PANDAS FAQs

PANDAS FAQS

Signs and Symptoms

Q: How do I know if my child has PANDAS?
A: That's actually the hardest question to answer. We don't know. Most parents have gotten here because you are searching for answers. Your child is likely suffering from or been diagnosed with either an obsessive compulsive disorder or a tic disorder. The key signs of PANDAS are typically the sudden onset and unusual pre-cursor symptoms like daytime urinary frequency. Other symptoms can include..

Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)
Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)
Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)
Personality changes (54%)
Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)
Separation anxiety (46%)
Oppositional defiant disorder (40%)
Tactile/sensory defensiveness (40%)
ADHD, fidgetiness, or inability to focus (40%)
Major Depression (36%)
Marked deterioration in handwriting or math skills. (26%)
Daytime urinary frequency/enuresis (12%)
Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

PANDAS/OCD is a clinical diagnosis, often marked by the sudden onset and extreme symptom exacerbations (such as an increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]). The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD [Swedo2004]. Many parents can pinpoint a day or a week when behaviors changed [Çengel-Kültür2009]

When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS.

Researchers have described chronic PANDAS [Pavone2006] where the tics and/or obsessive-compulsive disorder have a much more gradual course. These cases are difficult to separate from non-PANDAS tics or OCD. Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006].

A positive throat culture for group A Beta-Hemolytic streptococcus at time of exacerbation and remission of symptoms after treatment of GABHS is a strong indication of PANDAS BUT a negative throat culture SHOULD NOT exclude a PANDAS diagnosis.

Q: Is PANDAS just misdiagnosed Sydenham Chorea?
A: We don't know. But it appears from studies by Kirvan and others that PANDAS has a lot of similarities to Sydenham Chorea. About 70% of Sydenham Chorea cases have OCD symptoms. This number also seems to be true for PANDAS cases. In the original definition of PANDAS, Dr. Swedo excluded those cases that had a history of Acute Rheumatic Fever or were exhibiting the explicit Sydenham Chorea (also known as St. Vitus Dance).

Q: Is it possible that my PANDAS child reacts when others have strep?
A: Yes. There is good anecdotal evidence from parents on this forum that exacerbations in the PANDAS child are correlated with family members contracting GABHS. One parent relayed the experience as being similar to a peanut allergy -- instead of the throat closing the basal-ganglia gets affected.

Q: Is it possible for a child to have strep without a sore throat?
A: Yes. Strep can colonize on many parts of the body (most notably around the genitals or a recent cut). In addition, some children do not exhibit "classic strep throat symptoms" although they may be positive for GABHS.

Q: What does OCD look like in a child?

A: Many children with PANDAS have some form of Obsessive Compulsive Disorder. In order for a child to be diagnosed with OCD, obsessions and compulsions (or rituals) need to take up at least 1 hour of the child’s day. Many doctors are unaware of the symptoms of OCD and will not be able to recognize the behaviors. If some of the symptoms listed below are severe enough to have an impact on your child’s abilities at school or at home and are causing your child unhappiness or anxiety, you may wish to consider OCD as a diagnosis. Many parents find that interrupting a ritual will cause extreme anxiety, to the point that the child will fight or rage to get back to the ritual. Some parents see panic attacks when rituals are interrupted or cannot be completed correctly. All of the OCD behaviors may often be considered "normal" but it is the severity and frequency that sets it apart. Obsessive Compulsive tendencies are very common and normal in children. It becomes a disorder when it interferes with their life

Obsessions are: Intrusive (unwanted thoughts), Irrational (concerns that make no sense or go beyond rational), Recurrent (keep replaying), Disturbing, and Anxiety Producing. Sometimes with young children, because they do not have the “insight” that the thought or behavior is not normal, they are not Disturbed or Anxious as long as they can perform their compulsion. Adults know the compulsion (behavior) is odd, and that causes them additional anxiety. Sometimes kids only become anxious if the ritual is interrupted.

Categories for Obsessions are: Contamination, Harm to Self or Others, Symmetry Urges (or "Just Right" OCD), Doubting, Numbers, Scrupulosity, Magical Thinking, Hoarding, and Sexual Themes.

Categories for Compulsions are: Washing & Cleaning, Checking, Symmetry, Counting, Repeating/Redoing, Hoarding, and Praying. The tricky thing is that there are so many ways for the compulsion to manifest, and there is no logic to what compulsion gets attached to the obsession. Usually we see the compulsion in the child - and they may not be able to explain (or want to explain) the obsession behind that ritual.

Certain obsessions do tend to link up with specific rituals a lot of the time. www.OCDChicago.org does a good job of illustrating this - they start like this:

Fear of contamination or germs... . leads to .....Washing/ Cleaning
Fear of harm or danger.. . leads to ......Checking
Fear of losing something valuable. . leads to ......Hoarding
Fear of violating religious rules . . . . . leads to .....Preoccupation with religious observances
Need for symmetry. . leads to .....“Evening up” or arranging
Need for perfection. . leads to ......Seeking reassurance or doing things “just right”

Here are some examples to help parents understand what OCD looks like in a child.

Contamination:

Obsessive hand washing, due to fear of germs or stickiness or chemicals. Signs of this are often red chapped hands, children using the restroom more than is normal, long washing or bathing rituals, needing to wash in a specific order, extreme amounts of soap being used, huge amount of laundry being created (each towel touched only once, for example)

Obsessive need to urinate
Brushing teeth for a long period of time
Inability to eat certain foods previously liked
Refusal to brush teeth, bathe, or change clothes
Fear of germ or chemicals
Worry of choking on food - asking for food to be cut into small pieces
Inability to touch certain things, such as food, clothing or toys that were previously loved.
Repeating sounds others make, especially a cough or a sneeze
Spitting germs
Obsessive concern about throwing up
Avoidance of certain places or people or things previously enjoyed, such as restaurants, birthday parties
Inability to touch other children when playing age appropriate games.
Inability to use public restrooms or bathrooms at school or friends homes. Accidents can be a sign (children may hold it rather than use a contaminated bathroom).
Breathing off to the side
Having to get their own utensils. Keeping utensils separate from others
-Aversion to glue, glitter, etc. This could be sensory or OCD
- Insisting on certain cup / straw / plate- to the point that it is that or nothing
Walking with closed fists
Wiping hands on pants over and over after touching something
Needing to spin or shake after doing something like passing a specific person or a certain room
Needing to get their own food
Needing to eat self contained foods like cheese in a wrapper, applesauce from a single serve container

Harm to Self or Others

Touch that black square on the floor or my sister will be in a car wreck” or --“I need to hug my mom, or she will die”. This is also an example of magical thinking.
Inability to separate from a parent or authority figure. Sometimes this is to the point that a parent will feel that their child is permanently attached – they cannot play alone, be in another room without panicking.
Extreme worry about weather or robbers - accompanied by repetitive rituals such as a repetitive thoughts (“If I pray to God in just the right way, robbers won’t come”), repetitive actions (“If I check the lock, the robbers can’t come”) or magical thought (“If I touch the light switch 3 times, robbers will not come”),
If someone in the family gets hurt, they need reassurance over and over it will not happen to them
Fears that parent is going to die
Repeating certain words or mantra – this could really go anywhere – it is usually an example of magical thinking to ward of whatever the “bad” thing is that they think will happen. But it is often to ward off “harm” of some kind.

Symmetry Urges (or “just right” OCD)

Repetitively saying certain things, or asking others to say things in specific ways, tones, etc.
Lining up things such as toys or pencils.
Repetitively touching certain things
Inability to put hands in certain positions
Retracing steps
Going in and back out of doorways
Turning light switches on and off
Counting toys
Insistence on a certain order of events (such as reading certain books in only a certain order)
Breathing in before reading each new sentence
Putting together sets of items
Insistence on a certain order of events (such as reading certain books in only a certain order)
Saying goodnight has to be done a very specific way. If you vary it, the anxiety rises and they need you to start over
Pushing chair in until it is just right, then making sure the chair is "even'.
Fussing with plate until just right.
Eating problems as a result of being unable to disengage from compulsive behaviors.
Has to tell you when to stop pouring a drink. The drink needs to be at a certain level.
Messing with seatbelts over and over
Wearing the same clothes over and over

Doubting

Constantly asking for reassurance on the same/similar topic (ex: am I sick, will I get sick, did I do that) This could fall in a lot of categories
inability to make a previously simple decision for fear of consequences (sometimes logical, sometimes just a fear of it being a wrong decision). This could fall in a lot of categories
Checking doors to make sure they are locked (Doubting often causes “checking”.)
Constantly changing mind- fear of wrong decision
Perfectionism - often seen in erasing work until the paper rips
Asking permission to do thinks like go to the bathroom
Apologizing
You have to repeat back what the child says because they need to make sure you heard them (this could also be “just right”).
Explaining...explaining, and explaining. "I didn't mean it like that, what I meant was...and do you understand?

Numbers and Colors

Fixation on a certain number - such as needing to do, repeat, touch something 7 times.
Fixation on a certain number as being bad - such as being unable to read anything with the number 7 on it (such as page 7, the 7th sentence, etc.
Needing a parent to say certain things an amount of times before a task is complete
Child filling up an entire piece of paper just writing "4" over and over until there was no room left, Saying goodnight 4 times.
Favorite color- having to wear the same red pjs every day, only color with red crayon, only swing on red swing

Scrupulosity

Need to confess "bad things" such as unkind behavior to another child
Feeling that they have cheated on tests or in school
Worry about being "bad"
Obsessive confessing (in stated or written form) often for no apparent reason

Magical Thinking

Obsessive magical thinking such as “if I think it, it will happen... calling brother a furball then worrying that he will become a furball”
Unable to make a small letter “g” in school for fear that something bad will happen. Making all small “g’s” in cursive, no matter how corrected.
Touching a green block in the carpet and then saying..."Great, now I have to marry a green person."
Hoarding
Refusing to throw out odd things such as tissue, paper, empty juice boxes. A child may obsess over these for long times (weeks) if they are disposed of, and they may go into the trash to get them back.

Sexual Themes:. These are rarely discussed outside of the home and therapist, but they are a common form of OCD. Children may have an obsession that they will look at another’s private parts or think they have touched them. They many have compulsions such as confessing intrusive thoughts, avoiding looking at other people, staring at the floor, wearing hair over their eyes, or not speaking to others. This can be very difficult for a child to communicate.

Intrusive Thoughts of Violence to self or Others: Technically this would fall into harm of self or others – but similarly to Sexual Themes, this is often not discussed. Children may become afraid that they will hurt another person. They may have vivid scenarios about how this could happen. They may ask questions, ask for reassurance, refuse to be in the room with a person, refuse to touch or be near a knife, etc. They may refuse to watch TV with anything frightening (past age appropriate times) for fear that seeing the event will make it happen (magical thinking).

Other areas related to OCD:

Anorexia, (“Will this make me gain weight?","Does this have sugar in it?"
"Is this fat on my leg?")
Trichotillomania (hair pulling)

Pathogenesis (Cause)

Q: Is PANDAS caused by Strep?
A: Not exactly. PANDAS is currently thought to be caused by the immune system creating an antibody to Group A Beta-Hemolytic Streptococcus and a breach in the blood-brain-barrier due to inflammation from the immune systems reaction. It seems to be the combination of the two -- the antibody and the breach. Some researchers have reported that there is inflammation of the basal ganglia (leading to symptoms), while others report that the antibody interferes with neuronal signaling. The combination of the antibody, inflammation and the breach of the blood-brain-barrier appear to cause the neuropsychiatric symptoms of OCD and tics.

Q: How do antibodies get across the Blood Brain Barrier?
A: We don't exactly know. One recent paper indicates that T-cells are attracted to weaknesses in the blood-brain barrier and are able to cross the barrier. Once across the T-cells bind with macrophages and cause inflammation. The inflammation brings other T-cells and eventually a breach in the BBB occurs. It appears that either antibodies or B-cells are now able to cross causing the interaction with the neuronal tissue.

Treatment: Antibiotics

Q: If PANDAS is caused by an antibody, why do so many parents have their kids on prophylactic antibiotics?
A: The antibody is an immune response to Group A Beta-Hemolytic Streptococcus. Many of the parents on this board have seen that subsequent exacerbations are much more severe (similar to the case for other auto-immune disorders to GABHS such as Sydenham Chorea). The prophylaxis is to minimize colonization and infection by GABHS.

Q: Can Amoxicillin and Augmentin be given only once a day for prophylaxis?
A: Apparently not. Amoxicillin and Augmentin both have extremely short half-lives (1-1.5 hours). This means that most of Amoxicillin/Augmentin is removed from the body in ~10hours. If a dose is skipped, the child is actually unprotected for 1-2 days. Azithromycin has a longer half-life (~1.5 days), can be taken once per day and is easier on the GI tract, but there are reports of macrolide resistant strains of GABHS.

Q: Do antibiotics kill Group A Beta-Hemolytic Streptococcus?
A: Not exactly. Antibiotics such as Amoxicillin, Azithromycin and Augmentin slow down the progression of the bacteria and prevent it from rapidly growing. This gives the child's immune system a chance to respond to the infection and kill the bacteria. Antibiotics alone aren't sufficient to eradicate strep; the body's immune system must complete the job.

Q: Which is best, Amoxicillin, Augmentin or Azithromycin?
A: This is a matter of considerable debate. Both Augmentin and Azithromycin are more clinically effective in clearing GABHS than Amoxicillin. Some strains of strep can go intracellular (where azithromycin is more effective) and some strains are macrolide tolerant (where augmentin is more effective). Often a parent will try 2 different antibiotics over a period of 2 months to find one that seems to work.

Q: My child doesn't seem any better after 10 days of amoxicillin. Does this mean he doesn't have PANDAS?
A: No. Many children actually need a stronger antibiotic than the standard treatment of amoxicillin. The standard dosage of antibiotics is based on clearing 80% of children who have a healthy immune system. For others who fall outside the standard dosing parameters, typically either augmentin or azithromycin are used. Anecdotally, parents on the forum have found that a month is needed to really evaluate whether a particular antibiotic is working. In addition, some strains of GABHS are more sensitive to one antibiotic versus another. Azithromycin is helpful if the strain is one that goes intracellular; Augmentin is helpful inhibiting extracellular strains.

Q: Augmentin/XR seems to be commonly used. Why is that thought to work?
A: This isn't exactly known. At very high dosage, Augmentin is bacteriacidal (meaning it actually does kill strep). One theory is that there is a strep infection hidden (perhaps inside cells) and once the cell dies it releases strep into the blood stream. In this case, Augmentin could stop the GABHS before an immune response. There is some good anecdotal evidence for this, but this has not been clinically studied. Some researchers have indicated to parents that Augmentin may be anti-inflammatory at high dose, but there is no clinical studies to support this hypothesis.

Q: Why use prophylactic antibiotics in PANDAS children...why not just wait until my child gets a strep infection and treat it then?
A: There is mounting evidence that each exacerbation has increased symptoms and thus prophylaxis prevents significant psychological and neurological symptoms. Gratefully, there does not appear to be any long-term damage from PANDAS; however, this is still a matter of research.

Q:Should I check for clearing of my non-PANDAS children if treated for strep?
A: Yes. About 3 weeks after completing treatment for strep you can check for clearance by getting a negative culture. The dosing levels on antibiotics are designed so that about 80% of children with normal immune systems are cleared with a "standard" dosing of antibiotics. Some strains of strep are harder to eradicate and either longer treatments or use of antibiotics like azithromycin and augmentin seem to be effective on these strains.

Q:Why are doctors so hesitant to prescribe antibiotics or check for GABHS in asymptomatic children?
A: The concern is primarily around creating a treatment resisitant form of GABHS. By overprescribing antibiotics, doctors worry that some of the bacteria that is resistant to that form of antibiotic will survive and replicate. Antibiotics slow down the growth of the target (e.g., GABHS) and also helpful bacteria. This means that an antibiotic resistant strain could grow uncontrolled while the normal competing non-dangerous bacteria is held back. It's all a matter of balance and antibiotics do upset that balance. In terms of checking for GABHS in asymptomatic children, this is a matter of considerable debate. The exact reason why some children don't exhibit classic "sore throat" signs or why their colonization doesn't seem to turn into full infections is just not known. There is mounting evidence that asymptomatic carriage is not as benign as once thought, but most doctors have not read these research reports.

Treatment: IVIG, Plasmapherisis, and Plasma Exchange

Q: What is IVIG and PEX?
IVIG stands for Intravenous Immunoglobulin. Immunoglobulin antibodies, type G, are extracted from donated blood. These antibodies are transferred to the recipient through an intravenous line. IVIG is used in many auto-immune diseases but the exact nature of how it works is not known. IVIG is highly anti-inflammatory and may help T-regulatory cells become re-activated to help remove anti-host antibodies. In addition, some of the infused antibodies may help recognize infected cells or bacteria that was missed by the recipient's own antibodies.

PEX technically stands for Plasma Exchange. It is sometimes used interchangeably with plasmapheresis. Plasmapheresis is a process of removing antibodies from the blood stream through filtration. In Plasma Exchange (PEX), another donor's plasma is added on the return so that new antibodies are added (similar to IVIG). Plasmapheresis is used in severe auto-immune diseases because it can address acute antibody levels.

Q: Why does IVIG or Plasmapheresis work?
A: PANDAS is thought to be caused by three events:

the creation of an antibody to Group A Beta-Hemolytic Streptococcus that can react with neuronal tissue
the failure of the immune system to suppress the antibody
a breach of the blood-brain barrier so that a B-cell or the antibody can reach the neuronal tissue

IVIG is highly anti-inflammatory and can close #3. There are also reports that IVIG resets the T-regulatory cells addressing #2. Plasmapherisis works by removing the antibodies in #1. Antibiotics also help with #1 by slowing an infection so the immune system can kill the bacteria. Once the antigen (the bacteria) is removed, the antibodies generally disappear in ~4-6 weeks.

Q: Do I need IVIG or PEX to cure PANDAS?
A: Most of the studies report that IVIG and PEX are helpful in putting PANDAS in remission, but don't "cure" PANDAS. There are many reports of PANDAS symptoms returning after re-exposure to GABHS. This is why many parents use long term prophylactic antibiotics. It is also important to mention that some parents report that antibiotics used aggressively at initial onset of symptoms seem to put PANDAS in remission.

Q: Is this a chronic condition or will IVIG and PEX fix what’s wrong?
A: We don't know. There is good anecdotal evidence that IVIG and PEX have both been effective at removing 50+% of symptoms and that these treatments with prophylactic followup antibiotics have kept patients in remission for > 1 year. It does appear, however, that the prophylactic antibiotics is critical as many have had a recurrence when their child has been re-exposed to GABHS.

Treatment: Other

Q:I've read a lot about Ibuprofen. What can it do for my child?
A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules (click here)

Q:Where can I find a list of doctors in my area?
A: Click her for a list of doctors in your area that recognize and treat PANDAS

(add legal disclaimer here)

Q:Why shouldn't PANDAS be treated "like any other case of OCD or tics" like the NIMH website recommends?
A:PANDAS is thought to have a different cause than non-PANDAS OCD and tics. Research studies thus far indicate that children with PANDAS had higher behavioral activation rates on SSRIs see http://mbldownloads.com/0806PP_Murphy.pdf. Anti-psychotics have many serious side effects and there are not controlled studies on the use of these medications on children in the PANDAS subgroup. There has been studies of Cognitive Behavioral Therapy that has shown some efficacy with older PANDAS children; however, the main benefit raised in the report was that parents learned techniques for managing exacerbations. There are not controlled clinical studies on Exposure Response Prevention, but some parents on this forum have tried this technique. Anecdotal reports are mixed on the effectiveness for PANDAS children.

Tests: Strep Culture (rapid and 72 hr agar plate)

My child's PANDAS symptoms are surfacing and the strep test was negative. What's going on?
A: This is an area of active research debate. There are really two questions here. How accurate is a strep test for detecting strep and is GABHS the only trigger for PANDAS symptoms?

PANDAS researchers have only looked at symptom exacerbations associated with strep throat; however, GABHS can colonize elsewhere on the skin, sinuses, eye, ear, gastrointestinal area or peri-anal/vaginal areas.
The accuracy of the throat culture is highly dependent on the sample. As anyone will tell you, getting a culture from a squiggling 5 year old is tough.
Finally and most importantly, the exacerbations are thought to be from an antibody to GABHS getting across to neuronal tissue (i.e., crossing the blood brain barrier). These antibodies can exist for 4-6 weeks and thus if some other virus or bacteria causes inflammation of the blood-brain-barrier the antibody could then cross.

This is a long way of saying that we don't know, but many on this forum will tell you this is exactly what happens for their child.

Q: We had a negative throat culture. Does that rule out PANDAS?
A: No. Group A Beta-Hemolytic Strep can colonize on the skin or the sinuses (plus ear infections, meningitis, pneumonia, GI infection, peri-anal/vaginal infections). A throat culture can confirm GABHS colonization but not rule out PANDAS.

Q: My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true?
A: About 5% of children carry strep without any other symptoms. This is thought to be caused by some interaction with other flora in the throat or some defect in the immune system that prevents it from removing the offending bacteria. There is mounting evidence that carriage is not as benign as once thought. Most doctors only treat asymptomatic carriers if someone else in the family is immuno-compromised. Carriage is typically broken by stronger antibiotics like azithromycin or clindimycin.

Q: Can you get strep somewhere other than the throat?
A: Yes. PANDAS is associated with Group A Beta-Hemolytic Strep and this form of strep can exist on skin. There are many diseases (such as Kawasaki's disease and Impetigo) that are caused by Group A Beta-Hemolytic Strep. Skin GABHS infections do not show a rise in ASO titers.

Q:If my child has PANDAS should I have strep tests done on siblings?
A: Yes. Many on this forum will say that when their PANDAS child was in an exacerbation, a sibling was cultured positive for strep. Some call their PANDAS child a strep detector.

Tests: Streptococcal Exotoxin antibody tests (ASO and AntiDNAseB)

Q: My doctor wants to run ASO or Anti-DNAseB titers. Is a single measurement enough?
A: Actually no. Titers have to be measured at two points (typically a week apart). ASO is typically measured at 4 and 5 weeks from the date of suspected infection and Anti-DNAseB measured at 6 weeks and 8 weeks from the suspected event. The two data points are needed to look for a rise. Absolute values are not as important as the rise/fall of the titer. In the absence of having two titers, many labs use a measure known as the "upper-limit-of-normal". This value is helpful if the measured value is significantly higher than the upper limit. If it is lower than the ULN, then typically two samples are needed to look at the slope/trend.

Q: We had low ASO titers, does that rule out PANDAS?
A: No. Anti-Streptolycin O is a measure of an exotoxin of Group A Beta-Hemolytic streptococcus. Although most strains of GABHS do produce Streptolycin-O, cholesterol (particularly in the skin) can absorb this exotoxin. In one study, ASO did not rise in 46% of patients despite positive throat cultures and perfect timing for taking the ASO titer. So ASO can confirm a previous strep infection but cannot rule out strep or PANDAS.

Q: We had low Anti-DNAseB and ASO titers, does that rule out PANDAS?
A: Unfortunately, No. First, the tests have to be taken during the rising titer period. ASO tends to rise 1-4 weeks post infection and Anti-DNAseB tends to reach a peak at around 6-8 weeks. Even with perfect timing of titer draws, 31% of children with confirmed colonized strep did not have a rise in either ASO or Anti-DNAse B. So anti-DNaseB and ASO can confirm a previous strep infection, but cannot rule one out.

Tests: Antineuronal Antibodies Tests

Q: What are Cunningham tests?
A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.

Tests: Predinsone Burst Test

Q: What is the purpose of a prednisone burst and why does it work?
A: The prednisone burst is used to temporarily slow down the immune system response by reducing inflammation (from T-cells) and reducing antibody production by B-cells. It is thought that prednisone helps close the blood-brain barrier temporarily. Essentially, abatement of symptoms in a prednisone burst helps indicate that the issue is auto-immune. It is important to know that the prednisone burst is a short term treatment (typically 5 days) and is not intended as a long term treatment. Prednisone does have significant side effects particularly for any long term use. Prednisone has no known positive effect on non-PANDAS OCD or non-PANDAS tics.

Q: How long after starting antibiotics should I expect a response?
A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics.

Q: How long after starting a prednisone burst should I expect a response?
A: Similar to antibiotics, most parents have reported significant immediate improvement during severe exacerbation and temporary remission of symptoms at 10-12 days post initiation of prednisone. This test seems to vary with age, symptoms and gender. Caution should be noted here that parents of children with diagnosed Tourette's Syndrome have noted that symptoms actually got much worse during a prednisone burst. As such, there should be good clinical reasons for a PANDAS diagnosis before using a prednisone burst.

Research Questions

Q: What is intracellular strep?
A: Several strains of GABHS are able to penetrate into cells and act like viruses. This has the property of enabling the GABHS to evade the typical discovery mechanism of the immune system by hiding in cells. When the cell eventually dies, the GABHS is released into the blood stream and can grow/reinfect other cells.

Q: Why is PANDAS controversial?
A: PANDAS is a new disease ( 3 months. This means that most researchers pulling subjects who have Tourette's are not studying the rapid onset of symptoms (i.e., what most parents coming here are struggling with). Most of the controversy surrounding PANDAS comes from a particular group of researchers who have not been able to replicate other researcher experiments. We hope they all get together soon and compare notes and methods.

A second source of controversy comes from researchers who think that antibiotics, IVIG and PEX all have powerful placebo effect and studies in Russia and in US on efficacy should not be trusted. It's hard to know how to respond to these researchers except to think they've never had a PANDAS child in their test group. This board has lots of samples of children who are dramatically improved after antibiotics and in severe cases with IVIG and PEX.

Q:I'm concerned about vaccinations and whether they cause of PANDAS
A: The research at this point indicates that the disease is a response to Group A Beta-Hemolytic Streptococcus and not a result of vaccines.

Q:Will a vaccine trigger an exacerbation?
A: Possibly. The theory is that PANDAS children already have a weakened blood brain barrier and when a vaccine recruits T-cells, there is inflammation that can further breach the blood brain barrier. The vaccine acts like a mini version of the illness (bacterial or viral). While the immune system kills off the weakened bacteria/virus in the vaccine, the body still has an immune response and still produces localized inflammation allowing antibodies or B-cells to cross the blood-brain barrier. This is a very controversial area and talking with an immunologist with experience with MS, ARF or Sydenham Chorea is probably the best recommendation here.

Q: Does PANDAS cause permanent brain injury?
A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.

Adapted from (Dec 2009): http://www.latitudes.org/forums/index.php?showtopic=6265 (for PANDAS FACT SHEET)

Adapted from (Dec 2009): http://www.latitudes.org/forums/index.php?showtopic=6265 (for PANDAS FAQ )