|
It is often advised that parents should place their trust in the experts; yet what occurs when a parent notices something that the experts fail to? For Dr. Kimberly Idoko, the question has a deeply personal significance. Since she is a neurologist with board certification, a children's rights lawyer, a mother, and the author of The Miswired Child, Dr. Idoko has devoted her professional life to the study of the brain. However, when she observed slight developmental differences in her own daughter, her concerns at first received the usual reply: wait and see. Instead, she decided not to wait. Dr. Idoko explained on the Trust Me Mom podcast how the diagnosis of Rett syndrome in her daughter had changed her view of medicine, parental advocacy, early intervention, and the influence that parents can have when they realize that something is wrong with their child. Her main point is simple: the things that parents notice are important. A Childhood Experience That Shaped a Career in Medicine Dr. Idoko knew that she had wanted to be a doctor from a very early age. She was shot when she was four and remained in the hospital for a long time; the incident was traumatic but it did, however, give her an early feeling of purpose. She used to think that the experience had been terrible and wished that it could have been made better for other people, after which medicine was the only career she ever seriously considered. Her interest in neurology developed later. While at college she was suddenly given a research fellowship which put her in a brain laboratory. She became fascinated by the complexity of the nervous system and eventually carried out studies in molecular, cellular, and developmental biology with a special focus on neurobiology at Yale. She first received training in neurosurgery before changing her field to neurology. Years later, that expertise would take on a deeply personal significance. When a Neurologist Was Told to “Wait and See” Dr. Idoko gave birth to her first child while she was undergoing training in neurology; even though her son was not definitely a difficult baby in terms of temperament, his development proceeded in a predictable manner. Five years later the girl was born. When Dr. Idoko was looking at her daughter, she noticed a slight asymmetry in the way she moved, and this was when she was about eight months old. Since she was a neurologist, she thought the difference should be given attention. She mentioned her concern to her daughter's pediatrician, but she felt that she was being seen as a mother who was unnecessarily worried rather than as a doctor who had noticed a neurological sign. The message could be summed up as saying that she looks good and that she will most likely be fine. The family waited for a while. Finally, Dr. Idoko concluded that she was no longer at ease with it and on her own took her daughter to a physical therapist, referring her for early intervention. Three years later, their daughter was found to have Rett's syndrome, a rare genetic neurological disorder. Looking back, Dr. Idoko believes it mattered that she acted before the diagnosis was final.  Why Early Intervention Matters Rett syndrome can have an effect on movement, on communication, on walking, on eating, on swallowing, and on other neurological functions. In some cases, children go through a period of developmental regression even though they had previously seemed to be developing normally. Physical therapy began for Dr. Idoko's daughter when she was eight months old. Today, she can walk. She does not speak and uses a speech-generating device which is operated by blinking. She also has epilepsy and this is managed by the use of medication. She goes to school, likes music and swimming, and still takes an active part in family life. For Dr. Idoko, her daughter's progress serves as an illustration of one of the main messages that she passes on to parents: Early intervention can help children to make the most of their developmental potential. It is not necessary for parents to wait for a diagnosis before requesting developmental support. I learned that parents could have a referral made for an early intervention evaluation under the federal Individuals with Disabilities Education Act, which is commonly known as IDEA. All states need to have a procedure for assessing young children who may need early intervention services. A parent who is worried about their child's development need not necessarily wait for a pediatrician to start the process. Dr. Idoko says that you should look for the early intervention program in your state and ask for an evaluation if you think there may be a problem. The assessment has the advantage of bringing in other trained professionals to look at the child, such as physical therapists, occupational therapists, and speech-language pathologists, since these people know about developmental milestones and can therefore decide if some extra support might be suitable. She stressed that the first assessment can be obtained free of charge, even though the cost and the structure of any subsequent services may differ according to the state and the family's circumstances. For those parents who have been asked to wait but who are still worried, it can be a source of empowerment simply to know that this option is available. Becoming a Lawyer to Fight for Her Daughter Dr. Idoko's experience in dealing with her daughter didn't end with early intervention. As the girl got older, the family had to deal with the complexities of special education, medical care, obtaining insurance approvals, costly treatments, and rejections. Eventually Dr. Idoko got frustrated by constantly being told 'no' without knowing how to contest those decisions. What she did was remarkable—she attended law school. She went to Stanford Law School in order to gain a better understanding of the legal systems relating to disability, education, healthcare, and children's rights, all while still practicing neurology and bringing up two children. The experience had served to reinforce once more a lesson that now influences her work: families often need more than just medical information; they also need to understand the systems they are dealing with. “What You’re Noticing Is Real” The book called The Miswired Child by Dr. Idoko was based on a number of such experiences. Its core message begins with validating something parents frequently question: The fact that you are observing in your child should be given some thought. Parents take a great deal of time spending with their children and therefore pick up on changes in their children's sleep, mode of speech, movement, attention, behavior, appetite, energy, and temperament which might not become apparent during a brief medical appointment. Dr. Idoko advises parents to take their healthcare provider when they notice a significant change and to continue pressing the matter even if they think their concerns have not been properly evaluated. Her point is not that parents must know the diagnosis, but that meaningful concerns deserve to be taken seriously and investigated. Parents should be able to say, This is different. I am seeing something. Please help me understand why.  What should parents do when they notice that something about their child’s development has changed, but their concerns are dismissed? In this episode of the Trust Me Mom podcast (Season 2, Episode 48, available on Apple Podcasts and Spotify), Ekaterina Konovalova speaks with Dr. Kimberly Idoko, a board-certified neurologist, children’s rights attorney, mother, and author of The Miswired Child. Dr. Idoko shares the personal experience that shaped her career in medicine and how becoming the mother of a child with Rett syndrome transformed the way she thinks about parental intuition, early intervention, medical advocacy, and navigating complex healthcare systems. Medication Should Be Part of a Larger Conversation
The topic of medication also came up, especially in the case of children showing symptoms related to attention, sleep, mood, behavior, or neurological function. Dr. Idoko made it clear that she is not against the use of medication. She gave antibiotics, insulin, medicines to prevent seizures, and other pharmaceuticals as examples of treatments which can be essential and life-changing. What she is concerned about is the use of medication without at the same time investigating what might be causing a child's symptoms. If medication is being considered, she encourages parents and healthcare providers to discuss questions such as:
Her emphasis was on intentionality. Medication may sometimes be necessary, but it should never become a substitute for asking why a child is struggling in the first place. Look at the Whole Child Dr. Idoko encourages parents to look beyond a single symptom and consider the full range of factors that can influence a child’s nervous system and development. Nutrition is only one piece of the picture. Sleep, physical activity, emotional safety, environmental stress, screen exposure, and other aspects of daily life can also affect how a child feels and functions. If a child suddenly struggles to concentrate, stops sleeping well, becomes unusually tired, or begins displaying new behavioral challenges, Dr. Idoko recommends approaching those changes with curiosity rather than assuming the behavior itself is the problem. “Food is not the only input. Physical activity is an input. Mental emotional safety is an input. Sleep is an input,” said Dr. Idoko. “How our kids sleep changes our kids’ lives. And so if there is a sleep issue, we really need to interrogate the why, find the cause, because again, it can be a symptom, the brain speaking.” The first step is simply to notice what has changed. The next is to find healthcare professionals who are willing to investigate those changes thoughtfully. Parents do not need to diagnose or treat these concerns on their own. Their role is to pay attention, share what they are seeing, and work with a medical team to determine what may need further evaluation. Be Careful With Supplements Because of the popularity of vitamins and supplements it might tempt concerned parents to start trying things on their own. Dr. Idoko strongly recommends that approach not be taken. The suggestion is to check whether or not the child really does need the supplement before administering it. In any individual child the intake of a nutrient being too low or too high may cause problems, and the quality of the supplements can differ, which is why professional advice is important. Instead of supposing that every child needs a general type of supplement, she says that one should consult qualified healthcare professionals to find out if testing is necessary and to decide what form of supplementation (if any) would be appropriate for that particular child. I asked if this even applied to vitamin C, which we are often encouraged to consume in high doses, and she said, “It applies to everything, my friends. It applies to everything. Because we’re talking about cells, and cells can be harmed by everything in too high supply.” She recommended Natal, which she described as a platform where parents can measure and track children’s micronutrient levels, including things like ferritin, vitamins B, A, E, C and D, selenium, zinc, and omega-3s. She said these levels can be measured and, in her view, should be checked at least annually. Small Changes Are More Sustainable Than an Overnight Overhaul Parents already carrying the weight of medical appointments, school concerns, work, family responsibilities, and uncertainty do not need another impossible standard. Dr. Idoko recommends starting small. If nutrition is one area a family wants to improve, that might mean replacing one highly processed snack with a whole-food option. Not the entire pantry. Not every meal. One snack. Once that change becomes normal, another change can follow. Over months, those small decisions can create a very different routine without requiring a family to completely redesign its life overnight. The same principle can apply to sleep routines, physical activity, screen habits, or other aspects of family life. Progress does not have to happen all at once. The Four Inputs Dr. Idoko Wants Parents to Consider Near the end of the conversation, Dr. Idoko summarized several areas she believes are important when thinking about a child’s health and nervous system: food, sleep, emotional safety, and physical activity. None exists in isolation. A child who is struggling deserves a broader look at what may be happening physically, emotionally, developmentally, and environmentally. - If sleep changes, ask why. - If attention changes, ask why. - If behavior suddenly changes, ask why. The answer may not be obvious. And the answer may not be something a parent can determine without professional support. But asking the question is where the process begins. Parents Are Not Powerless Dr. Idoko’s story is not a warning against trusting doctors. She is one. It is a reminder that parents belong in the conversation, not at the edges of it. Good care often depends on what happens when different kinds of knowledge are brought together. Doctors understand medicine. Therapists understand development. Teachers see how a child functions in a classroom. Parents know the child across days, months, moods, routines, and subtle changes that may never show up in a short appointment. When those perspectives are taken seriously together, families have a better chance of noticing problems early, asking clearer questions, and finding the right support sooner. A parent does not need to arrive with a diagnosis. They do not need to have the right medical vocabulary. And they should not have to walk into an appointment bracing for a fight. But when a parent keeps thinking, This is not my child’s normal, Dr. Idoko hopes they will trust that instinct enough to speak up. Notice what has changed. Ask what might be underneath it. Advocate, even when the first answer is wait and see. And keep asking until someone helps make sense of what you are seeing. This article reflects the experiences and perspectives shared by Dr. Kimberly Idoko during her Trust Me Mom interview and is intended for informational purposes only. Decisions about a child’s medical care, medication, testing, nutrition, or supplementation should be made with qualified healthcare professionals.
0 Comments
Leave a Reply. |
Resources |
Company |
|
