The 'Mysterious' Illness of LeRoy, New York

I hate to give this post a "catchy" title, because I don’t want to appear as if I am trivializing this, or even sensationalizing this. This has been a big story in the local news here in Rochester, NY. LeRoy is a small town 25 miles west of Rochester, in the next county. Add a few historical events and a lot of speculation, and this has blown up into a national and even international story.

Starting last fall, at LeRoy Junior-Senior High School, at least a dozen girls, seemingly all of a sudden, started experiencing Tourette’s-like symptoms; displaying uncontrollable tics, outbursts, shaking, and fits. The state came in to investigate and concluded that there were no environmental issues to be blamed. Many of the doctors of the girls, and school officials, have concluded that these girls are suffering from some form of “conversion disorder”, explained as “mass hysteria” or “stress-induced.”

In reading and hearing some of the local stories, this sounds to me like a shrug-of-the-shoulders, let’s-come-up-with-some-answer-so-we-can-start-treatment answer. If I want to be cynical, I might think that this is just a rush to put a stake in the ground, in order to try to limit any additional negative exposure, or to limit any potential lawsuits. If I want to go in the opposite direction, I might think this is a rush to make a definitive-enough statement, in order to at least start some sort of treatment in the hopes that this solves the girls’ issues.

This “vague” diagnosis has opened the door to a lot of wild, public speculation, which has added to the sensationalism of this story. In digging into the town’s past, reporters and other interested parties discovered that back in 1970, there was a train accident four miles from the school site. As a result of that accident, cyanide and industrial solvents spilled from the train and contaminated the ground. An EPA report in 1999 estimated approximately 35,000 gallons of TCE (trichloroethene) contaminated the area near the derailment. This quickly became the favorite theory to explain the illness, and has attracted the attention of noted environmentalist Erin Brockovich, who has brought his media entourage to bring light to this topic. Then, there were also rumors of a potential food-borne illness, linked to a local restaurant, which fed another popular theoretical explanation. And now, with the word “mystery” floating around, each major media outlet has sent their local “medical experts” and “psychological experts” to offer their opinion or “testimony.” Dr. Drew has come out. I’m surprised we haven’t heard from Dr. Oz and Dr. Phil – and maybe we have; I don’t pay that close attention.

This story touches on several of my hot-button topics: media sensationalism, combined with rushes to judgment, with the lack of understanding and patience related to potential psychological/mental issues – and this story will probably drive several posts.

BUT…when I first heard this story, and in particular, the symptoms affecting these particular students, it immediately made me think of a friend, whose son has dealt with something VERY similar: In their case, her son has a specific diagnosis, and has undergone treatment, and the treatment has been slow. I’ve known this friend since junior high, and as most stories go in this day and age, we lost touch as most people do. With the advent of Facebook, we reconnected. She is very vocal on Facebook about the ordeals her son has gone through, and she is a big advocate in raising awareness of a condition called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, or PANDAS. Wikipedia states that the PANDAS diagnosis “is used to describe a set of children who have a rapid onset of obsessive-compulsive disorder (OCD) and/or tic disorders such as Tourette syndrome (TS), following Group A beta-hemolytic streptococcal (GABHS) infections such as "strep throat" and scarlet fever The proposed link between infection and these disorders is an autoimmune reaction, where antibodies produced by the infection interfere with neuronal cells.” http://en.wikipedia.org/wiki/P.A.N.D.A.S. Additional research has led the expansion of this condition to include any trigger of the above symptoms; this “expanded” condition is known as PANS (Pediatric Acute Neuropsychiatric Syndrome), or PITAND (Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders).

SO…I decided to interview my friend about what her and her son have gone through, and how it was determined that he was suffering from PANDAS.

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JM:  When did you first realize that something was wrong?

PA:  When he was 3 1/2 or 4 years old is when I first noticed something was odd. Around that time we had enrolled him in the local school district’s pre-school program. He was fine for most of the fall session until he got a double ear infection. After that he just wasn’t the same. Over the winter break he started being really clingy, having meltdowns, nighttime urinesis, bowel incontinence, nightly nosebleeds, severe night terrors, and was really hyperactive. At times his thoughts were severely depressed and he seemed suicidal. He would say things like, “I’m the worst kid in the world. God made a mistake and I should just die and go back to Heaven.” We took him to our then pediatrician hoping for some answers. He was seen by four different doctors at our practice, all with different answers as to why these things were happening. Some doctors said ADHD, others said anxiety issues. Only one said it could be allergies and that he didn’t think it was ADHD. He thought that my son was just very intelligent for his age and had trouble relating. All the while my son was slowly spiraling out of control. During the spring session his behavior got so out of control. The meltdowns were so bad that the preschool asked him to leave the program one week prior to graduation.

At this time I also became an "internet researcher" for all sorts of behavior issues and possible causes in my spare time. I had come across the NIMH (National Institute of Mental Health) website then but didn’t pay much attention to it since the criteria needed was a strep infection, which he never showed any signs of.

In the process we discovered that he is highly allergic to many things (especially molds, and penicillin which can kill him) and was severely lactose intolerant. This all caused some of his hyperactivity (very little actually). It got so bad that his lactose issues had caused him to develop encopresis (impacted bowels) before Kindergarten. It would take almost a year for that to start to resolve, so I homeschooled him.

It seemed that he was a little bit better both in behavior and with his other issues while being home schooled, so hesitantly we enrolled him in public school for first grade. The first month or so was ok but then he got strep throat. After that his behavior got worse. If he got excited he would spin in circles or repel himself off the walls. When he met new people he would go nuts and try too hard to impress them with how fast he was, etc. He couldn't sit still and would roll all over the floor constantly. He would have emotional meltdowns that lasted for hours just because the dog licked his face or you changed the channel. He was violent and abusive with everyone. He showed no remorse for his actions if he hurt someone either. Instead he would blame them for it. Just to watch TV for him, was a complicated process of writhing on the couch, swinging his legs, turning upside down, and rolling around. To get him to eat dinner was a nightly chore. He was constantly up or squirming in his seat and he'd refuse foods based on their texture, color, or smell. He was also afraid of the dark, but not like a normal fear. It terrified him as if it were a life or death situation. No matter if the sun was blaring through the windows, the lights had to be on in the house and he carried a flashlight everywhere so that the darkness and shadows couldn't get him.

At night it was a living hell. He'd wake up with blood curdling screams five to ten times a night, and I couldn't console him. All I could do was hold him and try to soothe him. Just when he'd fall back asleep and I'd lay my head down, it would all happen again. This happened every single night, unless he was sick and on antibiotics. As a parent I felt completely helpless.

We spoke with his pediatrician again and at his suggestion decided to delve into the possibility of allergies. We had seen some videos of Dr. Doris Rapp [board-certified environmental medical specialist and pediatric allergist - www.drrapp.com] and saw the reactions some kids had to different allergens. So we saw a wonderful allergist and explained our concerns. After she examined my son she pulled me to the side and asked if I had ever considered having him checked for Tourette’s, as his fidgeting seemed a bit like that to her. It had never occurred to me and no one else had proposed that to us before. So we arranged to have him assessed at Kennedy Krieger Institute for his behaviors and also to be seen by a Neurologist at Johns Hopkins for a tic disorder. We would have to wait until around March before they could fit us in. Later we would find that both visits would leave us with empty pockets and full of anger. It turns out the world renowned neurologist we saw there is one of the top naysayers of PANDAS and he’s also on the board of directors at Kennedy Krieger. That certain world renowned doctor told us,” PANDAS, it doesn't exist." That's the one doctor bill I hate that I have to pay and I have tons of them now!

School was not good at all for our son during this time. By November 2010, he had a different behavior rubric than the other kids, multiple daily trips to the principal, was doing cartwheels in the hallways and had meltdowns so often that parent volunteers just wanted to hug him and tell him it'd be ok. Vomiting was an issue at school too. Whenever he was worried about getting in trouble, he ran to the bathroom and puked. Every day no matter how hard he wanted to do well and get a good score for the day, he just couldn't do it. It got to the point where every morning he would vomit when he saw the school bus out of fear of getting a bad score that day. Oddly, he was still accepted and well-liked by most of the kids. I would visit at lunch to give him antibiotics or lactase pills to go with his lunch. Most times kids would worry that I was coming to take him home because he threw up so much. If he wasn't in the office he was at the nurse for puking. I ended up becoming very good friends with the nurse and assistant principal from all the trips to school.

JM:  How long did it take for you to be introduced to the existence of PANDAS, and how was this introduced to you?

PA:  From the date of onset to the diagnosis from our pediatrician it was about 2 ½ -3 years, which unfortunately seems to be the standard for other PANDAS families as well.

In December of 2010 during winter break things seemed to get a little better. By that time he had strep five times since September. We spoke with a doctor about a possible tonsillectomy at some later point. January 2011 came and within one week of being in school he had a "cold" and was hyper-crazy yet again. This time his sister was sick too so we went to the doctor. This was when we were given a name to the issues that plagued our son. Our doctor noticed how hyper he was behaving. His sister clearly had signs of strep and just for giggles the doctor wanted to swab him too because," Some children get hyper as a symptom of strep." Sure enough both kids came back with a positive rapid test and culture. Once on antibiotics he seemed to calm down and get better. Four days after coming off the medication he was hyper again and his throat was red. It was strep again! I had remembered while doing research the previous year about a behavior condition relating to strep, so I Googled hyper activity as a symptom of strep. What popped up was the same thing I came across before but this time I took a longer look. It was the NIMH website for a “rare” medical condition called P.A.N.D.A.S.

I'm not saying that this diagnosis has been the easiest thing for us to handle. It is a “rare” condition that was just named about twelve years ago at NIMH by Dr. Susan Swedo [Chief Pediatrics and Developmental Neuroscience Branch at the NIMH]. At the time, many people and doctors didn't know about it or didn't believe in it.

Basically, every time my son got strep his immune system attacked his brain, causing swelling and a whole bunch of other issues. His typical symptoms are increased hyperactivity, Tourette’s tics (vomiting), choreiform movements, bipolar-like mood swings, and ADHD-like behavior. All of which magically disappear when he's strep free. It was hard for us at the time because all we could do was treat the inflammation and give antibiotics for the visible infection... but he's severely allergic to all mold so no penicillin and he's one of the rare 10% of the population allergic to cephalosporins. Zithromax doesn't work for him so the poor kid had to take clindamycin, which is one of the drugs they treat MRSA with.

JM:  How much of your own research have you done in learning about PANDAS? What is your take on the general view in the medical field about PANDAS?

PA:  I would have to say since January 2011 alone, I’ve probably spent thousands of hours researching more about it and talking with others, but in the four years total, countless. I truly believe that as a parent your child deserves no less from you. You’re their first teacher and best advocate!

Just since last summer there’s been so much more information available. Many PANDAS families and doctors have come forward to help bring awareness to the condition. There are so many websites now (listed at the end):

There’s even websites in other countries; the list continues to grow. Also, there are two books by PANDAS moms about their experiences through it all, Saving Sammy and Joshua’s Missing Peace.

Unfortunately, I feel there is still a VERY strong resistance to the idea that bacteria and infection can cause neurological and mental health issues. It would change the world if it was accepted and that scares a lot of people. They have jobs to think of after all. Continuing research is showing that even viral conditions can cause exacerbations in susceptible people and that it’s not just in pre-pubescent kids. It can occur at any age. That’s a BIG part of the problem too. The listed criteria are being read like a mantra but its outdated information. That’s really a global issue too and the condition is NOT that rare, just under diagnosed.

I’ve found far too often there’s this idea to just “treat the symptoms, and if you in some way stumble on the root cause, good for you” attitude. I think it’s a shame that we’ve lost a more holistic approach to medicine where you rule out everything to find the root cause and then cure it. In today’s world of western medicine we just pop a magic little pill based on the symptoms…but what if that pill isn’t the right thing to take? I often wonder just how many other kids have been misdiagnosed with things like ADHD, bipolar, or schizophrenia that may have a simple infection that was left untreated only because just their symptoms were considered. If your child has symptoms wax and wane you might consider looking into an infectious cause first, just like they discussed on Anderson Cooper. I’m hopeful though, just last year there was maybe twelve known providers listed on the International PANDAS Foundation’s website, now there’s about three pages worth. So it’s slow going but more are seeing the facts with this condition and accepting it.

JM:  What steps did you / do you have to take to keep his symptoms in check?

PA:  We were very careful about spotting his "tells" and would rush him in to the pediatrician or Urgent Care center for cultures and medications. Always with a follow up appointment once he was done the medication to be sure it was gone. It never was.

After January 2011, he had strep another seven times before we had his tonsils and adenoids removed in June 2011. Since that surgery his behavior has changed so dramatically for the better! Even he noticed changes in himself within the first three days post-op. He said that , “the scrambles were gone from his brain and he could think better” When we asked him about the scrambles he told us every day when he’d wake up it was like a noise in his head similar to losing the connection on a TV signal. You know like the static of a scrambled station. We had never known that before.

Also, for the first time since he was three, he could finally sleep through the night peacefully. No more visits to the office! The little changes in him at home have been amazing. We cried almost daily all summer long, just over the little things that are now possible. Life has gotten better for him and there's no way we can ever truly express our gratitude to his doctors. Sorry if I’m rambling.

So far this year in second grade he's been on the standard rubric and is earning consistent good scores with no visits to the office and minimal trips to the nurse. We’re very optimistic that this is something that we can handle and hopefully fully recover from.

Thanks to our Pediatrician’s Physician’s Assistant, in November of 2011 we started seeing Dr. Elizabeth Latimer of the Latimer PANDAS Group in Bethesda, MD. She thoroughly tested him for immuno-defiencies and any kid of bacterial issues. She ran about 42 different blood tests and checked his stools to see just what we were dealing with. Strep is our main trigger. The whole family, even the pets, had to be tested to see if we were strep carriers. Our daughter just had her tonsils and Adenoids removed due to chronic infections as well. We think she was re-infecting our son. We’re now giving our son daily antibiotics for a 30-day period with certain probiotics (that aren’t affected by the antibiotics). We also give him ibuprofen on his bad days to help with the inflammation. We have to take monthly bleach baths too to kill off any strep on the skin and under the nails.

Now when we see an exacerbation we call her right away as well as take him in locally for a culture to confirm it. We’re lucky that we get positive cultures; a lot of PANDAS kids only show positive results on blood work.

JM:  What would you suggest to the kids, parents, and officials in LeRoy?

PA:  Wow...that’s a good question. What could I suggest to the kids? Don’t give up. Don’t accept the first answers you been given until you are thoroughly tested.

To the parents, we understand your frustrations but please keep pushing and get tested by a PANDAS doctor or an infectious disease specialist to rule out any bacterial, viral, or Immuno-defiencies. Don’t let them stamp your kids with Conversion Disorder. That’s a diagnosis of exclusion… so that is given when all else has been ruled out and I don’t believe it has been. You’re not alone but it feels that way so often. I’d suggest talking to someone about it. It’s better when you can share your thought and feelings instead of just holding each day trying to get by.

To the officials in LeRoy, seriously what can I say? I suggest that you become more aware of ALL the possibilities that are out there. The community as a whole is suffering from this.

I know that there are many “experts” seem to have a “God” complex, like they just can’t be wrong. They go by what they have been taught and seen. Change is a hard thing to accept but honestly each person is an individual and should be evaluated accordingly…. If it takes delving into new things that may not be in your area of expertise, then do it people! This situation in LeRoy is not about doctor’s egos, or PANDAS awareness, and it shouldn’t be about politics either... …. This is about is getting these kids and families the answers they deserve and the help they need. I wish them all a proper diagnosis with treatment and quick recovery!

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PANDAS links:

www.internationalpandasfoundation.org

www.pandasresourcenetwork.com

pandasnetwork.org

www.savingsammy.net ,

www.latitudes.org/forums/index.php?s=c5d9c904e2522cdcb50779398acafefe&showforum=17,

www.ocfoundation.org/EO_PANDAS.aspx,

www.adhd.com.au/PANDAS.htm ,

www.joshuasmissingpeace.com ,

intramural.nimh.nih.gov/pdn/web.htm ,

www.tabup.com/PANDAS ,

www.pansawareness.org ,

intramural.nimh.nih.gov/pdn/web.htm

Introductory info gleaned from CNN http://www.cnn.com/and the Rochester Democrat & Chronicle http://www.democratandchronicle.com/