Pediatric Autoimmune Neuropsychiatric Syndrome (PANS) or Autism?
By Teresa Conrick
If there is one topic that has been increasing in the autism world, it is the issue of the immune system. To explore that further, the explosion of the microbiome research has been just phenomenal. The connection from gut to brain and more specifically, from microbiome to microglia, supports the research I keep pointing out. It is not genes that are causing the increasing cases of autism but what appears to be a drastic change in the bacteria of the gut, the infections of the immune system. There are factors that are causing this to happen. I wrote about my daughter Megan and this connection nine years ago -- :
This brings me to the faded piece of paper I had found recently in a pile of lab reports done on Megan starting in 2000. It was a late night time-line of her health history that I had copied down from her medical chart then as we had just exited the pediatrician that was her main doctor since birth..... our kids are medically sick, not mentally ill, and that should be the focus of research regarding causation and treatments of autism.
Here then is a look backwards, a painful window of time when my daughter's health was telling us that something very bad was happening. These are the notes written by the doctor and staff for the office visits we had.
3/2/93 - Birth - Hep B at hospital
3/26/93 - VACCINES
5/21/93 - VACCINES
7/10/93 - VACCINES
9/10/93 - VACCINES
10/22/93 - VACCINES
12/7/93 - Diaper rash (YEAST) for 6 weeks - ear infection - antibiotics
12/28/93 - Ear infection - antibiotics
1/17/94 - Ear infection -antibiotics
3/21/94 - Virus - antibiotics ( This was a routine practice then - antibiotics as miracle treatment for ALL illnesses)
5/11/94 - Virus - antibiotics
6/3/94 - Loose stool - rash - ear infection- antibiotics
6/18/94 - VACCINES (Including MMR)
6/28/94 - Fever- rash on body - ear infection - antibiotics
7/11/94 - Ear infection - antibiotics
8/22/94 - On vacation in WI and became sick. Not happy - crying - lethargic - Dr. there unsure of the cause.
9/9/94 - Rash - loose stools - VACCINES
10/17/94 - Vomiting - diarrhea
11/1/94 - 103 fever - virus
5/23/95 - Irritable - nosebleeds
10/9/95 - Not talking - PDD dx - to specialist
11/27/95 - Temp. - not eating/sleeping - ear infection - antibiotics
12/19/95 - 103 fever - crying for 2 days - ear infection - antibiotics
12/21/95 - Waking at night - crying - acute bowel - Donnagel
12/28/95 - Re-check - right ot media - antibiotics
1/25/96 - Ear infection - antibiotics
2/8/96 - Re-check - unhappy- crying - nosebleeds - antibiotics - nosespray
2/29/96 - Check up - nosebleeds x5 - iron for anemia
3/26/96 - 104 Fever - Zithromax
4/8/96 - Re-check - pulling on ears but no ot media
4/23/96 - Waking at night - no ot media - "sleep problems"
6/10/96 - 2x nosebleeds - 102 temp - nose spray - antibiotics
6/26/96 - Fever - antibiotics
9/3/96 - Poor appetite - antibiotics
10/23/96 - Pharyngitis - severe - temp - antibiotics
1/4/97 - Congestion - cough - antibiotics
3/4/97 - Pulling on ears - Claritin
3/10/97 - VACCINE
5/9/97 - Rash on face - allergy?
5/13/97 - Swollen finger - antibiotics
7/29/97 - Not eating well - nothing found
8/7/97 - Rash on back - irritable
9/8/97 - Fever 3-4 days - rash on face - virus
3/19/98 - Diarrhea/vomiting x 10 days - fever on/off - antibiotics
And this continued on and on. Interestingly, immune issues in autism vary from being sick often or rarely being sick but the research is lacking. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection) is now seen as a medical illness manifested into tics and obsessive compulsive behaviors yet our children's labs showing similar yet unique viral, bacterial, and fungal patterns are disregarded and their illness described only in behaviors. How much longer is autism to be ignored as a disorder with roots in the immune system?
Finally, we see more research making these connections. PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, is the newer acronym to describe what seems to be happening. It includes ALL types of infections, not just Streptococcus . Here then is a study that I think holds true for many children who regressed into autism. It describes my daughter, the pain and suffering....and the years and years of denial by too many medical professionals:
Pediatric autoimmune neuropsychiatric syndrome (PANS), developmental regression and autism, 30 June 2017
The aim of the study is to characterize a subgroup of patients with IA within the PANS diagnosis study.
Twelve participants had IA [infantile autism]. Eleven of these reported a developmental regression with loss of abilities. Two of the IA patients also fulfill criteria for PANS. Eight of the IA patients had been treated with antibiotics for psychiatric symptoms and 4 reported a positive effect of this treatment. Nine of the patients had elevated test results suggesting possible PANS according to Moleculera Labs.
Very early onset on PANS may be phenotypically similar to IA with regressive features. Further analysis of the immunological attributes of patients with autism with regressive features is warranted.
I have waited YEARS to see this. We are getting closer to the medical reality and treatments for those severely affected by autism. Is it really autism or is it PANS? OR...is it really an immune system damaged early in life and the behaviors became the focus, SINCE 1938 ? Thousands of families are waiting for treatments to help their very ill children. It has been a tragedy for far, too long. Thank you to the researchers who are brave and changing the paradigm of autism.
Teresa Conrick is Science Editor for Age of Autism.
My grandson was born in 1997. At that time, we knew nothing about vaccines except I was sure no newborn infant should be getting vaccines because their immune system wasn't fully developed. At a time when none of Mothers family were present, she was offered the 2 shots popular at the time and then baby would be all ready to go home. She thought it was a good thing. He had the classic symptoms of severe colic but we were dumb. He had the high pitched scream of 'cry of the cat, rubbed his head and cried big fat tears constantly. First doctor visit, told doctor we thought it was severe colic. Knew nothing about regressive Autism. Soon learned because as time went on, he did turn into a seemingly happy baby but couldn't make the milestone markers for his age. Years later, aftermuch online research, Pandas was brought up in the community of RA. We have an auto immune disorder in the family with many IB symptoms. Such damage as told in this article make sense. I've always been sure tho thatbit is Not Autism, especially of Kanners Classic but brain damage by vaccine reaction which in turn affects the neuro system which in turn effects the gut with the nervous system connection from the spine into the gut which renders children with many areas of infection, some alike, some different. It's brain damage still, imo, no matter where it settles to affect the particular system. Now it's called PANS but is not new. I hope you keep this in the front of investigative science Teresa, so it's never forgotten. Grandma peg
Posted by: Margaret Jaeger | October 27, 2017 at 04:43 PM
Thank you Teresa. I always read your posts and pray that the microbiome investigation keeps going until they finally admit that as the gut is 80% of your immune system (per Dr. Mercola), HEAL THE GUT! All this ridiculousness with finding that darn autism gene - what a waste of money and time. On purpose I believe. It is wonderful to see this research. My affected daughter is named Megan as well and she is now 24. My older daughter is married and will have a baby (and be faced with the ridiculous vaccine schedule) within the next two years. Tick, tock, tick, tock......
On a happier note, my niece is California has been through three pediatricians until she found one that would actually listen to her. Her son (age 2) is African-American and I sent her the William Thompson information about the fraudulent MMR study. Her new pediatrician actually read the study and agreed to hold off on the MMR for her son until he is 3. Wow!!
Posted by: Jill | October 27, 2017 at 08:18 AM
Is there an answer to why some people have a bad reaction to SAM-e?
Posted by: Benedetta | October 26, 2017 at 10:31 PM
Theresa-my son's doctor has been saying that our children are suffering from immune dysfunction for years. His name is Dr. Michael Goldberg and he wrote a book called "The Myth of Autism" discussing how our children don't have autism, but are suffering from an illness of immune dysfunction. He recommends the use of immune modulators as the answer to the disease, but sadly no one in a position of power has listened to his message. His facebook page is neuroimmune dysfunction syndrome or NIDS.
Posted by: Gayle | October 22, 2017 at 07:56 PM
Gary-you are right that science will indeed ultimately lead us to understand why our children are so ill. Now we need the researchers to find the answer and lead us to a cure.
Posted by: Gayle | October 22, 2017 at 07:46 PM
Friends, Please go to Autism Recovery Summit 2 with Luminara Serdar and see the interview with Chris Shade, PhD. You might see something interesting there. Please see it to the end. You will only be able to view it free this weekend 21,22. Oct. After you see the interview, you can go to Dr. shade's website: Quicksilver Scientific in Colorado and see the list of his products. You can also sign up to receive future info from his company. You can also spend time seeing his old webnars and his speeches on youtube. ( Im not implying that the other interviews are not worth seeing. I just did not have the bandwidth to see them at this time in my life- but I never ever miss something by Dr. shade. Im delighted to see that he is now taking up the treatment of autistic kids)
Posted by: cherry Misra | October 21, 2017 at 01:53 PM
ucsd suramin trials: suramin (anti inflammatory) reversed/significantly improved autism
autism = immune mediated disorder.
Posted by: Mr. Washington | October 21, 2017 at 06:35 AM
Thanks for your comment.
Well....that is still the issue. There are docs out there but insurance does not always pay...and don´t always believe the dx so deny paying for treatment. You can start with the PANS list here http://www.pandasnetwork.org/research-resources/us-providers/
If you are on FB, there are many groups too. The more research that getś published-- the quicker we can get the truth out there and treatments. Dr, Cunningham also has a study coming out soon..https://www.autismspeaks.org/science/grants/anti-neuronal-autoantibodies-pandas-and-autism-spectrum-disorders
Posted by: Teresa Conrick | October 21, 2017 at 12:33 AM
Thanks so much for you comments..really nice... and Bad Penny-- a big thank you right back at you! So glad I could help - that is my hope in this craziness so many of us have.
I wrote this to show that researchers are investigating what we all know -- and itś a good development. I will cover as much as I can about the research and some of that may be about treatments. Thanks.
Posted by: Teresa Conrick | October 21, 2017 at 12:23 AM
How does one go about finding a doctor who would prescribe IgG immunoglobulins as a treatment for our childrens dysfunctional immune system, which is the cause of their autism diagnosis?
Posted by: Gayle | October 20, 2017 at 11:55 PM
Years ago, when our 27 yo autistic son was a patient of Bradstreet/Kartzinel , he was given a PANDAS screening. One of the 12 or so items that were tested for registered a (High) reading. The discussion at the bottom of the test talked about OCD as a result of PANDAS. At the time, OCD was not registering as a result of what the test revealed. In fact, several of his idiosyncrasies were seeming quite "normal" to us. Forward eight years. Our son’s 103 yo grandmother passed and we put our home of 18 years on the market. This was the only home our son had ever known. Because of the “chaos” in our lives, the week-long, very sore throat I contracted went away but not before our son caught it and had a very sore throat for a week. We never made it to the doctor for an antibiotic Having had strep before, I knew in my heart, that that is what we both had. Within two weeks our son began manifesting signs of OCD. What ensued were the worst seven years of our lives. It took seven years and many alternative interventions but he is doing great now….still some anger issues….but we can live with that!
Posted by: Cinda Nichols | October 20, 2017 at 09:41 PM
Of course PANS is immune system damage. My question is, what are you doing to change the outcome? Damage done as an infant can be reversed, in varying degrees, as we all know. Some kids get a little better, some get a lot better, some kids recover. What have you done that has worked for Meg, and what have you done that has not worked for Meg? I've found many treatments that have helped my son, and most were not pharmaceutical. I think this should be your next topic on AOA. I bet there's a lot of folks who would be really interested to know your thoughts on treatments.
Posted by: Tami | October 20, 2017 at 12:54 PM
Tereasa's article says health it is related to what is growing, or not growing in your gut.
So that means there is no subset of children that can not take vaccines, but it is every body! It is just a matter of time untill it effects everybody. Yeah, there really is no immuno crompromised IgG, or mitchondrial underlying problems before vaccines, but "after" vaccines.
I agree though that IgG immuno globins should be looked into as a serious treatment. They give this treatment for Kawasakis, and there is atypical Kawasakis too; if you choose to look at a vaccine injury in this way. Captone's son sounds just like the atypical Kawasaki crap; which means he was having a cycle of on and off serum sickness - another name we don't understand. Better word: Inflammation?
Every one of those symptom that Megan experienced - same for mine. Only for my son it started off with colick right at birth, and for both my kids they had a rash right after birth before vaccines. The Peds, if they don't know the answer makes up an answere; said those rashes were t due to hormones or some such nonescense. I however: know that I received a DPT vacccine a few years pior before the birth of both children -Yeah that is right I had two DPT vaccinew in my 20s.
It is every body or eventually will be.
Not only that, but here is a kind of "it is in the closet" mentallity going on.
No one wants to tell even other people that thier kids are - causing them problems. That the thing they all love most in the world is not acting right. It is a kind of pride thing too.
I have a friend on face book that tells me he could take any kid and raise it right. LOL. He has two grown kids born in the 70s. Neither has yet reproduced.
Posted by: Benedetta | October 20, 2017 at 10:21 AM
You do not know me, and I rarely comment but I owe you the health of my youngest son and the quality of life my older son enjoys has been significantly impacted by you, a mere mom among the mighty doctors nurses and scientist.
My oldest regressed into autism at the age of 18 months after a series of toxic vaccines including MMR. He received his diagnosis at CHOP in Philadelphia. He received 2 of the CHOP rotavirus vaccine that was later removed from the market. I had an immune work up and was concerned with the rash (zoster like rash) he used to get post vaccines that followed a viral pattern. Of course CHOPS only recommendation was to repeat the DPT as he had no Ab level to Diphtheria he also had an IGg level under 400. Although he never received another vaccine and his big little brother has been spared vaccine damage. Both have other issues due to medical neglect. It took 12 years and 7 years battling Dr.'s and insurance but we finally have a proper diagnosis. Both have Common Variable Immunodeficiency. I believe the oldest was probably transient hypo gamma globulin anemia of infancy.
I believe CHOP is complicit in denying medical treatment to children who react to vaccines they are developing. I find it ironic that the immunologist who helped us was trained outside the US and is the only person in the medical community that has ever in 17 years used the phrase "REGRESSIVE AUTISM" CHOP PPDNOS, IA, and my favorite "You are a nervous first time mom he was always like this you just did not notice!" I took notice 15 years later when I was at my first IDF Immune Deficiency Foundation Conference and they kept saying the SCID's babies should never get the ROTAVIRUS vaccine. I count my blessings had the oldest gotten the third dose of that vaccine maybe he would have made the death count twelve instead of eleven. It certainly made me never ever vaccinate his little brother. I believe Regressive Autism is vaccine damage to a child who has an underlying undiagnosed PID (Primary Immune Deficiency). If you never look for PID you will never identify suseptible children. There is a test for Sever Combined Immune Deficiency and why should't there be those babies need a bone marrow transplant $$$$$$$ for CHOP!!!!! CHOP were we care about Patents, and we only want $$$ procedures not good diets not lets delay vaccines and let the immune system develop nope 10,000 at one time is A OK according to diareha and rotavirus vaccine profiteer Paul Offit. The progress my sons have made is because of people like you, Kim Del Polly and countless more keep up the good fight and know you and your precious family are in the prayer of many each night! God Bless guide and continue to lift you up as you are a light to many.
Posted by: Bad Penny | October 20, 2017 at 09:28 AM
We have the same list Teresa to painful to dig it out but I know its in the computer.I agree were seeing small shifts towards admission of compromised immune systems.Just today I waas noticing wuite a few kids in my local shopping center with the red eyes of eczema or maybe its liver damage but it aint the norm - dont matter what they try and tell us!.
Pharma for Prison
Posted by: Angus Files | October 20, 2017 at 09:20 AM
Bob Moffit: I fully agree with all you've said. Science will indeed ultimately lead us to understand why our children are so ill; meanwhile they are being poisoned at an increasing rate the world over. This will continue, as most governments serve the interests of the pharma/food/agricultural cartels rather than their citizens.
Posted by: Gary Ogden | October 20, 2017 at 08:51 AM
"Teresa Conrick is Science Editor for Age of Autism."
If President Trump ever acts on his campaign pledge to establish an independent Commission to study "safety and efficiency" of our bloated vaccine schedule ... I would highly recommend Teresa Conrick be among that Commission.
In fact .. Teresa would make a perfect "science informed" appointee to any of the numerous alphabet public health bureaucracies .. CDC, HHS, IOM, on and on ..
In the meantime .. Teresa has given great hope and encouragement to our long suffering community that "science" is .. at long last .. moving in the right direction as Teresa informs in this article.
Thank you Teresa .. for all you have done and continue to do for AoA readers.
Posted by: bob moffit | October 20, 2017 at 06:33 AM