P.A.N.D.A.S.
Tourette Syndrome
Obsessive Compulsive Disorder
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General PANDAS Information 
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. This 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 typically 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 preceded 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.
Several studies of PANDAS are currently underway at the National Institute of Mental Health, in Bethesda, MD. Descriptions of these studies can be found at:
intramural.nimh.nih.gov/research/pdn/recent_publications.htm
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Tourette Syndrome
Tourette Syndrome (TS) is a neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. Diagnostic criteria include:
Both multiple motor and one or more vocal tics present at some time, although not necessarily simultaneously;
The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout the span of more than one year;
Periodic changes in the number, frequency, type and location of the tics, and in the waxing and waning of their severity.
Symptoms can sometimes disappear for weeks or months at a time;Onset before the age of 18.
Although the word "involuntary" is used to describe the nature of the tics, this is not entirely accurate. It would not be true to say that people with TS have absolutely no control over their tics, as though it was some type of spasm;
rather, a more appropriate term would be "compelling." People with TS feel an irresistible urge to perform their tics, much like the need to scratch a mosquito bite. Some people with TS are able to hold back their tics for up to hours
at a time, but this only leads to a stronger outburst of tics once they are finally allowed to be expressed.Although the DSM-IV has recently changed the upper age of onset from 21 down to 18, the Tourette Syndrome Association Medical
Advisory Board is working to have it reverted back to 21, as is listed in the DSM-III-R.
Coprolalia (see below) does not have to be exclusively swear words. Many times coprolalia manifests itself as socially inappropriate or unacceptable words or phrases, such as the overwhelming urge to use a racial epithet, even though
that is the last thing you want to do. Something about the "forbiddingness" of it impels a person with coprolalia to say it, seemingly against their will.
Another important thing to remember about coprolalia is that although this symptom has been sensationalized by the media, it is actually rare, occurring in less than 30% of people who have a severe case.
Simple tics are movements or vocalizations which are completely meaningless, whereas complex tics are movements or vocalizations which make use of more than one muscle group or appear to be meaningful.
The range of tics or tic-like symptoms that can be seen in TS is very broad. The complexity of some symptoms is often perplexing to family members, friends, teachers and employers who may find it hard to believe that the actions or
vocal utterances are not deliberate.
Research is ongoing, but it is believed that an abnormal metabolism of the neurotransmitters dopamine and serotonin are involved with the disorder. It is genetically transmitted; parents having a 50% chance of passing the gene on to
their children. Girls with the gene have a 70% chance of displaying symptoms, boys with the gene have a 99% chance of displaying symptoms.
Yes. People with TS are more likely to have any combination of the following problems:
Attention-Deficit/Hyperactivity Disorder (ADHD)
Difficulties with Impulse Control (disinhibition)
Obsessive-Compulsive Disorder (OCD)
Various Learning Disabilities (such as dyslexia)
Various Sleep Disorders
Back once again to the DSM-IV, Tourette Syndrome is an Axis I disorder.
People with TS do tend to present with more other Axis I disorders than the rest of the general population.
Tourette Syndrome Foundation of the United States www.tsa-usa.org/
Tourette Syndrome Foundation of Canada www.tourette.ca/
Tourette Syndrome of England www.tsa.org.uk/
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Obsessive Compulsive Disorder
What Is OCD?
If you or someone you care about has been diagnosed with Obsessive-Compulsive Disorder (OCD), you may feel you are the only person
facing the difficulties of this illness. But you are not alone. In the United States, 1 in 50 adults currently has OCD, and twice that many have had it at some point in their lives. Fortunately, very effective treatments for OCD are
now available to help you regain a more satisfying life. Here are answers to the most commonly asked questions about OCD.
What Is Obsessive-Compulsive Disorder?
Worries, doubts, superstitious beliefs all are common in everyday life. However, when they become so excessive such as hours of hand washing or make no sense at all such as driving around and around the block to check that an accident
didn't occur then a diagnosis of OCD is made. In OCD, it is as though the brain gets stuck on a particular thought or urge and just can't let go. People with OCD often say the symptoms feel like a case of mental hiccups that won't go
away. OCD is a medical brain disorder that causes problems in information processing. It is not your fault or the result of a "weak" or unstable personality.
Before the arrival of modern medications and cognitive behavior therapy, OCD was generally thought to be untreatable. Most people with OCD continued to suffer, despite years of ineffective psychotherapy. Today, luckily, treatment can
help most people with OCD. Although OCD is usually completely curable only in some individuals, most people achieve meaningful and long-term symptom relief with comprehensive treatment.
What are the symptoms of Obsessive-Compulsive Disorder?
OCD usually involves having both obsessions and compulsions, though a person with OCD may sometimes have only one or the other.
Typical OCD Symptoms
Common Obsessions Common Compulsions:
Contamination fears of germs, dirt, etc. Washing
Imagining having harmed self or others Repeating
Imagining losing control or aggressive urges Checking
Intrusive sexual thoughts or urges Touching
Excessive religious or moral doubt Counting
Forbidden thoughts Ordering/arranging
A need to have things "just so" Hoarding or saving
A need to tell, ask, confess Praying
OCD symptoms can occur in people of all ages. Not all Obsessive-Compulsive behaviors represent an illness. Some rituals (e.g., bedtime songs, religious practices) are a welcome part of daily life. Normal worries, such as contamination
fears, may increase during times of stress, such as when someone in the family is sick or dying. Only when symptoms persist, make no sense, cause much distress, or interfere with functioning do they need clinical attention.
1. Obsessions.
Obsessions are thoughts, images, or impulses that occur over and over again and feel out of your control. The person does not want to have these ideas, finds them disturbing and intrusive, and usually recognizes that they don't really
make sense. People with OCD may worry excessively about dirt and germs and be obsessed with the idea that they are contaminated or may contaminate others. Or they may have obsessive fears of having inadvertently harmed someone else
(perhaps while pulling the car out of the driveway), even though they usually know this is not realistic. Obsessions are accompanied by uncomfortable feelings, such as fear, disgust, doubt, or a sensation that things have to be done in
a way that is "just so."
2. Compulsions.
People with OCD typically try to make their obsessions go away by performing compulsions. Compulsions are acts the person performs over and over again, often according to certain "rules." People with an obsession about contamination
may wash constantly to the point that their hands become raw and inflamed. A person may repeatedly check that she has turned off the stove or iron because of an obsessive fear of burning the house down. She may have to count certain
objects over and over because of an obsession about losing
them. Unlike compulsive drinking or gambling, OCD compulsions do not give the person pleasure. Rather, the rituals are performed to obtain relief from the discomfort caused by the obsessions.
3. Other features of Obsessive-Compulsive Disorder
OCD symptoms cause distress, take up a lot of time (more than an hour a day), or significantly interfere with the person's work, social life, or relationships.
Most individuals with OCD recognize at some point that their obsessions are coming from within their own minds and are not just excessive worries about real problems, and that the compulsions they perform are excessive or unreasonable.
When someone with OCD does not recognize that their beliefs and actions are unreasonable, this is called OCD with poor insight.
OCD symptoms tend to wax and wane over time. Some may be little more than background noise; others may produce extremely severe distress.
When does Obsessive-Compulsive Disorder begin?
OCD can start at any time from preschool age to adulthood (usually by age 40).
One third to one half of adults with OCD report that it started during childhood. Unfortunately, OCD often goes unrecognized.
On average, people with OCD see three to four doctors and spend over 9 years seeking treatment before they receive a correct diagnosis. Studies have also found that it takes an average of 17 years from the time OCD begins for people to
obtain appropriate treatment.
OCD tends to be underdiagnosed and undertreated for a number of reasons. People with OCD may be secretive about their symptoms or lack insight about their illness. Many healthcare providers are not familiar with the symptoms or are not
trained in providing the appropriate treatments. Some people may not have access to treatment resources.
This is unfortunate since earlier diagnosis and proper treatment, including finding the right medications, can help people avoid the suffering associated with OCD and lessen the risk of developing other problems, such as depression or
marital and work problems.
Is Obsessive-Compulsive Disorder Inherited?
No specific genes for OCD have yet been identified, but research suggests that genes do play a role in the development of the disorder in some cases. Childhood-onset OCD tends to run in families (sometimes in association with tic
disorders). When a parent has OCD, there is a slightly increased risk that a child will develop OCD, although the risk is still low. When OCD runs in families, it is the general nature of OCD that seems to be inherited, not specific
symptoms. Thus a child may have checking rituals, while his mother washes compulsively.
What causes Obsessive-Compulsive Disorder?
There is no single, proven cause of OCD.
Research suggests that OCD involves problems in communication between the front part of the brain (the orbital cortex) and deeper structures (the basal ganglia).
These brain structures use the chemical messenger serotonin. It is believed that insufficient levels of serotonin are prominently involved in OCD. Drugs that increase the brain concentration of serotonin often help improve OCD
symptoms.
Pictures of the brain at work also show that the brain circuits involved in OCD return toward normal in those who improve after taking a serotonin medication or receiving cognitive-behavioral psychotherapy.
Although it seems clear that reduced levels of serotonin play a role in OCD, there is no laboratory test for OCD. Rather, the diagnosis is made based on an assessment of the person's symptoms. When OCD starts suddenly in childhood in
association with strep throat, an autoimmune mechanism may be involved, and treatment with an antibiotic may prove helpful.
Related Disorders
What other problems are sometimes confused with OCD?
Some disorders that closely resemble OCD and may respond to some of the same treatments are Trichotillomania (compulsive hair pulling), body dysmorphic disorder (imagined ugliness), and habit disorders, such as nail biting or skin
picking. While they share superficial similarities, impulse control problems, such as substance abuse, pathological gambling, or compulsive sexual activity, are probably not related to OCD in any substantial way.
The most common conditions that resemble OCD are the tic disorders (Tourette's disorder and other motor and vocal tic disorders). Tics are
involuntary motor behaviors (such as facial grimacing) or vocal behaviors (such as snorting) that often occur in response to a feeling of discomfort. More complex tics, like touching or tapping tics, may closely resemble compulsions.
Tics and OCD occur together much more often when the OCD or tics begin during childhood.
Depression and OCD often occur together in adults, and, less commonly, in children and adolescents. However, unless depression is also present, people with OCD are not generally sad or lacking in pleasure, and people who are depressed
but do not have OCD rarely have the kinds of intrusive thoughts that are characteristic of OCD.
Although stress can make OCD worse, most people with OCD report that the symptoms can come and go on their own. OCD is easy to distinguish from a condition called posttraumatic stress disorder, because OCD is not caused by a terrible
event.
Schizophrenia, delusional disorders, and other psychotic conditions are usually easy to distinguish from OCD. Unlike psychotic individuals, people with OCD continue to have a clear idea of what is real and what is not.
In children and adolescents, OCD may worsen or cause disruptive behaviors, exaggerate a pre-existing learning disorder, cause problems with attention and concentration, or interfere with learning at school. In many children with OCD,
these disruptive behaviors are related to the OCD and will go away when the OCD is successfully treated.
Individuals with OCD may have substance-abuse problems, sometimes as a result of attempts to self-medicate. Specific treatment for the substance abuse is usually also needed.
Children and adults with pervasive developmental disorders (autism, Asperger's Disorder) are extremely rigid and compulsive, with stereotyped behaviors that somewhat resemble very severe OCD. However, those with pervasive developmental
disorders have extremely severe problems relating to and communicating with other people, which do not occur in OCD.
Only a small number of those with OCD have the collection of personality traits called Obsessive Compulsive Personality Disorder (OCPD). Despite its similar name, OCPD does not involve obsessions and compulsions, but rather is a
personality pattern that involves a preoccupation with rules, schedules, and lists; perfectionism; an excessive devotion to work; rigidity; and inflexibility. However, when people have both OCPD and OCD, the successful treatment of the
OCD often causes a favorable change in the person's personality.
What Can Families And Friends Do To Help?
Many family members feel frustrated and confused by the symptoms of OCD. They don't know how to help their loved one. If you are a family member or friend of someone with OCD, your first and most important task is to learn as much as
you can about the disorder, its causes, and its treatment. At the same time, you must be sure the person with OCD has access to information about the disorder.
Read the booklet, "Learning to Live with Obsessive Compulsive Disorder" by Van Noppen et al. (Information on obtaining this and other educational resources is given at the end of this handout.) This booklet gives good advice and
practical tips to help family members help their loved ones and learn to cope with OCD.
Helping the person to understand that there are treatments that can help is a big step toward getting the person into treatment. When a person with OCD denies that there is a problem or refuses to go for treatment, this can be very
difficult for family members. Continue to offer educational materials to the person. In some cases. it may help to hold a family meeting to discuss the problem, in a similar manner to what is often done when someone with alcohol
problems is in denial.
Family problems don't cause OCD, but the way families react to the symptoms can affect the disorder, just as the symptoms can cause a great deal of disruption and many problems for the family. OCD rituals can tangle up family members
unmercifully, and it is sometimes necessary for the family to go through therapy with the patient. The therapist can help family members learn how to become gradually disentangled from the rituals in small steps and with the patient's
agreement. Abruptly stopping your participation in OCD rituals without the patient's consent is rarely helpful since you and the patient will not know how to manage the distress that results. Your refusal to participate will not help
with those symptoms that are hidden and, most important, will not help the patient learn a lifelong strategy for coping with OCD symptoms.
Negative comments or criticism from family members often make OCD worse, while a calm, supportive family can help improve the outcome of treatment. If the person views your help as interference, remember it is the illness talking. Try
to be as kind and patient as possible since this is the best way to help get rid of the OCD symptoms. Telling someone with OCD to simply stop their compulsive behaviors usually doesn't help and can make the person feel worse, since he
or she is not able to comply. Instead, praise any successful at tempts to resist
OCD, while focusing your attention on positive elements in the person's life. You must avoid expecting too much or too little. Don't push too hard. Remember that nobody hates OCD more than the person who has the disorder.
Treat people normally once they have recovered, but be alert for telltale signs of relapse. If the illness is starting to come back, you may notice it before the person does. Point out the early symptoms in a caring manner and suggest
a discussion with the doctor. Learn to tell the difference between a bad day and OCD, however. It is important not to attribute everything that goes poorly to OCD.
Family members can help the clinicians treat the patient. When your family member is in treatment, talk with the clinician if possible. You could offer to visit the clinician with the person to share your observations about how the
treatment is going. Encourage the patient to stick with medications and/or CBT. However, if the patient has been on a certain treatment for a fairly long time with little improvement in symptoms or has troubling side effects, encourage
the person to ask the doctor about other treatments or about getting a second opinion.
When children or adolescents have OCD, it is important for parents to work with schools and teachers to be sure that they understand the disorder. Just as with any child with an illness, patients still need to set consistent limits and
let the child or adolescent know what is expected of him or her.
Take advantage of the help available from support groups. Sharing your worries and experiences with others who have gone through the same things can be a big help. Support groups are a good way to feel less alone and to learn new
strategies for coping and helping the person with OCD.
Be sure to make time for yourself and your own life. If you are helping to care for someone with severe OCD at home, try to take turns "checking in" on the person so that no one family member or friend bears too much of the burden. It
is important to continue to lead your own life and not let your self become a prisoner of your loved one's rituals. You will then be better able to provide support for your loved one.
PSYCHOTHERAPY
Cognitive behavioral psychotherapy (CBT) is the psychotherapeutic treatment of choice for children, adolescents, and adults with OCD. In CBT, there is a logically consistent and compelling relationship between the disorder, the
treatment, and the desired outcome. CBT helps the patient internalize a strategy for resisting OCD that will be of lifelong benefit.
What Is CBT?
The BT in CBT stands for behavior therapy. Behavior therapy helps people learn to change their thoughts and feelings by first changing their behavior. Behavior therapy for OCD involves exposure and response prevention (E/RP).
Exposure is based on the fact that anxiety usually goes down after long enough contact with something feared. Thus people with obsessions about germs are told to stay in contact with "germy" objects (e.g., handling money) until their
anxiety is extinguished. The person's anxiety tends to decrease after repeated exposure until he no longer fears the contact.
For exposure to be of the most help, it needs to be combined with response or ritual prevention (RP). In RP, the person's rituals or avoidance behaviors are blocked. For example, those with excessive worries about germs must not only
stay in contact with "germy things," but must also refrain from ritualized washing.
Exposure is generally more helpful in decreasing anxiety and obsessions, while response prevention is more helpful in de creasing compulsive behaviors. Despite years of struggling with OCD symptoms, many people have surprisingly little
difficulty tolerating E/RP once they get started.
Cognitive therapy (CT) is the other component in CBT. CT is often added to E/RP to help reduce the catastrophic thinking and exaggerated sense of responsibility often seen in those with OCD. For example, a teenager with OCD may believe
that his failure to remind his mother to wear a seat belt will cause her to die that day in a car accident. CT can help him challenge the faulty assumptions in this obsession.
Armed with this proof, he will be better able to engage in E/RP, for example, by not calling her at work to make sure she arrive safely.
Other techniques, such as thought stopping and distraction (suppressing or "switching off" OCD symptoms), satiation (prolonged listening to an obsession usually using a closed-loop audiotape), habit reversal (replacing an OCD ritual
with a similar but non-OCD behavior), and contingency management (using rewards and costs as incentives for ritual prevention) may sometimes be helpful but are generally less effective than standard CBT.
People react differently to psychotherapy, just as they do to medicine. CBT is relatively free of side effects, but all patients will have some anxiety during treatment. CBT can be individual (you and your doctor), group (with other
people), or family. A physician may provide both CBT and medication, or a psychologist or social worker may provide CBT, while a physician man ages your medications. Regardless of their specialties, those treating you should be
knowledgeable about the treatment of OCD and willing to cooperate in providing your care.
MEDICATION
What Medications Are Used To Treat Obsessive-Compulsive Disorder?
Research clearly shows that the serotonin reuptake inhibitors (SRIs) are uniquely effective treatments for OCD. These medications increase the concentration of serotonin, a chemical messenger in the brain. Five SRIs are currently
available by prescription in the United States:
Clomipramine (Anafranil, manufactured by Novartis)
Fluoxetine (Prozac, manufactured by Lilly)
Fluvoxamine (Luvox, manufactured by Solvay)
Paroxetine (Paxil, manufactured by GlaxoSmithKline)
Sertraline (Zoloft, manufactured by Pfizer)
Citalopram (Celexa, marketed by Forest Laboratories, Inc.)
Fluoxetine, fluvoxamine, paroxetine, citalopram, and sertraline are called selective serotonin reuptake inhibitors (SSRIs) because they primarily affect only serotonin. Clomipramine is a nonselective SRI, which means that it affects
many other neurotransmitters besides serotonin. This means that clomipramine has a more complicated set of side effects than the SSRIs. For this reason, the SSRIs are usually tried first since they are usually easier for people to
tolerate.
How Well Do Medications Work?
When patients are asked about how well they are doing compared to before starting treatment, they report marked to moderate improvement after 8-10 weeks on a serotonin reuptake inhibitor (SRIs). Unfortunately, fewer than 20% of those
treated with medication alone end up with no OCD symptoms. This is why medication is often combined with CBT to get more complete and lasting results. About 20% don't experience much improvement with the first SRI and need to try
another SRI.
Which Medication Should I Choose First?
Studies show that all the SRIs are about equally effective. However, to reduce
he chance of side effects, most experts recommend beginning treatment with tone of the selective serotonin reuptake inhibitors. If you or someone in your family did well or poorly with a medication in the past, this may influence the
choice. If you have medical problems (e.g., an irritable stomach, problems sleeping) or are taking another medication, these factors may cause your doctor to recommend one or another medication to minimize side effects or to avoid
possible drug interactions.
What If The First Medication Doesn't Work?
First, it is important to remember that these medications don't work right away. Most patients notice some benefit after 3 to 4 weeks, while maximum benefit should occur after 10 to 12 weeks of treatment at an adequate dose of
medication. When it is clear that a medication is not working well enough, most experts recommend switching to another SRI. While most patients do equally well on any of the SRIs, some will do better on one than another, so it is
important to keep trying until you find the medication and dosage schedule that is right for you.
What Are The Side Effects Of These Medications?
In general, the SRIs are well tolerated by most people with OCD. The four SSRIs (fluoxetine, fluvoxamine, paroxetine, and sertraline) have similar side effects. These include nervousness, insomnia, restlessness, nausea, and diarrhea.
The most common side effects of clomipramine are dry mouth, sedation, dizziness, and weight gain. While all five drugs can cause sexual problems, on average these are a bit more common with clomipramine. Clomipramine is also more
likely to cause problems with blood pressure and irregular heart beats, so that children and adolescents and patients with preexisting heart disease who are treated with clomipramine must have electrocardiograms before beginning
treatment and at regular intervals during treatment.
Remember that all side effects depend on the dose of medication and on how long you have been taking it. If side effects are a big issue, it is important to start with a low dose and increase the dose slowly. More severe side effects
are associated with larger doses and a rapid increase in the dose.
Tolerance to side effects may be more likely to develop with the SSRIs than with clomipramine, so that many patients are better able to tolerate the SSRIs than clomipramine over the long term. All SRIs except fluoxetine should be
tapered and stopped slowly because of the possibility of the return of symptoms and withdrawal reactions.
Tell Your Doctor Right Away About Any Side Effects You Have.
Some people have different side effects than others and one person's side effect (for example, unpleasant sleepiness) may actually help another person (someone with insomnia). The side effects you may get from medication depend
on:
The type and amount of medicine you take
Your body chemistry
Your age
Other medicines you are taking
Other medical conditions you have
If side effects are a problem for you, your doctor can try a number of things to help:
Reducing the amount of medicine: The doctor may gradually lower the dose to try to achieve a dose low enough to reduce side effects but not low enough to cause a relapse.
Adding another medication may be helpful for some side effects, such as trouble sleeping or sexual problems.
Trying a different medicine to see if there are fewer or less bothersome side effects: Even when a medication is clearly helping, side effects sometimes make it intolerable. In such a case, trying another SRI is a reasonable strategy.
Remember: Changing medicine is a complicated, potentially risky decision. Don't stop your medicine or change the dose on your own. Discuss any medication problems you are having with your doctor.
Obsessive-Compulsive Foundation