Our Group of 80 Parents (2007-2009)
Prior Bacterial/Viral Infections - Our Group of 80 Parents (2007-2009)
How can strep be doing this?
Will this reactivity to strep continue beyond the onset?
Are other bacteria or viruses activating pandas symptoms?
Why is there Medical Controversy?
It is beyond the scope of this writer's ability to explain HOW Strep can be causing the PANDAS phenomenon. A few issues regarding the virulence of strep will be pointed out to help parents understand the complications that can occur with a typical strep infection.
OUR GROUP of 80 Parents (2007-2009)
The below is given in generalities and we invite a medical professional to review our records to better articulate the following case histories. THE ONSET OF PANDAS AND STREP:
One quarter(¼) : IMMEDIATE ONSET: within one week of a strep event and positive strep test. Usually high titers are shown if doctor knows to do blood draw.
One quarter (¼): GRADUAL ONSET: occurring 1-6 months after diagnosed strep event. By this time the strep may be intracellular and the strep test is negative. Often titers are high.
One quarter (¼) : AN UNDECTECTED STREP EVENT ONSET: A "strep-like" episode with unremarkable symptoms so strep test or titers not taken: tummyache, headache, fever, minor soar throat. Within 30 days - the child has a PANDAS ONSET.
One quarter (¼) report: MICROBIAL REACTION TO STREP ONSET: The child has a weakened immune system due to other illness and appears to react to a sibling/ family or school mate strep. By the time strep test has been taken it is Negative and Titers are Normal to Low. Responds positively to antibiotics. In retrospect, parents say their child had "behaved strangely" intermittently prior to Onset.
The problem: by and large - only 10 days of Amoxicillin are given to these children. Some have a minor positive response. They are taken off the antibiotics and then explode with PANDAS symptoms within a week to one month. By this time the strep test may no longer be positive, titers are not drawn and the family is left without medical assistance. Often, the children are able to arrest continued symptoms with Azithroymcin or Cephalexin (Keflex-the first generation of cephalexins) - antibiotics that can penetrate resistant strains of strep.
PRIOR BACTERIAL/VIRAL INFECTIONS - OUR GROUP of 80 Parents (2007-2009)
The PANDAS onset appears to often occur (90% of cases), but not always, with an already weakened immune system.
Some of the intermittent illnesses reported since early childhood prior to the PANDAS onset: glomerulonephritis; septicemia susceptibility; resistant otitis media incidents; chronic sinusitis; rheumatic fever; chronic vaginal or rectal strep as a toddler; chronic URI's as a toddler; Mediterranean Fever as a toddler; herpes simplex in the mouth; Ebstein's -Barr virus, Mycoplasma pneumanaie, and Lyme Disease.
There are only a few families that report that strep is frequent amongst family members and therefore are constantly re-exposing the child to strep. In these families - the children clearly DO have a re-exacerbation of symptoms with family members strep episodes.
HOW CAN STREP BE DOING THIS?
The study of Streptococci is a field of study unto itself and there are well over 100 serotypes (M1, M3, M18) and within that there are different STRAINS - some strains are virulent and others are not. This is beyond my abilities to write about - but briefly - these are some of the problems with strep.
WILL THIS REACTIVITY TO STREP CONTINUE BEYOND THE ONSET?
The anecdotal evidence we have gathered from former PANDAS cases and within our Group of 80 - shows that like in Sydenham Chorea or Rheumatic Fever - clearly some children continue to have re-exacerbations with strep -- some may not. It is unclear why this happens.
For those of us who have experienced the encephalitic-type onset of PANDAS (perhaps there are milder onsets? But we are not sure.) - the prospect of risking another strep infection is terrifying and we will continue to monitor each of the families progress as best we can in an effort to help researchers understand the need/or not for prophylactic antibiotics into puberty.
A recent study tried to document clear clinical re-exacerbations with strep and therefore prove the need for daily prophylactic antibiotics. It followed 40 children with apparent PANDAS. In (2008), Kurlan, et al, Streptococcal Infection and Exacerbations of Childhood Tics and OCD Symptoms: A Prospective Blinded Cohort Study, children ages 10-12 were followed for two years and had 75% Tourett's w/comorbid 52% OCD presentation. Their exacerbations were minor. The children had a total of 64 exacerbations over the two year period. Only 5 exacerbations were linked to clear cases of Strep.
These were children taken from a Tourette's Clinic. The researchers did not follow the children from onset. What was the age of onset of PANDAS? How many years did they suffer without any antibiotics to squelch the onset? Is this a subset of PANDAS?
Simultaneously, another study ((2008) Gabby et al) came out that said 22 out of 27 children diagnosed with PANDAS in a community clinic received antibiotics without proper adherence to the PANDAS diagnostic criteria.
This begs the question:
ARE OTHER BACTERIA OR VIRUSES ACTIVATING PANDAS SYMPTOMS?
After several months, the autoimmune process is in full swing and the child may negatively react to many viruses, bacteria, URI's and even chemical compounds like paint or chlorinated pools.
And, herein, lays the confusion with researchers attempting to understand the illness post-PANDAS onset. Many (but not all) of the parents have discussed the fact that after a period of weeks or months of cessation with antibiotic treatment - the child continues to have minor exacerbations. The baseline personality (OCD) and/or physical well being (Tic) of the child has altered and is constantly excited by both viral and bacterial interactions.
Why is there Medical Controversy?
The bottomline problem is that this is a "New" illness as of 1998 and no one has followed these children from the ONSET. The evidence we gather about the prognosis for our children is based on medical doctors accounts and conversations with patients that have been informally followed within the the past 10 years.
I, Diana P., have personally talked with a few of these researchers critical of the PANDAS-theory and they have said they have not seen PANDAS at its Onset.
What is currently needed for Medical Researchers is:
- A Clear Neuropsychiatric Diagnostic Scale for the PANDAS Onset.
- A Clear Immunological Work Up to understand its mechanisms.
Without Clear Diagnostic Understanding of the Onset - doctors do not know what to do. There are 5 fields of medicine involved with PANDAS: Pediatrics, Neuropsychiatry, Rheumatology, Immunology, and Infectious Disease.
The Field of Neuropsychiatry and Immunology - are relatively new areas of medicine that the typical Pediatric doctor has little experience with either field NOR do they understand how to read the complex Immuno studies. Then, to top it off with - very few doctors have seen PANDAS - it is a "rare" condition - though some of us suspect otherwise.
For those of us who have seen the debilitating ONSET of PANDAS - a sudden and dramatic change in our child in CATASTROPHIC proportion - it is necessary to take action to arrest this onset. Doing nothing - which some of these studies suggest - is simply not an option.
MANY OF US HAVE STOPPED THIS ONSET in its tracks with aggressive antibiotics and for some of us IVIG or Plasma Exchange. It has worked for us. For some it is a cure; and for others a treatment arresting the majority (95%) of all symptoms. It worked in the one and only Perlmutter/Swedo (1998) Study - we hope for the sake of other children - the investigations into these therapies will continue.