All of the 70 families discussed here have found it necessary to maintain prophylactic antibiotics to arrest the autoimmune reaction. If antibiotics are administered quickly –within the first 30 days of initial onset – there is hope that the PANDAS autoimmune process will stop permanently. (SEE CASE #10) And, a Case Report of a young boy whose PANDAS was arrested with rapid antibiotic treatment: Snider and Swedo (2003) Journal of Child and Adolescent Psychopharmacology.
Prophylactic Antibiotics until puberty are used to protect the child from another strep infection.
Unfortunately it takes most families 3 to 4 months at the least to hear a physician utter the word PANDAS or they learn of it themselves through their own research. At this point it seems that the autoimmune process is often well in place.
A child will fit into two types of PANDAS categories:
First Type) A child will have a rapid cessation of symptoms with a typical course of antibiotics. They will then not be reactive again until they get another strep infection or if a family member gets a strep infection. These children then go off antibiotics after a typical course. THEN, if there is a second episode of PANDAS symptoms at a future time – they will be a good candidate for prophylactic antibiotics – as they fit the Swedo 5 diagnostic critera:
- sudden onset ocd/tic disorder
- prepubertal onset
- episodic course of symptoms severity
- association with GABHS infection; (our group explains onset can be 4-6 mos. post- infection and occasionally w/out excessively high titers)
- Neurological abnormalities
Second Type) A child will NOT have a rapid cessation of symptoms with a typical course of antibiotics. They DO NOT fit the typical “episodic course” Swedo describes — they simply DO NOT improve after a single course of antibiotics. Their episode is encephalitic in nature and the inflammatory reaction may not only increase over time but take many months to stop. Most of the case histories on this site depict this.
Therefore, the antibiotics must persist for a minimum of 6 weeks to see a large reduction – but 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.
Type of antibiotics to use: Penicillin 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.
Augmentin (amoxicillin/clavulanate blend) and Cephalexin, KeFlex, (a cephalosporin) have been very good for arresting most strains of strep. See remarks on Cephalexin superiority over penicillin regarding post-strep illnesses at page (3) of by Dr. R. Hahn, et al (2008) Evaluation of Post-streptococcal Illness.
The Cephalosporin alternative is also discussed in the American Academy of Pediatrics Journal, p. 1609 – Prevention of Rheumatic Fever and Diagnosis and Treatment of Acute Streptococcal Pharyngitis.
Lastly, 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. (SEE CASES #1, 2, and 3 and the TABLE OF VIRULENT STREP CASES)
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.
Length of Prophylaxis: It has been recommended by the physicians that the PANDAS child remain on antibiotics into their teen years or until age 21 as outlined in the American Academy of Pediatrics Journal.
According to the doctors we’ve spoken to PANDAS has proven to generally be a pediatric illness only and upon the onset of puberty for boys and girls – the autoimmune reactivity to strep stops. The exact physiological mechanisms, hormonal changes and changes in the thymus gland, less exposure to strep, are not yet fully understood.
But, briefly, 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.
Please see the PROGNOSIS section of the website for a more thorough discussion of why this treatment has been found to be helpful.