Prepare For Doctors’ Appointments And Next Steps

ASPIRE understands how overwhelming life can feel when your child is in a PANS flare and you can’t get into a doctor’s office fast enough to get a diagnosis and commence a treatment plan. Take a deep breath. There are some steps to take now to ensure you prepare for that doctor’s appointment. For those who have already received a diagnosis and started treatment, it is equally imperative to prepare for subsequent appointments.

First Step

Find a doctor.

Remember there is not a one-size-fits-all doctor. Carefully choose a reputable doctor who you think will work well with your child and family. Typically it takes a team of doctors, formed over time, to help manage the patient’s care. Start with one medical doctor that can diagnose and initiate a treatment plan. ASPIRE has a list of doctors that work with PANS patients; please note it is essential to vet the doctors on this list for yourself personally. At this time, it can be helpful to educate yourself on other providers that may be necessary for the patient’s team. Some teams include but are not limited to, CBT therapists, school advocates, naturopaths, other medical doctors, and therapists, etc.

Find a Provider

Step Two

Get Support and Start Practicing Self Care.

PANS can be isolating. Please reach out to ASPIRE, local organizations, local support groups, and online support groups. Many friends, colleagues, and family members will not truly comprehend what is happening with the patient. This can shift the dynamic of these relationships and not always for the better. Please know you are not alone, and everyone needs support; luckily, there is support out there!

Self-care is not selfish. The adage, “you can’t drink from an empty cup” rings true. Yes, it feels impossible to take care of yourself while your child is in crisis. However, even taking brief moments to yourself, ordering in food, calling a friend, sleeping instead of doing something irrelevant, going for a quick walk, etc. can provide moments of much needed respite.

Step Three

Education

At ASPIRE, we believe to be the best patient advocate you can be, one must educate yourself on PANS. This does not mean you must rush to read studies and every message on a group chat; both can cause one to feel overwhelmed. However, familiarizing yourself with the basics of how the symptoms can present themselves, what the treatments are, and how to get support will be helpful. There is a wealth of knowledge here on the ASPIRE website under Resources.

Appointment Preparation

Prepare the patient’s medical file for all appointments.

PANS is a clinical diagnosis and not based solely on one set of tests. It is important to have past medical records and a symptom onset timeline ready, so a doctor has a clear patient history.

Patient Files

If your first appointment is not with the patient’s primary care provider, get copies of pertinent medical files.  Also, don’t forget to get a copy of any related testing done at Urgent Care facilities. For example, did the patient get a positive strep throat test at an Urgent Care facility around the time PANS symptoms started or did a therapist write a recent report on new or worsening behaviors? If yes, then get copies of those records.

Symptom Tracking

During an appointment, it is easy to forget a symptom and hard to give a full picture of the patient in a concise, chronological format. Tracking the frequency, severity, and onset of symptoms is the best way to present a clear timeline of events and not forget anything.

See Symptom Tracking Tools

At the Appointment

Bring Your Files. Don’t forget all your prep work!

Bring Support with You
Some doctor’s appointments can be long and sometimes it is not appropriate for the patient, especially if young and/or emotionally fragile, to be present for the entire appointment. So you will want someone to be with the patient in the waiting room as needed. If you are an adult patient seeking help, take someone with you to help you advocate for yourself. Plus it never hurts to have an extra set of ears or a note taker.

Ask to Record Appointment/Be Prepared to Take Notes
Not all doctors will allow recordings, but it is worth asking. The doctor gives a lot of information and it can be challenging to remember everything. Also, if another caretaker cannot be present at the appointment, replaying a recording can help keep everyone on the same page. If your support person can help take notes instead of recording, that is helpful as well. ASPIRE Appointment Tracking Sheets are available for you to take with you.

What You Need to Know Before End of Appointment
You do not want to leave an appointment with more questions than you have going in. You need to have clarity on what the lab results were, what they mean and what treatments will be used to address results. Many doctors are hard to reach in between appointments and charge for that consulting time, so keeping future potential questions to a minimum is key.

Make sure before you leave that you have:

  • The official diagnosis in writing
  • A clear understanding of the diagnosis, the treatment plan, and the lab results. ASPIRE Appointment Tracking Sheets are available for you to take with you and fill out during appointments.
    • Why specific medications are prescribed
    • When to start each treatment
    • How long and when to take each treatment
    • How you will know the treatments are effective
    • What to do if there are adverse reactions
    • If current flare as a result of the current treatment plan, what should you do if the patient relapses?
  • A plan for an emergency
    • What constitutes an emergency?
    • What does the doctor suggest you do in an emergency?
    • Does the doctor have an emergency number?
    • Will the doctor consult with an Emergency Room as needed?
  • Clarification on
    • When to follow up on labs with the doctor. Most doctors require an appointment to go over labs. Get a copy of all completed labs.
    • When to make the next appointment.
    • Will the doctor write a letter to the school to help secure appropriate supports such as IEPs and 504 plans?
    • Are there suggestions for additional team members, e.g. CBT, other medical doctors, etc.? Will the doctor help coordinate care with team members as appropriate? If yes, what is the best way to ensure that happens smoothly?
    • What the billing practices are
  • The following paperwork:
    • Treatment plan
    • Lab requisition forms
    • Prescription forms
    • Copies of previous lab work
    • Bill to submit for reimbursement

After the Appointment

  • Make sure files are organized in a binder and/or scanned into the computer.
  • Start the treatment plan.
  • Continue/Start to get support and practice self-care.
  • Continue/Start to educate yourself more.
  • Plan the next steps by continuing to grow the patient’s team as needed.
  • Implement or adjust IEP or 504 plans at school.

Prepare for an Emergency

Preparing for an emergency is not the most pleasant topic to address but you want it in place just in case.

Patient Emergency

  • Hopefully, your medical doctor has helped you map this out already in an appointment.
    • Create an emergency file with pertinent information. This should be a separate file that you can take with you anywhere. You should also scan it in and have it accessible online:
      • Diagnosis
      • A current list of medications
      • Any additional essential medical information

Caregiver Emergency

  • What if something happens to you or another caregiver?
    • List of emergency contacts
    • Written information on PANS, patient’s symptoms, patient’s treatment plans, patient history, as well as updated files from all practitioners, providers, and school.

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