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

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Buster

Poll: What did symptoms look like

Symptoms  

38 members have voted

  1. 1. See first Post below and then vote. Did it look like:

    • relapsing/remitting (like graph 1)
      6
    • exacerbation but change in baseline (graph 2)
      18
    • more chronic with good days/bad days
      2
    • none of the above
      5


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Hi Folks,

 

If you think of your child's symptoms did they look more like this:

Graph 1

Slide1.JPG

 

or like Graph 2

Slide2.JPG

 

or something else?

 

Buster

Edited by Buster

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Buster,

 

Is this supposed to represent time prior to PANDAS diagnosis and treatment? Or does it matter?

 

Do you want responses from those of us who have since discovered infections other than strep playing a role?

 

 

Thanks,

 

Kara

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Hi Buster!!

 

I voted for the relapsing and remitting one time- but I have two pandas girls that would fit into that category so far (although we are still working on getting to baseline after most recent exacerbation from strep in April).

 

Honestly, the way they got to baseline previously was PEX (we still haven't tried IVIG).

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Neither graph entirely explains our experience, so I voted none of the above. Like Kara, we ended up with something beyond strep that was causing repeated exacerbations. So we looked like Graph B...until we properly treated the issues beyond strep..now you could take the tail of graph A, put it at the end of Graph B and you'd have our picture. Our post-infection rise in baseline lasted 2 yrs but is now dropping back down. It's been 3 yrs in total, but we are finally finally getting to a place where the original baseline is in sight.

 

The start of our life with PANS agrees with the left part of either graph. Sudden, acute symptoms, with the worst of things packed into the initial episode.

 

I'm guessing that how someone's right hand portion of the chart flushes out is highly dependent on whether they received the correct treatment for the correct instigating antigen and how much time after the initial episode passed before the root cause was uncovered and treated.

 

My impression is that Graph A shows PANS (regardless of antigen) properly diagnosed and treated in a timely manner. Graph B shows PANS and the long winding road many travel as a result of incorrect or incomplete diagnoses and treatment. That's my experience anyway.

 

Laura

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We are (I hope) continuing to come out of our second major exacerbation, during which she was psychotic this past winter. While she has made major improvements over the last several months, she's clearly not at what I would call "baseline" before PANDAS was a factor.

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I wish I could vote twice (2 kids with PANDAS).

one fit graph 2 exactly. exacerbations were very severe, and eventually, did not really go back even to the "elevated baseline". it became a chronic exacerbates state- if that makes any sense. That is what I voted for.

 

the second had no prior hint of anything amiss. After inital exacerbation, no complete remission, each exacerbation got worse. So, like graph 2- but no prior issue and each exacerbation would get higher and higher.

Edited by PowPow

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i voted none of the above. . . both children have other infections we uncovered in additional to strep and elevated titers.

 

ds7, possible prior exacerbation 3 mths prior for a few days time frame. sudden onset, then 100% remission with abx just like graph 1, but when off came off abx, baseline changes like graph 2, even with return to abx.

 

ds9, onset more slowly, likely during 3-4 mths timeframe, severity likely only 1/2 chart, back to normal in about 6 mth time frame. no real potential prior exacerbation but some behavioral changes at age 6, 6-8 mths prior to brother's diagnosis; 2 years prior to his own; 2 years after treated strep infection, but of course, no follow-up to ensure was gone.

Edited by smartyjones

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I answered #2, but I am not really sure.

Our IVIG's have not 'stuck', however, they did take us out of the darkest days ever- unfunctional, literally, spells where I wasn't sure whether to call an ambulance or not.

1st IVIG seemed a big herx at first, maybe gradual improvement after that, then strep came around her class (she did not 'get' it) but it looked like a ramp back up, I did a 2nd IVIG 5-6 weeks after the 1st, and the 2nd IVIG was glorius for a little while, best we've ever seen, but it gradually diminished, we have issues. Still, not as dark as before. And I also feel like we had been chronic wax and wane for a long time, not knowing what it was, never had high titers, nor a confirmed strep infection in 4 years.

So now I'm looking into lyme. Me, who stated, 'no way do we have lyme, no tick bites, she's been sheltered, never owned a pet.'

*sigh*

It's really hard to figure it all out. Part of our deal just may be the other issues, as well, we have mercury, high viruses, and gut yeast issues.

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I voted none of the above because it doesn't seem that either graph quite fits. We had no potential prior exacerbation. We had pretty much what PowPow described: "....no prior hint of anything amiss. After inital exacerbation, no complete remission.....So, like graph 2- but no prior issue..." We have had baseline changes with exacerbations.

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Most like 2 (i voted, but it said I already voted? not sure if I accidentally clicked the wrong one somehow) but we are also dealing with lyme and co-infection.

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Not tied to strep so yes, please respond.

 

Buster,

 

Is this supposed to represent time prior to PANDAS diagnosis and treatment? Or does it matter?

 

Do you want responses from those of us who have since discovered infections other than strep playing a role?

 

 

Thanks,

 

Kara

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Hi Buster--

 

The way that I read both graphs is that you are showing a "presumed" natural drop in symptoms (with no treatment at all it appears.) Am I reading the graphs correctly???

 

What do the t1, t2, t3 represent?

 

Neither of our girls have shown this type of improvement on their own--I with they had! :)

 

We have only seen a drop in symptoms after treatment of one type or another--and THEN we could say we saw a saw-tooth recover multiple times (ABX, Steroids, IVIG...)

I like to think that baseline has been low again, but I am not so sure yet--

Hope that helps--

Edited by T.Mom

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Hi T.mom,

 

Actually I wasn't dealing with the treatment in this version -- so if you used antibiotics or steroids or ... all of those are fine. I was trying to get a sense of the shape of the curve.

 

Probably what I need to do is have people try to describe their graph pre-treatment and post-treatment and pre-re-treatment (if any) and post-re-treatment (if any).

 

The t1, t2, ... is for something else where these are time indexes that I was going to use to ask about how long it was from t1 to t2 and from t2 to t3 etc.

 

Buster

 

 

Hi Buster--

 

The way that I read both graphs is that you are showing a "presumed" natural drop in symptoms (with no treatment at all it appears.) Am I reading the graphs correctly???

 

What do the t1, t2, t3 represent?

 

Neither of our girls have shown this type of improvement on their own--I with they had! :)

 

We have only seen a drop in symptoms after treatment of one type or another--and THEN we could say we saw a saw-tooth recover multiple times (ABX, Steroids, IVIG...)

I like to think that baseline has been low again, but I am not so sure yet--

Hope that helps--

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