Advanced Parenting, page 14
If your child’s condition is rare or doesn’t fit a specific organization well, identifying a scientific or educational leader in the field of interest can help. You could subscribe to their newsletter, attend their conferences or talks, or follow them on social media to get a curated take on what’s relevant. In some circumstances, it may be helpful to place a search alert within your search engine of choice to alert you of news articles about the condition.
Parents can shift their mindset from being overwhelmed to staying curious. New treatments will come out and new studies will cause prior treatments to go out of favor. As a caregiving parent, you will find that you can always learn more—about what the diagnosis means for your child now or what it will mean, or a new way to process and understand why it happened in the first place.
Keep in mind, you aren’t solely responsible for following updates in studies and treatment protocols. Part of the point of follow-up visits is to allow your doctor to review your plan of care and consider if the approach should change based on how your child is doing or how the body of knowledge about the condition has evolved.
Research Can Lead to Better Care
Consider Denise, a child who has been exhibiting worsening behavioral outbursts and poor sleep over the past few months. When her grandmother, her primary caregiver, takes her to the doctor, she receives a diagnosis of ear infection and is prescribed antibiotics, but despite treatment, the original complaints continue: behavioral outbursts and poor sleep. After a few weeks, the grandmother hires a sleep consultant out of frustration. After applying some of the consultant’s tips, there is some mild improvement in the quantity of sleep, but the behavior problems continue.
Eventually at a teacher conference, Denise’s preschool teacher brings up her propensity to mouth breathe and asks if the grandmother has ever talked to her pediatrician about sleep apnea. After this, the grandmother sets up an appointment and gets a referral for a sleep study. Then she learns, finally, nearly a year into this struggle, that the difficulties Denise has faced are likely due to sleep apnea and are fixable with a surgery to remove the tonsils and adenoids.
Was the diagnosis of an ear infection wrong? If she had fever and a bulging infection behind her ear, no. But it was incomplete. Perhaps if the pediatrician and caregiver had discussed Denise’s broader medical history, the conversation would have revealed her loud snoring over a period of months. If the snoring was mentioned, the doctor might have discovered underlying sleep apnea earlier. The ear infection is related—likely the tonsils and adenoids led to poor drainage of the inner ear—but treating the infection did not help the root cause. Ideally, a thorough doctor would screen for sleep apnea, ask the right questions to get a thorough history, and provide more comprehensive care, rather than putting this burden on the caregiver.
But often the presenting questions, concerns, and appearance of the child drive the diagnosis and plan and in the real world, and things do fall through the cracks. Learning more about behavior outbursts and poor sleep might have led to a faster diagnosis for this family. The grandmother could have read books or articles on behavior or children’s sleep, many of which bring up obstructive sleep apnea. If she showed up to that first appointment asking if snoring could be contributing to the behavior problems or focused on the longer-term duration of symptoms, maybe the referral for a sleep study would have been made months earlier.
Though undoubtedly this reflects problems with our health-care system—it should not depend so much on your advocacy—being a knowledgeable patient can get you better care. Doing research on your child’s condition will help you ask better questions and emphasize the parts of your child’s story that are most important.
Next Steps in Due Diligence
Let’s assume you start your journey by asking all of the above questions. What do you do next? That varies, depending on the circumstances. Perhaps your child’s school or childcare center raises a concern. Approaching your pediatrician, as we discussed above, is often the best next step. Your pediatrician can help you put this concern in the context of your child’s big picture and may offer different resources. You might be thinking, “But wait, my pediatrician isn’t an educational expert.” They may not be, but they are a great resource for pediatric health, and may be able to see issues that don’t occur to an educational team.
Let’s consider this issue through the lens of a common example. Your child’s school has informed you they suspect your daughter has dyslexia. When you consult your pediatrician about this, they may ask questions about her mental health, since children with dyslexia are known to have a higher likelihood of attention deficit hyperactivity disorder (ADHD). Sometimes children with this diagnosis can have trouble coping with the stress of learning in a different way, such that they develop secondary struggles with self-esteem or mood. Your pediatrician might perform or recommend an eye exam to check that the issue isn’t physiological; perhaps your child has vision issues and doesn’t have dyslexia at all. This is research. It gets added to your knowledge bank so that you can put together the best care plan for your child.
As much as a physician’s input is helpful, it’s also a good idea to take concerns from the pediatrician to your school and childcare team. These professionals spend a lot of time with your child and know typical development well. They can often add more information and an important perspective to help you arrive at the correct diagnosis. Maybe they have seen other symptoms occurring at school and have not yet informed you. Maybe they have wondered if this was an issue and wanted to discuss it with you. Perhaps they think your doctor is wrong because they have observed evidence to the contrary. Whatever you learn may help your child. Once a treatment plan is started, the school should be informed so they can monitor your child’s progress.
When Information Is Misinformation
My friend, a scientist (this fact will be important), had a daughter who experienced a stroke while in utero during her pregnancy. After her daughter’s birth, the newborn was diagnosed with cerebral palsy. Amid her postpartum haze, my friend tried to learn as much as she could about neonatal stroke and the related challenges to prepare for parenting a child with a disability. She found articles about strokes and cerebral palsy leading to weakness and coordination difficulties. She learned a lot about the nutrition and developmental difficulties and risk of seizures her daughter might have. After she consumed a lot of content from big reputable websites, she continued to seek more information and joined several online groups for parents of kids who had experienced stroke.
In these groups she read about stem cell infusions as a therapy option for cerebral palsy. She found a few small clinical trials using stem cells to heal the damaged brain and spinal tissue of cerebral palsy patients. However, she also encountered nonmedical providers promising to “cure” her daughter’s cerebral palsy with ten-thousand-dollar treatments not covered by insurance or done in conjunction with major medical centers. As she dove deeper, she noticed these websites promising a “cure” were using fear-based marketing techniques. The sites used threatening language, telling parents, “If you don’t do this, your child will suffer.” These websites featured many convincing testimonials and suggested that she was unwise to trust the advice from her physician. She was drawn into the promise of a cure and felt emotional and confused about what to do. In the end, she finally dismissed the entire idea because, as she put it, her “rational brain” spoke up. She would continue to follow the research and ask her daughter’s team for updates on possible treatments, but not try something still investigational outside of a monitored and ethically reviewed clinical research trial.
In many ways, her experience reflects the most dangerous sort of misinformation. Medicine does involve a gray area; progress is always being made and early research is promising, but clinical research does take time. Without completing the studies and seeing the final results, we can’t know the safest and best choice for a child, especially when potential treatments are invasive. In the meantime, enterprising individuals will prey on desperate parents, guilt-tripping them into making an expensive and potentially dangerous decision.
The internet is a great equalizer, and search engines have changed the world as we know it. We parents have so much information at our fingertips, and it’s important to apply critical thinking skills when we go online. We all need to be mindful that the algorithms that drive search engines heavily rely on popularity and technical website factors that correlate with site reliability. We can’t always count on this to present the most valuable, accurate information.
A search for one of the most common medications used for children’s constipation, polyethylene glycol (Miralax), will lead you down a rabbit hole of misinformation. The top-ranked articles tend to have frightening claims on the dangers of the medication. Much of the content shown represents opinion, not fact, and is ranked prominently simply because of click frequency. Scary articles often provoke a response that promotes their ranking in search engine algorithms. Other content may be sponsored by competing products. As you do your research, how do you know which sources to trust? Unfortunately, it’s not easy.
I suggest you start with the recommended resources from your diagnostic team. But you may want other additional sources—often families feel that doctors have bias due to the pharmaceutical industry or due to inertia and the relatively slow change to practice when newer and better treatments emerge. As you expand to other sources, you should develop a method by which you evaluate your content. If you can answer these three main questions—who wrote this? when? and can it be corroborated with other sources?—you’ll be off to a good start ensuring its legitimacy.1
• Who is the author? Do they have a conflict of interest in presenting this information? Does the author have credibility? Do you agree with other parts of their content? Are their sources referenced? Is this someone’s opinion or is the advice based on research?
• When was the article written? Is the information current or outdated?
• Can you corroborate? Are there other sources that agree? If you can only find one person concerned about something, there may be a reason no one else seems concerned.
The Benefits of Social Networks—On- and Offline
No two families travel the same path, but witnessing another family’s experience may help you too. By definition, doctors and teachers center their assessment and plan on what they observe in the clinic or at school, not what happens at home. Your friends and your child’s peers share the context of your broader life. Other family members, colleagues, and support-network members can be especially useful.
Andy was born after a particularly difficult pregnancy, one complicated by infection with cytomegalovirus, one of the viruses that causes infectious mononucleosis, also known as “mono.” As a result of his mother’s infection, Andy had viral meningitis while in utero. He was then born preterm, underweight, and with a neurological injury. His first year of life had been spent mostly in the hospital fighting respiratory infections and attempting to find a feeding program he would tolerate. Now three years old, he was more stable, but due to his brain injury, his development had stalled around the four-month milestones, he could not sit without support, and often had difficulty tolerating his oral secretions.
Andy’s mother faced several barriers to care. She was young and lived in poverty in the Bronx. The only housing available to her was a family shelter, and she had literacy limitations and terrible insurance. Things that are simple for many were difficult for her. She had inadequate access to transportation and childcare; picking up a prescription refill or coming to an appointment were real hardships.
When Andy started preschool, his mother was quick to take advantage of the respite this childcare offered—she could use that time to learn about his condition, follow up with his care providers, and discuss his diagnosis with other parents. For the first time, Andy and his mother were part of a community of similarly abled children and families. She was savvy enough to observe his classmates in detail, asking their parents and caregivers questions and learning from them. She also learned a lot from the educators and therapists involved in his care at school.
She came back to my office, with increasing confidence and a long list of questions. She had ideas for improving his care. She had seen a collapsible wheelchair that was more practical for their life in the Bronx. She had heard that a specific brand of stander (a machine designed to support a child with weakness standing upright) was easier to use than the one they had been given. She had learned about blenderized diets—in which whole foods are blended and delivered by feeding tube rather than using prepackaged formulas—and wanted to give it a try.
Her son’s new school had broadened her awareness of what was possible and provided her with a community of individuals to learn from. While the logistics of getting him to school were complex, and often it was frustrating when other families seemed to have it better or easier, these personal connections she made at school showed her different ways that life could look for a child with disabilities. These new relationships provided her family with immediate, tangible benefits, and connecting with others outside her home more regularly notably lightened her mood.
In the previous section, I suggested you consult both your child’s pediatrician and school system; Andy’s situation reminds us that connecting with other families can help too. While I, as a physician, do my best to anticipate needs and do research on behalf of my patients, there are limits to my ability to assist. At the time I was treating Andy, all of my patients were on public assistance and as a result, I hadn’t seen the sort of equipment that was available with “good” insurance. I had never been to his home to see his equipment in action. I made assumptions about what would be the easiest to feed him for a family on a tight budget. All this to say, the school community helped this family in a way I couldn’t.
Other parents can be an invaluable resource. You can benefit from talking to parents who are facing similar barriers to care and dealing with similar challenges day to day. Side by side, parents can imagine other possibilities for their children and better their approaches. Once parents learn about these opportunities, they can ask for support from their care team in making them happen.
The underestimated benefit of these peer supports is connection. Even with all the data and advice available to you, just speaking with another human who has been in your shoes can be more helpful than a Google search. Other parents can be especially helpful if your child has been diagnosed with something unfamiliar to you.
If you’re having trouble finding someone or a group of people to connect with, you can ask your care team to connect you with another family. They may be able to select someone who is particularly a good fit. These local partnerships can be invaluable, because inevitably there will be a pharmacy, school, therapist, babysitter, or camp that comes up as a great resource. Many families who provide this advice and mentorship find the experience fulfilling as well.
If your child has been diagnosed with anything from ADHD to cancer, it’s very likely you have turned to social media for connection, support, and advice. As a cancer survivor and a parent, I found great resources online that helped in a way my family and friends could not. Online support groups can filter and curate the news and relevant research. By learning what other people are asking about, you can anticipate things that may not have been on your radar. If you are facing something uncommon or you live in a rural area, social media can bring you together with other parents you might never have had the opportunity to meet.
Beyond that, learning from others’ lived experience is one of the most valuable kinds of research; but remember, it is by nature anecdotal. In the scientific method, we try to base our decisions on larger groups because we know how much variation occurs naturally. An individual’s experience will become their truth and will not necessarily be your destiny. Two individuals with the same diagnosis can travel different paths. Grounding the experience of others in the bigger picture is important.
It’s also important to be mindful when interacting with these groups, as some people can have bias. All of our experiences color how we see the world. If my child has moderate asthma and I seek support in a caregiver chat room, I may encounter a parent of a child with severe asthma. She may give me advice based on her experience that may or may not apply to my child. She may say, for example, that the medication my doctor recommended is no good—it did not help her child, and he needed a stronger one. But this advice is out of context; she doesn’t have all the information my doctor had about my child’s condition when she recommended that drug. This well-intentioned advice may be incorrect for my child and undermine my confidence. The loudest and most engaged participants often have been through traumatic experiences themselves. You can learn from these experiences, but some of the judgments they make can be flawed, especially when they don’t know your story and you don’t fully know theirs. Even if their doctor didn’t help or the typical treatments didn’t work for them, it doesn’t mean your child will necessarily have the same experience.
As we discussed at the beginning of the chapter, be wary of what you find online. The larger social media groups often have group dynamics and politics in play. Some members may have an agenda such as selling a product targeted at other parents. Those who have had particularly difficult experiences might be overrepresented, as those who have not had trouble may spend less time engaging online. Some may see things from a different perspective than you—perhaps they have more or less resources available or other goals for their children. As you engage in these groups, check in with yourself to see if you are finding the benefit exceeds the confusion or if it’s adding stress, and be selective.
