CHEAT SHEET – Guidelines for Detecting/Treatment/Prognosis – Anecdotal Non-Medical Advice

This is based on the National Institute of Mental Health's (NIMH) criteria with additional comment based on contact with approximately 70 patients with PANDAS as of May 1, 2009:

In talking to nearly 100 parents, it seems there are two pictures of PANDAS:

Mild Presentation

1. An abrupt onset with hyperactivity, agitation, tics, anxiety issues that are OCD-like: need for constant attention, comfort, etc. – to name a few examples. Symptoms rapidly reduce with antibiotics.

Acute Presentation

2. Catastrophic and sudden acute onset that appears more like an acute encephalitic-like onset, for example: psychotic imaginings, terror, intense anxiety, suicidal remarks, in addition to hyperactivity, comatose state, etc. Symptoms lessen in 5 to 10 days of antibiotics but must be continued for 5 to 6 weeks to make near total cessation of symptoms.

BASIC IDENTIFICATION GUIDELINES ARE AS FOLLOWS:

1. Abrupt onset-of below symptoms. Sometimes sudden and catastrophic
2. Tic disorder and/or OCD-like behaviors – often begins with acute anxiety issues and increases over time.
3. Pediatric onset from 3 years to puberty.
4. Onset or exacerbation is temporally related to strep (GABHS) infection and or often undetected strep that will present as high fever often with tummy ache. See ASO-Titer Table. Either elevated titers or positive strep result. Occasionally either will be missing at the time of medical visit because as in Rheumatic Fever – the titer and positive strep test can fail. HOWEVER, there will have been a strep event up to 4 to 6 months prior to onset.
5. Neurological abnormalities and or choreaform/random body or facial movements.

PROFILE OF CHILD – this is purely anecdotal and not confirmed scientifically

1. Often the child tends to have had sinus issues, URI's or croupy cough; allergy or asthma-like issues. Many PANDAS children do not have a history of repeat strep infections.
2. Family history of strep infections or Rheumatic Fever/Scarlet Fever – parents or grandparents, 1st degree relatives.
3. Family history of any autoimmune illness – parents or grandparents or 1st degree relatives.
4. Child tends to be perfectionistic and sensitive personality type. Likely compulsitivity or tics runs in the family.

COURSE OF TREATMENT

1. Request 10 day course of antibiotics. Symptoms normally diminish to some degree. See the TREATMENTS page.
    
2. Carefully document change in child's character. If after going OFF antibiotics symptoms exacerbate within a few days, request an additional 5 to 6 week course of antibiotics and child should continue to improve (especially acute cases). Penicillin or Augmentin is often effective but for stubborn strains of strep Azithromycin or Cephalexin are best.
    
3. Prednisone for 5 days or more is needed for acute, resistant cases of PANDAS where several weeks of antibiotics still do not render adequate results. This often confirms inflammation of the basal ganglia –and the child will have a temporary recovery following this steroid treatment.
    
4. Watch child's behavior and their health. Because this is an autoimmune illness some children exacerbate with many bacterial or viral infections. Some children exacerbate primarily to strep and get repeated strep infections. Only time will tell you this.
    
5. For Mild Pandas Cases: Some children are fine with antibiotic course each time they get a strep infection and symptoms are in complete remission between strep infections. One may just want to develop a relationship with your doctor that allows for calling in a course of antibiotics each time strep occurs.
    
6. For Severe PANDAS Cases: Other children need to stay on daily prophylactic antibiotics because they are highly reactive to strep in their environment – even without a strep infection themselves. These children also tend to exacerbate around other bacteria and viruses. The child is continually debilitated emotionally and physically and may develop pale pallor, dark circle under their eyes. Over time the child becomes increasingly exhausted and irritable. The parents of these children often consider IVIG or plasmaphoresus at this point. Within one to two years it will become apparent if this more serious step is needed. See the TREATMENTS page.

PROGNOSIS – Excellent if Treatment is Continued

Researchers do not know the exact mechanism – but most children "outgrow" strep infections in their teen years. Theories are that 1) overtime the body develops a natural immunity through a natural immunological maturing process; 2) the thymus (producer of antibodies in children) largely shuts down at adulthood.

NOTE: Some other children do fine on periodic courses of antibiotics. HOWEVER, the majority of the cases currently connected to this website – have the more severe type of PANDAS that is highly reactive to strep. These children will maintain their hope for full recovery at puberty only with ongoing protection from antibiotics, IVIG or plasmaexchange or a combination of these.

PANDAS appears to stop for girls at onset of menses. Boys similarly grow out of strep around age 14. It is currently believed through follow up conversations with parents that only 2-3% of all pediatric cases have recurring issues into young adulthood. It is not clear yet if that 2-3% did not get adequate preventative care in the earlier years. Doctors will try to clarify that issue in the near future. The NIMH is completing a prospective 8-year study of PANDAS children in 2010 following children with PANDAS-onset OCD and Non-PANDAS OCD. It is not clear what type if any treatment these children will have received.