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Dear Autism and PANDAS/PANS Researchers - Listen To The Parents

Listen_to_me_by_rachellove147-d34d13dBy 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.

Cunningham  panel:

·         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.

Testing 12/02

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.

Comments

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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.

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.

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.

Times are changing friends. There is coming more awakening as to the problem of corruption.

http://www.huffingtonpost.com/2014/01/21/85-richest-people_n_4641021.html

and:

ttp://marchagainstcorruption.com/

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.

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?

A milk-free diet downregulates folate receptor autoimmunity in cerebral folate deficiency syndrome
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715943/

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.
http://www.tacanow.org/wp-content/uploads/2013/05/The-Folate-Factor-2012.pdf

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.

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.

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!


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?)

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?

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.

http://www.youtube.com/watch?v=54drmXcm574
http://onlinelibrary.wiley.com/doi/10.1002/acr.20592/pdf
http://littlefreeradical.blogspot.com/2012/01/my-rare-disease-story-living-with.html

OCDs are common with mito too
http://www.behavioralandbrainfunctions.com/content/8/1/9
http://www.ncbi.nlm.nih.gov/pubmed/19122133
http://neuro.psychiatryonline.org/data/Journals/NP/29015/394.pdf

Mito,autism and clostridia/fungal infections
http://www.mitoaction.org/blog/immunodeficiency-disorders-and-mitochondrial-disease
http://www.tacanow.org/wp-content/uploads/2013/05/Mitochondrial-Dysfunction-ASD-1.pdf
http://www.nature.com/tp/journal/v3/n1/full/tp2012143a.html

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.

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.

“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.

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

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,

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