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Dissociation, Pandas and Anxiety

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My daughter (Meghan) is 16 years old.  She recently, (August of 2018) started experiencing what she called "spells".  These are best described as dissociation.  She says she's confused, doesn't really know what's going on and in a dreamlike state.  These used to last for 10-15 minutes.  Now it's become permanent, a 24/7 feeling.  As a result she gets extremely scared and anxiety kicks in.  We met with a therapist and the first thing that she noticed was that Meghan's eyes were very dilated.  She asked us if she's ever been tested for Panda's. We didn't know what it was and said no.  We spoke to our pediatrician who coincidentally is one of the few doctors that we've found that treats Panda's and he did some blood tests.  The results showed that her markers for Pandas were all high.  We started with antibiotics and anti-inflammatories.  This has gone on for about 3 months with zero progress.  We are now at the point where she doesn't go to school, she is not longer on her high school sports team, she's afraid to do certain things like get in a car, go outside and others.  Our therapist has tried to counsel Meghan to push through this.  Go to school, "lean into" the panic feeling but don't give in and stay home.  That will lead to larger issues long term.  My daughter has given a huge effort to do this, but just can't make it through the day.  Yesterday she went to school, but sat in a common area trying to calm herself and never made it to one class.  Today she really wanted to go, so it's not her avoiding school, but was just too scared to go.  We've tried to understand more of what she's scared of, and her response is that she's scared of the feeling, the dissociation.  So here are my questions:

1.  Has anyone experienced this dissociation feeling?  Typically dissociation is a result of a traumatic event and Meghan has not experienced anything like that.  We've delved deep into this to be sure.

2.  Any advice on how to push through the feeling of dissociation without it creating so much fear and anxiety?

3.  I have read of people that say longer term antibiotics are necessary to treat Pandas, 6 months to a year.  Our pediatrician has taken the approach of a 10 day regiment or 10 days followed by 5 days.  Please comment on your opinion of how long antibiotics are needed.

4.  Please add any other advice, comments, links etc.  We truly appreciate it and will be sure to share anything that we learn along the way.  Thank you.

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My Pans son had dissociation for years. Turned out he had Lyme disease. Treatment lasted 3 years. Symptoms slowly began to resolve (including the dilated pupils.)

He is much improved now but it was a very long road using multiple abx simultaneously for the 3 years.

You might want to seek out an LLMD for a rule in/out.

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  • 3 years later...

Other great resources to learn about PANS/PANDAS are: https://www.pandasppn.org/treatment/ and https://aspire.care/

Aspire has some great videos. I recommend this one: Lecturer: Nancy O’Hara, MD, MPH, FAAP Webinar: Demystifying PANS/PANDAS: A Functional Medicine Guide on Basal Ganglia Encephalitis

Also, make sure she is not, or has not been, exposed to mold. This has been the major problem for our daughter.

I think the general understanding on antibiotics is very long term. Our daughter was on for 5 years (Azithromycin), we went to every 3 days after she started doing well. We stopped because she had no more symptoms, that lasted about 3 years, but things came back pretty badly this year after mold exposure and her Covid booster. We are starting herbal antimicrobials this time around (oil of oregano, grapefruit seed extract, berberine). If they don't work, we'll go back to Azith.

Check vitamin D and B12 levels too.

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