PANS/PANDAS Advice

I'm not sure how much experience anyone here has with this, but my 7 year old daughter was born with congenital Lyme and co. We've been treating her with Klinghardt's protocol for a couple of years with little to no improvement.

Her main issues are extreme rage and behavioral issues. Everything sets her off, she tantrums on and off all day long, is physical and cannot control her behavior. Discipline does absolutely nothing (we thought it was behavioral at first, years ago). She even tells me often she feels mad for no reason....like she'll be reading a book on the sofa and then randomly tell me she feel angry. She is physically and emotionally exhausting, and requires a tremendous amount of energy managing her behavior and dealing with her outbursts.

We initially thought Bartonella, so we treated that for awhile, but saw no improvement. Then we tested her for yeast and she was positive, so we treated her for that. She became a completely different child and we were SO excited! But it only lasted a few weeks. Then she tested for parasites through ART, so we treated for that, and she again, became a completely different child. But again, it only lasted a few weeks.

It has recently been suggested to me that she might have PANS and maybe even heavy inflammation from mold, which is why her treatments aren't "sticking". I've heard of PANS, but never thought she met the criteria, because she's never had strep, there was no sudden change in behavior (that I've noticed...I guess it could have happened when she was a toddler), she doesn't restrict food - in fact she's ALWAYS hungry and asking about food, she doesn't have OCD. She DOES have emotional lability, irritability / aggression / severely oppositional behavior. I don't know really if she has sensory or motor abnormalities...she is VERY picky about clothes and shoes and everything has to be a certain way or else she can't wear it...she prefers her clothing and shoes to be very tight. As an infant, she had proprioception abnormalities...she crawled before she could sit up and was just kind of like a "lump" for a long time, but I don't know if that would qualify as motor abnormality. She doesn't have any motor abnormalities currently.

Anyway, the person who suggested I lookin to PANS said that the OCD factor could be the rigidity in her behavior (meaning, I think, that she needs things a certain way or else she has these major outbursts). I also wonder if her constantly asking about food and saying she's hungry would qualify as an "obsession". I've used that term to describe her focus on it, but it was more as a joke...but maybe it wasn't?

I know I'm rambling and not getting to the point, but I'm wondering if anyone with experience with PANS thinks it's it's a good idea to pursue this. I'm hesitant, because it entails finding new doctors, and spending more money we don't have. But, of course, if it really COULD be part of the problem, I would do it without question. I'm just looking for advice from any PANS / PANDAS parents.

Dana Parish and Dr Phillips recently did a video on PANS/PANDAS. I'm sharing it in case it can be of any help: /www.facebook.com/lymebook/videos/811141069091274/

I know this isn't what you were asking, but I was struck by what you said about her response to treating yeast and parasites. Those things can be hard to eradicate. Did she revert back while still treating those, or after treatment was stopped?

Jasperilla said...
Thank you all for responding - I really appreciate it!

Girlie - I thought I remembered that rowingmom dealt with this, and I was hoping she'd be one of the responders.


It's like something is getting in the way of these things helping. Or maybe she just needs different treatment for these issues - a more multi-faceted approach. But her parasite treatment is several herbs, not just one.

She doesn't post much anymore. The last time she was on was in March.
unfortunately her email isn't enabled either.

Maybe if you find one of her threads...and post on it, she may have notifications set up and respond.

Aerose91 said...
Have any of your doctors done the Cunningham Panel on her? That's the test for PANS/PANDAS. I had it done

Aerose,

I'd never heard of this. I just looked it up. Were any of your results abnormal? If so, is there any treatment protocol to correct abnormalities?

Aerose91 said...
The test measures antibodies against 5 dopamine receptors which i guess get targeted during PANS/PANDAS. I would post my results here but you can't post pictures.

I had 2 tests that were borderline high. My doc said he treats any infections first and oftentimes this clears it up. If it doesn't, he uses IVIG. I unfortunately had to stop seeing him due to losing my insurance

Thanks! So I guess,that works the same as Lyme. Figure out which infections you have and treat them all.

I believe my granddaughter's problem stems from when she was younger having 7 strep infections over 2 years

WalkingbyFaith said...

Aerose91 said...
The test measures antibodies against 5 dopamine receptors which i guess get targeted during PANS/PANDAS. I would post my results here but you can't post pictures.

I had 2 tests that were borderline high. My doc said he treats any infections first and oftentimes this clears it up. If it doesn't, he uses IVIG. I unfortunately had to stop seeing him due to losing my insurance

Thanks! So I guess,that works the same as Lyme. Figure out which infections you have and treat them all.

Yes. The first line is to trest the infections and if PANDAS symptoms remain, then address that. My understanding is that most people clear up after the infections are treated

Jasperilla said...
Aerose - that's very heartening to hear, thank you! I wonder, though, why doesn't her treatment seem to be working? There's been no improvement in several years...maybe she's even slid backwards. I guess maybe get her / the house evaluated for mold would be a good next step, because I think that can definitely impede progress.

What was her treatment for bartonella?

There are many factors it could be- mold is one. I'm not farmiliar with those treatments for bartonella though, has she seen an ILADS doc and thought about a bart antibiotic protocol?

Last Friday night on 20/20 the entire episode was about PANDAS. If you google “ABC 20/20 Pandas”, you will find the episode. I believe the children featured all had strep before their PANDAS symptoms but Lyme can induce PANDAS as well.