Autoimmunity: autism, pandas, vaccines

Here is another fantastic article from the Age Of Autism.

Between my two children, we have dealt with food allergies, environmental allergies, asthma, pandas, chronic lyme disease and co-infections, and let's not forget - autism. And here I sit as one of the "lucky" ones. A parent that has had some success with treatments. For the majority out there, not the case.

So depressing, but had to post!

Saving Sammy

I finally got around to catching up on research. The fairly new book (Sept.09) Saving Sammy and Today Show interview is a true inspiration. I enjoyed watching the interview and was so happy to know that the mom has shared her story.

The story is about her son that was diagnosed with what I think is severe OCD but actually had PANDAS.

The fear and hesitation in the doctor voice made me sad, but I am glad she did put herself out there. Rare for anyone in this business of "new" illnesses caused by bacteria or viruses that were once thought benign such as Lyme, Bartonella, Babesia, Mycoplasma, and last but not least, Strep.

I dream of the day that doctors refer to dynamic, updated, guidelines that reflect the children that reside in our classrooms and in our homes. Our generation.

Can Strep Throat Lead to Behavior Problems?

MARCH 19, 2010, 12:31 PM New york times

Can Strep Throat Lead to Behavior Problems?

By THE NEW YORK TIMES

Can a bout of strep throat lead to serious behavioral problems like obsessive hand washing or odd tics in children?

Steve Kagan for The New York Times Obsessive hand washing sometimes follows strep infections; are the two related?

The condition, known as Pandas, for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection, remains a controversial topic among child health experts. Dr. Robert King and Dr. James Leckman of the Yale Child Study Center, who recently joined the Consults blog to answer readers’ questions about Tourette’s syndrome, here respond to readers concerned about the link between strep tics and obsessive-compulsive disorders.

Q.

RS from N.J. writes:

If your child shows symptoms of a tic disorder, obsessive-compulsive disorder or Tourette’s syndrome, you should have them checked for strep. Pandas, could be the cause. A simple blood test will tell if your child’s “strep titers” are at an abnormal level.

This can be treated with antibiotics. Worth checking out before you subject your child to psychiatric medications. Not all doctors believe in Pands. But let me tell you, it’s worth finding a doctor who does.

For more info check out the Web site Saving Sammy: Curing the Boy Who Got O.C.D.

Q.

Bethany Brinton from Salt Lake City asks:

The first sign of scarlet fever is obsessive hand washing, hours before the rash; Tourette’s is in the strep/O.C.D. family, or Panda. Why don’t they treat it with I.V. antibiotics and probiotics?

A.

Dr. King and Dr. Leckman respond:

Pandas, or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, remains a controversial topic for many experts in Tourette’s.

Two recently completed intensive longitudinal studies found little evidence to support the existence of Pandas as presently defined. Since the onset of tics is common in middle childhood and as many as half of young school age children may have strep throat in a given year, the co-occurrence of new tics and a strep infection will happen as mere coincidence, without any specific causal link, in a certain number of children.

Furthermore, since stress, including the stress of illness, can be a cause of tic flare-ups, it is not always clear if or when there is a more specific causal link.

That said, some researchers, including ourselves, suspect that the label of Pandas is probably best reserved for a subset of children with apparently strep-related O.C.D. or tics, and that it is this subset of cases that need to be more intensively studied. Such cases probably fall on a continuum with Sydenham’s chorea and other post-infectious disorders that can lead to an inflammation in the basal ganglia, a part of the brain involved in motor control and learning.

These more narrowly defined Pandas cases appear to have an abrupt sudden onset, over the course of two days or less, and are marked by separation anxiety and obsessive-compulsive symptoms, a loss of writing skills and sleep problems. Tics are often present, but they can also confuse the picture, especially if they had been present in some form prior to Pandas onset.

The overuse of antibiotics has its hazards, both for individuals and communities, including allergic reactions and fostering the development of antibiotic-resistant strains of bacteria. Hence, antibiotics — and certainly intravenous antibiotics — are not indicated for the typical case of tic disorder but should be reserved for cases where there is clear-cut and convincing evidence that the onset or recurrent flare-up of tics/O.C.D. is linked to strep infection.

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Q.

mlw from Brooklyn asks:

What percentage of children could be misdiagnosed as Tourette’s and actually have Pandas?

A.

Dr. King and Dr. Leckman respond:

Another great question. Once we have a reliable and valid way of making a diagnosis of Pandas, we should be able to provide an answer.

As noted above, there is much controversy as to whether Pandas exist and, if so, how should they be defined. At present, in making a Pandas diagnsosis, we focus much more on the sudden, abrupt onset — unusually in less than 48 hours — of severe anxiety, obsessive-compulsive symptoms, sleep problems and behavioral regression and a marked deterioration of writing and drawing abilities. Tics may be present, but they are probably not a key feature.

I am happy to see a major newspaper covering this again. My BFF told me about Saving Sammy, a must read. It's fascinating how the medical community continues to be divided over the viability of a P.A.N.D.A.S. diagnosis. Must be about money. Or the fact there is no one-size-fits all. When will they get there is no such thing?

For P.A.N.D.A.S. Parents

Take a look at this forum: Latitudes.org

Thanks Amanda for reminding me about it. There are a lot of parents that have tried IVIG and other things over there for P.A.N.D.A.S. Other parents are the best source of info!

Strep link to OCD in Mice

Antibodies to strep throat bacteria linked to obsessive compulsive disorder in mice

August 11, 2009 05:02 PM

A new study by researchers at Columbia University Mailman School of Public Health's Center for Infection and Immunity indicates that pediatric obsessive-compulsive disorder (OCD), Tourette syndrome and/or tic disorder may develop from an inappropriate immune response to the bacteria causing common throat infections. The mouse model findings, published online by Nature Publishing Group in this week's Molecular Psychiatry, support the view that this condition is a distinct disorder, and represent a key advance in tracing the path leading from an ordinary infection in childhood to the surfacing of a psychiatric syndrome. The research provides new insights into identifying children at risk for autoimmune brain disorders and suggests potential avenues for treatment.

OCD and tic disorders affect a significant portion of the population. More than 25% of adults and over 3% of children manifest some features of these disorders. Until now, scientists have been unable to convincingly document the association between the appearance of antibodies directed against Group A beta-hemolytic streptoccoccus (GABHS) in peripheral blood and the onset of the behavioral and motor aspects of the disorder. As a result, treatment strategies were restricted to targeting symptoms rather than causes.

Strep throat bacteria, or GABHS, are known to cause autoimmune disorders such as Sydenham chorea, with symptoms such as fever and uncontrolled tics of the face or extremities in susceptible individuals, prompting some scientists to suspect that GABHS could play a role in a syndrome known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), a rapid-onset and episodic form of OCD and tic disorders observed in some children. The latest study by CII researchers supports the hypothesis that some neuropsychiatric syndromes may be triggered by direct action of GABHS-associated antibodies on the brain. Whether environmental factors other than GABHS can lead to similar effects is as yet unknown.

Using a mouse model of PANDAS, Mady Hornig, MD, associate professor of epidemiology at Columbia University Mailman School of Public Health, and colleagues demonstrate this suspected link between GABHS antibodies and the psychiatric symptoms of the disorder. Immunizing mice with an inactivated form of the bacteria, CII researchers found that the mice exhibited repetitive behaviors reminiscent of children with PANDAS. Injection of antibodies from the immunized mice into the bloodstream of non-immunized mice replicated these behaviors.

"These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome," said Dr. Hornig. "Our findings in this animal model support and may explain results of Swedo and colleagues in treating children with PANDAS using plasmapheresis or intravenous immunoglobulin (IVIg). They may also have implications for understanding, preventing or treating other disorders potentially linked to autoimmunity, including autism spectrum, mood, attentional, learning, and eating disorders."

"This work provides strong corroboration for a link between exposure to infection, development of an autoimmune response, and the onset of repetitive behaviors and deficits in attention, learning, and social interaction," says CII Director W. Ian Lipkin, MD, John Snow Professor of Epidemiology, and professor of Neurology and Pathology at Columbia University. "Further investigations in this strep-triggered, autoimmune mouse model of PANDAS will promote the discovery of more effective interventions for these disabling disorders and guide the development of robust prevention strategies."

Source : Columbia University's Mailman School of Public Health

No shocker here, but wanted to post something new on the topic. At least it's not being ignored and now the almighty medical community is happy they can make a solid connection. Goody for them.

Living With Choices

This is my first post since our move. My family and I moved out of Lymeland across the country to the beautiful Pacific North West. No matter how you slice it, moving is hard even when things go as planned don't you think? My husband lost his job over the winter, so we decided it was a good time to look for jobs out of Lymeland. Fortunately, we were able to do it, and got out.

We are still adjusting to our radically different lifestyle - from living on 3 acres in the middle of the woods in a small town to a city apartment up 2 flights of stairs. I am having college flashbacks that's for sure! We hope to sell our house back east soon, and then we'll see where we stand. It gives me perspective to live like so many people do all of their lives with kids and dogs, in a much smaller living space. We really had it good living in a house where I could just open the door to let the dogs outside, the kids could come and go as they please. Now I abide by the poop schedule along with the school schedule.

As we drove away from our house for the last time it felt right. Not that I wasn't crying a bit, we all were, but it was grief just as grief is, nothing else like regret, uncertainty.

Although our lives are all harder for the time being, I am relieved that my kids are out of a Lyme endemic area. I had to face the music - my kids are SICK. My kids have weak immune systems, and will probably be this way for the rest of their lives. I have a hard time accepting this fact, something I work on each day.

A practical decision. Getting Sydney better is one thing, but then once she is "better", keeping her in the same place like a sitting duck was just too much for me. And for Leo too - he has shown positive results to some of the Lyme coinfections, but is basically asymptomatic at this point. He had the facial tics, but they are gone for the time being, and maintain him through Rifing, homeopathy, and an anti-Lyme herbal regiment. While I am ecstatic to get to the root of the tics, I have to keep up with the program to keep him healthy. A delicate balancing act - us moms all seem to have one.

Both kids continue to have naturally low Ig levels which is part of the issue with them keeping bacteria under control - strep, lyme, the coinfections like Mycoplasma, Babesia, and Bartonella. They are high with strep every time we test! The facial tics seem to be my barometer to illness for them. I'd prefer something else, but at least I finally know and the guessing game begins.

Some good news - Sydney had a major jump in improvement over the summer, counter to what I predicted happening with the toll and stress of moving. We continue to have her on 4 antibiotics along with homeopathy for support. We are SO RELIEVED.

As the ILADS doctors say (they are the DAN of Lyme docs), "There is no cure of these diseases. Antibiotics work to cut the population down to a point where the immune system can take over. This is where herbs and homeopathy come in for support." So that is what happened - we did a trial on herbs and that appears to take the credit for some of her chronic pain disappearing. For instance, her sore throat that she had for 10 months is now gone, courtesy of a modified Cowden protocol.

The kids are adjusting nicely to their new school. It is hard though, especially for Leo as a 5th grader. All these kids that have known each other forever. His new friend Kevin that he met over the summer hasn't played with him yet at recess. He is nice to him and says hi, but that's it for now. I know it hurts Leo, but he doesn't admit it. He keeps reaching out, playing with different kids in the "jock" group so far this week. For Sydney, it's so much easier as anyone with a girl knows. And she is younger, in 3rd grade.

I am hoping that what we'd done with Leo will not crumble putting him in a completely new setting on all levels. A temporary home, a new school, all new people. It was really the only truly hard thing to leave behind - knowing our old team was just minutes away if we needed them for an intervention or for tutoring . We had to weigh in on the cost/benefits - we now had to make a decision that had Sydney more in mind than Leo.

It's been heartbreaking seeing him miss his old BFF. They are very cute on the phone and on video chat. Validating on how deep of a friendship he can have. He was SO sad, and still is. I am sure it just takes time. I felt bad for his BFF too, his parents tell me he is having a hard time. A little displaced at recess, just walks around alone sometimes, not sure what to do. They were inseparable for 2 years. It's been great talking to Leo about friendships, and to teach him about long distance ones, and how you need to adjust for phone conversations. It's been a learning experience for us all. He wrote a lot of letters and emails, which seemed to inspire him and make him feel good.

Who knows where we'll end up or how the school year will end. My hope is that Leo will have a couple good friends to go to middle school with next year. I am anxiously awaiting his standardized testing scores from the spring - hopefully they'll be validating or be telling on what we need to work on. As his old clinical supervisor says "The testing is like a test for ASD. All it does is test for inferences." I know this isn't his strong suit, but hope he tests in the normal range like he did last year.

The husband is tolling away, his new job is great but overwhelming and beyond busy. It will be like this until next year. We also have one car, so public transportation is beginning to take a toll too.

For me, I am still doing the settling in errands and chores. On major medical duty - getting doctors set up, etc. I am a bit isolated in the apt, not in a neighborhood street yet making friends. But, I've met some really nice parents so far, just don't have that consistency yet. Time will tell.

Re-Introduction, Still A Sp. Ed. Mom

Hi, my name is Ashley Morgan. I am a 43 year old mom of two perfect children. I have been married to my DH for 12 years. He is a great man and father. I have struggled on and off with depression, including post partum, and food is my vice along with really bad television. I realize I have come very far in life, a lot of childhood dysfunction to get over. After a lot of hard work and hard lessons I feel that today I am pretty healthy inside. Having a child with an ASD also contributed greatly to me getting real, cleaning house, and knowing what is important.

Currently, my challenges revolve around acceptance of what my life has become, specific to disability #2 that prevails in our house. I am an active student of buddhism, and practice meditation and yoga. These things have helped me with coping skills and perspective. I am happy to have found them, as I realize my skill are lousy, even on a good day.

My son is 10 1/2 and is has recovered from an Autism Spectrum Disorder (PDD-NOS to be exact) about 5 years ago. For those 5 years he's been going to school like a regular kid, no longer disabled by his label. Although Yale diagnosed him at 2 and also took away his diagnosis, I still consider him as a child on the spectrum as there is no cure. There are no real signs of ASD, standardized testing and teacher feedback is age appropriate or higher, his biomedical testing doesn't indicate any typical Autism signs like glutathione deficiency or metal toxicity. He lives stigma-free as we kept his diagnosis from his teachers and peers upon entering kindergarten. He may not hold my hand in parking lots anymore and prefers to talk to his friends on the phone rather than me, but he is still my big boy. He is really into baseball and basketball, and loves practicing his yo-yo skills and acoustic guitar.

My perfect sweet boy has P.A.N.D.A.S., a sensitivity to Strep, and also has Lyme but on a very small/suppressed level. Today Leo's symptoms are facial tics that come and go in severity based on what is bacterial/viral load is. Homeopathy, Rifing, and of course out-of-control Nutrition are my key tools.

On Leo's 10th birthday I had a minor breakdown. Turning 40 didn't bother me, being still overweight didn't bother me, but hey realizing that I've BEEN A MOM for a decade really got to me. I am not in the mood to caveat and talk about all the good things about motherhood. Of course I adore and love my children,. It's that my life's sole purpose has been major disabilities and disease.
Learning.
Fighting
Grieving
Trying to sleep
And repeat
You know the drill!

My daughter Sydney was diagnosed with Lyme Disease and 2 other Lyme related diseases (Bartonella and Babesiosis) this past fall when Leo turned 10. That was hard. Again? That initial craziness, the ramp up. Different disability, but very much the same when it comes to all the categories we Autism moms can relate to. My daughter Sydney is going to be 8 in a few weeks. She asked me if she still will have Lyme disease on her birthday and I can now say YES.

Sydney is amazing. A friendly, open, empathetic soul. Loves animals and nature and can't get enough of her family and friends. She is very academic and is a very school oriented person. She is addicted to Cam Jansen and Junie B. Reads them over and over as her favorite past time. She loves dance and performing, her favorite thing in the world. She also has P.A.N.D.A.S. symptoms on top of her Lyme Diseases.

I'm back to attending health related workshops and here I see my new disability merge with the old. New Lyme friends and my very best of friends (Autism moms) in the same room.

I find myself again struggling with acceptance. I wish I could let go of my desire to be a regular mom with a regular job. I don't want to be a specialist in autism or Lyme or anything else in the health category. I have no choice, this is what it is. Why is it hard for me to accept? I am no longer angry that my daughter lives with chronic 24/7 all-over body pain and has missed half of 2nd grade. The angry phase was no fun. Phew.

I worry about my kids' futures constantly. Leo asks, "Mom will I always have tics?" I say "No" although who knows.

I look around and compare myself to other moms, why do I struggle so much? I am my own worst enemy as it seems most people have figured out how to cope with their own challenges in life.

I want to never read a label again, go back to advertising, and start smoking.

Strep and Rife Machines

I finally have some positive news to share. I found a technology that dramatically reduces Leo's facial tics. Both my kids, especially my 10 year old son Leo, has an autoimmune response when exposed to strep. No high fever, angry sore throat here. His class could have 4 kids infected and home and he'll respond with eye blinks, strabismus, neck turns, and a furrowed brow. And again when I tested him on the EAV machine, strep came up as the winner.

His facial tics have been the worst EVER this fall. What does this mean? Did I wait too long to find something that works? Is he just getting more immune compromised? I just don't know and I'm certainly not going to waste my time by asking a medical doctor.

The strep nosode (a homeopathic remedy) helped for a while, but eventually the tics came back and the repeat dosing and other remedies stopped working. I'm sure this is a failure on my part (the mom practitioner), not with homeopathy. When you get it right, it works permanently.

I researched and purchased a Rife machine for my daughter Sydney's chronic Lyme disease. Yes, we are still in Lyme Hell after 6 weeks on antibiotics with no end in sight. The Rife machine, another way to kill the Lyme bacteria, is part 2 of my master plan. We will use this to wipe out any remaining/hiding Lyme so she will not relapse and go back to Lyme Hell (and neither will the rest of us in the family).

The machine, the EMX, costs around 1300 with shipping. I purchased mine at www.rifelabs.com. People that are electricians can build them by themselves with an old stereo system and other stuff you buy at Home Depot. Well meaning people have posted all this info for free, including the frequencies for the various Lyme life cycles. I couldn't find much about strep and rifing, hard enough with Lyme, but the movement is growing rapidly.

Here is another website with Rife info: http://www.lymebook.com.

So here I am, in my world of bacteria. Lyme and Strep. My new world. Somewhat new anyway. Perhaps a new possibility to end chronic health issues. Dare I type it.

The New Strep and the Role of Prevnar, a Vaccine

October 14, 2008
Worrisome Infection Eludes a Leading Children’s Vaccine

By LAURA BEIL
A highly drug-resistant germ has become a common cause of meningitis, pneumonia and other life-threatening conditions in young children. The culprit — a strain of strep bacteria — can conquer almost all antibiotics in pediatrics, and has dodged a vaccine otherwise credited with causing the number of serious infections in children to plummet.

Since 2000, American toddlers have been immunized against Streptococcus pneumoniae, or pneumococcus, an organism that preys largely on children younger than 5 and the elderly. Pneumococcal meningitis can be fatal, and survivors are often left with deafness and other lifelong neurological problems.

And by most measures, the vaccine has worked: by 2002, rates of infection from these bacteria had dropped as much as 80 percent in some places. But progress has now stalled, and infection with a particular type of pneumococcus, Serotype 19A, is steadily rising.

“It’s very much a concern,” said Bernard Beall, a pneumococcal expert at the federal Centers for Disease Control and Prevention. Last year, in The Journal of the American Medical Association, pediatricians described an outbreak of Serotype 19A ear infections in Rochester that could be cured only by surgically implanting tubes, or by turning to adult medicines not yet tested for safety in children.

A greater worry, however, is the frequency of meningitis, pneumonia and bloodstream infections from Serotype 19A. Since 2001, rates of these and other invasive pneumococcal diseases have crept upward, to more than 10 per 100,000 children from about 2 per 100,000. A fourfold increase in life-threatening infections has also occurred among the elderly.

The vaccine, Prevnar, is aimed at seven types of bacteria that were responsible for 70 to 80 percent of pneumococcal illness during the 1990s. Because pneumococci come in 91 forms, experts have worried from the start whether bacteria that were just as deadly, but not wiped out by the vaccine, might move in as opportunists when the competition suddenly vanished.

“Nature abhors a vacuum,” said Dr. Steven Black of Cincinnati Children’s Hospital. Indeed, almost all pneumococcal infections among American children today are caused by versions not covered by the vaccine, and 19A is leading the way. “People hoped against hope it wouldn’t happen,” he said.

The vaccine’s manufacturer, Wyeth, says it has been working quickly to develop a new product to counter 19A and five other pneumococcal variations, along with the original seven. The company will release results of the first large studies of the newer version this month at an infectious disease meeting in Washington.

“There was no point where we said to ourselves, ‘We missed it, we need to put in 19A,’ ” said Emilio A. Emini, head of vaccine research and development for Wyeth. The company was always prepared to remake the product, he said.

Once a new vaccine demonstrates that it can protect against pneumococcus, it must work its way through the approval process — passing tests of effectiveness and safety — before it can be licensed. Researchers will also try to determine whether young children who have been immunized with the old Prevnar should be revaccinated to protect themselves from 19A.

The remodeling of a vaccine so soon after its approval is highly unusual, but so was the effort to tackle pneumococcus.

The bacteria live in the nose and throat, usually as microbial freeloaders of no consequence. Occasionally — often after a simple viral infection — pneumococci slip into inner areas of the body and cause disease. Weaker immune systems in the very young and the very old leave them most vulnerable. (The pneumonia shot in older people includes 19A, but many elderly people have not received the immunization.)

Not all of the 91 incarnations of pneumococcal bacteria are dangerous. They developed so much variety by mingling in the back of the throat, exchanging genetic material as eagerly as children trading Halloween candy. The variation in genes slightly alters how the bacteria function and how they are received by the immune system.

For vaccine manufacturers, pneumococci’s diversity presented a challenge: how to teach the immune system to recognize a target that may look a little different from child to child. “This is the most complex biological product ever made,” Dr. Emini said.

Serotype 19A was around in the 1990s, though uncommon, and the vaccine includes a similar version called 19F. The hope in 2000 was that 19F looked enough like 19A to set off an immune reaction. It did not.

Experts say it is hard to know what role the introduction of Prevnar may have played in the rise of the bacteria, which was gaining momentum in some countries before the vaccine’s adoption. For example, researchers from GlaxoSmithKline, which is introducing its own pneumococcal vaccine, reported last month that Serotype 19A became more common in Belgium from 2001 to 2004 — years when pneumococcal vaccination was rare in that country. Similar reports have emerged from China, South Korea and Israel.

Pneumococci ebb and flow in natural cycles, and some types have gained a survival advantage by growing resistant to a host of drugs. The vaccine may have simply amplified natural trends..

“I don’t think anyone can tell you the relative contributions of these factors,” said Dr. Sheldon L. Kaplan of Texas Children’s Hospital in Houston. This summer, he and his colleagues described a growing number of cases of drug-resistant mastoiditis, an infection of an inner-ear bone, from 19A.

Experts are now watching to see how forcefully the organism will spread before the new immunization arrives. Wyeth says it hopes to file an application with the Food and Drug Administration in 2009.

Disease experts also wonder what organisms like 19A mean for the future of pneumococcal infections. Public health experts once hoped the infection could be defeated, but it now appears that pneumococci may be playing a game of cat and mouse.

“The pneumococcus has shown an extraordinary ability to evolve to our strategies,” said Dr. Beall of the C.D.C.

Yet he and others are quick to say that immunization remains highly effective, even if it leaves some children behind. “This is not a failure of the vaccine,” said Dr. George H. McCracken Jr. of the University of Texas Southwestern Medical Center at Dallas. Even with the rise of 19A, children are much less likely to become ill from pneumococcal infections.

Dr. McCracken hopes that researchers will one day avoid threats like 19A entirely by developing a vaccine that primes the immune system to recognize some element common to all 91 types of pneumococci — in the way a quiche, an omelet and a custard pie are all versions of eggs. But until such an immunization comes along, he said, pediatricians will be forced to battle the pneumococcus as they always have, by trying to stay one strain ahead of its game.

Copyright 2008 The New York Times

This isn't suprising and very disturbing. I am at a loss of what to say here.

First week of 4th Grade, He's Catching On

D.C. shoes are IN for both kids. They look like giant puffy clown shoes to me, but I guess I'm not the one wearing them!

Leo and Sydney got on the bus the first day of school like it was a normal day from the spring. No real excitement or anticipation, just business as usual. I, on the other hand, was fine until the bus appeared over the little hill, and my eyes started to well up. Sydney, now in 2nd grade, looks at me while reaching out to touch my shoulder, and says"It'll be okay, Mom." Leo, now in 4th grade, dutifully leaned over for an A frame and off they went, leaving me confused as to where all the time went. I logically know, but man, it's still tough for me.

Sydney and Leo are in the mediocre grades at our schools, they are both considered repeat/reinforcer years. 1st, 3rd, and 5th are challenging and demanding, they throw all the new stuff at them in these grades and let the dust settle in between. I kind of like this strategy, should be a fairly easy year with not very much homework.

But back to the first week, Leo HATES school. Each day he says how absolutely boring it is, and honestly I can't blame him. Now that he's older, they go to lunch later, and they have their specials first thing in the morning, so the day isn't broken up much. He tells me that he tries not to look at the clock, and when he finally does, only 5 or 10 minutes have passed and it "just sucks, Mom." I've been there, and he's finally catching on to the rest of his life. The cheerleading cushy fun energetic times are over I think. But I do like his teacher, a sweet older man, his first male teacher. He's very old school, very ernest, a sports fan, and has a dry sense of humor. It's probably a good fit even though he's not that exciting.

Leo learned that an instrument was optional this year and they do weekly pullouts, he signed up for violin just to escape! I rented the instrument, so hopefully he'll actually enjoy but either way I'm covered. I can already hear the violin practice....

The social makeup looks very good this year. A nice group of boys in Leo's class, including his BFF. We are thrilled because this boy is a great friend in every way, they learn from each other, and we like the parents. Leo is playing AAA fall ball and is loving it per usual. Most of the same kids, some a blast from the past, really fun. He's learning to pitch now, I really like how they take turns playing ALL the positions. I still can't believe he can catch a ball let alone play organized ball sports by choice. Leo takes his football to school every day, and they play touch football games at recess. A nice group of boys that broke off from a large group that are more competitive and aggressive. A turnoff for Leo, but the good news is that he isn't alone with these sentiments. He's happy with his friends, I am estatic about this.

Sydney had a good start, then got a flu that had her miss an entire week of school. She was so sick, I thought for a while she may have had strep or even Lyme. I still think both my kids have some sort of suppressed Lyme based on their makeup of face tics and environmental sensitivities. Her tests came back negative, but they wouldn't test her for blood, which is what I really wanted to see about Lyme. But they wouldn't because she had abdominal symptoms which in theory are not Lyme. Such a hotly debated topic that I need to learn more about. The silver lining was this flu caused her chronic symptoms to get better. After 5 months of chronic tics that kept changing and coming back, she has been tic free for a week. In this house, we have bouts of wellness, so I can say she is now well, no chronic or acute illness!

I'm still working on Leo, he has a minor cold that's almost better, and his tics are minor, about 85% better. We are on our way, a remedy that in theory addressed his underlying root illness seems to be helping. I can put him back on his regular remedy soon and see what happens.

So far so good. I'm still waiting for two big things - the Yale writeup and the standardized testing results that should be mailed to us over the next couple of weeks. With these two instruments I should have something to go on to plan for Leo's future support.

As far as I go, I'm busy studying for my homeopathy degree and slowly updating my main website, www.hiddenrecovery.com, in hopes I can finally publish an article I've ignored for a very long time. I just need to do it. I am feeling pretty good about things these days, the kids seem happy which makes mom happy. I can't complain (well, other than about Sarah Palin or the economy crisis).

NY Times: Strep Throat That Was Lemiere's syndrome

September 14, 2008
DIAGNOSIS
The Strep Throat That Wasn't

By LISA SANDERS, M.D.
1.Symptoms

"I — can't — breathe," the boy gasped. There was panic in his voice and face. He moved restlessly in his hospital bed, tugging at the clear plastic mask covering his nose and mouth. An alarm sounded distantly, alerting the nurses to the boy's distress in the pediatric intensive-care unit of the Cardinal Glennon Children's Medical Center in St. Louis. Before the nurses could respond, the boy's mother replaced the oxygen mask, stroking his face and murmuring reassurances as if he were 7 years old rather than 17.

Dr. Jeremy Garrett, an associate professor of pediatrics at St. Louis University School of Medicine, was worried about the boy. When Garrett first saw him, early that morning, he wondered what this robust man-child was doing in the ward reserved for the very sickest children. At that point, the patient had a fever but otherwise looked well.

Since then, the boy's symptoms had become significantly worse. The amount of oxygen in his blood was terrifyingly low despite getting 100 percent oxygen through the mask covering the lower half of his face. (The air we typically breathe contains about 20 percent oxygen.) And he was breathing rapidly, at nearly three times the normal rate. He had episodes of shuddering, body-wrenching chills — where blanket after blanket couldn't warm him — followed by fevers as high as 105 degrees.

In reviewing the chart, Garrett saw that the boy had been well until six days earlier, when he awoke with a fever and sore throat. He saw his family doctor the next day, who diagnosed a strep throat and started the boy on a five-day course of azithromycin — an antibiotic widely used in part because it is convenient, needing to be taken only once each day. No strep test was done — probably, Garrett figured, because the diagnosis seemed obvious. Despite the antibiotics, the boy continued to spike fevers up to 102 degrees, and the pain and swelling had migrated from his throat to the right side of his neck.

The boy's parents took him to the hospital because something about the way he looked scared them. He wasn't confused, but his responses were slow and strangely deliberate.

2. Investigation

When the family arrived at the emergency department, the boy had a fever and was breathing rapidly. The right side of his neck was tender and slightly red. The rest of the exam was normal. A chest X-rayrevealed a few small patches of white in both lungs — areas that would normally show up as black. Blood tests indicated that the blood cells that fight infection were quite elevated. And most of those cells were immature forms, called bands, suggesting that many of the veteran fighter cells had already been destroyed by a serious infection.

The emergency-department doctors started the boy on two antibiotics for what they thought was probably a pneumonia. Although the patient didn't have much of a cough and the findings on the X-ray didn't seem significant enough to cause a week of fever and shortness of breath, the doctors couldn't find any other abnormality. After the boy's fever went up and his oxygen level went down 12 hours after his admission, Garrett added a third antibiotic and began to wonder what else this might be.

Garrett's concern was that a hidden infection was now seeding his lungs with flecks of infected tissue. That would explain the intermittent fever and patchy image on the chest X-ray. Was this endocarditis, an infection of the valves of the heart? Endocarditis can cause persistent fervers and desseminate infected tissue throughout the body. What about Lemierre's syndrome — a rare infection caused by bacteria that usually start in the tonsils but then invade the vessels of the neck, causing the blood to clot there and peppering the lungs with infected bits? The boy had complained of pain just below the right side of his jaw. Or was this an abscess hidden in the deep recesses of his tonsils? Such a walled-off pocket of infection might not respond to even the most powerful antibiotics.

As Garrett pored over the chart, he noted that each of these possibilities had already been considered. The boy had been seen by an cardiologist, ear, nose and throat specialist and an infectious-disease expert. An echocardiogram — an ultrasound of the heart — showed no sign of infection of his valves. He had an ultrasound of his neck as well to look for an abscess or clot in the vessels there. When none were found, doctors ruled out tonsillar abscess and Lemierre's. Blood cultures still had not given the doctors any clue what the infectious agent might be.

Overnight the boy's breathing continued to worsen. By early the next morning, he could no longer supply his body with the oxygen he needed, and he was put on a ventilator. Simply keeping the boy alive became the doctor's sole focus.

After three difficult days, the team finally was given a clue — though it was nearly missed. Garrett saw the resident looking through some papers in the boy's chart. What's that? he recalls asking. The blood cultures finally grew strange bacteria, the resident responded, but it was probably just contaminant. What was the bacteria? Garrett persisted. Something called Fusobacterium necrophorum. The identification of the bacteria told Garrett all he needed to know. The boy had Lemierre's disease.

The disease was named for Dr. Andre Lemierre, who in 1936 described an infection seen almost exclusively in adolescents and young adults that begins with a sore throat and progresses to a painful and swollen neck. From there, it usually travels to the lungs and sometimes to the brain as well. Before antibiotics, the disease was usually fatal. The widespread use of penicillin to treat sore throats during the 1960s and '70s virtually, if inadvertently, wiped out the disease. But in the last 20 years, Lemierre's has staged something of a comeback. Its reappearance is an unintended consequence of a more cautious use of antibiotics generally and the development of new drugs — like azithromycin, which this boy was given — that are easier to take and can treat strep but also turn out to be far less effective than penicillin against Lemierre's.

3. Resolution

Fusobacterium necrophorum is the most common cause of Lemierre's. The positive culture, along with the pain that moved from the boy's throat to his neck, led Garrett to diagnose the disease, even though the ultrasound had not shown evidence of a clot.

Garrett quickly changed the antibiotics. He chose one that he thought, at this point, would be even more effective than penicillin. Now that they had a diagnosis, maybe they could help this desperately ill young man.

Sometimes, if you just work hard enough to keep a patient alive — to keep the blood circulating and the lungs oxygenating — the body will be able to survive even a vicious illness. These are the miracles brought on by our technological advances. And yet there are times, there are patients, there are diseases in which all you do is simply not enough. The boy's lungs never recovered, and he was never able to breathe without the help of a machine. He died in the I.C.U. three weeks later. His family was at his bedside when he finally slipped away.

When the boy's mother told the doctor back home that her son had died, he cried like a baby, she told me. "I have never lost a patient — like this — completely unexpectedly," the doctor said recently, his voice wavering as he recalled that day. "Never lost one because I missed the diagnosis." He had never even heard of Lemierre's disease before this boy died from it, but he is determined never to miss the diagnosis again. He has changed his practice: now everyone with suspected strep will have a throat culture to check for both strep and Lemierre's. "Maybe that's overkill, and I'll probably end up treating too many of my patients with antibiotics," he added thoughtfully. "But I don't ever want to lose a patient like this again."

Copyright 2008 The New York Times Company

So sad. Kind of makes you think about testing in general. A difficult choice for doctors because there is a cost associated with ordering tests for everyone. Hopefully this boy's death will raise awareness about Lemierre's. It's also hard on doctors that have never seen a "comeback" disease like Lemierre's. I think of whooping cough, even mumps or measles. My daughter had a very mild case of whooping cough that no one picked up but my homeopath. Younger doctors may have never seen a real case of it unless they are from another country. My heart goes out to the family of this boy as well as the doctor.

Strep Infection Doesn't Worsen Childhood Tics or OCD Symptoms

Oops, I forgot to post this when it came out....

Strep infection doesn't worsen childhood tics or OCD symptoms
by Will Boggs, MD

2008-06-16 13:29:56 -0400 (Reuters Health)

NEW YORK (Reuters Health) - Streptococcal infection does not cause exacerbations of childhood tics or obsessive-compulsive symptoms, according to a report in the June issue of Pediatrics.

"This study provides further evidence against the use of chronic antibiotic or immune-suppressing therapy to treat these patients, as has been suggested," Dr. Roger Kurlan from University of Rochester School of Medicine, New York told Reuters Health.

"Patients meeting criteria for PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) seem to do fine with standard treatments for their symptoms of tics or obsessive-compulsive disorder (OCD)."

Dr. Kurlan and colleagues sought to determine whether there is a bona fide relationship between antecedent group A beta-hemolytic streptococcal (GABHS) infection and exacerbation of symptoms in 40 children who met the published diagnostic criteria for PANDAS, which included a temporal relationship between the course of illness and GABHS infection. These children were matched with 40 controls, who had OCD or a chronic tic.

Sixty-five clinical exacerbations occurred during the study; of these, 40 episodes occurred in 21 PANDAS children and 25 episodes were seen in 14 control children, the authors report, resulting in exacerbation rates of 0.56 per person-year for PANDAS children and 0.28 per person-year for control subjects.

PANDAS children, however, had more than three-times the GABHS infection rate than control children (0.43 versus 0.13 per person-year), the report indicates, and the higher risk of clinical exacerbation of tics or OCD for PANDAS children did not reach statistical significance.

Only 5 of the 64 total clinical exacerbations of tics and/or OCD occurred within 4 weeks of GABHS infection, and all 5 occurred in PANDAS subjects.

Based on a variety of time intervals and infection classifications, 75% to 92.5% of exacerbations in PANDAS children occurred with no observed evidence of a temporal relationship to GABHS infection, the investigators say.

"Our study results must be interpreted with caution," the researchers note, "because the number of clinical exacerbations and the number of GABHS infections observed were smaller than originally anticipated, particularly in control subjects."

"The most surprising result was that for children meeting criteria for PANDAS, so few of their exacerbations were linked to strep infection," Dr. Kurlan said.

"It remains unclear if the PANDAS hypothesis is true as presented," Dr. Kurlan concluded. In another trial the investigators "found no evidence of immune factors in association with clinical exacerbations in PANDAS cases, casting doubt on the autoimmune hypothesis."

Pediatrics 2008;121:1188-1197.

Copyright Reuters 2008.

This research is very interesting but doesn't convince me of no link. Obviously there IS a link in my own home and with the myriad of children I read about and see with my own eyes day after day in elementary classrooms. My children also do not meet the exact description of PANDAS as outlined by the Am. Academy of Pediatrics. Funny though, I thought the AAP didn't agree to a diagnostic criteria for PANDAS, referring to it only as a theory. Now in this publishing they refer to a criteria. Makes you wonder what is going on here. Bottom line is there are atypical responses to strep too numerous to ignore. Autoimmune reactions to strep, 5ths disease, Lyme, and many other illnesses is very disturbing and warrant immediate funding and attention. This is the future and it's obviously not going away.

I've written more posts on this topic. Also go to my Labels on the right and click on P.A.N.D.A.S. or strep.

Coming Out Of P.A.N.D.A.S. Season

So we just got back from a week away in Arizona. I looked forward to the break, but even more so to see if Sydney's facial tics would be better in a hot, dry climate. My regiment or the fact that it is getting more spring-like seemed to be helping, but the tics were still present. I was nervous trying my new regiment off-site since it's a homeopathic protocol that requires lots of clean water, cups, etc. Sydney's symptoms improved a small amount, then got significantly better when we came back to the east coast. I am just happy that she's so much better and that her tics are barely present. I also got validation from a pediatrician friend that western medicine doesn't recommend medication for these type of tics, as they see them eventually go away. They only recommend it for classic Tourettes.

Leo has a blink here or there, but that's about it from him. After years of being afraid, I finally decided to revisit a metal detox. We had done everything else, but metals still persist although much better. I know in my heart that these detoxes are the only way I can minimize toxic overload. It sucks, since I must continue to do these as prevention. That's all I need, another major neurological disorder to deal with. So whatever I can do to prevent it and maximize health as much as I can, so be it. Their doctor has no advice, but to monitor it.

So this week we started. No effect so far, the usual response for Leo. It takes him about a week. I'm also hopeful that the groundwork we've laid the past two years will be uneventual with the metals. Wish me luck, if anyone is out there listening. I am also planning on doing it once I am over a virus that is still with me.

On other topics, we had an interesting reminder of how things used to be while on vacation. Leo and Sydney swam about 4 to 5 hours every day for the whole week. On our last day, Leo was drying off and my DH noticed a puddle of red water undereath him. We both jumped up and begin questioning Leo while looking for a cut. He didn't feel a thing! I quickly got irritated with Leo (which I regret) since he wasn't helpful and for a moment I blamed him for the situation. This is my blog, so I can be honest! Anyway, we quickly found the culprit, a blister that burst under his big toe. All of his toes were red and raw from all the getting in and out of the pool. Leo was amazing and helpful, and even didn't whine about having to wear a Hello Kitty bandaid, the only thing I had. Of course I had bandaids, kleenex. Mom artillary.

Shades of years of major hyposensitivity in his calves, feet, arms, face, and hands. Leo used to be deathly afraid of swimming, had to wear weights on his calves to train his mind to feel them in the water. He was afraid of drowning, and hated splashing and getting his head wet (hypersensitiviy in his eyes). He also feared going upside down.

This week, I saw him go upside down, head first down the water slide with 4 other boys his age following behind him. His idea. I saw him play football on the grass with these same boys, initiating what to do next. He even skipped snack with no consequence one afternoon, his hypoglycemia under control. Leo also decided to join me and Sydney for a trail ride. His idea. He narrated out loud as he does, his initial fear and discomfort with the movement, the unpredictability of it. The flies, the glaring sun, all the chatting, taking it all in stride, dealing with all that input at once. Hypo and hyper sensitive still perhaps, but it doesn't stop him, as Artemisia says. I am forever in awe and amazed by Leo's determination and strength.

Strep Throat is Different For My Kids

Over the years, I've come to rely on the fact that my son responds differently to germs. My son has tested positive a couple of times for strep, but he only had one symptom, a minor sore throat with minor redness. No fever, no aches, energy normal. My pediatrician thinks differently, but whatever, and I move on.

Years ago I had read about a new emerging disorder called PANDAS in a couple of the autism books, but never paid too much attention to them because my son never presented with tics. Nor did he seem to ever get strep throat. Boy was I wrong. Thanks to our nutritionist, I have revisited this disorder, called PANDAS. I believe both my children have this - their presentation doesn't fit to a tee, but it's the closet explanation yet to what is happening to my children.

In a nutshell, a strep infection attacks the central nervous system, causing OCD and tics among other things. The majority of children today are believed to have strep in their system during an outbreak, but are symptom-free. Until recently, this was the case for my kids, although my daughter has had occasional blinking episodes for the last couple of years. I've always chalked this up to seasonal allergies.

Strep has broken out in their school this fall, many kids have been absent. At the same time, my son and daughter both got tics. In addition, my daughter got very emotional and clingy. True, we could attach this to numerous other reasons, but it totally matches with the timing.

Below are numerous links. I highly recommend any parent with a child with an ASD or ADD/ADHD to review this information, in the interest of making informed health care choices. This has been going on for over 10 years.

Here's a general discription taken from an NIH website:

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.

In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.

If you are looking for traditional information, information your doctor has,the publication Pediatrics has a position on P.A.N.D.A.S. The cause (strep) and effect(tics, OCD behaviors) cannot fit into the scientific method just yet, so they are calling it an unproven hypothesis. I have to say it does sound very challenging. They do not recommend antibiotics for treatment.

This NY Times article talks primarily about OCD and the strep connection.

Here's an NIH website that describes this disorder.

The medical foundation, CIDPUSA is also a good reference.