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2009 Notes from Diana's Meeting with Cunningham


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Diana does work on the PANDAS Network website, so I will provide a quote from that website that goes more into detail about puberty and symptoms....

 

 

http://www.pandasnetwork.org/prognosis.html

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 aren’t 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.

 

I do think it is important to remember that the first known cases of PANDAS are just becoming adults now so we really don't know what the long term outcome will be. I think we also need to remember that it is not cut and dry. Perhaps most will outgrow it puberty, but that does still leave a percentage that may not. Why is that? I don't know. My personal opinion is that there are many factors that go into the equation of who outgrows/who does not. What is the status of their PANDAS symptoms at time of puberty, what kind of PANDAS they have (chronic, sudden onset, PITAND vs PANDAS), how long did they have those sympyoms, maybe if they have a hidden/lingering infection at time of puberty, maybe it depends what their family history is, maybe there is a co-morbid dx.

 

I want to add that Diana does not have the mentality of "just wait it out...it will get better". I think it is safe for me to say (and people, correct me if I'm out of place) that she wants parents to fight hard for their kids, be aggressive in treatment. Be on long term antibiotics, go onto IVIG or Plasma Exchange if necessary. Don't just wait it out.

 

The teens and adults who have PANDAS symptoms and reaction now will be the ones we learn from. You guys are the ones paving the road for those future cases.

 

We are all still learning about this and it's obvious more research is needed.

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Hi All

 

Just wanted to update you with my PANDAS fight!

 

DD has just finished her high dose abx and straight away her temperature is rising. I've had enough of watching her suffer and losing more precious childhood moments so I've rang the hospital and had a "moment"

 

GREAT NEWS ......They agree that something is going on infection wise and the abx are not working. We are going into the ward Tuesday morning for tests, which I feel are a month overdue!

 

I've armed myself with all the parents knowledge on the forum and I would like to say a MASSIVE thankyou for everyone highlighting to me all the issues found with PANDAS.

 

I will keep you updated to treatment and anything that they find.

 

Thankyou so much

 

Jules and family

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I'm sorry she is not doing well, but the good news is they are realizing something is going on. Good luck and keep us updated!

 

 

Hi All

 

Just wanted to update you with my PANDAS fight!

 

DD has just finished her high dose abx and straight away her temperature is rising. I've had enough of watching her suffer and losing more precious childhood moments so I've rang the hospital and had a "moment"

 

GREAT NEWS ......They agree that something is going on infection wise and the abx are not working. We are going into the ward Tuesday morning for tests, which I feel are a month overdue!

 

I've armed myself with all the parents knowledge on the forum and I would like to say a MASSIVE thankyou for everyone highlighting to me all the issues found with PANDAS.

 

I will keep you updated to treatment and anything that they find.

 

Thankyou so much

 

Jules and family

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