Flaredown Symptom Tracker
PRAI is asking families to track PANS/PANDAS symptoms to find out which treatments work and which don't. Without data, it's just our opinion.
If we want to know if antibiotics, diet modification, supplements/herbal remedies, IVIG work, we need to track it. Don't you want to know if anti-inflammatory diets work? Can Homotaurine actually be an effective treatment for PANS? Does the full moon really cause flares in our kids? Why is IVIG a miracle drug for some and ineffective for others? Help us answer these important questions.
The Flaredown app is easy to use. And the data can be uploaded anonymously in just a few months for analysis.
Here's how it works
1. Go to www.FlareDown.com
2. Enter YOUR birthdate. Not your child's.
3. And on your home computer, enter the following symptoms.
Note: It's REALLY important you enter ALL the symptoms your child experiences from the list below the first time you register. Otherwise, you'll have to enter symptoms manually every day which will take a lot of unnecessary time. If you feel confident your child doesn't have that symptom and won't, simply don't add it.
To help us analyze the data effectively, please use the following symptoms exactly as written.
Standing on head
Bumps on skin
Dark Circles Under Eyes
Tactile sensory sensitivity
Auditory sensory sensitivity
Visual sensory sensitivity
Smell sensory sensitivity
Not Waking easily
4. Click on the CIRCLE FD (can you pull this image, Patrick?) in the top left hand of your screen and enter ZIP CODE under weather. This is an important step for tracking how the weather may be effecting our children's symptoms.
5. Feel free to write anything you'd like to note in the JOURNAL section on that page. For example: "Sibling had strep" or "stress at school"
6. Enter what treatments you currently use or plan to use including dosage. We'd love for you to also add supplements, alternative therapies and diet modification to best track what's working and what's not. This will be a great way to stop the guessing game for your own family as well.
7. For now, just keeping logging this data until the registry is complete, then we'll share exact instructions on how to upload the Flaredown data you've generated over the last few months to the registry so we can get to work on the analysis.
Have Questions? Email us! firstname.lastname@example.org so we can help!
Thank you for helping us find answers for pediatric neuroimmune disorders!