Treatment for PANDAS is usually controversial simply because doctors have not seen it or not read up carefully on it. And, the diagnostic criteria for the illness need better clarification. Below is a list of they types medical experts we've talked to -- in order to help you understand that careful and continued conversations with M.D.'s have occurred to give you the below information.
The observations written here are based on over 70 anecdotal PANDAS experiences and conversations with doctors from Stanford Univ., Yale, Harvard, Georgetown Univ., Univ. of Chicago, U.C. Irvine, Duke Univ. and many others. Their disciplines include Rheumatology, Immunology, Pediatrics, Neuropsychiatry, Streptococcus Experts, Pediatric Neurology – and more. Please know that physicians are making efforts to develop public education about PANDAS and future studies explaining the phenomenon are being pursued.
Read the studies attached. Read the Case Histories. If you have a child that is ill with what appears to be PANDAS it is best to reach out to us and a parent will discuss in detail with you what has helped their child begin the healing process. I have contacted some of the naysayers of PANDAS and, frankly, they have agreed with some of us that they have not seen a case of Acute PANDAS as we describe here. For parents and doctors that have attempted to arrest the onslaught of Acute PANDAS – the below will make sense.
TREATMENTS CURRENTLY USED
There are 4 ways to lessen the autoimmune inflammation caused by PANDAS:
- Short Course of Steroids like Prednisone
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.
Snider, et al (2004) – Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Pneuropsychiatric Disorders.
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.
Doctors have found that a 5 day course of prednisone will make PANDAS symptoms stop altogether. It is a temporary fix. But it proves that an inflammatory reaction in the child is occurring. It may make doctors more inclined to continue with antibiotics until they get more information from our network of doctors on the nature of PANDAS.
Some very extreme and rare cases of PANDAS, where there is clearly encephalitic catatonia, disorientation, hallucinations, beyond the typical PANDAS OCD, Tics, Anxiety issues – have benefitted from one or two months of steroids when administered by a professional Pediatric Neurologist. In our group of 70 children only approx. 5 children have been in this category.
No doses will be given here for the steroids as it is well understood by medical professionals what is the acceptable limit and steroids must be used with caution. The use of steroids is well understood in the medical community for encephalitic matters.
INTRAVENOUS IMMUNOGLOBULIN (IVIG)
Drs. Perlmutter and Swedo used in the 1999, Lancet, Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood, where clearly all of the children benefitted from its use. The sampling was small (30 of children). In PANDAS an autoimmune irregularity is causing encephalitic-like inflammation. Why did Swedo choose IVIG? Because IVIG is used for: Autoimmune and Encephalitic illnesses at doses that far exceed Swedo's modest dose of 1 gram per 1 kilogram of child's body weight.
IVIG is used for many autoimmune illnesses. In fact, the American Academy of Allergy and Immunology advocates in "The Work Group Report" the use of IVIG for PANDAS.
Nonetheless, it is a treatment that no parent should rush into. Some PANDAS children do quite well on intermittent use of antibiotics or daily prophylactic antibiotics and certainly after several months to one year a parent will know if their child fits into this category. See the PROGNOSIS section for the varying ways our group of 70 children presents with this illness.
There are some reports on the internet or from some un-informed doctors that IVIG can be dangerous. This is NOT true. Ask the physician directly, generally they are sending a cautionary statement to you because like ANY medical procedure – whether it be immunizations, tonsillectomy, transfusion, etc. – there of course is a measure of medical expertise that must always be involved. IVIG if administered would only be done in an outpatient IVIG center, surgical center or medical hospital.
The cautionary element is that most doctors know very little about PANDAS; so they must say this so that you the parent become fully informed on your own.
It is an intravenous blood product (the immunoglobulin element of donors blood) that is regularly given to children and adults alike who have certain immune deficiencies. The Immune Deficiency Organization has written an excellent online booklet explaining the contents, cleaning, and use of IVIG.
WHY DOES IVIG WORK? Immunology is a relatively new field of medicine and it is extremely complex. The exact mechanisms of IVIG are not thoroughly understood. It is helpful to understand a little about the Immune System.
IVIG has been shown to be helpful with the harmful inflammation caused by autoimmune illnesses but the exact causative actions are not clear yet. Donor antibodies may "retrain" the abnormal antibodies in the patient or the large amounts administered may simply overwhelm the harmful antibodies – thereby removing them from the PANDAS patient. Suffice to say: researchers have found many beneficial mechanisms in IVIG but still debate the specific mechanisms.
One study indicates that IVIG has also been shown to have a direct effect on the proliferation of natural regulatory T cells (Tregs). Kessel, et al (2007), Journal of Immunology , Intravenous Immunoglobulin Therapy Affects T Regulatory Cells by Increasing Their Suppressive Function.
The process: The dose that Dr. Miroslav Kovacevic has found to be most beneficial for PANDAS is 1.5 Gram/1kilogram. A very tiny intravenous drip is given in the child's arm or hand over a period of 4 to 6 hours. Usually over a two day period. The child can eat or drink as normal. It is very simple and a doctor or nurse is always nearby. On the second day in the evening the child may have a headache or vomiting for 4 to 6 hours and then it will end and the child can go about their daily activities.
Parent Recommendation: Some parents have felt that they re-exposed their children too quickly to other children, particularly in the Winter months when strep is frequent. If possible, keep the child home for at least a week or two if not more. Be vigilant with your child’s school and playmates about strep cases – ask to be informed – explain your child is sensitive to strep.
How long does it take to Heal? For the typical PANDAS case – there will be gradual improvement of the child’s symptoms over a 3 to 4 month period. Some of the more severe PANDAS cases – take up to one year. The healing process is very complex and have highs and lows of symptoms. Please talk with other parents in this network to have a better understanding the process which requires both patience and courage to go through.
Medical Coverage: Doctors involved with PANDAS are trying very hard to get this procedure covered by insurance. Occasionally it is covered – but usually it is not. The cost is approximately $1,000 for every 10 pounds of your child’s bodyweight. We will update this area as we learn about any Insurance Companies that will cover this procedure.
PLASMAPHORESUS or PLASMA EXCHANGE (PEX)
In this process the harmful auto-antibodies are removed from the blood system itself. Please read about the procedure here.
The success rate for this procedure is equally very good. Some cases of PANDAS are very extreme and may benefit from the rapid cessation of symptoms that this offers. What is not clear is if the child's autoimmune system will recreate the negative antibodies. It has been reported that PEX has had to be repeated (as with IVIG) in a few cases. Again, prophylactic antibiotics should be maintained.