# Daily Tracker for Alström Syndrome

A printable, fillable daily tracker designed specifically for the complexity of Alström care. Track what matters: symptoms, medications, glucose (if diabetic), sleep, weight, mood. Print weekly or monthly versions. Use whichever sections apply to your situation.

The tracker has two parts: a daily log (one row per day) and a monthly review (summary at end of each month). Skip sections that don't apply.


Why daily tracking matters

For complex conditions like Alström, patterns emerge over time that aren't obvious in single visits. Daily tracking:

  • Documents how the patient is actually doing day-to-day
  • Catches early signs of complications (weight gain, glucose changes, sleep issues)
  • Provides data for specialist visits ("Here's what we've been seeing")
  • Supports medication adjustment decisions
  • Helps with insurance and disability documentation
  • Identifies triggers and patterns

Especially useful when:

  • Diabetes is being managed actively
  • Cardiomyopathy is being monitored
  • Sleep apnea is in play
  • New medication has started
  • Recovery from illness or hospitalization
  • Pre-pregnancy or pregnancy

Weekly tracking page (printable)

Print one per week. Date the week at the top.

═══════════════════════════════════════════════════════════════
  DAILY TRACKER — WEEK OF: ___________________
═══════════════════════════════════════════════════════════════

                          MON    TUE    WED    THU    FRI    SAT    SUN
  ─────────────────────────────────────────────────────────────────────

  Weight (kg/lb)         ____   ____   ____   ____   ____   ____   ____

  Blood pressure
   morning               ____   ____   ____   ____   ____   ____   ____
   evening               ____   ____   ____   ____   ____   ____   ____

  Glucose (mg/dL or mmol)
   fasting / morning     ____   ____   ____   ____   ____   ____   ____
   pre-lunch             ____   ____   ____   ____   ____   ____   ____
   pre-dinner            ____   ____   ____   ____   ____   ____   ____
   bedtime               ____   ____   ____   ____   ____   ____   ____
  CGM time in range %    ____   ____   ____   ____   ____   ____   ____

  Insulin
   total daily           ____   ____   ____   ____   ____   ____   ____

  Energy (1-10)          ____   ____   ____   ____   ____   ____   ____

  Mood (1-10)            ____   ____   ____   ____   ____   ____   ____

  Sleep
   hours                 ____   ____   ____   ____   ____   ____   ____
   quality (1-10)        ____   ____   ____   ____   ____   ____   ____

  CPAP
   used last night       Y/N    Y/N    Y/N    Y/N    Y/N    Y/N    Y/N
   hours used            ____   ____   ____   ____   ____   ____   ____

  Medications taken
   as prescribed         Y/N    Y/N    Y/N    Y/N    Y/N    Y/N    Y/N
   if NO, explain below

  Exercise
   minutes               ____   ____   ____   ____   ____   ____   ____
   type                  ____   ____   ____   ____   ____   ____   ____

  Symptoms (check all that apply per day)
   shortness of breath   ☐      ☐      ☐      ☐      ☐      ☐      ☐
   fatigue (significant) ☐      ☐      ☐      ☐      ☐      ☐      ☐
   swelling              ☐      ☐      ☐      ☐      ☐      ☐      ☐
   chest discomfort      ☐      ☐      ☐      ☐      ☐      ☐      ☐
   palpitations          ☐      ☐      ☐      ☐      ☐      ☐      ☐
   dizziness             ☐      ☐      ☐      ☐      ☐      ☐      ☐
   headache              ☐      ☐      ☐      ☐      ☐      ☐      ☐
   abdominal pain        ☐      ☐      ☐      ☐      ☐      ☐      ☐
   nausea                ☐      ☐      ☐      ☐      ☐      ☐      ☐
   eye discomfort        ☐      ☐      ☐      ☐      ☐      ☐      ☐
   ear pain / drainage   ☐      ☐      ☐      ☐      ☐      ☐      ☐
   urinary issues        ☐      ☐      ☐      ☐      ☐      ☐      ☐
   mood concerns         ☐      ☐      ☐      ☐      ☐      ☐      ☐
   other                 ☐      ☐      ☐      ☐      ☐      ☐      ☐

  Daily notes / events:
  ───────────────────────────────────────────────────────────
  Mon: ________________________________________________________
  Tue: ________________________________________________________
  Wed: ________________________________________________________
  Thu: ________________________________________________________
  Fri: ________________________________________________________
  Sat: ________________________________________________________
  Sun: ________________________________________________________

═══════════════════════════════════════════════════════════════

Simplified version (if the full tracker is too much)

For families who don't need detail every day, a simplified version covers the essentials.

═══════════════════════════════════════════════════════════════
  SIMPLIFIED WEEKLY TRACKER — Week of: ____________________
═══════════════════════════════════════════════════════════════

  Each day, note 3 things:

  Day        | How was overall? (1-10) | Anything notable?
  ─────────────────────────────────────────────────────────────
  Monday     | _____                   | _________________________
  Tuesday    | _____                   | _________________________
  Wednesday  | _____                   | _________________________
  Thursday   | _____                   | _________________________
  Friday     | _____                   | _________________________
  Saturday   | _____                   | _________________________
  Sunday     | _____                   | _________________________

  Weekly summary / trends to mention to doctor:
  __________________________________________________________
  __________________________________________________________

═══════════════════════════════════════════════════════════════

Monthly review page

At the end of each month, review the daily logs and summarize:

═══════════════════════════════════════════════════════════════
  MONTHLY REVIEW — Month: ____________________
═══════════════════════════════════════════════════════════════

  WEIGHT TREND THIS MONTH:
  Starting weight:  ____   Ending weight:  ____   Change:  ____
  Pattern: stable / gradual gain / gradual loss / fluctuating

  BLOOD PRESSURE TREND:
  Average morning:  ____   Average evening:  ____
  Pattern: stable / elevated / improving

  GLUCOSE TREND (if applicable):
  Average HbA1c-equivalent: ________
  Hypoglycemic events: _____ this month
  Hyperglycemic events: _____ this month

  ENERGY / MOOD TREND:
  Best week:  ___________________
  Hardest week: _________________

  SLEEP TREND:
  Average hours: ________
  CPAP compliance: _____% nights

  MEDICATION ADHERENCE:
  Estimated %: _____%
  Issues: ________________________________________________

  EXERCISE:
  Total minutes this month: ________
  Most common type: _______________

  SYMPTOMS THIS MONTH:
  Most frequent: ________________________________________
  Concerning patterns: __________________________________

  HEALTHCARE EVENTS:
  Visits this month: ____________________________________
  ER / urgent care: _____________________________________
  New medications: ______________________________________

  THINGS TO RAISE WITH MEDICAL TEAM:
  1. ________________________________________________________
  2. ________________________________________________________
  3. ________________________________________________________

  WHAT'S WORKING:
  __________________________________________________________

  WHAT'S HARDER THIS MONTH:
  __________________________________________________________

═══════════════════════════════════════════════════════════════

What to track for which situation

Different situations call for different focus. Here's a quick guide.

After heart-failure recovery (infant cardiomyopathy)

  • Weight (daily)
  • Symptoms list — especially breathing, fatigue, feeding (kids)
  • Medication compliance
  • Energy level
  • Exercise tolerance

Active diabetes management

  • Glucose 4–7 times daily (or CGM data)
  • Insulin doses
  • Carb counting
  • Hypoglycemia events
  • Time in range
  • Energy

Post-cochlear implant

  • Hours wearing processor
  • Listening situations attempted
  • Speech understanding moments
  • Battery / device issues
  • Vertigo or other side effects

Pre-pregnancy / pregnancy

  • All cardiac and metabolic measures
  • Weight (more frequently)
  • Blood pressure (more frequently)
  • Symptoms
  • Exercise
  • Medication management

Post-surgery / recovery

  • Pain (1-10)
  • Wound site
  • Activity level
  • Medications
  • Symptoms

Mental health monitoring

  • Mood (1-10)
  • Sleep
  • Energy
  • Activities engaged in
  • Concerning thoughts
  • Therapy / medication compliance

Digital tracker alternatives

If physical tracking doesn't fit, digital options:

Apps

  • Health apps (Apple Health, Google Fit) — basic vitals, exercise, sleep
  • Diabetes-specific (mySugr, Glucose Buddy) — for active diabetes management
  • Symptom trackers (Bearable, Symple) — flexible symptom tracking
  • Heart-failure apps (HF Path, others) — weight and symptom monitoring
  • Custom spreadsheet — flexible, syncs across devices

Patient portals

Many hospital systems integrate with home tracking. Data flows directly to your medical record.

Wearables

  • CGM (Dexcom, Libre)
  • Smart watches (track HR, sleep, activity)
  • Smart scales (sync weight to apps)
  • Continuous BP monitors

Voice tracking

For users with vision loss, voice-based tracking through apps with screen-reader support, smart speakers, or notes apps with voice memos can replace handwritten logs.


Tips for sustainable tracking

Start small

Don't try to track everything from day one. Pick 3 things that matter most. Add more as the habit forms.

Track at consistent times

Morning weight, bedtime glucose check, etc. Routines make it easier.

Pair with existing routines

Track right after taking medications. Right after brushing teeth. After putting kids to bed.

Don't beat yourself up over gaps

A week of incomplete data is better than nothing. Pick up where you left off.

Review monthly

Looking at trends matters more than daily perfection. The monthly review is where insights happen.

Bring trackers to appointments

The data is more useful when shared with the medical team. They see things you might miss.


When tracking flags something to action

Patterns that should prompt a call:

Weight

  • Sudden gain (2-3 lb over 1-2 days) — possible heart-failure decompensation
  • Sustained loss without trying — possible new issue
  • Pattern of fluctuation — possible fluid management issue

Blood pressure

  • Persistently elevated readings — needs attention
  • Sudden changes from baseline — call

Glucose

  • Frequent hypoglycemia — medication adjustment needed
  • Sustained hyperglycemia — investigation needed
  • Unexpected pattern changes — call endocrinology

Symptoms

  • Increase in cardiac symptoms — call cardiology
  • New symptoms — call relevant specialist
  • Persistent / worsening anything — call

Mood

  • Persistent low mood — mental health support
  • Withdrawal from activities — assessment needed
  • Suicidal thoughts — immediate care (988 in US, Samaritans 116 123 UK)

Frequently Asked Questions

How long should I keep these records?

Indefinitely. They're the historical record of your or your child's health. Digital storage is fine. Bring relevant portions to specialist visits.

My medical team didn't ask about my tracking. Is it useful?

Yes. Many medical teams don't proactively ask but use the data when offered. Bring your records and ask, "Would these help?"

What if my child doesn't want to track?

For older children and teens, ownership matters. Engage them in choosing what and how to track. Let them lead. The data is theirs.

Should everyone track?

Not necessarily daily forever. Track during active phases (after diagnosis, during medication changes, during pregnancy, after surgery, during illness) and ease off during stable periods.


Related reading


This tracker is for informational and self-management purposes. Trends and concerning patterns should be reviewed with your medical team.