The type of infection dictates the type of needed antibiotic. Below is based on strep triggered PANDAS as PANS treatment is still in development. Some infections that can trigger PANS, like Mycoplasma Pneumonaie, would not respond at all to some of the antibiotics that would be prescribed for strep. So, testing for triggers is important as is charting progress. If no improvement occurs over time, it may indicate a different antibiotic is needed or a different (or additional) infection is present.
This is a great first choice—because it is well studied and well known by doctors as an acceptable prophylactic antibiotic for illnesses like Rheumatic Fever and Sydenham Chorea. It has worked very well with cases on the East Coast. However, there are times when more virulent strains of strep will break through penicillin and we have found it did not cause any cessation of symptoms.
As stated in “Group A Streptococcus and its antibiotic resistance”, “The failure of penicillin to eradicate Streptococci from the throat occurs in up to 35% of patients with pharyngo-tonsillitis.” So, in simple terms, penicillin will not always erradicate a strep infection.
Augmentin has gained popularity within the PANDAS community. Even though this option has greatly helped some children, it is not a “cure all”. Some children need a different antibiotic other than Augmentin or need to seek additional treatment options.
Several families on the West Coast and elsewhere have had to use Azithromycin and persist in its use for several weeks and months. There was virulent strain of strep in the San Francisco Bay Area in 2007/2008 that caused diseases beyond PANDAS: rheumatic fever, necrotizing skin issues, persistent ear inflammation, and the like – none of the PANDAS children improved without continued prophylactic Azithromycin.
Azithromycin is a “front-line” antibiotic, broad based and protects against many forms of bacteria – so doctors are loathe to use it for fear of creating greater resistance to bacteria for the population. At this point, some of the Rheumatologists and Infectious Disease physicians we have seen have been compassionate and know that PANDAS cases are few. That the risk to our children is great and until the medical community gets the PANDAS debate under control – they have been willing to provide Azithromycin for us. This has been useful for several us for over one year’s time. There is debate about the safety and efficacy of continuing on it for several years. We’ll have to keep you updated on this debate.
In some children, doctors have noticed the generic Azithromycin by name of “Greenstone” is not working well. SANDOZ and TEVA are doctor preferred.
THE POSSIBLE ROLE OF ANTIBIOTICS
The role antibiotics play in helping to heal a child with PANDAS may be more complex than just eradicating infections and preventing new ones from occurring.
TYPE #1: A child that improves with antibiotics
The parents and provider will see improvement in the child and an easing of symptoms. Some parents have said their child rapidly improved with antibiotics, other have experienced a child in which improvement occurs over a period of time.
The may then not be reactive again until they get another strep infection or if a family member gets a strep infection. They may experience mild setbacks with viruses, other infections, etc. as the healing process continues.
TYPE#2: A child that does not improve with antibiotics
When a child has no improvement with antibiotics, the child’s episode a be encephalitic in nature and the inflammatory reaction may not only increase over time but take many months to stop. A good number of the original PANDAS cases PANDAS Network followed fit into this category.
For some children, antibiotics are needed for a minimum of 6 weeks to see a large reduction – but even then….not 100% reduction in symptoms. The autoimmune process is well in place and if after several months the child seems to be reactive to many illnesses at school or at home – URI’s, flu, sinus problems – it may be time to consider the 3 other treatment alternatives. EVERY PARENT KNOWS AND SEES IF THEIR CHILD IS NOT IMPROVING. IN OTHER WORDS, THE CHILD YOU HAD ONCE BEFORE IS NO LONGER PRESENT MUCH OF THE TIME.
It has been recommended by physicians that the PANDAS child remain on prophylactic antibiotics in accordance to the RF (Rheumatic Fever) guidelines established by the American Academy of Pediatrics Journal. The RF guideline by the AAP is for 5 years after last attack or until age 21 (whichever is longer). According to the World Health Organization, the duration of prophylaxis for ARF is 5 years after last attack until 18 years old (whichever is longer).
Children who have been ill with Sydenham Chorea, Rheumatic Fever or PANDAS have a risk of developing a more severe reaction if infected with strep again. Prophylaxis prevents re-infection.Children are believed to be around strep at least 10 times per year – increasing their susceptibility to strep.
Long term prophylactic antibiotic use for PANDAS has been shown in the study Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neuropsychiatric Disorders to “…play a role in the management of children in the PANDAS subgroup, as well as provide support for the assertion that GAS plays an etiologic role in some children with tics and/or obsessive-compulsive Disorder”. In that same study, it also states that “There was a 61% overall reduction in neuropsychiatric symptom exacerbations during the year of antibiotic prophylaxis and a 94% reduction in GAS triggered neuropsychiatric symptom exacerbations.”
THE NATIONAL INSTITUTE OF MENTAL HEALTH AND PROPHYLACTIC ANTIBIOTICS
According to the recently updated NIMH page (updated 2012), prophylactic antibiotics “may be helpful to use antibiotics as prophylaxis (prevention) against strep infections. Prophylactic antibiotics have proven to be quite beneficial to patients with rheumatic fever and Sydenham chorea”.
The NIMH also provides a graph (see right) from the above mentioned Snider et al. study that shows improvements with Penicillin and Azithromycin in children with PANDAS. “The red line indicates the start of antibiotics prophylaxis, so marks to the left of the line represents the year prior to receiving antibiotics (most children were symptomatic for at least several months during the year) and the area to the right of the line shows the symptomatic months while taking penicillin or azithromycin”.