Dear Autism and PANDAS/PANS Researchers - Listen To The Parents
By Teresa Conrick
My daughter, Megan, born in 1993, has had a diagnosis of autism since 1995. Throughout the years, Megan has suffered from perpetual infections. As a young child, she had chronic ear infections. She was put on antibiotics but never probiotics and back then, I was not aware of that very important connection. She also was bedridden numerous times, for days with mysterious viral infections and fevers, rashes, and also gastrointestinal distress. Diarrhea and constipation then took over with blowout enuretic episodes. In 2000, her behavior began to escalate. Biting, screaming, breaking glass on the hard floors and pouring liquids out on any carpet she could find. Odd, perseverative and destructive behaviors became the norm. Doctors constantly told me, “it was her autism” causing the behaviors but they were wrong. Stool testing, done by a doctor who was seeing other children then with similar issues and an autism diagnosis, revealed that Meg had a painful, protozoan parasite, Giardia lamblia, which colonizes and reproduces in the small intestine. She also had another persistent parasite, Blatocystis hominis, as well as chronic fungal infections from Candida albicans. It was also discovered that Meg tested intolerant to gluten and casein.
It took eighteen months to clear these infections – and those behaviors. Tears, prayers and hope were my sanity as I watched often helplessly as Meg led a life of suffering. I even remember getting a call from the Department of Public Health, inquiring how and when Meg began to have symptoms of this long-lasting Giardia, as if I had somehow ignored her plight. She was on prescriptions -Nystatin for the yeast and Flagyl (Metronidazole) for months to kill those microbial infections. I put her on a gluten and casein free diet, too. As the years marched by, we would be revisiting Flagyl for her numerous Clostridium infections. As soon as one infection seemed to be finally dissipating, another would take its place.
In 2007, Megan began to flush all kinds of things down the toilet – toothbrushes, shampoo caps, toys – whatever would make its way into that curious hole. Calling the plumber and doling out cash seemed to be happening more and more, the worst being for a small rubber ball that perfectly made its way through the toilet odyssey only to be lodged in the pipe in the hallway wall. The plumbers took mercy on me by finally introducing me to my very own “snake” thereby saving me hundreds of precious dollars that were needed more for biomedical treatments. Yes, this behavior was also related to infections. It seemed that each time Meg would begin this ritual of obsessive flushing, she would test positive for Streptococcus infection. Then began the odd, body tics; dilated pupils; urinary accidents; vocal tics and not wanting to walk through the doorway of her bedroom. Eating became less and less and she wanted to wear sunglasses all day and night. What stopped this – antibiotics AND probiotics– but, permanent removal of these devilish bugs and parasites would prove to be the journey we continue to travel. As puberty hit, hormones began to ramp up these behaviors and then grand mal seizures began.
Since first writing about Megan and PANDAS, I have had so many parents contact me about their children. Example, a good friend who cares for her grandson, also with an autism diagnosis, began to see new and increasing behaviors that were concerning. Some of those behaviors were beginning to happen at school and in places where people do not understand the connections between microbial infections and negative behaviors. Obsessive questioning about rabbis; church bells; long rages; dilated pupils; some talk of “what if” harm to others; wandering behaviors and frequent body tics in his sleep. Armed with a list of labs that I emailed to her, she was able to get some testing done and the evidence was clear – infections were running rampant in this teen:
Anti-DNase B Strep Antibodies High 223 Reference Interval: 0 – 170
Mycoplasma pneumonia IgM Ab High 932 Reference Interval: 0 - 769
Mycoplasma pneumonia IgG Ab High 962 Reference Interval: Positive > 320
Toxoplasma gondii Ab IgM Qn High 2.27 Reference Interval: Positive > 0.99
Lyme IgM-WB Positive-Abnormal (p41, 39 and 23 ab) present
What we are seeing is a clearer picture of autism in so many – an immune system unable to fight pathogens. Ironically and alarmingly, more and more children are falling off the cliff of normal health into an abyss of abnormal immune functioning after vaccination. For many, vaccines seem to be a concern as the start of that nightmare. My Meg was diagnosed positive on the antinuclear antibody test at age 18, showing her body in an autoimmune prison. I keep reading study after study showing how environmental mercury and vaccine mercury (Thimerosal) can cause profound damage to the immune system and how vaccination can cause molecular mimicry. Unfortunately, because of the controversy of vaccine injury, these topics are often times ignored and denied.
I recently saw a discussion on a parent forum regarding PANDAS/PANS and autism:
"Had an interesting day yesterday. Dr. Swedo herself undiagnosed my son with Pandas/Pans. She said kids with autism cannot have Pandas. She said a little OCD and then an increase in OCD with exposure to Strep do not qualify. She said the child has to be neurotypical before onset. My son has a lot of issues but was dx by 2 pandas specialists and she said they are wrong. She said PANDAS is being dx way too much by these doctors."
Wow. No disrespect to Dr Susan Swedo, a pioneer in the PANDAS field and an investigator in autism as well – BUT – we are seeing an epidemic of children with autism and 50% or more of those children and teens may be having these immune abnormalities and symptoms of infections and behaviors. Whatever it is called, the bigger issue is that too many are suffering. Whether it is the issue of causation or treatments, the suffering of these children needs to take precedence.
Some recent emails, from parents who have contacted me about their children: How can this information continue to be ignored?
Parent 1 – son is age 6:
“ASD (PDD-NOS)—Dr. Bradziunas , (Lurie’s Children’s Hospital) -- Mitichondrial Disease , Secondary to Autism –Dr. Frye ( Arkansas Children’s Hospital) -- PANDAS, Secondary to Autism –Dr. Bouboulis, Allergist Immunologist”
Parent 2 – son is age 8:
“My DS (who is now 8) was DX with ASD when he was 18 mos old. Loss of pointing, joint attention when he was about 13 mos old, started repetitive behaviors/self stimulatory behaviors, delayed echolalia, extreme obsession with letters, delayed receptive language, etc.DX also with Mito issues (carnitine deficiency), strange high platelet counts, continuous upper respiratory infections. Started GF/CF, Dan protocol and ABA. Developed Asthma and continual conjunctivitis.
By the time he was 4 he was pretty typical and by 5 he entered Kindergarten with no supports and no one knew of his DX. He had Strep (Positive rapid) at the beginning of August, 3 weeks before school started. Typical 10 day Ammox treatment. On the day before school started I noticed a rash on his cheeks and neck/chest and fever of 99. It was a Sunday, so I took him to urgent care. I thought it was Fifths disease. Doctor there said cocksackie. I disagreed, but no meds given as they are both viral. I took pictures of the rash. He started school and two weeks later on September 10, 2011 he turned into a different child. LITERALLY in a span of 5 minutes. We were not allowed to touch him. If he did he had to go through an elaborate "wiping off" ritual or he thought he would turn into a zombie. Certain blankets and pillows were now not usable. He could not sleep alone after always being able to do so. He had multiple tics and strange body movements. Urinating much more frequently, emotionally a mess, extremely hyperactive and impulsive. Hand washing- could not wipe himself for fear of germs and had other contamination fears. All doors had to be closed. And the list went on. Autism behaviors came back that we had not seen in years: hand flapping, language regression. Etc.
I googled abrupt onset OCD and came up with PANDAS- I then remembered having seen the Mystery Diagnosis with Sammy/Beth Malone. Took him to the pediatrician within a week. She did DX him with PANDAS, started him on treatment dose of Augmentin ES for 90 days, and ran blood work. Strep negative, but it has been so long since he had it. Positive for Celiac disease and his AntiGliadin IGG was >100 which indicated his reaction to gluten was above the upper limit of the test. (I had resumed letting my son have gluten when he was about 4) Immediately started gluten free diet again.
I am in FL so I found Dr. Murphy and was able to get into see her on Nov. 16 of that year. She confirmed PANDAS dx. She looked at my pictures of the rash he had just before he had his onset and she said that it was Scarlet Fever. Makes sense now! She continued to treat with antibiotics and vitamins/supplements, referred to immunology/allergy. He was then diagnosed with a severe Mannose Binding Lectin immune deficiency and severe allergies. We are now still on antibiotics, we do CBT and were at onset, but he is not back.”
Parent 3 – son is age 7:
“Here’s the timeline of his dx info:
· 3 yo – SPD (2/10) (Sensory Processing Disorder)
local neuropsych referred us to an OT
Obvious behaviors were: aversion to loud noises (vacuum, disposal, law mowers, etc), trouble with transitions/change in routine, biting, hitting, etc. Vestibular and proprioceptive issues. Sensory defensiveness with water and other things on face, couldn’t brush or cut hair, hiding under tables, eloping issues, no stranger danger, hugging everyone. Lip licking, nail and toe biting, spinning. Bilateral coordination issues, light sensitivity. Meltdowns due to any of the above. 1st preschool, staff thought he was gifted and bored – they noted he wasn’t engaging with other kids but walking the perimeter of the playground by himself – “in own world” – didn’t respond to name when called, had to get his attention 1st. Feeding therapy to address issues with restricted diet. Trouble sleeping
· 4 yo – ADHD (about a year later)
same neuropsych asked us to do more testing to look at ASD too but I misunderstood.
Obvious behaviors: same as above but we weren’t sure if his motoric-hyperactivity was sensory seeking or “more” than that. In hindsight it looks like some of that was due to compulsions. Vocal tics --Potty accidents started occurring during the day.
· 5 yo – Asperger’s (2/12) Local psychologist dxed Asperger’s
School Eval conducted at the same time says OHI: ADHD – School conducted FBA concluding: student has good and bad days but we don’t know why. Mainstreamed without support and moved to “behavior” classroom. Social and communication deficits noted by the school and parents, all previous symptoms above still occurring. More obvious OCD symptoms including the need for “just right” (counting/numbers, lining up toys perfectly), replaying one line on the TV over and over on the DVR, separation and general anxiety became more apparent with better expression.
· 5.5 yo – ASD (5/12)- AU IEE conducted by Aspy/Grossman, creators of the Ziggurat Model (counts as dx and eligibility)
· 6.5 yo – PANDAS (5/13)– looking back through doctors notes, school records and personal videos/photos, it seemed like we had an uptick in behaviors when my son was sick. Had first heard about PANDAS a few months after his Asperger’s dx when I joined the local Warrior Parents Group of Dallas. Started paying more attention to details and recording when they occurred. Did a trial of azith and within 2 week, he lost 2 vocal tics and most of his OCD behaviors.
· D1 2000
· D2 2000
· Lyso 80
· Tub 4000
· CamKII 151
· Results PANDAS/PANS likely”
Parent 4 – Son is age 9:
“My son was diagnosed with Pandas last month. He was also diagnosed with autism at 3 years old. He is 9 years now. Most likely had pandas at an earlier age -- 4.
Signs: Aggression, biting, attacking Mom or teacher in charge. Tremors, odd foot dragging and hand flexing only when melt down occurs. Odd all over body jerks. Not visible but I can feel them when he is sitting close to me or leaning on me. Panic attacks, separation anxiety, urinary frequency.
When he is in remission he is sweet, happy and a joker just like me, although he is still non verbal. The cycle has been 2 weeks great behavior then 2 weeks raging, and erratic behaviors.
I believe he is dealing with parasites. Continuously for the past year and a half aggression ramps up during full moon, Night wakings with aggression, panic, inconsoluable crying, biting lasting between 5-15 minutes then he calms and goes back to sleep. Then every two hours wakes and it starts all over again. This lasts for about exactly 2 weeks starting on the night of the full moon.
His Antistreptolysin O antibody titer 1013 - High
Anti-DNase Bstrep antibody titer 1270- High
Streptozyme 1:800 -High
IgE 924 - High
IgG 1828 subclass 1 1220(other classes normal) -High”
Parent 5- daughter is age 10.5:
“My daughter has been tested positive for PANDAS via cam kinase 174 (Cunningham Panel) (mod-high range) She has lyme co-infections of borrelia and others. She has had a rough go this last couple of days with the full moon. Flushed cheeks and crying,running around - very anxious! “
These are but a small group of parental reports. They are though, a picture of a much bigger issue, an issue that keep research, treatments and causation blocked from these very sick children. We need true research and studies that can help stop these immune system diseases and in doing so, it must be recognized that autism and PANDAS/PANS are related. Truth, honesty and integrity are needed in this epidemic of sick children. As Dr. Wakefield has been saying for years, and just recently stated in an interview, “We must listen to the parents.”
Teresa Conrick is Contributing Editor for Age of Autism.
Mainstream med industry thinks rage and developmental regression will magically disappear with CBT. Im not denouncing CBT but it's not a magic cure-all for severe violent regressive PANS/PANDAS.
Posted by: Anonymous | November 04, 2022 at 09:50 PM
an old article, yet sadly still very relevant in 2022
has anyone here tried Dr Lonsdale's thiamine protocols?
Posted by: DT | November 04, 2022 at 11:38 AM
hey there pandas mum did your firend record dr susan sewedo saying it beacuse if they did you shoud give to your local news network
Posted by: kyle | January 08, 2019 at 10:28 PM
i mean wgat if some of those adults who we think are nasty and crinmals actually have this condtion themselves or others in pschy wards there more then enough studies showing corealtion and any pesson wih common sense knows its environmental causes because a species haveing so many people evolve with a deformity would not survive,but they ignore the evdince oh and if comes for a non reacher or medcail doctor it must be wrong what a load of hoey anyone can who understand logic can see tobservation and record evdince can do science now their talikg about micrbiome when it wasnt them who discoverd it but intergative and wholstic or naturo and mothers who pionered the reserach into that but they dont get the credit not a simple thankyou add when they deserve a lot more
Posted by: kyle | December 22, 2018 at 08:27 AM
hi everyone autsim asnd pans pandas are contagous they all stem from immune sytem to metion antiboitc tablet dont seem to evn ssped up recovery acterial infections and it can affect adults its beacyse of lack of safe vitamin d,, metal toxcity, and, the fact of matter our fruit and veg ae not as fresh as it should ve and not kep inplastvc hey did you know organtun beds are clener them huans due to suung on leaves and wate and not to metion all the pesticeds, and herbecides and antibotics givenn to animas its time truth giot out think why the english wrre so evil they wre living in filth where ass indgiounges cultres used to be cleaner hence why there was less voilnce from
Posted by: [email protected] | October 09, 2018 at 11:26 PM
Posted by: Dr. Arun Mukherjee, MBBS, MD (Medicine) | January 17, 2017 at 03:04 AM
Sir , would you mind telling us more ?
Parents are desperate to help their maimed children .
"An ancient Ayurvedic drug available in India. " Which one ?
We are all generally happy to test these things on ourselves first . So there is no risk .
I wouldn't be happy to ever test a vaccine on myself first on the other hand .
100% boycott - this is a life or death situation in my opinion .
Posted by: Hans Litten | January 17, 2017 at 04:51 AM
Tooooooooo many infections.
That means her body is not fighting back adequately.
In my experience of a dozen years managing Autism in India, as director of a research-oriented non profit dedicated to help neurodevelopmentally disturbed children, I often find that their Natural Killer Cell activity is sub-par. It is a simple blood test to detect.
I know of two ways to deal with this problem, and increase NKC activity to naturally deal with the impaired immune state.
1. Acquire GcMAF from the research lab at Japan, which I, personally have read about but not tried..
2. An ancient Ayurvedic drug available in India. We used a standardized preparation approved by Drugs Controller of India for use in adults and children since almost 4 decades, on which our primary 6 month follow up evaluation study is already complete. The data are soencouraging that now a full fledged double blind placebo controlled trial will start within the next couple of months..
Posted by: Dr. Arun Mukherjee, MBBS, MD (Medicine) | January 17, 2017 at 03:04 AM
Email me at [email protected] for more information.
Posted by: Teresa Conrick - To Katie | January 03, 2017 at 08:15 PM
I am interested in pans\pandas diagnosis. My son has asd and i think he also has pans\pandas but do not know what testing to request. Thanks.
Posted by: Katie | January 03, 2017 at 07:17 PM
"Had an interesting day yesterday. Dr. Swedo herself undiagnosed my son with Pandas/Pans. She said kids with autism cannot have Pandas."
Swedo KNOWS, but she is playing the political game, which dictates that no one who wants to keep their prominent position in public health can admit that autism is immune dysfunction. She told someone I know that PANDAS IS autism - that they are essentially the same thing - 6 years ago! She's also running around vehemently denying that Lyme has anything to do with PANDAS/PANS. Every single PANDAS/PANS kid I know personally, who's been tested for Lyme, has it.
Posted by: PANDAS Mom | April 20, 2016 at 01:10 AM
Dr. Kenneth Bock said in an interview that in autism, PANDAS can present in a different way, because the strep infections smolder. So the kids can present with smoldering PANDAS symptoms. They may never have fevers and sore throats, because their immune systems aren't mounting enough of a response to the presence of the strep.
Dr. Trifiletti says there are stage of PANDAS. It can go into a chronic stage where it is no longer showing patterns of flare and remission.
Dr. Trifiletti also says there is such a thing as infantile onset PANDAS.
Trifiletti is also talking about autism -- or maybe just a subtype of autism -- being PANDAS/PANS except that it occurs in a kid who carries autism risk genes.
Kudos to Susan Swedo for all her research, but we need to branch out to other doctors and researchers. She doesn't own PANDAS and PANS just because she was the first to describe them.
Posted by: Jennifer | April 19, 2016 at 04:19 PM
I have a perspective that adds to what the parents are saying. My son was the first to go through our school system, which was large metropolitan system. He was born in 1989. What I did know, is that a profound change occurred in 1991, but not just for him. My husband was a reservist, activated in October 1990. My family was instantly thrown into the Military Healthcare System, having to travel 22 miles to the nearest Military Base for all healthcare. My son received his 18 month vaccine through the military, and became extremely ill. After that he was extremely irritable, crying, sensitive to noise, and expressed Autistic delays. My husband came home 4 months later, he too was ill, but hid that from us until I got ill. Seven months after my husband came home from the Gulf War (1990-91), I caught a virus, as did my youngest, and developed what eventually would be called Fibromyalgia. That is when my husband confided to me, he had gotten I'll with the immunizations given the troops (as did they all), and not recovered. Not long after, my 9 year old daughter developed ADD, and also my youngest when she reached school age. My husband put our family on the DOD's Gulf War Syndrome list, but we knew they would never take responsibility, they never did. So now my whole family was struggling, one strange thing after another, but we knew it was "contagious". Fast forward 23 years, adults sicker than ever chronic fatigue (CFS), fibromyalgia (FMS), Crohn's disease. Check out the Veteran's Administration's Criteria for 100% Service Connected Disability for Gulf War Illness. America's epidemic. My oldest (9 when infected) developed Fibromyalgia last year after contracting Enterovirus 69(patented by Nanogen). I contracted it at the same time, and developed pneumonia. This was to be the turning point for us.
The doctors never found the cause for my pneumonia, and they really never cleared it up. Because I also had been expressing acute Porphyria and had bad reactions to pretty much all new drugs (There's an APF app that includes the Nordic Porphyria organization, preferred), they gave me Pipercillian. Suddenly I no longer had Fibromyalgia symptoms or Crohn's symptoms, and my face & palms broke out in tiny little cysts all over!! Inquiring minds now have smart phones, and guess where I was led when I typed in "neurological problems helped by Pipercillin broke out in tiny cysts on face and palms", you guessed it...Gulf War Illness linked to Mycoplasma Fermentans (incognitus strain) contaminated vaccines. Now you can do your own research on this nasty US Patented genetically altered bio-weapon. I'm sure we will never know the truth, deliberate or accidental. The CDC and NIH both say Mycoplasma Fermentans (incognitus strain) is epidemic, and contagious, and has contaminated lots of biologicals in labs. When you do your research, you will come across Dr. Garth Nicolson, watch all his video's etc. He is currently working with the Autistic community.
After all these years of suffering, we didn't waste any time researching a treatment protocol. The worst part is the medical community and insurance companies are not "motivated" (I use this word kindly, since there is proof that it is more than that) in testing or treating this dibilitating cell destroyer. Truly, you'd be better off having incurable TB, at least they would try! But, you can do most everything on your own, and insist on being treated for Cystic Acne. Our current adult protocol is 300mg Doxycycline (or related tolerated full spectrum for "Cystic Acne", 3-8 cloves raw garlic (pressed, taken with ice water), Primal Defense probiotic, NO GMOs, vitamin supplements & Herxhiemer drink (see mathew1026.com), and NT Lipid Replacement Therapy (essential).
Now, a word of caution, this is a nasty bioengineered weapon, it fights back, and the porphyria/Herxhiemer reactions can be intense. Just back off a little and come back at them, it takes months (most 1-2 years, depending on what stage you are in (think, TB/Malaria). The difference at 6 months is astounding, and my family is currently about 75-80% improved. We will have to be on NT Lipid Therapy for life. But the saddest part of all is the suffering of the American people, who are still being misled by a fragmented for-profit medical community that has no connection to the world's microbiology community. If they even try, they are shut down.
P.S. My son's ASD is Improving, and that says it all! Oh, so are our sick pets!
Posted by: VickiJo95367827 | January 18, 2016 at 01:29 AM
Every condition I have read listed here sounds like mercury poisoning, or whatever new name may now be applied to it. Acrodynia, MS, PANDAS, scarlet fever, autism...
Mercury is bacteriostatic, allowing bacteria and/or viruses to survive, just not flourish in it’s presence.
Western Medicine has roots in mercury, and the mercury poisoning of patients. However, the establishment refuses to speak of it, and does everything it can to sideline it’s research. Why? I believe it’s because of their obligation to their stockholders, not their patients.
Posted by: Albert | December 14, 2015 at 12:39 PM
Hi Yolinda and Stephanie,
I just saw both of your comments. If you visit our site and see this message, feel free to send me an email so I can share some information with each of you. You are not alone.
Posted by: to Yolinda and Stephanie-Teresa Conrick | December 04, 2015 at 10:34 PM
It started with an ear infection. Then an ulcer on the throat. From there he had a terrible behavioral meltdown. The doctors wanted to give him Haldol. I reminded doctors my daughter doesn't just self mutilate for no reason. They continued giving her Versed for "agitation." This brought little relief, once the Versed wore off. Then they gave MORE Versed. More ativan. Still, my daughter screamed, bit herself, bit others as she tried to continue biting herself. It was a nightmare. I pushed and screamed myself, insisting that doctor's check her ears, nose and throat. "It's an autism flare," insisted the doctor. I asked what an "autism flare" was. Nobody could explain. The self mutilation escalated. Nobody did any wound care. Nobody checked her throat. Or ears. Finally, after I kicked a garbage can and pressed CODE BLUE for assistance, since nobody was answering the call nurse button, a dozen people showed up. They put my daughter in restraints. Gave her a shot of Morphine. I stood by, insisting again they check for a medical reason for the increased self mutilation. Nobody listened. Finally, I looked in my daughter's throat myself and saw some pus. Surely, this was the reason she stopped eating and drinking at baseline, right? Nobody listened to me. Again, I pleaded with doctor, please look into her throat and ears. While in restraints, they did. Doctor saw an ulcer like thing in her throat. Still, nobody did anything. No culture was taken. No wound care for the lacerations and missing skin on her fingers from self biting were treated. The doctor left. I had to explain to a new nurse how pain and increased agitation and self mutilation in autistic patients was connected. Nobody listened. I finally got doctor to diagnosis there was in fact a small ulcer in back of throat and an ear infection that was causing my daughter's acute increase in self mutilation. Nobody seemed to give a damn. I am at an utter loss of words. Exhausted. Frustrated. Does anyone care? That our children with autism are suffering? That they need medical care? That their increased behaviors aren't always just "autism." That their pain is real? That they need and deserve treatment? I guess not. I had to advocate and scream and cry and beg for better care. All I got was apathy, benign neglect, nurses and doctors scrambling to protect themselves by writing narratives and reports that didn't reflect what was really going on. Millions on autism research. Million directed to autism funding for community supports. More research. And here I sat, one mom, fighting a world of ignorance and apathy and all I could do is cry. And wonder, what next? When does this madness end? When will hospitals ever connect the dots and learn to better treat patients with autism who are experiencing medical issues that cause them to have behavioral meltdowns? When will these doctors and nurses ever learn that you must aggressively treat underlying medical issues that cause acute severe escalations in self abuse/mutilation? And that all these behaviors are a cry for help? Help me please! I can't talk. I can't tell you I'm hurting and I don't know how to express my pain, so I rely on primitive modes like self biting and self punching to show you that I need help. That I'm suffering in silence? Do I need to press the Code Blue button to get your attention? To get you to care? To get you to treat me properly? Code blue. Blue, the color of autism. Is anyone listening?
Posted by: Yolinda | November 05, 2015 at 02:52 AM
You all seem so knowledgeable and I feel like a complete ignorant here but I'm in over my head. My 5.5 year old son was diagnosed with autism at 2.5; today, I had a doctor tell me that my son doesn't display the classic symptoms of autism and that he believes my son has PANS. So we're testing him next week. I'm so confused; we've been operating under the autism diagnosis and applicable treatments for three years now. If it's PANS, what do we do? What's the difference? I mean, I just need to know how to help my child and my "pseudo-medical degree by research" is in autism. My son is mostly non-verbal (he's getting there with the spontaneous conversational language but it's extremely slow going) and he has most of the PANS symptoms, many of which look like autism symptoms to me. Any guidance - please - and thank you so much!
Posted by: Stephanie (Jonah's mom) | September 09, 2015 at 08:55 PM
Thanks Teresa. Its so important to have our children tested and treated for Pandas/ pans because I think a lot of the autism may melt away. That's probably what they are afraid of. They are making too much money off of our childrens suffering. Sad but true, greed is king. It looks like government would want them better, but they too are bought. They don't realize the expense that is going to hit them in the face in a year or two. Social security, group homes, respite, food stamps, and ect.... compared to testing / treating for medical problems and getting kids better. Its a no brainer for us because it personal, but others don't care.
Posted by: Theresa 66 | January 25, 2014 at 09:01 AM
Thank You Roger for this input.
I am also so sorry that you have such a severe reactions to milk.
But it sems like you have improved a great deal, and I am so grateful for that. I have thought of you often, and am so glad to hear back from you after you have undergone treatment and - a huge education. Thank You also for sharing.
Posted by: Benedetta | January 22, 2014 at 08:12 PM
All milk products act the same way.I have had three different causes of regressions.Seizures,fever,and eating dairy.I know the dairy related regressions are from increasing the number of folate receptor autoantibodies.These are the regressions that are quick and dramatic and come on in a few minutes.
Posted by: Roger Kulp | January 22, 2014 at 05:55 PM
Times are changing friends. There is coming more awakening as to the problem of corruption.
Posted by: Truthseeker2 | January 22, 2014 at 12:09 PM
I don't think you can get rid of infections and parasites until mercury intoxication is addressed. Please only use the Andy Culler protocol which is the conservative way to go.
Posted by: Rebecca Lee | January 22, 2014 at 07:45 AM
Thank you Roger.
And the regression seems like it could be seizures?
Do you have more OCD, wanting to line up collections of things you own, or maybe just day dream more?
Have you tried cheese, or whey - yogurt. Do you know if you react to them?
Posted by: Benedetta | January 21, 2014 at 11:58 PM
A milk-free diet downregulates folate receptor autoimmunity in cerebral folate deficiency syndrome
Unfortunately the test for folate receptor autoantibodies can no longer be done.I was one of the last people tested at SUNY Downstate in September 2012.The testing trial closed not long after this.The University is not willing to fund the next phase of approving the test for broader use.They need proof it has helped families.
Camel milk is even worse.
I can tell you from my experience,sheep milk is almost as bad as cow milk for causing regression.I can handle goat milk only in small amounts.
Posted by: Roger Kulp | January 21, 2014 at 09:12 PM
Metronidazole (Flagyl) is toxic. I was shocked and sorry to read Megan took this medicine for so long. Look in PubMed.
Metronidazole encephalopathy is very similar to the pattern of symmetric bilateral brainstem damage caused by alcohol, vitamin B1 deficiency, asphyxia at birth, and many other toxic substances like mercury, lead, methyl bromide, carbonyl sulfide, chemotherapy medications, “recreational” substances, the nerve gas Soman, and likely many more chemicals that should be better tested before employed as medicines.
Nuclei in the brainstem auditory pathway and the basal ganglia are most prominently affected. This is because blood flow (and metabolism) are higher in these subcortical centers. Damage to the midbrain auditory nuclei (inferior colliculi) can cause impairment of speech understanding. This has been confirmed by MRI in several case reports published over the past 20 years.
Loss of language is referred to as “verbal auditory agnosia.” How much more serious for an infant. Neurologist Isabelle Rapin has investigated this in children, including children with autism. We all desperately want to hold out hope for a cure, but when a child remains non-verbal despite all interventions, sadly we need to look for injury within the brain, and take precautions to avoid such injury to children in the future.
Posted by: Eileen Nicole Simon | January 21, 2014 at 07:34 PM
Some of the DRs researching this now maybe too tied to their financial backers, making blanket statements that hurts many from receiving treatment & care. Do we need another battle now???
Remarkable any parent is still functioning and able to write about their PANDAS / PAN/ Mitio/ Lyme
Oh and regressive autism; how could I forget autism! That's basically what DRs see in our children.
We have had to unravel this heartbreaking mystery far too long.
I would like to add another diagnoses that should be included; PTSD for the child and entire family!
Posted by: Allie90 | January 21, 2014 at 06:18 PM
wow, those anti-dopamine antibody levels are nuttin'.
How about D1 @ 32,000, D2 @16,000, anti-Lysogangliocide @640?
What a coincidence that the epidemic numbers of kids (and adults!) with PANS (the worse/more traumatic version of PANDAS gone wrong) began the very same year they came out with a intra-nasal GMO H1N1 vaccine?
H1N1, whether from live virus shedding or live intra-nasal vaccines shedding, triggers PANS. Just sayin...
Oh- and one of the big names in PANDAS has already said- "what if PANDAS was so bad that it caused the symptoms of autism?". Brilliant! Of course Dr (name withheld) and that's exactly what Dr C. got a grant for- to prove that, yes?
Note to PANDAS parents- please check your own titers and run the Cunningham panel. The sheer number of moms I can clearly "see" are affected themselves is staggering. treating your child without treating yourself= exacerbations, over and over.
(P.S.- does anyone recall the name of that journal paper that stated that those with immune system damage shed viruses 10x more than others?)
Posted by: Rimland Fan | January 21, 2014 at 05:38 PM
Roger how is dairy connected with folate receptors? Do you understand much about that?
I think we all are some what lost on all of this.
I keep coming back to a poem when I was a child when I have been around and around with all of this.
For want of a nail the shoe was lost.
For want of a shoe the horse was lost.
For want of a horse the rider was lost.
For want of a rider the battle was lost.
For want of a battle the kingdom was lost.
And all for the want of a horseshoe nail.
We have Pandas because the mitochondria is not working right -- but why is the mitochondria not working right - and the answer for us is not genetics.
Maybe we found the nail (synergy of mercury, alum, and a protein in the vaccine) but what is the next progrestion before we lose rider - the mitochondra, and the battle?
Posted by: Benedetta | January 21, 2014 at 04:52 PM
Dr.Swedo may have a point.Not all that is autoimmune is PANDAS/PANS.I see a couple of these children had clear mito issues.Mitochondrial disease or dysfunction can cause secondary autoimmunity,but the root cause is mitochondrial.
OCDs are common with mito too
Mito,autism and clostridia/fungal infections
I thought kids with PANDAS/PANS were supposed to improve with fever,not regress,or develop new behavioral problems.Regression usually means a mitochondrial or metabolic cause.I have cerebral folate deficiency syndrome.I have learned it may well be due to FOLR1 gene mutations,in addition to the usual MTHFR,COMT,etc.I have had many fever induced regressions,and I did have rheumatic fever as a child.Before I had all of the extensive testing I did,I wondered about PANDAS too,but I eventually learned I had a cellular immune deficiency,secondary to folate deficiency.
Dramatic regressions in a matter of minutes? Been there,done that.For me it was seizures,or what I can now see as eating dairy,and increasing the number of folate receptor autoantibodies.I'm double positive for both binding and blocking.
Regressive autism with a lot of medical problems can be complicated stuff.It can take years of testing to figure it all out.
So to play devil's advocate here,there may be no such thing as PANDAS/PANS autism,maybe it's all mitochondrial.
Posted by: Roger Kulp | January 21, 2014 at 02:36 PM
My son has both PANDAS and an ASD diagnosis. Dr Swedo knows full well PANDAS is closely
related...why else lecture at multiple autism conferences about PANDAS? The truth is many of these children's ASD improves when their PANDAS is treated, particularly with immunomodulary treatments--- as is the case with my son. And her bosses don't want people to learn that autism is medical or reversible. I've met Dr. Swedo and I think she's brilliant and has gone out on a limb for our PANDAS children. She is a doctor who used to really listen to parents. Her early lectures on autism (see slides Teresa shared) focused on environmental triggers related to regressive autsim. She gets it. But she isnt talking about that anymore. I think she was reigned in by her higher-ups at NIMH (hello Dr. Tom Insel). And it's a shame because she was a real out-of-the-box thinker. At least Dr. Cunningham is continuing her research on Autism and PANDAS. But it doesn't hold the same weight as the NIMH.
Posted by: ChrissyD | January 21, 2014 at 12:44 PM
“She said kids with autism cannot have PANDAS.”
I am so pleased to hear my child can’t have PANDAS. What a relief!! So the OCD, choreiform movements, insanely elevated anti-DNASE B, and cam kinase of 179 are just a coincidence. Whoopee! Perhaps she just has PANDAS/PANS variant – you know, the kind that kids with autism get – or better yet, non-PANDAS/PANS somatoform disorder. Wait... maybe that means she can’t get other illnesses that NT kids get. So no more colds! No more flu! WAY COOL. And if, God forbid, she were to display signs and symptoms of something really bad, like cancer, she couldn’t have that either. That’s so wonderful – think of all the money it would save! Better yet, none of those politically-savvy researchers would have to worry about uncovering anything awkward and the possible effects on their careers.
Posted by: Introvert | January 21, 2014 at 11:41 AM
Two reasons this is being ignored.
At the local doctor's office -- The people working there and doctors got where they are with their intellince, and succes at the brain factories - college. They have been preened and petted their whole life for being intelligent. This sets them up to be people with extreme prejudice. They get even a sniff of any kind of mental problems--(ANY KIND) Bipolar, even drug abuse; they are extremely prejudice-.
We are fighting prejudice here the same as the gays and the blacks.
NUMBER 2: At the national level - it is a different reason. The same reason that the CDC won't let Brian Hooker, Geier and Geier into see tax paid for records. This whole thing indicates the immune system is part autism, and if the immune system is part of it; it leads us back to vaccines
Posted by: Benedetta | January 21, 2014 at 10:57 AM
Great write-up, Teresa. Thanks so much. The most recent insult to us was that a local immunologist(chief of immunology no less) told me that my grandson's immune system was working just fine and we had nothing to worry about.(they had all his labs going back 2 years). Scary? You bet. Thank heavens for our DAN doctor,
Posted by: Maurine Meleck | January 21, 2014 at 09:13 AM