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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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mom2gsd

Has anyone heard of PANDAS causing seizures/Epilepsy?

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My son is now 20yrs old, I was once a member of this group years ago. He was 11 when the PANDAS symptoms began in '08, he has autism, received 1 1/2yr of IVIG, with little improvement, then was later DX with Lyme. Long course of antibiotics, plus Dr Goldberg's NIDS protocol with antivirals, after a year he began to make improvements...then had 2 good years....then rages and all of the PANDAS symptoms returned along with generalized seizures that began July 2015 and has continued daily, anywhere from 1-6 times, Tonic Clonic, Clonic, Myoclonic or Gelastic. He's on seizure meds as well as CBD oil, which has not stopped them. It's been a nightmare and he has no quality of life! At the present time our Neurologist is not treating for PANDAS, only epilepsy...but I'm concerned he is missing the key element. Does anyone know of a situation like ours?

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Sorry to welcome you back. I don't know of seizures being Pandas/Pans specifically, but I do know of a few moms on a FB support group who deal with seizures as a co-morbid issue. My DD11 suffered mycoclonic spasms for upward of 10 hrs/day last spring as a result of MARCONS (antibiotic-resistant staph infection in sinuses) and exposure to mold in her classroom. They resolved over 2 months treatment with a nebulized formula of an antibiotic (chosen based on sensitivity testing of a nasal culture - in her case, clindamycin) plus itraconozole (anti-fungal) plus edta plus mupricin.

 

One other option is to investigate vagal transcutaneous electronic nerve stimulation (v-tens) - using a tens device attached to the tragus past of the outer ear to stimulate the vagus nerve. Tens stimulation is sometimes used for epilepsy but is surgically attached - a $20K procedure. Several researchers have done small studies using a small tens device (available online for $50) attaching it to the outer ear where there's a small "tributary" offshoot of the vagus nerve to treat fibromyalgia (which for some, may be an infection of the vagus nerve).

 

It's also possible the Lyme was never fully eradicated. Neuro-Lyme infecting the central nervous system can cause seizures. If you're able, you may want to consult with an LLMD (lyme-literate MD) who'd be willing to investigate infection-based triggers. Many LLMDs are now familiar with Pandas/Pans.

 

I'm sorry you're back in a bad place. I know how scary it can be and how alone it can make you feel.

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@mom2gsd I have a friend whose son is experiencing frequent seizures, and suspects they are related to PANDAS or something similar. He is currently in the hospital, undergoing a spinal tap. Did you get to the root cause? Do you have any advice for her? 

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We had seizure-like symptoms with our PANS child, but they weren't the kind associated with epilepsy (because he was aware, could look right at us, just couldn't respond).  Some also have what they call "absence seizures".

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My son has absence seizures during flares. He just sort of "disappears" for 30 seconds or a minute, many times a day. During those "absences" he can't respond. Sometimes when he "returns" he will shake his head as if to clear it.

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