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Discussion Starter · #1 ·
I can't believe we are actually getting an answer to this...we went from the beginning of the summer where we heard bipolar and possible schizophrenia to seeing a new doctor who recommended reading a book called "Healing the New Childhood Epidemics", to me requesting a PANDAS test, to finding out she is confirmed to have PANDAS...this is very basically what happens in PANDAS from what I can gather (please let me know if you all have experience in this and know more! I wrote this quick rundown for family who has no idea what it is)

Here is a quick rundown of what it is:

What happens is that the strep antibodies being produced to fight the strep in her body (whether it is acute or not, it's been there) attack the basal ganglia in her brain. This becomes inflammed and she has no "executive thought"...meaning her reactions become "primal" and she has no ability to control her raging and actions. We could talk to her until we are blue in the face, as we have, about not hitting, using words, not screaming, etc. etc. but when the basal ganglia is inflammed there is no way for a person to control their anger. Their calming mechanism cannot reach the other part of the brain because of the inflammation. Hence the "cycling" where they just scream and rage until they exhaust themselves and fall asleep. There is not enough information out there for most doctors to have any clue to look for this.


This causes the OCD and severe anxiety symptoms, separation anxiety, the inability to sleep, etc.

We'll be starting treatment today...cross your fingers for us that we're finding real answers to the past seven years!!!
 

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Discussion Starter · #3 ·
She had the blood titer test that was elevated...you also have to have the other things...onset before puberty, OCD/severe anxiety, some have tics, etc. There are a lot of things out there....it's poorly shown on the web, unfortunately. When I read the case studies in the book listed above, I just had that mother's intuition that said, this is it, I have to get this test. This is describing my child! PANDAS is still under research as far as treatment goes. Antibiotics are used (sometimes as needed for years) as well as IV glubolin or something like that...we're using some natural things as well.

http://www.webpediatrics.com/pandas.html
 

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I've read about PANDAS (in my looking into OCD stuff myself mostly).

I hope the treatment is successful. It must feel very good to finally have a cause.
 

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Awesome! I've heard of PANDAS from some of my other Yahoo groups. I'm glad you caught it and you know what to do going forward. I've heard good things about IVIG. I hope the insurance will cover it. It's expensive but so worth it.
 

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Can you tell me exactly what test is used?
This was mentioned about my son. He just got strep throat twice in a month and along with it came OCD things. He is a little OCDish but 2 days before his strep test came back positive it got worse. A friend told me there wasn't a test but I heard conflicting info.
Would love to get a name of the test
Thanks!
 

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The relevant though not definitive tests would be a throat culture (long, not just short), ASO titer, and antiDNAseB or something like that. They aren't definitive. I don't think it's controversial that PANDAS exists, it's more that who to treat and longterm antibiotics treatment are controversial. My son, for example, will get intense OCD type stuff and/or tic episodes that do seem to just powerfully appear over a few days because that's how Tourette's works for many people. And while in most people tics aren't caused by illness or allergies or anything like that, those things can definitely exacerbate tics. I do think there are areas (certain parts of Florida, I've noticed) where lots of people with fairly gradual onset tourette's or ocd are being prescribed long term antibiotics without even confirming that they have strep throat. OTOH, someone could start the syndrome at 4 and live with a carrier or be a carrier themselves and it might look like normal waxing and wanind but really be that they were getting multiple mild strep infections in the year. There are clearer cases, though, where a child w/out any tics or ocd gets strep throat and suddenly has clear tourette's and severe ocd.

But I _really_ hope it works for your girl, fluttermama. That does kind of make sense with what you've described about her over the years. And a high ASO indicates some sort of bacterial infection going on.

Sherri
 
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