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Common Pediatric Endocrinology Questions and Answers
Families often have questions about growth, puberty, hormones, and endocrine conditions. Below are answers to some of the most common pediatric endocrinology questions we receive.
Frequently Asked Questions
Understanding the Diagnosis
"What does this diagnosis mean for my child?"
A DSD diagnosis means your child’s sexual development happened differently than typical, but it doesn’t mean they’re sick or broken. DSDs occur in about 1 in 2,000 births and can range from very mild differences to more complex conditions requiring ongoing care. Most children with DSD live completely everyday, healthy lives. The diagnosis gives us a roadmap for understanding your child’s biology and planning appropriate care.
"Is this my fault? Did I do something wrong during pregnancy?"
Not. DSDs are naturally occurring variations in human development. They’re not caused by anything you did or didn’t do during pregnancy – no medications, foods, stress, or activities cause these conditions. They’re simply part of the natural diversity of human biology, like having different eye colors or heights.
"I'm pregnant and was told my baby may have a DSD. What should I do next?"
Prenatal findings can sometimes suggest differences in sexual development, but they rarely tell the complete story. The most important step is connecting with a specialist who understands both the medical and emotional aspects of DSD. I offer virtual consultations to help expectant parents understand what these findings might mean, what testing is appropriate, and how to prepare thoughtfully for delivery without panic.
"My doctor told me my child has a DSD. What do I do now?"
First, take a breath. Hearing this can feel overwhelming, but a DSD diagnosis doesn’t mean your child is in danger. The next step is getting accurate, personalized information about your child’s specific condition. I provide second opinions, clear explanations in plain language, and help coordinate appropriate testing and follow-up care, no matter where you live.
"What kinds of tests does my child need?"
This depends entirely on your child’s symptoms and suspected condition. Standard tests include hormone blood work, genetic testing, and imaging like ultrasounds. As part of my consultations, I help you understand which tests are essential for your child, avoid redundant testing, and interpret results clearly, even if another doctor ordered them. I also coordinate lab work through Quest or your local facilities when appropriate.
"Can you help if I already have test results but don't understand them?"
Absolutely. Many families come to me after receiving genetic reports, hormone levels, or imaging results that feel confusing or frightening. I review all your existing records and explain them in terms you can understand. Together, we create a clear plan for next steps – whether that’s additional testing, reassurance, or connecting with specialists in your area.
"My baby has XXY chromosomes. What does that mean?"
XXY chromosomes typically indicate Klinefelter syndrome. This usually doesn’t affect genital development at birth, but can influence hormone levels and fertility later in life. Every child with XXY is unique – some may need hormone support during puberty, while others develop completely normally on their own. I help you understand what to expect and create an appropriate monitoring plan as your child grows.
"My doctor says my daughter has testes. What does this mean?"
This can be surprising and confusing. In some DSD conditions, people with typical female external anatomy have internal testes instead of ovaries. This occurs in conditions like androgen insensitivity syndrome. The essential things to understand are: what this means for your daughter’s health, whether the testes pose any medical risks, and what options exist for management. I provide a detailed evaluation and help you understand all your choices, including whether and when surgery might be recommended.
Gender, Identity, and Making Decisions
"How do I know if my child is a boy or a girl?"
This is one of the most emotionally challenging questions parents face. Sex development is complex, involving chromosomes, anatomy, hormones, and – later in life – personal identity. Rather than rushing to assign labels, we focus first on understanding your child’s biology and health needs. I help you navigate this process respectfully, using current science while honoring your family’s values and giving your child space to grow into their own identity.
"I'm not sure if my baby is a boy or a girl. How do we decide what to call them?"
When there’s uncertainty about a baby’s sex at birth, it’s completely okay to pause and gather more information before making decisions. Choose a gender-neutral name temporarily, or select something that works for either direction. I help guide you through early testing, explain what we can learn from specialists, and provide support for communicating with loved ones while protecting your baby’s dignity and privacy.
"What name or gender should go on my baby's birth certificate?"
This can feel like an urgent decision, but you have options. Some states allow temporary designations or amendments, while others require early choices. I help you understand their legal options, review their child’s biology and prognosis, and make the best decision with available information, knowing that perspectives may evolve as your child grows.
"Can we change the birth certificate later if needed?"
Yes, in most states, birth certificates can be amended later in life to reflect updated understanding of gender or legal sex designation. Each state has different requirements, but changes are possible. I help you understand the legal pathways and gather appropriate documentation, including medical letters when necessary.
"My child likes to wear clothes associated with the opposite gender. Does this mean they have a DSD?"
Gender expression through clothing preferences is entirely regular and separate from having a DSD. Many children explore identity through play and dress regardless of their biology. However, if you have concerns about physical development, puberty timing, or identity questions, I can help determine whether further evaluation is appropriate. I support you navigating both DSD and gender identity concerns with equal care and expertise.
"Is this the same as being transgender?"
This can be surprising and confusing. In some DSD conditions, people with typical female external anatomy have internal testes instead of ovaries. This occurs in conditions like androgen insensitivity syndrome. The essential things to understand are: what this means for your daughter’s health, whether the testes pose any medical risks, and what options exist for management. I provide a detailed evaluation and help you understand all your choices, including whether and when surgery might be recommended.
Puberty, Fertility, and Growing Up
"Will my child go through puberty normally?"
This depends on your child’s specific DSD and how their body produces or responds to hormones. Some children go through typical puberty on their own, while others may need hormone support or careful monitoring. I offer consultations to help you understand what to expect for your child’s situation and when to check in with specialists, so any decisions around puberty can be made thoughtfully and in your child’s best interest.
"Will my child be able to have children in the future?"
Fertility possibilities vary significantly by DSD type. Some individuals may have the potential for biological children, while others may not. The good news is that fertility preservation options, like freezing sperm or gonadal tissue, continue to advance. I help you understand current options, what’s realistic for their child’s condition, and when it’s appropriate to consider fertility planning – even if parenthood is far in the future.
"Do we need to have surgery right away?"
In most cases, no. Very few DSD-related surgeries are medically urgent. Decisions about surgery – especially those affecting gender appearance – should be made carefully with time, complete information, and often input from your child as they grow. My role is to clearly explain all options, ensure you understand the associated risks and benefits, and connect you with trusted surgical teams if and when that time comes.
"What kind of follow-up care does my child need long-term?"
Most children with DSD benefit from periodic check-ins to monitor hormones, growth, puberty progression, and emotional well-being. Some individuals may require ongoing care from specialists, such as endocrinologists, urologists, or mental health professionals. I help create personalized long-term care plans that specify what to monitor, when to check in, and how to coordinate between different providers, regardless of where you live.
"Will my child need care into adulthood?"
Usually yes, though it may not be frequent. Transitioning to adult healthcare is essential, especially if your child needs ongoing hormone therapy or has questions about fertility, relationships, or identity. I support you through this transition and work directly with older teens and young adults to prepare them for managing their medical care confidently.
"My older child or teenager just received a DSD diagnosis. What should I say to them?"
Start with honesty and reassurance. Teens often appreciate being included in conversations about their bodies and health, rather than being protected from information. I work with you to prepare age-appropriate explanations, anticipate common emotional reactions, and support your teen in asking their questions during virtual consultations. Many teens find it empowering to understand their biology and participate in their own care decisions.
Talking to Others
"Should I tell my friends or family about the diagnosis?"
This is deeply personal, and there’s no correct answer for everyone. Some families find support in sharing with trusted loved ones, while others prefer to keep medical information private. I help you think through the pros and cons, prepare for different reactions, and decide how to communicate in ways that protect your child’s privacy while reducing isolation and stigma for your family.
"How do I explain this to my other children?"
Honest, age-appropriate conversations are usually best. Siblings often notice more than we expect and can become confused or worried if completely excluded. I provide guidance on how to talk with siblings, young or teenage, so they feel included but not overwhelmed. The goal is to help them understand that their sibling is the same person they’ve always been, with some medical details that require special care.
"We come from a deeply religious or traditional background. How do we reconcile this with what the doctors are saying?"
This is sensitive, and I work with you from all faiths and cultural backgrounds. Many religious traditions have room for complexity and diversity, even if specific language for DSD doesn’t exist yet. I help bridge the gap between medical understanding and spiritual frameworks in ways that honor both your beliefs and your child’s health needs. Often, speaking with religious leaders who understand medical complexity can be helpful.
"I'm worried that others in our extended family won't understand. What should I say?"
You’re not alone in this concern. Many families worry about judgment or misunderstanding from relatives. I help create communication strategies – what to share, how much detail to provide, and how to set boundaries that protect your child. We focus on giving you tools to educate others if you choose, while maintaining your family’s privacy and dignity.
"What questions should I be asking my doctor if my child may have a DSD?"
Great questions to start with:
- What testing has been done, and what do the results show?
- What are the possible diagnoses we’re considering?
- What are the next steps – additional labs, imaging, or specialist referrals?
- Is there any medical urgency to make decisions right now?
- What can we expect for our child’s health and development?
Emotions, Mental Health, and Support
"Is it normal to feel this overwhelmed?"
Completely normal. The early days and weeks after a DSD diagnosis often feel chaotic and frightening. You’re processing medical information, making decisions you never expected to face, and worrying about your child’s future. These feelings are valid and shared by virtually every family in your situation. It’s essential to get both medical and emotional support during this time.
"I feel anxious and overwhelmed. What resources are there for me as a parent?"
Beyond our consultations, I connect families to support groups, therapists experienced with DSD, and reading materials that are empowering rather than frightening. Many parents find that talking with other families who have walked this path provides comfort and practical guidance that complements medical care. You don’t have to navigate this alone, and seeking support shows strength, not weakness.
"Will my child need therapy?"
Not automatically, but some children benefit greatly from counseling, especially during puberty or major transitions. I help screen for emotional needs, make referrals to mental health providers who understand DSD, and support you in recognizing signs when extra support might help. The goal is to build resilience and self-advocacy skills that serve your child throughout their life.
"Do DSDs affect brain development or intelligence?"
Most DSDs do not impact brain development, learning, or intelligence in any way. However, some rare genetic conditions may be associated with developmental differences. I help You interpret their specific diagnosis clearly and assess whether developmental follow-up is needed. Often, reassurance is all that’s required, but when additional support is helpful, early intervention makes a big difference.
"Will my child live a normal life?"
Yes. The vast majority of people with DSDs live completely fulfilling lives – they go to school, have careers, form relationships, and build families. While some may need ongoing medical care or face unique challenges, a DSD diagnosis is not a barrier to happiness, success, or normalcy. My goal is to help your child develop the knowledge and confidence to thrive as exactly who they are.
Access, Insurance, and Virtual Care
"We don't live near a major medical center. How can we still get expert care?"
That’s precisely why I offer virtual consultations. Distance shouldn’t determine the quality of care your child receives. Through secure video appointments, I provide the same thorough evaluation and guidance that you get in major cities. I also help identify and coordinate with capable specialists in your region, so you get both expert oversight and convenient local care.
"Will our insurance cover testing or follow-up care?"
Coverage varies by insurer and state, but most hormone tests, imaging, and genetic testing are covered when ordered for medical necessity. I can review what testing is likely needed for your child and help your local doctor submit appropriate justifications, which often improves the chances of coverage. I also work with you to prioritize the most essential testing when resources are limited.
"How do I start a consultation with you?"
Simply visit our scheduling page and fill out a brief, secure intake form. You can upload previous test results, photos, or medical records if you have them. I’ll review your child’s case personally before our appointment so that we can make the most of our time together. You’ll receive a HIPAA-compliant video link and leave the consultation with clarity, a personalized plan, and specific next steps tailored to your family’s needs.
"What happens during a virtual consultation?"
We’ll spend 60-90 minutes together discussing your child’s medical history, reviewing any test results, and addressing all your questions. I’ll explain your child’s condition in clear terms, outline testing or care options, and help you understand what decisions need to be made now versus later. You’ll receive a detailed written summary afterward, along with any referrals or recommendations for local specialists I trust.
"Can you coordinate with our local doctors?"
Absolutely. I work closely with your child’s primary care provider, local endocrinologists, and other specialists to ensure seamless care. I provide detailed consultation reports, offer to speak directly with your local team, and help coordinate testing and follow-up appointments. My goal is to support your existing healthcare relationships while adding specialized expertise where it’s needed most.
Still Have Questions?
Every family’s situation is unique, and you may have concerns not covered here. That’s normal – and that’s precisely what personalized consultations are for.
