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Frequently asked questions about PANDAS ( Autistic disorder & Obsessive Compulsive disorder).

Q. Is there a test for PANDAS?

A. No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

Q. What are the diagnostic criteria for PANDAS?

A. They are:

1. Presence of Obsessive-compulsive disorder & or a tic disorder
2. Pediatric onset of symptoms (age 3 years to puberty)
3. Episodic course of symptom severity
4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or  history of Scarlet Fever.)
5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

Q. What is an episodic course of symptoms?

A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity.  Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a sudden onset or worsening of their symptoms, followed by a gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, to several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems.

 

Q. Are there any other symptoms associated with PANDAS episodes?

A. Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

1. ADHD symptoms (hyperactivity, inattention, fidgety)
2. Separation anxiety (Child is clingy and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.)
3. Mood changes (irritability, sadness, emotional lability)
4. Sleep disturbance
5. Night- time bed wetting and or day- time urinary frequency
6. Fine/gross motor changes (e.g. changes in handwriting)
7. Joint pains

Q. My child has had strep. throat before, and he has tics and/or OCD. Does that mean he has PANDAS?

A. No. Many children have OCD and or tics, and almost all school aged children get strep. throat at some point in their lives. In fact, the average grade-school student will have 2  3 strep. throat infections each year. PANDAS is considered when there is a very close relationship between the abrupt onset or worsening or OCD and or tics, and a preceding strep. infection. If strep. is found in conjunction with two or three episodes of OCD, Tics, then it may be that the child has PANDAS.

Q. Could an adult have PANDAS?

A. Yes. By definition, PANDAS is a pediatric disorder. It is possible that adolescents and adults may have immune mediated OCD. The research studies at the NIMH are restricted to children

Q.My child has PANDAS. Should he have his tonsils removed?

A. The NIH does not recommend tonsillectomies for children with PANDAS, as there is no evidence that they are helpful. If a tonsillectomy is recommended because of frequent episodes of tonsillitis, it would be useful to discuss the pros and cons of the procedure with your child's doctor, because of the role that the tonsils play in fighting strep. infections.

Q. What exactly is an anti-streptococcal antibody titer?

A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse-B) titer, which rises 6-8 weeks after a strep. infection.

Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

A. An elevated anti-strep. titer (such as ASO or AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The  titer elevation does not matter. Elevated titers are not a bad thing. That is  a normal, healthy response  the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have positive antibody titers for many months after a single infection.

Q. When is a strep. titer considered to be abnormal, or  elevated?

A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done ,just ask where they draw the line between negative or positive titers.

It is important to note that some grade school  children have chronic elevated titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is rising  if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)

Q. What are the treatment options for children with PANDAS?

A. The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or Niacin.It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.

Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child primary physician can help you decide which type of specialist your child may need to see to receive these treatments.

Q. Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

A. Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there is not enough evidence to recommend the long-term use of antibiotics.

Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)?

A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in The Lancet, Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions. However, there were a number of side-effects associated with the treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedure, such as these. Thus, the treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. A study was conducted to evaluate the effectiveness of plasma exchange in the treatment of chronic OCD (Nicolson et al: An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. J Am Acad Child Adolesc Psychiatry 2000,  39[10]: 1313-1315. None of those children benefited, suggesting that plasma exchange or IVIG is not helpful for children who do not have strep. triggered OCD or tics. There is Niacin it will resolve all behaviour issue in these disorders .

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