Summarized Guidelines for Detecting/Treatment/Prognosis – Anecdotal Non-Medical Advice
More detailed explanations of topics discussed on this page can be found throughout the site.
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:”
The Two Pictures of PANDAS
- 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.
- 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:
- Abrupt onset-of below symptoms. Sometimes sudden and catastrophic
- Tic disorder and/or OCD-like behaviors – often begins with acute anxiety issues and increases over time.
- Pediatric onset from 3 years to puberty.
- 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.
- Neurological abnormalities and or choreaform/random body or facial movements.
PROFILE OF CHILD – this is purely anecdotal and not confirmed scientifically
- 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.
- Family history of strep infections or Rheumatic Fever/Scarlet Fever – parents or grandparents, 1st degree relatives.
- Family history of any autoimmune illness – parents or grandparents or 1st degree relatives.
- Child tends to be perfectionistic and sensitive personality type. Likely compulsitivity or tics runs in the family.
COURSE OF TREATMENT
- Request 10 day course of antibiotics. Symptoms normally diminish to some degree. See the TREATMENTS page.
- 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. See our antibiotic section for more information.
- 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. See our steroid section for more information.
- 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.
- 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 needs to develop a relationship with your doctor that allows for calling in a course of antibiotics each time strep occurs. However, even if a subsequent exacerbation is caught quickly, it does not mean it will be an easier recovery or any less severe. We are hearing from anecdotal reports that often exacerbations worsen each time they occur. There is just no way in knowing how a child will react. For this reason, these child may stay on prophylactic dose of antibiotics.
- 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 for more information on IVIG and plasmaphoresus.
- Children with PANDAS, may have can an “elevated risk for behavioral activation following SSRI initiation” as cited in Selective Serotonin Reuptake Inhibitor-Induced Behavioral Activation in the PANDAS Subtype.
Excellent if Treatment and Vigilance is Continued
The question that most parents have is whether their child will eventually “outgrow” PANDAS. One has to look at that question from two points of view, does a child “outgrow” getting strep infections (the trigger for PANDAS) as they hit adulthood and/or does the child “outgrow” the actual autoimmune disorder.
According to Swedo in her landmark paper, “The age of the host also may determine susceptibility (to PANDAS); it is known that rheumatic fever is quite rare after puberty. It appears that the developmental changes of adolescence may decrease the vulnerability to the cross-reactive autoimmunity. It is also possible that the postpubertal decrease in incidence (44) is related to the fact that the rate of GABHS infections falls dramatically around the age of 12, presumably because the child has developed antibodies against the conserved portion of the M-protein (i.e., the child is able to make antibodies that recognize all strains of GABHS) (V. Fischetti, personal communication, 1994).”
As for the autoimmune aspect of PANDAS, 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.
The hope is that the child’s immune system will eventually learn to develop the correct antibody response to strep as they get older.
When discussing PANDAS, one has to remember that strep is the trigger. With PANDAS, it is important to keep strep at bay and not to incite the autoimmune response over and over. Hence, why many children stay on a prophylactic dose of antibiotics well into adulthood to try to prevent strep infections. Some other children do fine on periodic courses of antibiotics (just when a new exacerbation occurs). HOWEVER, the majority of the cases currently connected to this website have the more severe type of PANDAS that is highly reactive to strep or other illnesses like coughs, flu, fever or colds. These children will maintain their hope for possible full recovery at puberty only with ongoing protection from antibiotics, IVIG or plasmaexchange or a combination of these.
Even if a subsequent exacerbation is caught quickly, it does not mean it will be an easier recovery or any less severe. We are hearing from anecdotal reports that often exacerbations worsen each time they occur. There is no way in knowing how a child will react. The immune system is on high alert. No matter what your choice of treatment, protecting the child from more strep infections or proximity to ANYONE sick with strep in the First Year of Healing needs to remain high priority. We, as parents and doctors, owe it to these children to give them the best chance of recovery and no future suffering.
PANDAS may stop for some girls at onset of menses. 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. According to Swedo in a February 2011 interview, she stated that half of the children in that 8 year study, no longer had symptoms. Some still had some type of symptoms present but they were able to be managed through medications or they were so minute, they did not impede the person’s life and no medication was even needed. It is not clear what type if any treatment these children will have received.
Whether PANDAS can eventually become a chronic condition that will continue into adulthood, no one really has an answer for that. Even practicing doctor and researcher, Dr. Tanya Murphy states in Clinical Factors Associated with PANDAS (2011), “Whether children with a PANDAS subtype typically will go on to remission or progress to a more chronic course of illness is not known.” For this reason, parents MUST remain vigilant in protecting their children from contracting strep. Also. do not assume one can forgo treatment as a child in hopes that puberty holds the key.