Friday, March 14, 2014

Inside the American Medical System: Making a Medical Notebook IV (Part 8 in the Series)

In my previous three posts (see links at bottom of page), I shared how we created a medical notebook to keep our notes, visits, and caregiver information reasonably organized.

Today I want to share two additional things that really helped us with all our appointments: a symptom list and a question list.

When visiting doctors, we always had a hard time (1) making sure that the doctor got all of the pertinent information (thus the symptom list), and (2) getting the information that we needed (thus the question list).

The Symptom List

When we visited each doctor, I immediately handed the nurse a "symptom sheet." This was a bullet-point summary of every symptom, change in health status, etc., for the child in question, and it was an awesome way to communicate effectively, clearly, and quickly with doctors. Otherwise, a lot of details get lost in transfer - and doctors are so busy that they are hard to pin down and actually talk to. This is a great way to accomplish clear communication with a minimum of lost time or lost information.

Because our time in the medical system was spent trying to track down a mystery condition, my symptom list includes all sorts of symptoms - developmental, physiological, etc. However, it would vary greatly depending on the medical circumstances. In a different situation, for example, a symptom/informational list might list other information, briefly stated, such as:
  • Surgery and/or procedure history
    • Example: "Had a shunt put in on 2/1/11; recovery has been uncomplicated."
  • Quick summaries of visits with other specialists
    • Example: "Saw Dr. Smith in neurology on 2/12/13; he recommends a second brain MRI based on symptoms."
  • Current prescription list
    • Example: "Currently taking 15 mg of Drug A three times per day."
It's very easy to individualize a symptom list for an individual situation, and for our family, it was an essential part of communication with our doctors. 

I should also say that, without exception, doctors loved this. When we handed them detailed symptom lists, most of them showed visible enthusiasm and excitement. "Wow! This is awesome! Thank you so much!" They loved having summarized information quickly available (without hours of interviews), and they also loved seeing parents who were intensely involved in their child's care. I can't say enough about how keeping symptom lists improved and bolstered our doctor-client relationships. 

Below is a partial list of the symptom list that we took to our doctors (abbreviated for privacy purposes):

[Patient Name]
[Patient Birthdate]
[Visit Date]

  • Cannot: walk, crawl, scoot, sit independently, pull up, sit in exersaucer
  • Can: grab toys, roll from side to side, turn over, grab feet
  • Sometimes will arch back strongly when picked up or when held for more than a few minutes.
  • Hates being on his tummy – will become hysterical and/or hold breath
  • Can roll over but doesn’t, as he hates being on his tummy so much. Will roll from side to side while being careful to avoid falling onto his tummy
  • A bit floppy with head/body, though getting better
  • Is developing physical skills – just slowly 
  • Characteristics noted upon physical exam: 
    • Clinodactyly of the fifth digit
    • Simian crease
    • Unusual facial morphology (lowered ears, wide-set eyes, small mouth, etc.)
    • Mild syndactyly on both feet
    • Delayed motor skill development
    • Speech also seems to be delayed – no babbling yet, only cooing, moaning, humming, squealing, etc. 

Other notes:
  • Needs a lot of water – very thirsty
  • Diet – Nursing well, baby food (rice cereal, banana, avocado, kale, carrot, prune)
  • Initial challenges post-birth:
    • had a difficult birth with a slow start
    • problems with choking and establishing respiration during first 48 hours
    • tongue-tie and subsequent weight loss issues (corrected by age 2 months)
  • Has always been a more “delicate” baby – i.e. sensitive to hot and cold, wind, sudden changes, etc. 
  • Seems otherwise healthy – active, alert, bright, happy, etc. 
  • Extremely docile, easy-going, mild-mannered, quiet, happy, lazy
  • Has been very early (3-6 mos.) with all of his teeth
  • Extremely fond of finger/thumb-sucking 
  • Gets bloodshot eyes while nursing/sucking
  • Seems to have a harder/longer time with illnesses – his last cold (9/2010) lasted over 10 days
  • Is very particular about his food – if it isn’t perfectly smooth, or something else upsets him, he will vomit during eating (in large quantity, not just spitting up)
  • Skin picking/scratching
  • When very upset, will hold breath for 10-20 seconds (till skin color is blue/grey). Doesn’t do this as often as when he was an infant – then, it was every 1-2 days; now it is only when truly upset (for example, when someone makes him do tummy time). 
  • Does not like to be held for long periods or to sit up. Prefers to lie on his back.
  • Likes to stroke hair/beards.
  • Does not like very noisy/active situations or sudden changes, etc. 
  • Has episodes of night-time crying.
  • Has sudden episodes of crying. 
  • Gets cold/sweaty when crying.

The Question List

Additionally, at each specialist visit, I presented a question list - a list of questions that we wanted to ask the doctor.

Why not just ask the questions?

As many of you know, it's not that simple. Doctors are pressed for time, conversation tends to be fast-paced and headed in many different directions, and it's very easy to get side-tracked and find that one has ended an appointment without getting any questions asked, let alone answered.

When handing a doctor a list of questions, however, he or she will often stop and go systematically through the list and answer each question in turn. It's very helpful, and again, I highly recommend it.

Questions for Dr. -------
[Visit Date]

(1) Should we be concerned about [A]?

(2) Do we need to change our prescription for [B]?

(3) We have noticed [C]. Do you have any advice regarding that?


The Symptom List and the Question List were the two key points to making our specialist visits effective!

Our little guy two years ago, with his new baby brother! 

In simpler situations - for example, taking a child to the doctor for an ear infection - the symptom list and question list can be combined easily. We do this whenever we take a child to see a physician. Here is a made-up example:

Patient Kayla Brown (birthdate 12/13/12)
For visit on 3/13/14 with Dr. Smith


- Low fever (99.8F)
- Fussy
- Up at night
- Rubbing ears


(1) Can we treat this at home, or do we need antibiotics? (If we need antibiotics, note that Kayla is allergic to penicillin.)

(2) What comfort measures can we take for her at home?

(3) Will it be safe for her to attend her cousin's wedding with us on Saturday?

Again, even for simple visits, this makes everything so much easier!

I hope that these tips are a blessing to your family in whatever situation you find yourself!

Click on Part 9 to keep reading!

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