Le Roy Students, PANDAS and Our Experience

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In October of last year, we experienced something very strange and scary. I should say – I was scared…everyone else kinda blew me off. I didn’t talk about it at the time. I think I was just too nervous about what people would say or suggest. I was afraid of being accused of being overly paranoid – a term which has been used with me in the past. But with recent similar news stories being reported, I feel I should talk about this now.

In October, my daughter who is 7 years old, caught a stomach bug. It lasted about 24 hours and it was just awful. She vomited continuously and she was just miserable. I couldn’t have been happier when it finally started to subside.

A few weeks go by and I get a call from the school nurse. Cassidy developed a 103 fever and I immediately left to pick her up. I brought her directly to urgent care. She said her throat “kinda” hurt but other than that she seemed and said she was fine. She had a throat culture to check for strep.

The 24 hour test came back negative. She was feeling better so I didn’t think much of it. 3 days later, I got a call saying it was in fact positive and that she needed to take antibiotics even though she was completely feeling fine by that time. She had no symptoms whatsoever. But I still made sure she took every dose. And everything was back to normal. Or so I thought.

Around the time of Halloween, she started doing this very strange thing with her eyes. She would roll them…like one would do if they were irritated or annoyed. They would roll up and to the side. At first we would scold her, thinking she was doing it on purpose. Sometimes she just laughed and other times she said she wasn’t doing it on purpose.

I expressed concern with my mom and husband. Both thought it was her messing with me or perhaps a phase or habit she would eventually stop on her own if we ignored it. So that is what we did, ignore it.

But then it was becoming frequent and at inappropriate times. It didn’t happen when she was annoyed or upset. It was just randomly happening…even when she didn’t know I was looking at her. I knew in my gut that she was most certainly NOT doing this on purpose.

Here is a video of her having this eye tic during her Christmas concert. It still breaks my heart to see it. She is the third girl on the top row, brown hair with bangs, dress with black top and purple bottom:

Cassidy’s Christmas Concert

I brought her in to see the doctor, actually, the Nurse Practioner because the doctor was full. I had printed up some information on PANDAS after much internet research. The Nurse Practioner never heard of it and went to ask the doctor while we waited. The doctor never heard of it either.

The NP looked up some info while we were there and I asked if she could have another round of stronger antibiotics – because that is what the literature suggested. She agreed.

Here is a basic explanation of PANDAS from http://pandasnetwork.org/

What is PANDAS?

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood liability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do..

The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple ticsSee Diagnostics Page.

In 1998, Dr. Susan Swedo and associates first described the PANDAS syndrome in P.A.N.D.A.S.: Clincial Description of the First 50 Cases.

Further an excellent study of 202 children by Dr. Loren Mel, et al in 2005 lends credence to the likelihood of PANDAS as a separate etiological entity.

Dr. Tamar Chanksy, author of many books dealing with childhood anxiety issues, describes symptom onset succinctly in her website Worry Wise Kids:

  • OCD
  • Choreiform movements; involuntary or irregular writhing movements of the legs, arm or face
  • Presence of tics and/or hyperactivity
  • Irritability, temper tantrums, or mood lability
  • Nighttime difficulties
  • Severe nightmares and new bedtime rituals or fears
  • Separation Anxiety
  • Age regression: going back to younger developmental stage
  • New handwriting problems, loss of math skills, sensory sensitivities

 

PANDAS has an encephalitic-like onset. Some childrens’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE.

PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur.

Cassidy finished her second round of antibiotics and still had the eye roll. By this time, she started to complain about it. She said that it didn’t hurt, but it bothered her. My worry grew into panic. But still, my mom and husband did not seem concerned.

The problem did eventually subside after about 3 months total. Was it PANDAS? Was it due to the strep? I have no idea.

She was playing with her iPod a lot and we considered that may be the cause. She lost her iPod shortly after the eye thing stopped…maybe that helped, I don’t know that either.

But with these new reports out of Le Roy, NY…I am now reignited to find out more about this.

Doctors are now blaming mass hysteria for this outbreak. I think that dismissing this as an ‘its in your head because you are a bunch of silly girls’ diagnosis is premature and short sighted. And it also kind of pisses me off.

In fact, here is a press release from a doctor who is well versed in PANDAS:

February 6, 2012

 

Press Release:

 

LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS

 

Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results

of the laboratory data that he collected in standardized fashion from eight of nine girls he

examined in Le Roy, NY.

 

National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia).

 

All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I’m confused by that because he’s never actually seen or interviewed any of the nine girls I examined.”

 

These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome?

 

Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply ‘the straw that broke the camel’s back,’” said Trifiletti.

 

However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I’ve started will be helpful in supporting my working diagnosis,” he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved.

 

As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.”

 

To reach Dr. Trifiletti contact:

 

Telephone: 201-962-7284

 

Email: trifmd@gmail.com

 

Website: http://www.site.neurokidsr.us

 

For additional Information about PANDAS:

 

http://www.pandasfoundation.org

 

http://www.pandasnetwork.org

 

http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout-pediatric-autoimmune-neuropsychiatric-disorders-associated-with streptococcalinfections.shtml

 

http://www.askdrsears.com/topics/childhood-illnesses/ocd

 

http://www.savingsammy.net

 

 

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About Heather Rayne

I am a mom, wife, writer, volunteer, eater of food, lover of animals and avid TV enthusiast. I am opinionated, honest, compassionate and sensitive. I can also be difficult, hard headed and emotional. I consider myself to have a great sense of humor and am very attracted to that in others. I am striving to live an authentic life. I am attempting to learn how to find happiness in the now. I always have hope to be a better person. That being said - I can be vulgar, negative and even a little bitchy at times. I say what I mean and my filter is often dysfunctional. With me, what you see is what you get. I have strong opinions and am quick to speak my mind. This can cause problems from time to time but I do not ever intend to hurt or offend anyone. With that - be warned. I do hope you enjoy my site. Thanks for visiting and have a swell day.

4 responses »

  1. Pingback: Trying to Get Through This Rough Patch… | Ramblings of a Neurotic Housewife

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  4. Hi 🙂 Sorry for my bad english, I am the mother of a 11 years old boy with PANDAS, living in Denmark. I came across your blog by pure coincidence, looking for new information about PANDAS. Let me suggest that you also visit this this forum for Pandas parents : http://www.latitudes.org/forums/index.php?showforum=17. You´ll get all the help you need there. Wish you, your beautyfull daughter and family the very best !

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