I've been where you are and wish you, your DD and your family the best. I would just let you know that one of the most frustrating things about Pandas/Pans is that you will probably not get "the answer" you're looking for. What I mean by that, is that most of the time, there isn't anyone who's going to be able to give you a definitive answer as to what your daughter "has". Push on, do LOTS of research, read everything! Ask questions, question the answers you get, and try to stay positive. I have brought my daughter to countless professionals, and it wasn't until just recently, 7 months into treatment with a well respected Pans/Lyme doctor, that I feel like we're on the right path... You know your child best, keep an open mind, but also always remember that!
Best of luck-- this board is great! Full of knowledgable parents that have been through so much.
LLM's response was pretty comprehensive, the only thing I will add is to keep a detailed log/journal daily of your child's symptoms, any treatments, even what they ate that day if you start to suspect food issues. It seems like you're already trying to go back and connect the dots, but if you keep detailed records going forward, it will probably help you A LOT for your upcoming appointments.
We used an excel spreadsheet and scoring system that another parent here suggested (0-3 = typical age appropriate, 4-6 = difficult/challenging, 7-9 = WTF just happened to my kid???) We listed on the spreadsheet each of the symptoms (specific to each child - we have 2 with PANDAS) and scored them each day. We found using a numerical scale kept us objective vs. just taking notes (we found depending on how emotionally drained, tired, stressed we were impacted how we verbally described the days events - but quantifying it helped keep the emotion out of it - but we also did keep general notes like "didn't nap today, missed morning vitamin, 2 kids out from class sick" so we could also see if other things were affecting symptoms.
We were then able to use the log to come up with daily "scores" and chart trends in symptoms, etc..
An example of things we learned specific to our son using the logs:
- At 6 yo he still needs to nap every day because we found naps had a HUGE impact on symptom severity when we cut them out.
- Wetting the bed = + throat culture EVERY TIME for our son and often precedes other symptoms by a day or two (both of my kids also are asymptomatic to strep, no sore throats, fever, etc...) Now when he wets the bed or has a potty accident, we don't wait for other symptoms to turn up before heading for a strep check.
- He will flare from just being exposed to someone with strep, but the symptoms will spike for about 3-5 days, and then subside quickly with no lingering issues after about 2 weeks.
I think that our logs were probably our most valuable weapon in fighting this craziness, and keeping our family functional.
