Advanced parenting, p.9
Advanced Parenting, page 9
Taking medication daily long-term without missing a dose is very challenging, and on average, adults only take it correctly half the time.3 Giving medication to children who have tantrums and preferences about taste and texture can be even more difficult. Even studies about medication adherence consider taking your medication 80 percent of the time to be good (though I’d encourage you to aim higher, as we know taking medication is required for it to work!). Failure to improve on medication sometimes leads to physicians using medications with more side effects or risk. We know that adhering to a regimen of medication is difficult for most people, and nonadherence at the population level is an enormous public health challenge.4 If you haven’t been able to give the medication to your child regularly, when you see your doctor for follow-up, be honest.
Once you are ready to begin, there are a few practical ways to make giving medication easier:
• Ensure that the schedule assigned by the doctor will work for your family. If something worries you, speak up. Avoid medications that need to be taken four times a day if at all possible. If the dosing schedule seems too frequent to be practical for your family, discuss alternatives with your child’s doctors.
• Ask for advice on administering the medication from a doctor, nurse, or pharmacist who knows the specifics of your child’s age, flavor and texture preferences, and the available medication options. Some children vigorously protest liquid medication and may do better with a tablet that can be crushed or a capsule that can be opened and given on a spoon of food.
• Learning how best to administer medication is important, especially for nasal sprays, eye drops, inhalers, and prescription creams. For conditions requiring emergency treatment like asthma, epilepsy, and food allergies, it’s essential that all caregivers have an opportunity to practice.
• Strategies to help you remember to take each dose include the following: Tie medicine time to a solid part of your routine (for example, before breakfast or when you brush your teeth). Use technology like phone alarms. Consider physical reminders like daily pill packs and stickers (one company called tooktake has cute ones where you remove a tab for every dose you take!). I have had kids keep their preventive asthma inhalers in their shoes for school so they have to take it out to put them on in the morning (and hopefully remember to then take their daily medication dose before leaving the house).
If your child is mature enough to begin assuming the responsibility for taking medication, great. But consider that supervision will likely be necessary for a long time, probably for years. I compare this to potty training. While your child may have been toilet trained by age three, you probably still encouraged them to go to the bathroom before big outings for much longer. If the medication is truly important, it requires adult supervision.
Referrals
Imagine that your baby has bad reflux and is very fussy. In a sleep-deprived haze you look to your pediatrician for guidance and are handed a slip of paper with a name and number. What does this mean?
Some parents interpret referrals as a brush-off. You might think, “My primary care doctor is sick of me.” Or maybe you’ll think, “My doctor must be stumped and has no idea,” or, “This must be really serious if we need to see a specialist.” I have found that even very savvy parents did not understand why they were being sent elsewhere.
All primary care physicians use referrals. It’s frequently said that primary care physicians know a little about a lot. I like to think we know a lot about a lot, but one of the most important things is that we know when we need help from other specialists.
Your pediatrician makes referrals for good reasons, and everyone on the team should know what they are. Some referrals are done to facilitate a diagnosis. Maybe your pediatrician suspects your fussy baby as having a milk-protein allergy but wants the gastroenterologist to weigh in and confirm the diagnosis before restricting the diet. If your child is older with significant reflux, the referral may be for endoscopy—a procedure to evaluate the anatomy and rule out a condition known as eosinophilic esophagitis. If your primary care doctor is concerned about this, the only way to firmly make the diagnosis is by a procedure done by a gastroenterologist. The specialist needs to look at the lining of the esophagus. These referrals are often intended as one-off consultations.
Other referrals are made for long-term management. If your child has inflammatory bowel disease, a congenital heart defect, or a combined diagnosis of ADHD and learning disabilities, the relevant specialist may own the care of the condition. This means the specialist will do an initial evaluation and send notes to your pediatrician for their reference, but the specialist will be in charge of the follow-up plan.
Whatever the reason, you need to know why you are being referred so you know what to expect. Who is going to help you? How will communication work? What will your appointment schedule look like? While it may initially feel dismissive to receive instructions that your issue is now some other doctor’s issue, I encourage you to see referrals as respectful. Your doctor thinks your problem requires additional resources and wants to help you get those resources. Understanding why you are being referred will also allow you to express your opinion. Perhaps you prefer that the gastroenterologist manage your child’s reflux long-term and the attention of a specialist and added visits feel helpful to your family. Or maybe you would prefer your pediatrician manage the reflux and send you back to the specialist only if reevaluation of the medical issue is necessary due to your child’s specific symptoms. Understanding the way referrals work can allow you to express your preferences.
When your child is referred, I encourage you to ask a lot of questions. Some are very important. In particular:
• How soon should the appointment happen?
• Is this specific person ideal, or would any physician in this specialty suffice?
• What will happen going forward?
• If you have an emergency, who should you call? The pediatrician, the specialist, urgent care, or the ER?
• How will the specialist and the doctor communicate?
• Who will renew the medication and handle relevant school forms?
Understanding how the specialist fits into your care will also help you ensure you pick the right one. For a one-off evaluation to access testing—for example, a child with a murmur that sounds benign but warrants further investigation with an echocardiogram—it may matter less who the specialist is. In this situation, you should prioritize convenience and ease of communication with the primary doctor. For a one-off diagnostic evaluation—for example, a child with concern for intoeing who is recommended to see an orthopedist—especially when the urgency is low, it’s worth waiting for or traveling to see the best-qualified individual. Since it’s likely to be only one visit, the location of the specialist will not matter so much.
When you are referred for long-term management or a specialized procedure, the choice of specialist becomes a more important decision. Ask your doctor and the specialist:
• How does the specialist’s expertise relate to your issue?
• What volume of this type of problem does the specialist see?
• Is this the type of problem that will require frequent visits, where you should consider travel convenience?
Specialty Centers
Studies show that in many areas of specialty surgery, outcomes for patients are better in high-volume centers. When the surgeon and hospital teams have more experience, it’s no surprise that there will be better outcomes and fewer errors.5 This matters most for the most complex surgeries, such as surgeries to correct higher complexity congenital heart defects. In these situations, you should strongly consider the most qualified specialist, even if the location is somewhat inconvenient.
Subspecialized multidisciplinary clinics are increasingly popping up to meet the needs of children with complex medical conditions. For example, a clinic designed for children with cerebral palsy may include a general pediatrician, an orthopedist, a neurologist, and a pediatric rehabilitation specialist. These physicians would work collaboratively to help a family decide a plan. When there is a good match between a child’s needs and the design of the clinic, these clinics can combine several referrals into one place, providing a “one-stop shop.” Though it can make for a long, tiring day, it’s much easier to take off a day of work if you can have four appointments done in one day than to try and arrange four separate days off work. Additionally, having all the relevant specialists in one room can enrich the conversation, enabling families to access a better quality of care. Without a combined clinic, a family might see the pediatric rehabilitation specialist who recommends braces and then later see an orthopedist who recommends surgery and feel lost and confused. When the specialists work in a team setting, they can negotiate a plan together with a family’s input, agreeing to, say, a plan of trying bracing for six months and anticipating surgery in a year if no improvement. When care is centralized this way, it may be easier for the care team to communicate and keep track of records and your child’s medical history. Additionally, these clinics are often housed within academic centers, and the specialists who have a vested interest in just your challenge can find it easier to keep up-to-date with the latest research.
Centers of excellence are common for conditions like cystic fibrosis, diabetes, inflammatory bowel disease, and children with a history of extremely preterm birth. These conditions often require coordinated access to multiple specialists like pulmonology, nutrition, gastroenterology, endocrinology, and development. Additionally, many genetic conditions have centers where children with trisomy 21, Williams syndrome, Turner’s syndrome, Prader-Willi, or others may be seen exclusively. In their local community, many of these children may be the only child with this diagnosis their pediatrician or school has seen, but these centers gather hundreds of children and learn from their experiences in a way that can promote the quality of medical care and create a sense of community.
As a survivor of pediatric cancer, I continued to travel to North Carolina to see my pediatric oncologist for regular follow-ups until my midthirties. After having chemotherapy and radiation at a young age, I need routine testing to monitor for complications due to the toxicities of the therapies I received. I also need surveillance for secondary malignancies. As a young adult, I could have tried to manage moving this care to Cambridge, Massachusetts, when in college, Spain when I studied abroad, or New York after I graduated. But the specialized survivorship program in my home state of North Carolina had advantages, including plans and protocols in place to ensure all the follow-ups happened. They had all my records and imaging for reference, and I knew if I tried to transition to a regular doctor, all the work of keeping that organized would fall on me.
For many families, it’s worth considering whether the cost, stress, and inconvenience of traveling for care is worth the benefit. If you can find the right fit of a specialized clinic, it may make your life easier and improve the quality of care, even if it’s distant from your home. To find a clinic that fits your family’s needs, you can ask your doctor, investigate what the bigger children’s hospitals in your area offer, learn from nonprofits devoted to research and advocacy for your child’s condition, or seek support from a family-to-family health information center locally through Family Voices. This type of research may be intimidating, but I’ll go into more detail about how to make it more manageable later in Chapter 13.
Multiple Cooks in the Kitchen
Eating and growing is the primary metabolic demand for a little baby. So, when their heart function is low, as it is for babies with congenital heart disease, they often have difficulty eating due to fatigue. When they can’t eat well, they get insufficient calories to grow bigger and stronger. These children end up seeing a gastroenterologist to help maximize calories and optimize feeding. Then the cardiologists and cardiac surgeons think about the best time to do corrective surgery and how to adjust medications to improve heart function. But frequently, the parents end up confused. The gastroenterologist tells them, “We can’t improve your child’s feeding until your child gets the heart intervention needed to get strong enough to eat more.” Then the cardiologist says, “Go back to the gastroenterologist; we can’t do a heart intervention until your child reaches a certain size.” And the parents would cry and come to see me feeling hopeless.
Because my complex-care practice had more time with families and more nursing and social work support, I could fully explore the details of the situation to help ensure that these babies were really getting the maximum nutrition support possible. Often I would advocate for the family by getting the gastroenterologist and the cardiologist to speak with each other directly. Without a medical quarterback, these families would ping-pong between the gastroenterologist and the cardiologist. When I could support improved communication, all the specialists could come together with the family and come up with a plan to meet everyone’s needs. Often this required buy-in from everyone; my team would help the family get more hours of skilled nursing support to facilitate the feeds at home, gastroenterology would come up with a creative way to get more nutrition into the child, and cardiology would either recommend a medication to promote the child’s stamina or reduce the weight requirement for surgery to something more within reach.
When many doctors are involved in managing an issue, inevitably there will be disagreements. Each physician approaches the child’s situation with his or her own perspective grounded in their medical expertise, their values, and their personalities. Sometimes medicine is more of an art than a science, and two physicians may make two different plans for the same child based on the same data. While it can feel black and white—one doctor must be right and the other must be wrong—truthfully, the answer is more in the gray.
When the stakeholders in your child’s care seem to disagree about the best way to move forward, encouraging an open discussion of the issues at hand is best. Often, there is a simple explanation; a doctor may admit that the other plan is equally appropriate or even better than the one he suggested. Other times, you may learn that one doctor had a piece of data the other didn’t, and that piece of information, whether it was a facet of the history or a lab or imaging result, led him to make the decision for a good reason. Most physicians went into medicine to help people, and when you push back on the plan they suggest with a constructive intent—to clarify their thinking or understand why someone disagrees—often you may find they are willing to help. Sometimes you’ll see that the gray zone allows you as a parent to make the decision based on your values and priorities.
The same issue applies when educators or mental health professionals are collaborating in your child’s care. If doctor-to-doctor communication can be difficult, communication with teachers and therapists can be even more challenging. These professionals sometimes have no time blocked from their weekly schedule for administrative tasks like communicating with an outside doctor. They often do not share a language for how they think about the child’s condition.
Imagine Marnie, the single parent to a vivacious and rambunctious young boy, Nate, who carries a diagnosis of attention deficit hyperactivity disorder. Prior to making the diagnosis, Nate had an intensive evaluation with a child-development specialist who helped exclude the possibility of comorbid learning disabilities or other mental health issues like anxiety. For Nate’s ongoing care, Marnie gets feedback from his teachers, who primarily want him to learn and participate productively in the classroom setting. Nate is also working with an occupational therapist outside of the school system who is supporting his executive function skills to optimize his day-to-day functioning—organizing his homework and getting himself out the door in the morning. Marnie gets feedback from these two on a weekly basis, and then every two to three months she sees the pediatrician who is primarily charged with renewing or adjusting Nate’s medication. This plan seems to be going well, until all of a sudden, it’s not.
Nate is thriving at home and his work with the private occupational therapist has him accomplishing tasks he previously struggled with, but at school the teacher is seeing something different. After lunch, Nate loses focus and acts out, distracting the class. The teacher tried a few ways to improve his behavior, but the principal had to get involved when an episode escalated. The teacher feels overall that Marnie should consider more medication or a different dose to support him more appropriately in the afternoon. Now Marnie, in addition to reacting to this news as any parent might—maybe feeling disappointed, defensive, or upset—also has to serve as Nate’s quarterback, communicating what’s happening at school with the occupational therapist and doctor involved.
To support Marnie in this work, I recommend the following:
• Keep notes. It’s helpful to keep a journal of the feedback. Just a date with a brief summary of their remarks will likely be adequate, but when things are going in the wrong direction, make your notes more detailed with direct quotes.
• Ask questions to learn as much information as you can. Especially if you aren’t at school, you may not know if the curriculum has shifted in a way that your child is struggling with or if there is a social situation with peers complicating things. Even simple considerations like how his eating is at lunch may be relevant.
• When people involved with your child disagree, encourage them to speak directly. If the occupational therapist insists that Nate is doing well on his current medication, maybe they can ask the teacher what techniques are used at school to help his behavior and make some specific recommendations.
