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?

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.

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.

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.