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We charted our daughter on 11 variables each rated 0-9.

  • 1-3 there, but barely
  • 4-6 meant pronounced event but not constant
  • 7-9 meant huge impact, disabling or unable to function

These were:

  • separation anxiety
  • social anxiety
  • emotional lability
  • lashing out/hitting/biting
  • restrictive eating/skipping meals
  • contamination fears/hallucinations
  • demanding defiance
  • OCD measurement rituals
  • OCD repetitive questioning
  • large motion movement abnormality
  • illegible handwriting/fine motor tremor (includes dropping things/clumsiness)

An exacerbation would be a jump of +15 points (typically 2 or more items going from nothing to severe). I'm not sure our cut off is useful to anyone else, but it is what we used. The rise was over 3 days and lasted typically 4 weeks.

 

Buster

 

 

i hope you don't mind Buster, but i pasted this from another post b/c it is so fabulous, i can't believe it! for a year i've struggled with keeping a log of behaviors that has the right info but is easy to read and track. i have a couple spiral books and can't access trends etc. after you wrote this, i started a chart with our specific behaviors on the left and 7 columns for the days. it is so great! on the back of the page, i'm writing details of the larger events.

 

i started on a thurs so i've done it for 2 weeks. i can see the first week had a few days in the 20s, others in the single digits for a average of 11.85. the next week, has a couple teens and singles for an average 9.0.

 

this is so much easier with more accurate info. thank you!

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Anybody else think Buster should be running a PANDAS research study at some major university medical center?

 

You'd get my vote, Buster! Maybe you can apply for some of the Federal Stimulus money?... ;)

 

 

Agreed! The charting system above does give better at-a-glance data. The flow chart from a few days ago is great, also!

 

Thanks for all of your hard work, Buster!

 

Gat's mom.

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Here's the type of thing we got by using this type of system over time. And yes I spent way too much time on this....

 

symptoms.gif

 

 

Buster - all I have to say is "WOW!" I am in awe. Maybe you could write this into a computer program to sell to parents (of any behavior/disorder needing tracking) - they enter in the appropriate fields, rate the behaviors and the computer pops it into graph form. Lord knows I'd pay for that!! Can you imagine parents all over the country bringing these charts into their psychiatrists, therapists, physicians? And how much more accurate diagnosis and care people might get with docs getting this kind of info? I can envision docs handing a "buster" cd rom to their patients, telling them to "use this program and bring me the charts in one month - we'll see what's going on". The possibilities are endless...

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you really should find a way to market that!

Thanks, but it's just an Excel graph. It does present, however, the data in a way that makes it easy to see the exacerbations and trend lines.

 

 

okay - i'll drop it after this -- i think smart people tend to think the rest of us couldn't possibly be as dumb as we are - trust me, we are! :lol: i've been writing notes in a book for a year and just have a cumbersome collection of papers that don't really tell me anything.

thanks for the system!

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Buster did same graph for my dd for Dr. Latimer in October. I felt like maybe I was over doing it a bit but my dd's history goes back 6 years with long remissions. Her chart showed tic, ocd and chorea only. The one thing that stood out was that her ocd did not cycle with her tic severity. She had terrible ocd after multiple viruses and the tics seemed to be mostly after strep or exposure to strep. Charting her last six years showed that she had sudden onset within three days, reached her peak and then saw tooth recovery until the next virus or cold with again a blip up on the chart. (But never as high as her intial onset) Her most severe attcks took about 1.5 years to stop reacting to small colds and viruses. Both major attacks were strep related and 4 years apart. Both had chorea and balance issue, hyperactivity, and cognitive issues. After about 8 weeks then she would remain with small tics and some ocd during viruses or minor infection. Anyway my point to these charts is that the severe attacks take years to get over. And residual symptoms linger. I can remember my original neurologist seeing my dd and speculating that she had sc but caught her late in the process after much healing began. Later he tried to revoke his original diagnosis and change to TS. What is so obvious from these charts is that strep causes major exascerbations and residual systems and immune "stress" provokes additional symptoms. Thanks for sharing your chart, I realize its very personal.

 

(about 6 weeks post attack)

her
you really should find a way to market that!

Thanks, but it's just an Excel graph. It does present, however, the data in a way that makes it easy to see the exacerbations and trend lines.

[/quote

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This is extremely helpful to hear and to read your "history" review--so like ours with the reaction to strep in others, as well as behavioral reactions when around others who are sick. I really think we need to chart and analyze as well--

Thanks for the encouragement.

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  • 4 weeks later...

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