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

Posted Jan 01 2014 12:00am

Listen_to_me_by_rachellove147-d34d13d 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.

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.

Posted by Age of Autism at January 21, 2014 at 5:45 AM in Teresa Conrick Permalink

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