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Hey I’m new here. Have a 14 year old who is waiting on an evaluation for PANS/PANDAS. Back in august we had some type of virus. Most of us just had diarrhea and nasal congestion for a day or two. She ended up wiped out (slept 14 hours a days for a few days) slight fever, fatigue, vomiting, diarrhea, swollen glands and nasal congestion. The stomach symptoms lasted over 3 weeks and got better after a bland diet. The first week she was sick she started having pretty bad anxiety, intrusive thoughts, and kept feeling the need to say everything under the sun (in an ocd type of way) due to fear (which she know is irrational) that if she forgets to tell us something (these are about the intrusive thoughts, things she does in the moment, things that could have happened 8 years ago even things that don’t make sense to be concerned about) that we’ll be upset at her, also some emotional outbursts, sleep disturbances and feeling extremely tried. 
Primary doctor ran some blood work- all which came back negative, just wondering if there is anything that could be off that they didn’t check. Only things slightly off was potassium (slightly low) and bilirubin (slightly high), which is probably from stomach issues for 3 weeks. Her D has always been low (15-20ish) and she takes supplements for it . Primary doctor seems to be thinking after all of these being negative that she probably isn’t dealing with pans/pandas but is referring out to a specialist to rule it out. To me it just seems so in line with pans/pandas because of the sudden onset of the psychological symptoms the same time frame as being sick. This also has me questioning some other time frames of her life specifically when she was 8 (hand washing and a fear of accidentally lying - which resolved after a few months) and 11 (some ocd tendencies and an onset of sensory issues - ocd tendencies were around for a few months, sensory issues have continued to be a problem, emotional outbursts) neither was any where close to as bad as how she currently is. 
thank you and sorry if this is a repeat question. 

tests given:

cbc

metabolic panel

Celiacs panel

Lymes disease immunoblot

Epstein Barr antibody panel

Salmonella/ E. Coli/shiga toxin

Ova and parasite smear

ANTI-STREPTOLYSIN O  

c reactive protein

t4

tsh
 

 

Edited by vg1119
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On 10/6/2021 at 8:16 PM, vg1119 said:

Hey I’m new here. Have a 14 year old who is waiting on an evaluation for PANS/PANDAS. Back in august we had some type of virus. Most of us just had diarrhea and nasal congestion for a day or two. She ended up wiped out (slept 14 hours a days for a few days) slight fever, fatigue, vomiting, diarrhea, swollen glands and nasal congestion. The stomach symptoms lasted over 3 weeks and got better after a bland diet. The first week she was sick she started having pretty bad anxiety, intrusive thoughts, and kept feeling the need to say everything under the sun (in an ocd type of way) due to fear (which she know is irrational) that if she forgets to tell us something (these are about the intrusive thoughts, things she does in the moment, things that could have happened 8 years ago even things that don’t make sense to be concerned about) that we’ll be upset at her, also some emotional outbursts, sleep disturbances and feeling extremely tried. 
Primary doctor ran some blood work- all which came back negative, just wondering if there is anything that could be off that they didn’t check. Only things slightly off was potassium (slightly low) and bilirubin (slightly high), which is probably from stomach issues for 3 weeks. Her D has always been low (15-20ish) and she takes supplements for it . Primary doctor seems to be thinking after all of these being negative that she probably isn’t dealing with pans/pandas but is referring out to a specialist to rule it out. To me it just seems so in line with pans/pandas because of the sudden onset of the psychological symptoms the same time frame as being sick. This also has me questioning some other time frames of her life specifically when she was 8 (hand washing and a fear of accidentally lying - which resolved after a few months) and 11 (some ocd tendencies and an onset of sensory issues - ocd tendencies were around for a few months, sensory issues have continued to be a problem, emotional outbursts) neither was any where close to as bad as how she currently is. 
thank you and sorry if this is a repeat question. 

tests given:

cbc

metabolic panel

Celiacs panel

Lymes disease immunoblot

Epstein Barr antibody panel

Salmonella/ E. Coli/shiga toxin

Ova and parasite smear

ANTI-STREPTOLYSIN O  

c reactive protein

t4

tsh
 

 

 I've heard of several other PANS patients (including me) have small flares that no one recognized in childhood, much like how you mentioned your daughter's behavior at 6 and 8. That, and the onset after illness, are the primary things that makes me very suspicious your daughter does indeed have PANS. Most pediatrician/family doctors are not very familiar with PANS, its many triggers, and the complex way strep hides in the body, and will take a negative anti-streptolysin O test as a sign of "no strep, no PANS". ASO can be a helpful test in diagnosing PANS, but the only test that is considered conclusive for diagnostics in most circles is the Cunningham Panel. It is well over $900. Most PANS doctors diagnose based on symptoms alone and proof of a recent illness that triggered it. For some people that might be a throat swab positive for strep, for you it might be the history of the stomach bug going through the family. Does the specialist treat PANS/PANDAS/immune-mediated encephalitis? I would suggest finding someone who either treats immune-mediated encephalitis, or lists PANS specifically as a condition they treat. They would be able to tell you what tests they suggest running, what they are looking for, and then target treatments based on those tests much better than just a neurologist who probably has a surface-level knowledge of the disorder. 

Was the Lyme test a Western blot test? It's received a somewhat lukewarm reception in PANDAS circles, on the grounds that it's not very reliable, especially for someone whose immune system is possibly already compromised. Igenex Lyme testing is considered more reliable by PANDAS Network in their diagnostic tests section.

 About the strep test: it's a possibility that your daughter maybe had strep during one of the first onsets, and the stomach bug triggered the mechanism again. Here's a really good article from PANDAS Network that explains the strep testing, and how it isn't always accurate (and how strep can show up in places besides the throat): https://pandasnetwork.org/understanding-pandas/diagnosis/ (There's also a good list of bloodwork for other PANS triggers and overall blood testing that is sometimes suggested by doctors.) I would hesitate to rule that out based on just one strep test alone. 

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  • 2 weeks later...

Thanks for all of your input! Very helpful 

I found and decided to take her to an immunologist instead who diagnoses and treats pans and pandas and immune mediated encephalitis . Hoping to get more clarity then (January).

 

As for the lymes test I’m not sure which one was done. Results on quest just say “lymes blot” and list off results for different numbers. Unsure how to tell. 

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On 10/20/2021 at 11:42 AM, vg1119 said:

Thanks for all of your input! Very helpful 

I found and decided to take her to an immunologist instead who diagnoses and treats pans and pandas and immune mediated encephalitis . Hoping to get more clarity then (January).

 

As for the lymes test I’m not sure which one was done. Results on quest just say “lymes blot” and list off results for different numbers. Unsure how to tell. 

Certainly! Glad I could help.

I looked around online, and as far as I can tell, any kind of Lyme blot test is considered the Western blot. I guess different labs just refer to it differently? Here's a good link that explains the different tests, and which bands on the Western blot carry more significance. https://www.lymedisease.org/lyme-disease-test/

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