has been so hard as the autism field has been wrapped up in the DSM world for far, too long.  Treatments for our kids and young adults need to be expanded to the immune and autoimmune world.  More and more researchers are shining a light and my thanks to Dr. Cunningham, Dr. Frye, Dr. Swedo et al.  Tremendous researchers from around the world are combining their knowledge  to help this generation of very sick, young people. Thank you to each and every one of them who wants to improve the lives of our loved ones.










Comments

Cherry Misra

Teresa Conrick, thankyou very much for the clear explanation of PANDAS,

@Grace Green: There is little incentive for most practising pediatricians or other doctors to take interest in autism, vaccines, mercury;, aluminum and related issues. They simply cannot incorporate any such knowledge into their practise, because they must follow their "protocol" for any disorder. New information does them little good unless they have a particular interest. Now that leaves the scientists who may work in areas related to these topics. Life is not easy for them either. If you talk about causes of autism or PANDAS you might have to talk about mercury . You might have to talk about mercury in vaccines. Two powerful entities opposing this are the Vaccine manufacturers and the public health honchos. And if you talk about mercury in vaccines, you might have to move on to mercury in fish. Now you are in trouble with a very big fishing industry. OK, so lets talkabout the mercury in teeth. NO , maybe that is not a good idea either, The powerful people who manufacture amalgams and the American Dental Association will not be pleased. So, in the end, maybe lets just not talk about mercury, vaccines, aluminum, autism, PANDAS,
Lets just watch the Warriors play, go out to buy special ice creams, celebrate the Fourth of July and eat at MacDonalds and go for our too numerous to mention doctors visits and all will be well with the world.

Mary Maxwell

Holy wow. Holy, holy, wow.

Jeannette Bishop

"The strep infection triggers a misdirected immune response ..."

After viewing Dr. Humphries lecture on potentially invasive bacterial diseases and tonsils and the Waldeyer's ring (Cal Jam 2018), besides getting a general picture that we don't really know what we're doing at all with the bacterial vaccines (and maybe the viral vaccines weigh in too) attempting to prevent potentially invasive outcomes by trying to eliminate bacteria (via vaccination in a limb with adjuvants likely to mainly provoke a strong response from the antibody arm of immunity) that commonly reside in our throats, I'm wondering if we should be crediting the act of vaccination, maybe particularly this class of vaccines, for setting up this "misdirected immune response?"

Though I also suspect generally use of adjuvants that provoke and make immune cells toxic, probably triggering cascading immune activity wherever these toxic cells are called upon to travel to "help" with a problem.

Anna Quandt

Thank you. I appreciate your ability to do this research and bring it to us.

Benedetta

Once upon a time I met a lady at the health department with her daughter in law and baby. The daughter in law was on seizure meds. I struck up the conversation and she told me that her son married to this daughter in law she had brought into the health department also had seizures from his DPT vaccine. She said that he no longer had seizures though, just panic attacks.

Fast forward; my son forgot to take his seizure meds this past spring had one heck of a panic attack that took me holding him close for a while till it was over. So is that a symptom of anxiety you think, or a seizure presenting as a panic attack? My son's seizure medicine Keppra dampens the immune system a bit, it can cause hei

My husband has vitiligo, pretty much all over his body.
If he gets a minor scratch, some times; when it heals there will be no pigment that returns to the injured area..
A friend visited, yesterday, and her vitiligo is getting worse on her hands.
My husband told her that he thinks he loses his pigment at areas of minor injuries, some times; when there is a bit of infection too. The immune system attacks not only the invading microbes, but the pigment of his skin too.

I think that he is very much right.

His sister's immune system cannot fight off anything much, and had pneumonia year after year for a very long time. She was put on a constant low dose of penicillium for a long while. Now she goes in every so often to receive a slow drip - all day long of IgG. She has mythensis gravis - not genetic, but the IgG helps a great deal. They have great insurance, since he worked as a state forester for decades. IgG treatment is sky high expensive.

We lost our friend and neighbor this past Christmas to an lung infection, that went sepsis. They called it lupus, but what ever it was; his skin turned purple when it was on bit cold outside.

Movement disorders is what my son had after his vaccine; like a stroke victim. .

My father takes the caradopia, levodopa -- dopamine medicine. He is slowly coming back to his baseline before he was giving zyloft, a month ago. But it is not just some kind of psych med that will do that to him, because any kind of infection makes him so much worse and he goes stiff as a board. This Parkinson came on shortly after resuming his yearly flu shots. The first couple of flu shots he every had I am pretty sure lead to his first heart attack, and caused him to miss a few flu shots. Especially since my mother was telling him to not get them.

Speaking of my Mother, after her flu shot vaccine that put her in the hospital, again and again all year long with episodes of pneumonia developed stomach problems, recurrent bladder infections and an over active bladder. She has these episodes of bladder irritation and they have a nice little med to calm down those nerves too. Oxybutynin is used to treat symptoms of overactive bladder, such as frequent or urgent urination, incontinence (urine leakage), and increased night-time urination.


They can claim all they want that we have some kind of mutation going on in our immune systems. Please do, so we can get that research done and published, and then as an expression my grandfather used - Lower the boom on them.


There are people that really, really need to go to prison over how they have behaved in this decades long march to human extinction.

Gary Ogden

Thanks, Teresa. Fascinating, important research.

Grace Green

Another important step on the way. Of course, it's been known for a long time that M.E. begins after an infection (and also can be exacerbated by an infection). Andy Wakefield has said that M.E. is adult onset autism. In my case, I believe an infection finally made my life-long autism apparent. But why has it taken so long for the rest of the medical community to get their brains around this?

sabelmouse

my daughter developed insomnia and anxiety at 16 after a bad '' cold'' /flu, i always wondered.

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