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Thank You To A Caring Mom On FB : PANS Is NOT Pediatric

Pandas T shirtBy Teresa Conrick

For those who have been following my daughter’s journey from vaccination to increased bacterial and viral illnesses, then AUTISM to Seizures, then a PANS diagnosis (Pediatric Acute-onset Neuropsychiatric Syndrome) to her recent diagnosis of Nonfamilial Hypogammaglobulinemia, please check out this story I need to share.  Its origin is a FB post I came upon from a group that I visit.  The author gave me permission to post as she truly wants other parents to know about her family’s plight, so no other family will live this horrific experience. There are almost 15,000 members of this group and we are all parents of PANS/PANDAS kids.  The reality is that PANS is NOT a rare diagnosis and it is NOT JUST PEDIATRIC.  It also seems that the cute PANDAS label has not helped in the urgency of this disorder -- as the researchers and doctors at a recent conference were stressing this change to PANS/PANDAS --  “Now referred to as autoimmune encephalitis” 

The diagnosis can start at a young age but there seem to be more and more parents with older children as well.  Add in that many children with an autism diagnosis may have had PANS,  that was not diagnosed early or they developed it as time went by, as most have immune issues that can worsen.   The reality too is that there is no one treatment, medication, or cure that universally helps each patient in the same way. Things can change though and as more parents became vocal, the research grows and shows that this is a heart - breaking disorder. It can be acute, chronic, and life-threatening.  More treatments can be found and made for this population that continues to multiply.

This brings me to where many are now, a child, teen or young adult, who is very ill, with a body that is not working properly as immunological, neurological, and behavioral symptoms take over.  We are talking vocal tics, body tics, motor and sensory abnormalities, enuresis  obsessive-compulsive behaviors, anxiety, depression, irritability, aggression, emotional lability, auditory or visual hallucinations, as well as violent imagery, and suicidal or homicidal ideation, regression of skills, severe restriction of eating, and severe oppositional behaviors. Using the word PEDIATRIC is not helpful.

Here then is the post from a mother who took the time to read and answer 107 comments and with genuine care about other families.  This is what I am so grateful for -- the parents who want to help other families:


I would like to share a horror story of our 18 year old Pandas son when he went away to college. I hope this will help another parent from going through what we did. .. my son had a melt down at school and was spinning around , had tics and starting hallucinating. He never had done this behavior before. This came two months after receiving the required meningitis vaccine. He was never diagnosed with anything except PDD when he was a toddler through 10th grade. He never should have gone into the ER that day at school ... he thought they were going to help him and instead they took our rights away as parents because he was 18 and locked him in a mental institution for 3 months and held him down and injected him with all different antipsychotic meds .......... ( might I add they didn’t work ) ... he was so sick , pale , thin and broken , eyes were yellow ... we had to fight to get a power of attorney for health care for him to get him out. He got out with severe PTSD . We were able to get him in with a wellness Dr in our area who diagnosed him with Pandas , a severe food allergy to peanuts and gluten. He also had Mono/ Epstein Barr . With the grace of god he is now being treated appropriately. The conventional doctors out there are not open to the Pandas diagnosis and are not willing to find the root cause of illness. They want to bandage them with psych meds... some side effects of those can exacerbate a pandas symptoms so beware . Why I posted this is because make sure when your pans / panda kid turns 18 you have them sign a medical power of attorney just to protect yourselves . I hope this helps others because our journey the last 2 years has been a nightmare. My son had to drop out of school for now but is being treated with antibiotics, diet control , prednisone and supplements. I am very grateful we found the right drs to diagnose and treat the right illness. Love and prayers are sent to all parents who are going through this with their own kids. ♥️ Please get your medical power of attorneys signed ASAP. My faith keeps me strong and my Pandas kid has taught me resilience on this journey together.

Thank you, “Caring Mom” for reminding all the families that our kids may never be entirely out of the woods as far as their immune systems go and being able to help in their treatment into adulthood may be very necessary.  Let’s look at some other factors in that posting:

  • Her son had a PDD diagnosis in his younger years but eventually went off to college, which was great but what happened also showed that his immune system continues to be fragile.
  • He received a Meningitis vaccine and within 8 weeks,  developed neuropsychiatric symptoms with tics and hallucinations. He never had those symptoms before. Meningitis vaccine has been associated with tics. The meningitis virus can cause hallucinations.
  • Is it possible that vaccination can cause a cascade of events leading to encephalitis and autoimmunity ---?  Yes, it is possible.
  • They had no control over what happened to their son. He was taken and treated medically and psychiatrically without their permission.
  • Hospital medical staff and psychiatric staff did not properly test or diagnose him.
  • Psychiatric medications worsened his condition, which happens often with PANS/PANDAS patients as these patients “appear to be more sensitive to adverse effects of psychotropic medications.
  • His ultimate, correct diagnoses, “Pandas , a severe food allergy to peanuts and gluten” - these are more clues to his symptoms, the condition of his immune system, and the neglect of the ER medical team and then the psychiatric team.
  • There are good doctors who are knowledgeable and treat these patients but more are needed.
  • Know your rights if you are not guardian to your adult child with either an autism diagnosis, PANS/PANDAS (autoimmune encephalitis) or both.
  • Thanks to all of the families who support each other.  Our children and adult children deserve proper care and we must be vigilant in making sure that happens.

    Teresa Conrick is Science Editor for Age of Autism.



    Martin? This ACE energy pathway? I am not sure what that is?

    So it is not from food, it is not ATP production, it is not photosynthesis, but the movement of atoms? Is that basically it?


    W John Martin, MD, PhD.; "The suppression of these viruses through the alternative cellular energy (ACE) pathway". Which would be the way that chicken pox is suppressed.

    Many people are thinking that viruses are picking up DNA from Strep bacteria?
    The type of Diphtheria bacteria; that really caused the human body to produce more mucus than normal, was infected by a virus. So, maybe it is the other way around and strep infected by a virus is receiving additional genetic material to cause pandas?

    How many times is this happening in the microbe world? All the time?

    One thing for sure; for my family; after a vaccine and only after a vaccine; mitochondria "energy production of most of the ATP" had a wrench thrown in the cogs and did not work very well at all. Perhaps that is another area to ask the questions of how vaccines are causing this problem to begin with would then maybe answer why energy pathway's are no longer able to suppress viruses?

    Most of it seems to be the oxidation phosphorylation on the complex 1 and 3

    Jenny Allan

    W John Martin, MD, PhD "While autoimmune encephalitis can be a consequence of infection with stealth adapted viruses, it is more productive to focus on viruses as the primary causal agents in the growing prevalence of neurological diseases in adolescents."

    John your work is fascinating and very much needed. At the moment virtually all the research into vaccines is concentrated on 'debunking' vaccine links with autism. Huge money has been wasted on attempting to find an 'autism gene'.

    Historically, the sheer folly of injecting small toddlers with three or more live viruses at once, will be recorded by historians, although the way we are going there will be no-one left to record. Viruses interact with each other and there is a delicate gut balance between viruses and bacteria. My autistic grandson received the MMR vaccine whilst on antibiotics for a respiratory infection. He still has huge problems with his guts; this problem now officially linked with autism. Our bowel systems and biozones are now acknowledged to play a huge part in our immune systems. Vaccinating sick infants is madness, particularly those on antibiotics which clear gut bacteria, (but not viruses).

    Please keep us posted about your research which sounds very promising. If we can pinpoint the causes of vaccine damage then we can devise ways to immunise without harm. It is notable the single measles vaccine, in UK use for 20 years prior to the introduction of MMR, was linked to gut problems but not neurological ones.


    Autoimmune encephalitis can be just a consequence of the immune system's reacting to the invasion of foreign substances in its territory. Dr. Moskowitz said that autoimmunity is part of the inherent nature of the vaccination process itself, and I agree. He refers extensively to his mentor Yehuda Schonfeld, the world authority on autoimmunity, who compiled the anthology Vaccination and Autoimmunity. Merck recognized in the Merck Manual that encephalitis can be caused by a viral infection or by a vaccine, any vaccine, and it is known as vaccine encephalitis.

    I do not dispute that stealth viruses exist, but it would be a mistake to try to make them responsible for all or even most cases of vaccine encephalitis.

    W John Martin, MD, PhD.

    The description of PANDAS as a consequence of Streptococcal bacterial infection was an unfortunate distraction to published work, which indicated the incorporation of bacterial DNA sequences in stealth adapted viruses (Martin WJ. Bacteria related sequences in a simian cytomegalovirus-derived stealth virus culture. Experimental and Molecular Pathology 66: 8-14, 1999.) I coined the term viteria for this interesting phenomenon. While autoimmune encephalitis can be a consequence of infection with stealth adapted viruses, it is more productive to focus on viruses as the primary causal agents in the growing prevalence of neurological diseases in adolescents. There is a Public Health responsibility to acknowledge the existence of stealth adapted viruses and to participate in studies showing the suppression of these viruses through the alternative cellular energy (ACE) pathway. Public discussion on stealth adapted viruses and on the ACE pathway would be useful.

    Carolyn Scaredalyn

    I just want to point out one of the challenges we face--due to the changing vaccines and changing ingredients and schedules, we can't even follow patterns. For example what happened to my child born in 2001 (and I had RHOGHAM and flu shot while preg) is not the same as what happened to yours at 2004 with diff preg story, diff schedule, etc. Poisoning is in the dose, and in the genetic response. Then you throw in diff lots of vaccines contaminated with God knows what.

    This is a horrendous scream.

    I have seen several brilliant family members (huge extended family) fall apart after the shots they got to go to college. These were kids who were not on the spectrum. They all had to come home. They were girls. Thier parents kinda believed me about my son, but got their kids Gardisil, meningitis, etc anyhow. They kind of smugly reacted to my warnings. It breaks my heart. They can't undo this.


    Is PANDAS test still unreliable in detecting Strep and possible PANDAS?

    My daughter did work at a mental hospital. The staff and doctors there were better than what she had as her mental health provider, thank goodness. Because she worked there they talked to her mental health provider -- strong armed more like it, into getting her off some psych drugs. But this hospital did do medical test for those coming in to see if they had thyroid trouble, UT infections, and I thought she said Pandas too?

    Goodness knows though, not all in this mental health field is up to date, and none seem to be looking at real research? When my daughter left there, they were going to restart doing electric shock treatments on some patients?

    Maybe it does work? My best friend's Dad had a stroke, and then went into deep depression, and tried to kill himself many times over. They finally did electric shock treatments on him and he got better? That or maybe he just needed time? He later died of a stroke, out in the field checking on his cattle. He was the math teacher of the county, and tutored after school in his home, for free many of a student; even when they went off to college and returned needing his help.

    I have so many thoughts on this.

    Another random thought, I have so many, and I am so sorry; but so many of my daughter's patients came down with shingles while under her care. She took care of children and young adults, and not the older patients. Once you have chicken pox, the immune system subdues the virus, but it still lurks within us. So shingles is a sign of a weakened immune system. How do you make a vaccine for shingles when it is all about a weak immune system? Is the vaccine really going to make a stronger immune system by putting more of the chicken pox virus along with tons of toxins into you? Is that vaccine really going to make a sick immune system aware of that virus again? On the shingles vaccines insert it says something on the order of: For every decade you are over 50, the shingles vaccine will fail (they say) 10 percent. How about it never worked to begin with, but we are saying it did, and if you get shingles anyway; after receiving the vaccine; well --- well --- they told you there was a chance it would fail, so they are covered. I got to get my 90 and 95 year old parents some vitamin D pills--- the days are short, and they are not going out at all right now. Another random thought.

    Oh, Tereasa did the IgG treatments help at all?


    I can very much relate to this story. My son who is now 18 suffered with PANDAS when he was 4-7 years old. He has the Methylene tetrahydrofolate reductase (MTHFR) mutation. He had everything listed on your t-shirt including intermittent paralysis (Guillain-Barre syndrome?). When his tics/sensory issues/seizures began they put him on several combinations of psychotropic drugs which of course made his condition much worse. One such drug that was always in the combination was called depakote which is known to deplete vitamin B and folate which MTHFR mutation children have issues with so it was no wonder his health went off the deep end. He also had a few allergies of which his severest is milk protein. I consider the biggest threat strokes. There were points where he couldn't lift his arm to eat, sit up and times he couldn't move his legs. He also had bouts of stabbing head pain. He is for the most part recovered. With the help of a chiropractor we did tests for heavy metal and a 2 week detox. I also put him on a diet to help with the issues he has due to the MTHFR mutation.

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