How do you track symptoms?

[Mehita]

I've been trying to find an online program or app that can help me track DS's symptoms, but I'm not finding much that does what I need it to do. I've tried GI Buddy, GI Tracker, MyGiTrack... they're all close, but not quite what we need. Out of frustration, I recently pulled out my handy dandy paper notebook again. How do you track your child's symptoms?

 

[my little penguin]

https://itunes.apple.com/us/app/myibd/id444728980?mt=8

DS uses this one no internet required-
tracks school activity etc....
appetite
meds etc...

they have an iPhone and android version.

 

[Johnnysmom]

I have a planner/ calendar and I write down his weight at least once a week and any time he is feeling ill I take notes. Nausea, headaches, etc. It's old school but I can look back on the entire year pretty quickly and sometimes patterns jump out at me. Apple makes an I phone app but it doesn't lay things out for me in the way I want them.

I will be interested to see what suggestions you get.

 

[CarolinAlaska]

I keep notes on a calendar. Which meds she is taking, which formulas and how much, abdominal pain, joint pain, stool number and consistency, new foods introduced, weights and height, etc. I like to have it all out in front of me when I go to the GI or the pediatrician. The GI doc liked it and asked for a copy. Lately we've had many days of normal symptoms with consistent meds, so I just use an arrow to the next day like little quotation marks.

 

[Sascot]

Hanging my head in shame here!!! Terrible at keeping notes - always start but never remember to update. I had made a special note on my iPad, but again it hasn't been done. I tend to rely on the nurses to keep everything up to date and then I just phone them if I need to know anything.

 

[DustyKat]

I haven't tracked for a while now but I use to write everything down. I use this as my base, it's in the wiki under diary inclusions, and pick which are needed...

PAIN

• Where is it located.
• What is it like - stabbing, ache, constant, intermittent, etc.
• Rate your pain on a scale of 1-10, with 10 being the worst pain imaginable.*(see comment).
• Was there anything you did that relieved the pain - medication, hot packs etc.
• Was there anything you tried that didn't work.
• Is there anything that the pain stops you from doing - standing up, walking, sitting, etc.

OTHER INTESTINAL SYMPTOMS

• Is your stomach noisier than usual.
• Are you producing gas.
• Is the gas offensive.

STOOLS

• How often do you go.
• How much are you producing each time.
• What does it look like.
• What consistency is it.
• Is it offensive smelling.
• Is there any blood or mucous.
• What colour is it.

DIET

• Are you following a diet or have you eliminated any foods from your intake.
• Are there any foods that make your symptoms worse.
• What is your appetite like.
• Does your appetite fluctuate.

WEIGHT

• Are you losing, maintaining or gaining weight.

OTHER SYMPTOMS

Do you have other symptoms that accompany painful episodes or do you suffer with other symptoms generally, such as:

• headaches
• eye problems
• joint aches
• vomiting
• fever
• sweats
• rashes
• mouth ulcers

MEDICATIONS

• What time did you take your prescription medications
• Did you take any over the counter medicines, even for something unrelated to your IBD
• Have you been taking any supplements
• What is your impression of the effectiveness of the medications you take. Are they making a difference.

I would document at least daily and as needed throughout the day/night. A new page for each day using the same headings. Much like progress notes.

I also use threads I have created on this forum as a way of tracking and also to record my kids medical history's. Ever seen Matt's thread? :lol: Far more reliable than my memory or penmanship! :biggrin:

My next project is to find a program or create something to record and graph all their blood results. :eek2:

Dusty. :Flower:

 

[Johnnysmom]

I knew you were organized Dusty but I had no idea!!! I think keeping track via thread is a great idea too.

Cincinnati Children's uses My Chart and it records and charts all of Johnny's blood work. Very helpful

 

[Devynnsmom]

I keep track of Devynn's symptoms, meds etc in a journal. I also have a small purse calendar that I use. I have been keeping everything on my comp as well in a word document, so that when we have dr appts I can just print it off and take it with us. MUCH easier than trying to read my writing! lol I use highlighters to keep track as well. pink is pain or symptoms, blue is meds and any med changes, and yellow is dr appts. Its very time consuming, but makes life easier in the long run.
Dusty, that is an awesome list! I just copied it to add to my list of questions for Devynn when she's not well. Thank you!

 

[DanceMom]

I was using a simple spiral bound notebook. Mostly charting symptoms and BMs. Haven't been documenting in a few weeks but will start up again at the first sign that she isn't feeling well. I do ask her every afternoon about her BMs so I can give her Miralax if I need to.

 

[araceli]

I do plain notebook, but I get a copy of all blood work, infusion orders, Hospital papers and Diagnosis made by emergency doctor. In one of them they put she was an Indian female. LOL If they had asked me I would told them what race she is. I only need the Doctors observations and her chart will be as same as his. But I don't think he will want to give a copy. LOL.

 

[ChampsMom]

I use one of the composition books - I actually have one for each child - sort of like a journal for them that I keep. (ahem... try to keep)...

Dusty... you rock!

 

[Tatahead]

I use a program on the IPad called Track 'n Share. It is great, you can set it up to track what ever you want how ever you want. There is even a place for notes if you decide that you are going to track something by using a simple yes/no answer. You can graph the results for how ever long you would like. All of the results with or without the notes can be printed, emailed or faxed whenever to whom ever you like.

It is great!

 

[Mehita]

Thanks, Tatahead! I just looked it up and it looks promising.