8 Steps to Maximize Doctor Appointments for Special-Needs Children

Doctor Visits, Patient Care, Tips for Parents

Maximize Doctor Appointments

Doctor appointments are all too frequent in the lives of families with special-needs children. The appointments themselves and the issues addressed, however, are seldom routine. Given that you will typically have only 15-30 minutes with the doctor, making the most of this time is critical. These eight steps will help you maximize the benefit of your next appointment:

  1. When making the appointment, tell the staff if you are new or if you have issues that will need additional time so they can schedule accordingly.
  2. Arrange for someone to go with you to the appointment who can tend to your child. You don’t want to be distracted while you talk with and listen to your doctor.
  3. Before you arrive, write down all your questions and concerns in as much detail as possible. Remember to take the list with you.
  4. Arrive early to get all the paperwork out of the way. You don’t want to waste any of your appointment time filling out forms.
  5. Be prepared to hand your doctor an up-to-date summary of your child’s medical history and related information (see sample below).
  6. Don’t try to take notes. Concentrate on listening to your doctor. Your doctor should provide you with any take home instructions in writing. Do not leave until you understand what your doctor is telling you.
  7. Before you leave, ask which RN in the office you can contact with follow-up questions should the doctor be unavailable. Make sure to get the RN’s direct phone number.
  8. Once you get home, update your child’s medical history summary with any new diagnoses, prescriptions, doctor’s instructions, and contact information.

What You Should Prepare for Your Doctor

The amount of information you take to your doctor depends on the type of appointment. Is this a new primary care visit? Take everything (see care guide below). Seeing a specialist? Take an up-to-date care summary of all your child’s diagnoses and specialists, being sure to highlight issues related to the specialty being visited (see care summary below). Follow-up visit? The care summary should suffice.

There are apps available that allow you to record, update and share your child’s medical information with their physicians and other caregivers. If you prefer something that requires no device, you can download the free CPFN Care Guide and provide your doctor’s office with written info.

Care Summary
Having a written summary of your child’s medical history and other related information readily available for your doctor will save time and give you peace of mind that your doctor is working from complete information. This summary should only be 3-4 pages long and should include:

  • Office visits and diagnoses by date – Note the date of the diagnosis, the diagnosis, the doctor who made the diagnosis and their contact information.
  • Hospitalizations – Name of the hospital, dates of admission and discharge, admitting physician’s name and contact information, reason for the admission, duration of the hospitalization, and whether the diagnosis was resolved with the hospitalization.
  • Surgeries – Name of the hospital where the procedure was performed, names and contact information of the surgeon, dates of admission and discharge and what the surgery was for.
  • Medications – List all medications, along with date of prescription, what it was prescribed for, prescribing physician’s name and contact information, the current dosage, strength and frequency of administration. Note medications your child may be allergic to, what the medication was used for, what symptoms your child experienced that indicated an allergic reaction and what, if any, action was taken or needed. This list can be copied by the staff and included in your child’s records. In addition to providing your physician with a concise list, it alleviates the possibility of an error being made in transcribing your child’s medications. Check the status of prescription medications before the appointment in the event refills are needed. This will enable you to have the physician write orders for any needed refills at the time of the appointment.

Care Guide
A comprehensive care guide for your child should contain all of the above, plus:

  • All physicians and providers and their contact information
  • Medical companies you use and their contact information
  • Emergency contact information
  • Pharmacy contact information
  • Immunization records – Regardless of the type of appointment, you will be asked if your child’s immunizations are current.
  • Lab work notes – If your child is on medication(s) that require monitoring, make note of the date of the last lab work that was done. If you have a copy of the results, take those for the physician’s review. If your child is due for follow-up lab work, bring it to the physician’s attention so the order can be written during your visit.
  • Insurance and billing information, such as the primary insurance holder’s name, social security number, contact and employment information.

Sample Summary Form for a Doctor’s Visit (Child with Cerebral Palsy)

[Writer’s Note: This is a sample of the information I took to all of my daughter’s doctor visits. It proved invaluable to me, and was appreciated by all of her physicians. Rather than having to listen to a lengthy description of diagnostic and surgical history, the physician was able to quickly read through a short summary and spend more time with my daughter.]

  • Diagnosis – Severe Cerebral Palsy since birth, Severe MR, Hydrocephaly (NO Shunt), Microcephaly, Seizures; CNS dysfunction (bradycardia; hypothermia)
  • Date of onset/diagnosis: 6 Oct 1984 (Neo-natal asphyxia resulting in Severe global brain damage)
  • Additional Diagnosis: GERD, delayed gastric emptying; gastroesophageal hernia, paraesophageal hernia, bowel blockage; scoliosis; Dystonia; Mid brain sympathetic storming

Seizure disorder, central nervous system disorder, dystonia:

  • Seizure disorder since birth: (Present Status- Well Controlled)
    Medications presently used: Tegretol, Diazepam
  • Central Nervous System Dysfunction:
    Diagnosis/Duration Dates: approx 1987-present
    Symptoms: Bradycardia, Hypothermia
    Treatment: Advised by primary that no intervention be sought for these episodes. Believed that intervention during these episodes could lead to life threatening complications.
  • Dystonia
    Date of Diagnosis: 1996-Present
    Treatment/Medications: Medtronics Intrathecal Baclofen Pump
  • Mid Brain Sympathetic Storming
    Treatment/Medications: Managed w/Medtronics Intrathecal Baclofen Pump
    Symptoms: Tachacardia HR – 80-150, Blotchy, mottled skin, Hyperthermia, Spasticity, Occasional cyonsis of lower extremities


  • Medtronics Intrathecal Baclofen Pump
    Initial implantation Baclofen Pump: 12/18/97
    Surgery performed by Dr. Peter Statts, Johns Hopkins Hospital, Baltimore
  • Replacement of Medtronic Intrathecal Baclofen Pump
    Surgery: 2/27/02
    Pump replaced for Low Battery February 2/27/2002
    Attending Surgeon: Louis Martin Panlilio, Johns Hopkins Hospital, Baltimore
  • Replacement of Medtronic Intrathecal Baclofen Pump
    Surgery: September 2007
  • Attending Surgeon: Louis Martin Panlilio, Johns Hopkins Hospital, Baltimore

  • Followed up to PRESENT: Pump refills done by Dr. Hoon, Kennedy Krieger Movement Disorder Clinic, Baltimore, Md

GERD, Gastroparesis, Paraesophogial hernia, bowel obstruction
Date of onset: Approx. 1987
Medications/Treatment: Previcid, Carafate (unable to start Carafate due to GI issue, reflux, delayed gastric emptying
G-Tube, J-Tube


  • 1987 – Nissan Fundoplication and G-tube , Children’s National Medical Center, DC
  • June 1997: Presented with severe pain of unknown origin. Sonogram indicated large mass on left ovary, gallstones and inflamed appendix.
  • Surgery: Ovary removed for benign mass, gallbladder removed, appendix removed. Johns Hopkins Hospital, Baltimore, MD

  • 02/21/02 – Failed Nissan fundoplication with persistent reflux and recurring aspiration pneumonias
    Surgery- Laparotomy, lysis of adhesions and Roux-en-Y, STAMM jejunostomy, Johns Hopkins Hospital, Baltimore, MD
  • 12/30/2009: GI study w/contrast via J-tube and G-tube revealed Paraesophogial hernia and partial obstruction of bowel at juncture between Jaejunum and Rouxen-y
    Treatment/Intervention: Surgical intervention not adviseable due to amount of scar tissue and morbidity rate of needed surgery.


  • Scoliosis
    Treatment: NO INTERVENTION WANTED due to high morbidity rate of surgery
  • July 1997 – Surgery
    Ostiotomy of right femoral head
    Abductor releases to both hip abductors and hand string release to right hand string


  • Restrictive Lung Disease; chronic respiratory failure
    Medications: Oxygen (1-1/4 Liters baseline), Albuterol, Pulmicort


  • GERD diagnosed approx. 1987
    Treatment: Nissan Fundoplication and G-tube 1987 Children’s Hospital, DC
  • Approx 1994 – Pulminology/ENT
    Obstructed Airway
    Surgery – Tonsils and Adnoids Removed
    Physican: Dr. Kelly
  • Approx 1996 – Gastroenterology
    Surgery: Left ovary removed for benign mass, Gallbladder removed, Inflamed Appendix removed
    Physician: Dr. Kathryn Schwartz, Johns Hopkins Hospital, Baltimore, MD
  • July 1997 – Orthopedics
    Surgery: Ostiotomy of right femoral head
    Abductor releases to both hip abductors and hand string release to right hand string.
    Surgeon: Dr. Hadley-Miller, Johns Hopkins Hospital, Baltimore, MD
  • 12/18/1997 – Neurology
    Diagnosis: Dystonia
    Surgery – Implantation of Baclofen Pump
    Surgeon: Dr. Peter Statts, Johns Hopkins Hospital, Baltimore, MD
  • 2001 – Liver failure
    Diagnosis: Allergic reaction to depakote
    Treatment – 9 days inpatient, discontinued several meds
    Physician: Neurology, Dr. Treasure, Johns Hopkins Hospital, Baltimore, MD
  • January 2002 – Pulminary
    Aspiration Pneumonia and RSV
    3 Weeks – Bipap; antibiotics; nebs
  • February 2002 – Pulminary
    Aspiration Pneumonia
    Pre-op Diagnosis: Failed Nissan fundoplication with persistent reflux and aspiration pneumonias
    Surgery 02/21/02:
    Laparotomy, lysis of adhesions and Roux-en-Y, STAMM jejunostomy for treatment of reflux disease to prevent aspiration and further respiratory distress.
    Surgeon: Charles Paidas, Johns Hopkins Hospital, Baltimore, MD
    RESOLVED – Discharged: 3/7/02
  • 2/27/2002 – Neurology
    Surgery: Replacement of Medtronic Intrathecal
    RESOLVED – Discharged: 3/7/02
  • 10/14/2002 – Pulminary – Pneumonia, Pseudomonas
    Treatment: BIPAP, Tobramyacin, antibiotics, nebs
    Physician: Sharon A. McGrath-Morrow, MD, Johns Hopkins Children’s Center
    RESOLVED – Discharged: 10/21/02
  • June 2004: Pulminary – Pneumonia, Sinusitus
    Treatment: IV Antibiotics, BIPAP, Oxygen
    RESOLVED – Discharged: 6/21/04
  • September 2007
    Surgery: Replacement of Medtronic Intrathecal Baclofen Pump due to frequency of required refills. Larger pump implanted
    Date of Surgery: September 2007

Being well organized is the key to less stressful appointments and interactions with your child’s physicians. We hope the suggestions provided help you to maximize your child’s appointments and provide a comprehensive summary that can be easily viewed by your child’s medical professionals.


WebMD Children’s Health: Cerebral Palsy – When to Call a Doctor

Was Your Child's CP Preventable?