Getting the Most Out Of Consultations With Medical Specialists

Question:

My daughter has symptoms that might be related to Mito. She will be seen by a Mito Doc in a few months. We’re traveling a long way to get to this appointment and I want to make sure we use our time as efficiently as possible. What can I do to prepare for the appointment?

Answer:

Mitochondrial Disease specialists are pretty hard to come by, as you know. It isn’t unusual for families to drive for several hours, or even travel by airplane to be evaluated by a Mito Doc. Due to the considerable investments (time, money, energy) you’ve made for this appointment, it makes perfect sense that you’d like to make the most of your visit through careful planning.

Before the appointment:

If this is your first visit, there will most likely be lots of paperwork to fill out once you arrive. If you’ve just driven for five hours, perhaps leaving your house at 3am to arrive in time for an 8am appointment, you are probably sitting in a waiting room with a child who is off-schedule, cranky, tired, hungry, and in an unfamiliar place. Needless to say, this is not the best environment for you to attempt to recall your child’s birth, developmental and medical histories. Here are suggestions that can help you prepare for the appointment long before you set foot in the office or clinic:

· Why are you seeing this particular specialist? This might seem like a silly question, but the consulting doctor has never met your child or read her medical history. A two-to-three sentence summary of your child’s illness and the number one reason for your child’s referral to the specialist gets “top billing” as the very first sentence on the very first page of your notes. Mito is a complicated, multi-systemic disease, and the appointment may not be long enough for you to discuss every symptom your child has. Therefore, make sure you write down concerning signs/symptoms, but be sure to prioritize the issues and discuss the most important issues first. Don’t forget what the doctor’s specialty is, too. A pulmonologist may ask how your child does during meal times, but he is looking for symptoms related to breathing (such as choking, tiring out while eating, suck-swallow-breathe in-coordination for infants, unexplained weight loss that occurs with many respiratory and cardiac conditions.) A ten-minute description of meds tried for constipation will eat up appointment time and is not likely to make a major contribution to the assessment. Describing constipation when filling out the patient history form is sufficient.

· When describing symptoms, your word choices are very important. Medical professionals are trained to separate signs (objective) from symptoms (subjective.) When describing subjective symptoms, such as pain, dizziness, fatigue, and shortness of breath, try to back them up with observable, objective signs. Anything that can be seen, heard, felt, smelled, or measured in any way is considered “objective.” Pairing 2 or 3 objective signs with a subjective symptom helps define and validate the problem. Use words and short phrases when describing “chief complaints” as above, and give more detail later on in the questionnaire. Here are a few examples:

o Light-headedness is a common symptom. What sensations led you to this description? How does the symptom affect body functions? How often does the symptom occur and how does it impact quality of life? What makes the symptom better or worse? Here is one way to document this: “Suzy says that she “has bubbles in her head.” She grabs onto the person carrying her and resists being put down. When she tries to walk, she holds onto furniture and frequently falls to the left side. Sometimes she has a headache at the same time. Her face looks pale and her eyes look glassy. She refuses to eat and occasionally vomits after sudden movements, such as standing up quickly. Her pulse and blood pressure log shows that her pulse tends to be faster and BP lower when she is dizzy (bubbles in her head).

o Fatigue Suzy sleeps 14 hours each night and still requires 2 or 3 short naps during the day. We recently shortened her school day to 3 hours because Suzy was falling asleep at her desk and even in the noisy lunch room. In the afternoon, Suzy will choose to nap rather than ride her tricycle (her favorite activity.) When Suzy wakes up she is happy and playful but will not walk further than the length of our driveway (100 yards) and chooses quiet activities over active games that include running or jumping. She refuses to eat meat or crunchy food and tells me they make her “teeth get tired.”

· What tests, treatments, observations, and other documentation can you share with the consulting doctor in relation to your “chief complaint,” or most important reason for consulting this specialist? In your daughter’s case, it would be important for the specialist to receive copies of all medical testing that previous doctors have performed that led them to consider Mito as a diagnosis. As a parent, you are entitled to request and obtain your child’s medical records. The releasing clinic or hospital is permitted to charge you a “reasonable fee” to cover the costs of making the copies. However, a fee of 10 cents per page adds up quickly, which could leave you with a copying charge of hundreds of dollars in some cases. Generally, the “releasing” facility forwards medical records to the “requesting” facility free of charge. In addition, many specialists will send you a copy of the office notes, hospital discharge summary, labwork, test results, and other documents if you request them at the time that the treatment is being provided.

· If your child has several specialists, therapists, and other caregivers on her “medical team,” it would be helpful to assemble a care notebook to organize important information that is requested whenever your child sees a new clinician. At the very least, this care notebook should contain:

o A list of current diagnoses, symptoms, treatments, and therapies

o All allergies and intolerances to drugs, food, latex, adhesives, etc. and the reaction that has occurred in the past

o A list of all medication your child is taking, including all supplements, over-the-counter meds taken occasionally (such as pain relievers or stool softeners), prescription medication with the following information: drug name; dose; when taken; reason for the medication; doctor who prescribed it; date that the medication was started; any side-effects the medication causes (optional.)

o List of medical devices your child uses, complete with brand name, size, and other useful information (such as a G tube, trach tube, hearing aids, VNS, eyeglasses, intermittent bladder catheterization, leg braces, etc.)

o Phone numbers and contact information for nursing agency, equipment/infusion/oxygen suppliers, therapists, and any other services that are in place for your child’s care

Before you leave home, call your health insurance provider to confirm that the referral has been approved, and to determine if your insurance will cover labwork or diagnostic testing at the consulting doctor’s location, find out how many consultation visits have been approved, and the date that the prior authorization/referral paperwork will expire (if applicable.)

At the Appointment

If possible, arrange to have another adult present to tend to your child while you speak with the specialist. It is also a good idea to arrange for child care for siblings so that you can focus all your attention on your child’s appointment. Take notes, clarify what the doctor has told you (e.g.: “Dr. Smith, you found that Suzy’s bloodwork showed a low thyroid level and you prescribed 0.125mg of X and you want her to take one pill every day and have her blood tested again next month, is that correct?”) Some doctors will permit you to use a tape recorder to record the consultation rather than taking notes by hand. Be very careful, however, that the tape recorder remains in view and that everyone who enters the room is aware that you are recording the visit.

All of your record-gathering and note-taking helps the specialist pull the pieces together regarding your daughter’s care. However, if the doctor does not have access to old records until the time of the appointment, you will need to choose between asking questions and interacting with the specialist, or wait silently as she reads the notes you have obtained. If the specialist has received and reviewed your daughter’s medical records, it will help you to move forward in diagnosing your daughter’s illness rather than spending the first visit discussing her history in great detail rather than simply clarifying and answering specific questions. If her records are lengthy, however, it would be helpful to bring copies of the most important records to refer to during the appointment. (be sure that you have the original records at home and copies in your daughter’s binder, just in case a document walks away to be copied and never returns!)

Accurate, timely, and consistent communication between team members is vital! Your role is to be Mom, not the messenger who keeps all the specialists on the same page. Mito is an extremely complex, multi-systemic illness. Multiple family members are often affected by the same DNA mutation but exhibit vastly different symptoms and established medical diagnoses. For this reason, do not trust your memory to verbally relay one doctor’s diagnosis to a consulting doctor. If Dr. Smith asks what Dr. Jones said about a symptom, refer him to Dr. Jones’s report, give him Dr. Jones’s email address, office phone and pager number. For more information about maintaining accurate communication with doctors, please refer to www.jtwf.org.

Ask the specialist about her preferred method of communication; telephone, email, fax, etc. Many clinics and medical centers have introduced encrypted email systems that provide the patient and family with a convenient way to interact with the doctor while maintaining confidentiality. Request copies of the specialist’s consultation report, and the results of any labs and other tests at the time of the appt. Most practices have standard record release forms compliant with HIPAA regulations. If the clinic does not have release of information forms, create your own written request for records to be released to you.

After the Appointment

If your daughter’s appt with the Mito specialist results in a new or confirmed diagnosis, or dramatic changes in her treatment plan, be sure to give yourself time to digest the information. Confirmation of a serious health condition like Mito can be difficult to accept. Some parents battle with guilt upon learning that their child’s illness is genetic, especially maternally inherited. These feelings are a normal part of the grief process. It may be helpful to enlist psychological support from a therapist, social worker, or religious leaders such as a member of the clergy, Rabbi, or Church Elder.

If your daughter is old enough to understand some aspects of her condition, be sure to discuss it with her in a developmentally appropriate way. Preschool and school-age children often enjoy role playing with a doll or stuffed animal adapted with medical devices such as G tubes and IV’s. The Child Life Specialists at your local children’s hospital may have information for you regarding play therapy. If you cannot locate a Child Life Specialist in your area, consult www.childlife.org for contact information for Child Life Specialists across the US.

Record-keeping and Documentation Resources

Care Notebooks

Several different styles of pages to include in your or your child’s care notebook

“My Child’s Care: a Parent’s Notebook”

“Directions In My Child’s Care”

Health Care Forms and Records (a wide variety)

Daily Medication Logs

Documenting specific events and symptoms:

Multi-dimensional Assessment of Fatigue

Migraine diary

Cyclic Vomiting Syndrome episode diary for symptom tracking:

Multidimensional Assessment of Fatigue (MAF):