Babysitter & Respite Care Info Packet for Alström Families

A printable packet for anyone caring for your child (or adult family member) with Alström Syndrome in your absence — babysitters, family members, respite providers, friends. Tells them everything they need to know in one folder, organized so they can find what they need quickly.

How to use this packet

1. Print all sections

2. Customize each section with your family's specifics

3. Place in a folder, binder, or on the refrigerator

4. Walk new caregivers through it on their first visit

5. Update annually or when significant medical information changes

The first 4 pages are designed to be readable by someone unfamiliar with Alström. Later sections add depth.

SECTION 1 — Quick reference (first page)

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  CARE INFORMATION — KEEP NEARBY
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  CHILD/ADULT'S NAME: _____________________________________
  AGE: _________  DATE OF BIRTH: __________________________

  CONDITION: Alström Syndrome (genetic — not contagious,
             not your fault if anything goes wrong)

  KEY THINGS TO KNOW:
  • [Personalize: e.g., "Light hurts her eyes — keep lights low"]
  • [Personalize: e.g., "She wears hearing aids — they should
    stay in"]
  • [Personalize: e.g., "He has type 2 diabetes — needs meals
    on schedule"]
  • [Personalize: e.g., "She has heart medication at 8 AM and
    8 PM"]

  EMERGENCY CONTACTS:
  Parent #1: __________________________ Cell: ________________
  Parent #2: __________________________ Cell: ________________
  Backup family: ______________________ Cell: ________________
  Pediatrician/PCP: ___________________ Phone: _______________
  Nearest ER: ________________________________________________
  Address: ___________________________________________________

  IF YOU'RE NOT SURE WHAT TO DO, CALL THE PARENTS FIRST.
  IF SOMEONE IS IN IMMEDIATE DANGER, CALL 911 IMMEDIATELY.

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SECTION 2 — About Alström Syndrome (in plain language)

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  WHAT IS ALSTRÖM SYNDROME?

  Alström Syndrome is a rare condition that affects multiple
  parts of the body. [Name] was born with it.

  WHAT IT MEANS FOR [NAME]:

  ☐ Vision: [Name]'s eyes are sensitive to light and gradually
     see less over time. [Customize: "She uses tinted glasses
     and a magnifier for reading."]

  ☐ Hearing: [Name] [does/doesn't] use hearing aids. [Customize
     specifics.]

  ☐ Heart: [Name] has [no current cardiac issues / a
     well-controlled heart condition]. [Customize.]

  ☐ Diabetes: [Name] [does/doesn't] have type 2 diabetes.
     [If yes: "Needs meals on schedule, glucose checks, and
     insulin at specific times."]

  ☐ Other: [Customize as relevant]

  WHAT YOU SHOULDN'T WORRY ABOUT:
  • Catching it (it's genetic, not contagious)
  • Causing it to worsen (it's progressive on its own; you
    can't make it worse by being there)

  WHAT [NAME] LIKES:
  [Personalize: favorite activities, foods, comforts]

  WHAT [NAME] DOESN'T LIKE:
  [Personalize: triggers for distress, things that overwhelm]

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SECTION 3 — Daily care routine

Copy from your family's actual routine. Sample:

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  TYPICAL DAILY ROUTINE

  MORNING (before school/activities):
  □ Wake up at: ___________
  □ Hearing aids in
  □ Tinted glasses on
  □ Glucose check (if applicable): ____________
  □ Breakfast: usual options at home ________________________
  □ Morning medications:
     - ____________________________________________________
     - ____________________________________________________
  □ Insulin (if applicable): _________________________________

  MIDDAY:
  □ Glucose check (if applicable)
  □ Lunch
  □ Insulin (if applicable)
  □ Midday medications: __________________________________

  AFTERNOON:
  □ Snack at: ____________
  □ Activities: usually __________________________________

  EVENING:
  □ Dinner at: ____________
  □ Glucose check (if applicable)
  □ Insulin (if applicable)
  □ Evening medications: __________________________________
  □ Bath/shower: usual time _______________________________
  □ Bedtime routine: ______________________________________
  □ Bedtime: usually ____________

  OVERNIGHT (if applicable):
  □ CPAP / BiPAP: yes/no, mask is in ________________________
  □ Insulin pump: yes/no
  □ Glucose check at bedtime
  □ Wake-up if low blood sugar — see emergency section
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SECTION 4 — Medications

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  MEDICATIONS — Updated: _________________________________

  CURRENT MEDICATIONS:
  ─────────────────────────────────────────────────────────
  Name              Dose        When             Notes
  _________________ ___________ _______________ __________
  _________________ ___________ _______________ __________
  _________________ ___________ _______________ __________
  _________________ ___________ _______________ __________

  AS-NEEDED MEDICATIONS:
  _________________ ___________ _______________ __________

  ALLERGIES & REACTIONS: __________________________________

  WHERE MEDICATIONS ARE STORED:
  __________________________________________________________

  IF [NAME] REFUSES OR SPITS OUT MEDICATION:
  Don't force. Call the parents to ask what to do.

  IF YOU REALIZE YOU MISSED A DOSE:
  Call the parents.

  IF DOSE IS GIVEN TWICE BY MISTAKE:
  Call the parents immediately.

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SECTION 5 — Diabetes (if applicable)

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  DIABETES MANAGEMENT

  [Name] has type 2 diabetes from Alström Syndrome.

  DAILY:
  □ Glucose checks at: ___________________________________
  □ Insulin doses at: _____________________________________
  □ Carb count for meals: ________________________________
  □ Snacks should be available at: _______________________

  GLUCOSE NUMBERS — TARGET: _________ to _________
  Below 70 = LOW. Treat with fast carbs:
   • _________________ (e.g., 4 oz juice / glucose tabs)
  Above 200 = HIGH. Check ketones if level >250.

  IF GLUCOSE IS BELOW 50:
  Treat with fast carbs immediately. Recheck in 15 minutes.
  CALL PARENTS.

  IF GLUCOSE IS BELOW 70 AND UNCONSCIOUS:
  Call 911. Use glucagon if you've been trained.
  Glucagon is in: _____________________________________

  IF GLUCOSE IS OVER 350:
  Call parents. Don't give extra insulin without instruction.

  IF KETONES POSITIVE WITH HIGH GLUCOSE:
  Call parents immediately.

  EQUIPMENT:
  Glucose meter is at: ____________________________________
  Insulin pen / pump is at: _______________________________
  CGM phone alarms ON: yes / no
  CGM should alert at: low ______ high ______
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SECTION 6 — Vision and hearing equipment

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  VISION

  [Name] uses [tinted lenses / sunglasses / nothing] indoors.
  Lighting at home: keep [low / dim / mostly off / normal].
  Avoid: bright overhead fluorescents.
  When going outside: [hat / sunglasses / both].

  IF [NAME] LOSES OR BREAKS THEIR LENSES:
  Backup is in: ____________________________________________
  Call parents.

  HEARING

  [Name] [does/doesn't] use hearing aids / cochlear implant.
  Equipment is checked daily by [parent name].
  Battery replacements are at: ____________________________
  If [Name] takes them out — discuss with parents what's
  okay (some kids fight wearing them, some lose them easily).

  IF AN AID FAILS:
  Backup is in: ___________________________________________
  Call parents.

  TALKING WITH [NAME]:
  • Get attention before speaking
  • Face them
  • Speak at normal pace, clearly
  • Reduce background noise
  • Use [signing / printed words / etc.] if needed
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SECTION 7 — Cardiac considerations (if applicable)

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  CARDIAC — IF [NAME] HAS A HEART CONDITION

  [Name] has [history of cardiomyopathy / current cardiomyopathy /
   recovered from infant cardiomyopathy].

  Daily:
  □ Heart medications at scheduled times (see medication list)
  □ Activity restrictions: ____________________________________
  □ Things to watch for in daily activity: ____________________

  WARNING SIGNS — call parents and possibly 911:
  • Sudden significant breathlessness
  • Chest pain (in older children/adults)
  • Severe fatigue
  • Sudden weight gain (3+ lb in 1-2 days)
  • Passing out / fainting

  Activity guidance:
  ☐ Can play normally
  ☐ Avoid strenuous activity
  ☐ Other: _________________________________________________
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SECTION 8 — Behavioral / emotional information

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  EMOTIONAL / BEHAVIORAL

  [Name] is generally [happy / quiet / energetic / etc.].

  THINGS THAT HELP WHEN [NAME] IS UPSET:
  • _______________________________________________________
  • _______________________________________________________
  • _______________________________________________________

  THINGS THAT MAKE THINGS WORSE:
  • _______________________________________________________
  • _______________________________________________________

  COMFORT ITEMS:
  • _______________________________________________________
  • _______________________________________________________

  ACTIVITIES [NAME] LOVES:
  • _______________________________________________________
  • _______________________________________________________

  ACTIVITIES TO AVOID:
  • _______________________________________________________
  • _______________________________________________________

  IF [NAME] WORRIES OR ASKS HARD QUESTIONS:
  Listen. Acknowledge feelings. Tell parents about what came up.
  Don't try to handle big medical/life questions alone — wait
  for parents.

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SECTION 9 — Emergency response

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  EMERGENCIES — CALL 911 FOR:

  • Difficulty breathing
  • Chest pain
  • Loss of consciousness
  • Severe dehydration
  • Seizure (first time)
  • Severe injury / bleeding that won't stop
  • Severe allergic reaction
  • Glucose below 50 with no response to treatment
  • Glucagon needed (severe hypoglycemia)

  WHILE WAITING FOR 911:
  • Call parents
  • Stay with [Name]
  • Be ready to share: condition (Alström), medications,
    what happened
  • Have the ER quick-reference card ready

  NON-EMERGENCY BUT URGENT — CALL PARENTS:

  • [Name] seems significantly off
  • Vomiting / severe nausea
  • Fever above _____
  • Glucose persistently outside target range
  • Behavior unusual for [Name]
  • Equipment failure (hearing aid, CPAP, pump)
  • Medication issue (missed/double dose)
  • Anything you're not sure about

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SECTION 10 — Practical household info

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  AROUND THE HOUSE

  Wifi:
  Network: ____________  Password: ____________________

  TV / streaming:
  Notes: _______________________________________________

  Food / snacks:
  In fridge: ___________________________________________
  In pantry: ___________________________________________
  [Name] can have: _____________________________________
  [Name] should not have: _____________________________

  Bedtime routine:
  ______________________________________________________

  Pet care (if applicable):
  ______________________________________________________

  House rules:
  ______________________________________________________

  Parking: _____________________________________________

  Trash day: ___________________________________________

  Mail: ________________________________________________
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SECTION 11 — When parents return

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  AT HANDOFF — TELL PARENTS:

  • Anything that happened (good and challenging)
  • Medication times — confirm given on schedule
  • Glucose readings (if applicable)
  • Meals eaten
  • Any concerns
  • Questions you have

  PARENTS WILL APPRECIATE:
  • Honesty about anything that didn't go perfectly
  • A handoff summary
  • Equipment put back in usual places
  • Dishes done if possible (kindness goes a long way)
  • Knowing you'd come back / are willing to help again

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SECTION 12 — For respite providers / overnight

If the caregiver is providing overnight or longer-term care:

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  OVERNIGHT / LONGER-TERM CARE NOTES

  Sleep environment:
  □ Bed location: ________________________________________
  □ Lights on/off: _______________________________________
  □ Sound (music / silent): ______________________________
  □ Temperature preference: ______________________________

  Sleep equipment (if any):
  □ CPAP / BiPAP setup at: _______________________________
  □ Mask type: __________________________________________
  □ Pressure settings: ___________________________________
  □ Insulin pump worn at night: yes / no
  □ CGM phone alerts at night: yes / no
  □ If alarm goes off: do _______________________________

  If [Name] wakes during the night:
  □ Usual reasons: _______________________________________
  □ How to help: _________________________________________
  □ When to call parents: ________________________________

  Morning routine (if you're there for it):
  □ Wake-up time: ________________________________________
  □ Morning glucose check (if applicable)
  □ Morning medications
  □ Hearing aids on
  □ Glasses on
  □ Breakfast
  □ See daily routine section

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Tips for parents using this packet

Walk through it with new caregivers

The first time someone is going to care for your child, sit down with them and walk through this packet. 30 minutes of orientation prevents hours of confusion later.

Update at least annually

Things change — medications, routines, capabilities, fears. Don't let the packet become outdated.

Have a backup caregiver

Even if you have a primary respite provider, having a backup who's been oriented prevents emergencies when your primary is unavailable.

Don't apologize for the complexity

A child with Alström has more medical needs than typical. Caregivers who care for medically complex children expect this. Provide the information without minimizing.

Pay them well

Caregiving for a medically complex child is more demanding than typical babysitting. If you can, pay above the local babysitting rate. This is fair compensation for skilled work.

Build a small team

Multiple caregivers who know your routines means you have flexibility. Not everyone has to be available every time.

Where to find caregivers

For families looking for skilled respite providers:

Through medical / disability organizations

State Medicaid waivers often fund respite care
Patient organizations sometimes maintain lists
Centers for Independent Living can help in some US areas
Easter Seals and similar organizations offer respite programs

Through hire-yourself routes

Care.com — filter for special needs experience
Local universities — nursing, special education, social work programs
Pediatric nurses for younger children
Companions for adults with disabilities for adults

Through community

Family members who are willing to learn
Other Alström families doing reciprocal exchanges
Religious community members who've offered help
Friends willing to learn

For higher-level care needs, professional in-home health aides may be appropriate. Some are covered by Medicaid waivers.

A note on guilt

Many parents of medically complex children feel guilty about leaving them with anyone. The guilt is normal. It's also worth examining.

Children with Alström and their parents both benefit from:

The patient learning that other adults can care for them well
The parents getting time to rest and tend to themselves
The parental relationship having space to maintain itself
Other family members staying connected
The whole family system being sustainable for the long haul

Respite isn't a luxury. It's part of long-term care.

Frequently Asked Questions

What if no one wants to take this on?

Common feeling. In practice, most caregivers do well with good orientation. Highlight:

This packet has everything they need
You're available by phone
Most things go smoothly
The pay reflects the responsibility

How do I find someone to trust?

Reference checks. Watch them for short stints first before trusting them with overnight or longer care. Trust your instincts.

What if my child resists having a babysitter?

Common, especially in older children. Strategies:

Introduce the babysitter while you're still home
Multiple short visits before longer ones
The babysitter learns the child's preferences
Familiar comfort items
Familiar routines maintained
Plan something fun for the child during the visit

What about other adults with Alström?

For adult family members with Alström, "respite" looks different — it might be a friend coming over for an evening, a paid companion, or another adult relative spending time. The packet adapts.

Babysitter / Respite Care Information Packet