PowPow

I did not say that one should not test for offending infections. In fact, I believe that is crucial. I also did not profess that a response can be determined strictly from pex. There is a huge tendency to presume (and based on much advice from these forums) that Lyme is a factor in many or even every child's PANS symptoms. It may be. However, many, many children have negative Lyme test after negative test. Some blood, some CSF, some urine. If it is negative, perhaps the focus, instead of finding a practicitioner to "find" Lyme or mold, or gluten or whatever the potential offending agent may be, would be to address the faulty immune response. I would not encourage a parent to ignore an infectious trigger, but I do speak from much experience with several children affected, severely, and having had nearly every treatment given for this disorder (including Lyme treatment)~ that if proven accurate Lyme tests are negative, one should go with what works. If that is pulsing Lyme antibiotics, high dose steroids, or having someone wave a magic stick over your kid and proclaiming them healed from what ails them, then do it. There is a huge amount of undeserved anxiety put into nearly every parent on this forum regarding Lyme. Parents whose children are severely ill are terrified to give their children steroids "because someone the forum told me it is so bad for Lyme". Children are being undertreated- as their parents are afraid to try the steroids their PANS docs give them, because these parents have been coached to believe that, no matter how many Lyme tests they take~~ you never can be sure about false negatives! If a suffering child has PANS (which I will be happy to define shortly- though I imagine you meant that tongue-in-cheek and do not really want a definition from me); has pex and recovers, only to relapse; it does not mean that there has to be Lyme or a co-infection invovlved.That is all I was pointing out. I am very happy for those who have discovered that Lyme treatment brings their children back. I am very happy for those who "peel an onion" (excellent analogy, llm!) and get their kids back. I am so pleased to read about qannie, Ophelia, surfmom and others who have found a diagnosable autoimmune illness that can be treated and restore quality of life for themselves and their children. My heart just breaks for those who pursue autoimmune treatment, see it work, even if only temporarily and drop it, in favor of basing questionable treatment on even more questionable results. It happens far too frequently. I will be happy to share "my" definition of PANS and PANDAS, though it can be found, in summary, on the NIMH website : http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml I hope all realize this response is respectfully submitted, with much appreciation for the parents on this forum, who all have the same desire to bring our suffering children back from the brink of PANS.

pex can also be only a temporary relief of symptoms if there is an autoimmune process still occurring. However, that relief of symtpoms can be an amazing thing for their suffering and may also be the a huge help in getting toward more permanent healing. I say this only to point out that all relapses after treatment do not necessarily indicate a tick-borne infection.

Pex helped my child immensely, when ivig did not seem to help at all. Positive steroid trial confirmed an inflammatory basis, pre ivig and pre -pex

What did dr n say about lyme and bartonella? Is he taking over the case?

Oh my goodness!!!!!! THIS MADE MY DAY! what tx plan, Ophelia?

For anyone interested: I found this really interesting slide share from a Dad of PANDAS-tics patient from 2000 or thereabouts~ it is really interesting to see where he was going with this. I understand it only enough to say that enjoy! http://www.slideshare.net/ramdab/the-bonniestudyfinal?from_search=4

Me, too. Wondering about you two!

tu4four, has there been ANY positive signs toward autoimmunity? even slightly? positive sed rate, ANA, dsDNA, anything? after this testing, I would,for sure, try the steroids. They are life -changing for my girls! I am really hoping you find something.

bump

How was appt with Dr N? Is she any better? I mean since you started treating, not since the appointment, obviously.

Does anyone know what iv med she is getting?

Another forum friend who does not post often sees dr n. Does not know dr c, but said dr n's office has been nothing but professional. Only positive reports from that office. I am sorry you have to deal with this confusion.

Searching for help, Has your tried steroids?

thanks for posting about this trial, though. Did not even know it existed. we have a few siblings affected (some recovered) and are local to NIMH, so I just sent an email off to Dr Swedo. Thanks!

Church sure won't hurt, though, JoyBop! Lol Any comments on sibling groups?

Deborah, please contact pandasnetwork.org They may have a stanford pans parent who can help you.

Who is running this one? Any info?

Another PANS conference?

I am so happy for you! When my daughter had some positive antibodies, I cried with happiness right there in the waiting room!! ( where the doctor had come to find me!)

So glad they are out! Keep us posted on pathology report.

It has always taken my kids 10-14 days on steroids to see improvement.

I would be extremely hesitant to try prozac again. The reason is twofold: # 1 kids with pans have been shown to do poorly with SSI medications # 2 whatever Neuro transmitters are messed up in her body, if they did not respond prozac originally most likely will not now especially if they made her violent

So, I am not a neurologist (I WISH!!) but, they would not be clinically significant, if your child had no symptoms. Oligoclonal bands are markers of autoimmunity & your kid has (had?) them in their CSF! Sounds significant to me. here is something for you to look at & Dr Dale is a PANS guy, if I am correct : http://www.ncbi.nlm.nih.gov/pubmed/20871402 PM'ing you, too.

Mentally or physically or cognitively could not write? What was the reason: Motor skills? Spaced out? Confusion?

Is seeing a rheumatologist? Or is she immune deficient? What are her new symptoms?