Symptom Documentation

[Alex's mumma]

Hello there... My 15yo daughter is going to see a Pediatric Cardiologist that does some specialty work with Syncope/ Dysautonaumia in August. I'm convinced that she certainly has something else in addition to POTS going on with her body and wanted to be able to accurately record what is happening with her on a day by day basis in way format that is reasonable easy to use and read... Has anyone created a form or document that you have used to do this kind of thing that I would be willing to share?

I can create one, but no need to recreate the wheel if someone has already built something that is been a good tool for them to use for this type of thing!

[Guest Alex]

Hi,

I can share with you the symptoms I keep track of, but I don't have anything fancy for this - just a plain table where I record my "scores" on a daily basis. The scores are on a 0-10 scale, 0 being no symptom, 10 being worst case scenario.

Symptoms:

headaches, blurred vision, lightheadedness, palpitations, shortness of breath, drowsiness, brain fog, chest pain

If I were you I'd add/remove from the list according to the symptoms your daughter is complaining about, as we're all different.

I also keep track of my BP and HR, so I do readings in the AM and PM (about 12 hrs apart) while laying down and standing, as well as whenever I feel a spike or a drop in either BP or HR.

Hope this helps.

Alex

[peregrine]

I have a chart that keeps the following info:

Month/year

Meds (some blanks here, I write down what I take every day)

Fluid intake (high/low, or oz)

Salt intake (grams)

Exercise (what and how much)

Pain (0-10, what aids I use (cane/braces))

Appointments

Nausea (0-3)

Sweating (0-3)

Excessive daytime sleepiness/fatigue (0-3)

Cognitive impairment (0-3)

Eyes (pupillary dysfunction) (0-3)

Presyncope (0-3)

Other symptoms

and then a set of bubbles that lets me track spaciness as 0-3.

I keep track of sleep (start, finish, duration, quality, naps) on my bipolar chart.

I only have it as a pdf, not sure how to upload it here - maybe PM me and I can send you a link? I don't have a way to get it to you anonymously, and I'm trying to keep this online identity separate from my real one :^)

[Katybug]

Alex's Mumma,

I have a couple of forms I use, one to give my doc's at each follow up appt. that shows changes since the last visit, and, I just made a document that I can maintain for new patient visits. The new patient doc is an adaptation from a new patient questionairre I just filled out for a geneticist that was the most thorough form I have ever seen. I am happy to share them with you but have no idea how to copy the documents to this post. So, if you want to send me your email address in a PM so I can email them to you directly, or, if anyone can tell me how to link the documents to a post on this thread, I'm happy to do either option.

[Alaska]

I don't have a form, but a symptom list broken down to body parts. For example, like "brain", "eye's", "GI", "cognitive" , "heart" and so on. I then put what my most recent symptoms have been on the top. I list my current meds. I put what test has tested positive for (I don't list the ones with negative). Family medical history.

I once had the form too wordy, as stated by the Doctor. He was right, as that would overwhelm anyone looking at it. So I changed it to have only short statements under the symptoms like "dizzy when sitting still". I update the symptoms and bring it to any new Doc I go to. It helps me keep things in order also.

[issie]

There is a dysautonomia chart that you can fill out daily and it has symptoms and you can add symptoms that you have personally to it ----it's at MedHelp.com. You don't have to put your tracker on-line - but can make it private and it will graph things for you.

Issie

[NMPotsie]

I use the chart issie is referring to, and add journal entries when something particularly noteworthy happens. I also use their bp tracker, which will pull your cardio symptoms from the dysauto tracker automatically. It's easy to print and carry to doctor's appointments.