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Care kit

What to bring to a new specialist

A printable-ready checklist for the next appointment — so you walk in prepared, not scrambling in the parking lot.

Read time
6 min read
Updated
Jump to a section
  1. Start here (30 seconds)
  2. The checklist
  3. Medical records
  4. For your child
  5. Questions to prepare
  6. During the visit
  7. After the visit
  8. What to do next

Start here (30 seconds)

A new specialist has minutes to understand a child you've known for years. Your job is not to tell the whole story perfectly — it's to bring the pieces that save time and prevent repeat tests.

Print this page. Check off what you have. Don't stress over what you don't.

The checklist

Medical records

  • Genetic test results (full report, not just a summary letter)
  • Most recent clinic notes from your current specialists
  • Hospital discharge summaries from the last 12 months
  • Surgery or procedure reports
  • Growth charts or developmental assessments
  • Immunization record

Medications & therapies

  • Current medication list with doses and schedules
  • List of supplements, vitamins, and alternative therapies
  • Allergies and adverse reactions (documented)
  • Equipment list — wheelchair, feeding pump, ventilator, etc.
  • Therapy schedules (PT, OT, speech, ABA)

Daily life snapshot

  • A one-page "day in the life" — sleep, feeding, seizures, behaviors
  • Photos or short videos of concerning episodes (if appropriate)
  • School or early intervention reports (IEP, 504 plan)
  • Insurance card and referral paperwork

Your questions

  • Top 3 questions written down (in your own words)
  • A notebook or phone notes app ready to capture answers
  • Someone to come with you, if possible — a second pair of ears helps

Getting records when they're scattered

Most families don't have a neat folder. Here's how to gather what you can:

  • Patient portals — Log into each hospital's online system and download visit summaries. Search "after visit summary" or "clinical notes."
  • Call medical records — Request a complete chart. It may take 2–4 weeks. Ask for electronic delivery (CD or secure download) if available.
  • Genetic lab — Call the lab that ran the test and ask for the full variant report, not just the result letter your doctor received.
  • Your current specialist's office — Ask them to compile a referral packet. Many will do this if you give a few days' notice.

Tip: A 1-page summary you write yourself — diagnosis, key dates, current meds, top concerns — is often more useful than 400 pages of unorganized records.

For your child — comfort & regulation

  • Favorite comfort item — stuffed animal, blanket, tablet with headphones
  • Snacks and drinks — appointments run long; hospital cafeterias are not always nearby
  • Diapers, wipes, spare clothes — always one more than you think you need
  • Medications due during the visit — with timing instructions written down
  • Communication tools — AAC device, picture cards, or a one-liner: "My child is nonverbal. Please talk to us, not over us."
  • Sensory supports — noise-canceling headphones, sunglasses, weighted lap pad

Questions to prepare

You won't get to all of these. Pick your top three.

  1. What do you see when you look at my child's records — and what's missing?
  2. What tests or evaluations do you recommend — and which can wait?
  3. What is your experience with this specific condition?
  4. How do you communicate between visits — portal, email, phone?
  5. Who else should be on our team?
  6. What should we watch for at home before the next visit?

During the visit

  • It's okay to take notes — or record audio if the doctor agrees.
  • It's okay to say "I don't understand" — ask them to say it again in plain language.
  • It's okay to ask for a moment — step into the hallway, breathe, come back.
  • Bring a second adult if you can — one listens while the other tends to your child.
  • Ask for a written summary before you leave — next steps, new orders, follow-up date.

After the visit

  • Write down your impressions while they're fresh — what felt right, what felt off.
  • Request records from today's visit for your files.
  • Follow up on referrals and orders within a week — they fall through the cracks easily.
  • If something doesn't sit right, you can always get a second opinion.

A good specialist makes you feel like a partner, not a problem.

If you walked out feeling dismissed, that is information too — and you are allowed to keep looking.

What to do next

  • Print this checklist and tuck it in your care binder.
  • Start a one-page summary tonight — even bullet points help.
  • Email VENE if you want help organizing questions before a big appointment.
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