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Hi Priscilla,

 

I think the post you are referring to is : http://www.latitudes.org/forums/index.php?showtopic=6685

 

The graph is no longer active (too much time since that post) but the paramaters are still good.

 

What I found most helpful was to have a wall calendar or daily log where you wrote down anything really odd that happened on that day. And then plotted the symptoms on a weekly basis (daily was, well, just too much data).

 

You have to use some judgement, but it works pretty well. What you want to catch are REALLY bad times and really good times and get a sense for whether certain symptoms went into remission or were pretty constant. What we found was that the sum of symptoms was more important than looking at any one symptoms. When things were bad, it was really bad. When things were good, all symptoms (but 2) were good.

 

Buster

 

 

I read a post that said Buster has a checkist to help track daily progress/ regression. Can anyone direct me to it? and thanks for making that Buster.

Edited by Buster
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Pricilla,

 

I've taken Buster's checklist (customized for my son's symptoms since he's younger) and created an excel worksheet that automatically calculates your daily "score", weekly and monthly averages and graphs them. Buster's right (of course he is - he created it! :) )it can get cumbersome so I usually fill out the checklist daily but only enter the data once a week a so - but fill out the.

 

It has helped us to see steady progress to see the weekly averages to see how you're "trending" - since this whole thing can be very sawtooth. We've seen a stready drop in our weekly scores by a couple of points almost every week since we started treatment and tracking. But the daily graphs have helped us track when he's been exposed (he always spiked) and the individual symptom charts have helped us pinpoint a single behavior (biting) that has ALWAYS shown up when he's exposed to strep, and is completely gone when he's not. Our Dr. now even realizes that this is his first physical symptom of strep and wants to see him when ever we get a high "biting score" to get tested for strep and adjust abx as needed.

 

We've even had the day care teachers fill it out every day (and plan to make this part of our IEP/504 when he starts school)since most of his OCD and axieties happen at school.

 

It's been a GODSEND!! I'm more than happy to send you my file and help you customize it for your child if you'd like. Just PM me.

 

 

And to Buster - Thank you so much for this! I've taken it and run with it and now have all the printouts in my "crazy mom binder". But this data - complete with call outs to the spikes in symptoms at time of exposure have helped me sooooo much. Since it's so clear graphically what's going on with my son, I've had very little opposition to PANDAS and what we have to do from our day care, other doctors, and even the school district as he's starting his screenings for Pre-K. You're amazing for doing all that you do! Thanks

 

Sandra

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  • 2 years later...

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