template for tracking symptoms and response to treatment

[afsml]

Hello. I am new to this forum. My son is starting on abx treatment this week for Pandas. It was recommended that I log his response. I was wondering if there was a standard or verified tool for tracking symptoms. I am currently using a simple excel sheet and plan to use the Yale OCD scale. Any suggestions for logging/tracking symptoms? Thanks.

[rowingmom]

If you PM me with your e-mail address, I can give you a copy of our daughter's Excel chart to use as a template.

[BeeRae22]

If the chart doesn't work for you, what I did was try to keep it simple. I got a calendar, and each day I would make an arrow for morning and night (arrow up for good, and down for bad mornings and nights) so I had a visual of "ups and downs". I also marked any changes in treatment/meds so I could see the ups and downs after the change.

 

At one point I was trying to make notes each day about behaviors, etc. but it became convoluted to read, (and sometimes I didn't have time or was just too tired!) so now I just jot down anything significant, like a huge rage episode, or I'd just jot down ODD for odd behaviors that day...... I'd also jot down anything else significant, like a trip to the dentist, or doctor, anxiety provoking events like start of school, or a new teacher, death of a pet, etc.

 

It helps to have the visual to see if there's any pattern. I'm sure other people on this board have a more sophisticated way of charting this stuff, but keeping it simple worked best for me

[airial95]

We used an excel spreadsheet and visually graphed progress. It helped immensely to see how quickly patterns emerged based on different treatments, etc...

 

We went even more specific to our chile than the Yale OCD Scale, mainly because when we started our log our son was still a toddler (2 years old - he's almost 7 now) and the typical OCD scales were difficult to apply at that age. We listed every symptom/behavior we wanted to keep track of, and rated them daily on a scale of 0-9. 0-3: Normal age appropriate behavior (because many symptoms can be seen in a normal child as well, just not quite to the scale PANDAS parents see them) 4-6: A step up from normal age appropriate behavior, but no SO disruptive that they didn't recover; 7-9: Completely dysfunctional.

 

We used an numerical scale because it helped us keep the emotion/stress out of the log. For example, after a long day where everything goes wrong at work, a 15 minute tantrum at the end of the day over teeth brushing rituals seems terrible and worse than it actually may be. But when I had to actually grade it on a scale of 0-9, I realized that what totally felt like a 9 to me at the time, was probably more like a 6 or 7 because tantrums for the same thing earlier in the week lasted well over 90 minutes - so objectively speaking, 30 minutes was actually an improvement.

 

Then we would total the scores for the day and graph them. We had a "goal" score range that we were looking to hit with each treatment/therapy, etc...

 

Using this method, we were able to identify several patterns that were huge for us, for example:

- when my son is exposed to strep (but doesn't test + himself) we would see about a 20-30 point spike in behaviors for 3-5 days and then steady improvement for another week or so back to what it was prior to the exposure. (This helped us time when to see the doctor for strep checks - if things were still getting worse by day 3-4, we knew it was likely more than just an exposure).

- when my son wets the bed, he is + for strep. 100% of the time. Regardless of what/how much antibiotics he is on at the time. This has been HUGE for us in managing subsequent flares. If he wets the bed/has a potty accident - we are in the Dr. THAT DAY. No waiting to see if things get worse. This early intervention has helped us keep flares from spiraling out of control.

- napping can help improve his "daily scores" during flares by 10-15%. Continuing naps outside of flares has helped keep exposures to a 1-2 day spike with typically only 1 "major" meltdown.

 

If you're interested in our spreadsheet - PM me your email address and I'll be happy to share.

 

I'll also point out that our spreadsheets (or "crazy mom binder" as my husband called it), helped us convince more than one doctor who was on the fence about it being PANDAS that it couldn't be anything else. The data didn't lie!!

Edited September 2, 2014 by airial95