Frequesntly Asked Questions:
Will my child outgrow this?
There is currently no long-term prospective study on the outcome of this newly identified (1998) illness. However, in the near future, the NIMH will release an 8 year study, following 72 children. It will identify the physical and psychological outcomes of children with PANDAS versus typical OCD.
The information below is based on input from NIMH physicians and others who have treated PANDAS cases over the past ten years.
__________________________________________________________________
The Goal is Early Diagnosis of PANDAS
We currently know of only two cases where children received prompt treatment with antibiotics and presumably stopped the autoimmune process of PANDAS: in a (2003) Snider, Swedo Case Report and Case #10. Most of us were not able to get early diagnoses and have sought help for months or sometimes years before receiving antibiotics. But the above cases are pointed out in hopes that we can build awareness of this illness with doctors and researchers.
How long does an exacerbation last?
If a child receives antibiotics a typical 5 day or 10 day course of antibiotics with an exacerbation parents and doctors report that after a strep exposure (some children react microbially) or a strep infection the episode lasts 5 to 6 weeks and then it gradually dies out. Low level anxiety and OCD/TIC issues may remain permanently or fade away after several weeks or months. There are times (cases #1 and #2) where the exacerbation takes 4 to 6 months to remit.
However, in many of the acute cases here the typical course of antibiotics is not helpful and the child continues to suffer for months and symptoms often increase in severity. We are not clear if our acute cases are the exception or "the rule" with PANDAS. The acute cases have clearly having an encephalitic reaction to strep and aggressive treatment needs to be considered.
Most children outgrow PANDAS at puberty (ages 12 to 15). It is not clear entirely why this occurs. Experts know that Group A (GABHS) infections fall off around age 16. It may be that after exposure to multiple strains throughout childhood a natural immunity to strep infections builds. Our group has talked to several PANDAS families whose daughters, at the onset of menses have suddenly stopped having any PANDAS symptoms. There are reports of several boys at age 13 or so, who have stopped having PANDAS symptoms as well.
However: about 2-5% of children never develop these protective antibodies and remain susceptible to strep. If parents have strep infections as adults, it is more likely that child will remain susceptible as well.
What is the Long-Term Outcome of this Illness?
It is still not entirely known, expect that generally the symptoms stop at puberty.
Doctors watching PANDAS patients over the last decade feel that if the child continues to suffer from some dysfunction (mood lability or anxiety or mild tics) the long-term outcome seems to depend on: severity of initial episode, number of recurrences, family history and many other factors.
Again, the acute cases we are discussing here, like in any encephalitic reaction it takes time to heal and outcomes of each child are uncertain. But most parents agree, that by puberty, if children are protected by one of the PANDAS treatments (antibiotics at each exacerbation or IVIG or PEX if the child does not improve on antibiotics) they have a healthy outcome and function without problems. The proper function of the basal ganglia is difficult to monitor. So doctors arent able yet to determine if any persistent symptoms are related to dysfunction (temporary) or damage (longer term).
Therefore, in acute PANDAS cases, where cessation of acute symptoms just does not occur parents opt for IVIG or Plasma exchange in order to prevent brain damage.
Will IVIG or Plasmaphoresus (plasma exchange, PEX) or Antibiotics help my child?
The landmark paper regarding the use of Plasma Exchange and IVIG, by Perlmutter, et al (1999) clearly shows that the 30 children involved very much improved after these procedures.
Despite this study there is criticism of these therapies. Of the 50+ doctors we have discussed this with they say it is because of a lack of "clear diagnostic guidelines for PANDAS."
At any rate, for families who have lived through the acute onset and sometimes debilitating continuance of PANDAS symptoms the choice to try PEX or IVIG is clear. Our children are suffering greatly in these cases. Again, this is all anecdotal, non-scientific, information only.
The Current Group of PANDAS cases. Over 25% of the parents in our small group of 80 have found that antibiotics after several months, though successful at creating an initial cessation of symptoms, ultimately find their child's autoimmune system so taxed (reacting to many other viral and bacterial infections) that they are seeking IVIG or PEX.
Most parents who have done IVIG in our group (approximately 13 with more families doing IVIG within the remaining months of 2009) say a 70-90% cessation of symptoms post-IVIG took 3- 4 months. A nearly 100% cessation occurs at the end of one year with low level hyperactivity or anxiety appearing during times of fatigue. The IVIG procedure was done generally after 6 mos. to 1 year of sustained suffering from periodic acute PANDAS symptoms despite antibiotics.
Doctors we have talked to say the vast majority (approx. 200 children based on conversations) of PEX and IVIG patients have not had to repeat the procedures and assume families are satisfied that their children are recovered.
However, there are reports of the need to repeat IVIG and PEX for about 6 patients with acute onset of PANDAS. And that after those repeat treatments the children improved greatly.
What about Prophylactic Antibiotics How long should my child stay on them?
The current guideline from the NIMH is: PANDAS children should continue until age 18 to 21 years of age as prescribed by the American Academy of Pediatrics for Rheumatic Fever and Sydenham Chorea. At which time it is presumed the child has built up a proper immune response.
In the Current Group of PANDAS cases approx. 10% of the children recovered after several weeks or several months of symptoms. They remained on prophylactic antibiotics (up to 1 year) and had a complete cessation of symptoms and the parents have taken the children off antibiotics. If the child has a reoccurrence of symptoms they will begin antibiotics again.
The other approx. 15% are continuing on daily prophylactic antibiotics beyond 6 mos. as their children still have low level anxiety, mild ocd/tics, and hyperactivity and are deciding if their children's condition is manageable or not.
Finally, there is the another 15% of the group that has gradually outgrown PANDAS at puberty and are now between 14-18 years old. They only remained on antibiotics throughout childhood with no IVIG or Plasma Exchange to lessen severity. Most of the parents have said their childhood was challenging and difficult on the family life. Their children had to be in special IEP classes in Grade School. Their doctors gave antibiotics periodically when strep was in the household or classroom environment or if they got a strep infection. They are not currently on prophylactic antibiotics post-puberty but are vigilant.
|
