For Kids & Teens (Roughly 8–18) with Lyme, PANS/PANDAS & Chronic Illness
For the childhood you didn't get to have yet.
Sidelined is for kids who lost time to illness: Lyme, PANS/PANDAS, and other chronic conditions like them. The school you missed. The friendships that moved on without you. The skills other kids got to build without even trying. It isn't a medical site or a therapy program. It's a place that names what that actually costs, written by someone who lost the same things.
ScrollWhat “Missing Time” Actually Means
Two kids grow up over the same years. One of them doesn't get to be there for all of it.
Described in text: a typical childhood runs as one unbroken stretch. A childhood with chronic illness covers the same span of years but is broken into four shorter segments, with gaps where school, friendships, sports, and ordinary experiences were missed. The final segment is the longest, representing recovery.
- SchoolWhole grades missed, then coming back behind.
- FriendshipsThe years other kids use to learn how to make them.
- Sports & ActivitiesTeams, seasons, and hobbies dropped partway through.
- Ordinary ThingsBirthdays, trips, sleepovers, holidays.
Notice the last stretch is the longest. For a lot of kids, it does start coming back, just later than everyone else, and with catching up still to do.
“You can be fine one night and not fine the next morning. It happens that fast, with no warning, and at first you can't explain it to anyone. You can't even explain it to yourself.” A Mom We Spoke With · Indiana
What This Is
Sidelined collects what chronic illness actually does to a kid's life, told by the families living it, alongside a directory of the doctors and organizations who helped them.
What It Is Right Now
Two things. First, plain writing about what illness takes from a kid's life, built from real interviews with families rather than medical literature.
Second, a directory of doctors and organizations that families told us actually made a difference. Every entry comes from a real conversation, and we confirm the published details against the clinician's own website before listing them.
How It's Different
Most organizations in this space focus on treatment, research, and advocacy. Those matter enormously, and several are listed in our resources.
Sidelined covers what they don't: the social and emotional cost. The missed grades, the friendships that moved on, the sense that you're behind and nobody can see why.
Who It's For
Kids and teens roughly ages 8 to 18, the school years, when missing time costs you the most socially.
Also for parents, who are usually the ones searching first. The writing speaks to kids directly; the resource directory is built with parents in mind.
Where This Goes Next
Honest About the StageInterviewing families, one at a time
Everything written here came from a real conversation. Three families so far, and each one changed what's on this site. More interviews mean the writing keeps getting truer to what people actually go through, instead of one kid's version of it.
Growing the directory
Finding a doctor who understands these conditions is one of the hardest parts, and families mostly find them by word of mouth. Every recommendation is checked against the clinician's own website before it's listed, so the list grows slowly on purpose.
Connecting families to each other
The long-term hope is that this becomes a way for families to find each other, not just read about someone else's experience. That means partnering with organizations already doing this well rather than building something separate. It isn't built yet, and won't be promised until it is.
If you're reading this and want to share your family's story, that's genuinely how this grows. Get in touch.
What to Expect
Things nobody tells you, that maybe someone should have. Every quote below comes from a real conversation with a family, shared with permission and kept anonymous.
When It Starts
“You can be fine one night and not fine the next morning. It happens that fast, with no warning, and at first you can't explain it to anyone. You can't even explain it to yourself.”
“Something changes in you and nobody can say why. You aren't being difficult on purpose. Your body is doing something that no one around you understands yet, and you don't understand it either.”
“A doctor might tell you it's just anxiety or stress. Sometimes that isn't it at all. What you're feeling is real, even if the first few people you tell don't believe you.”
“When something has always been hard, you can grow up assuming that's just how it feels for everyone. You never had anything to compare it to.”
“Advice that works for normal anxiety might not work when this is what you're actually dealing with. Doing something once doesn't mean you can do it again tomorrow. That's not on you.”
School & Being Misread
“You miss school because you have to, not because you want to. When you're finally ready to go back, you're behind on things other kids picked up without trying. That isn't your fault, and it doesn't mean you stay behind forever.”
“You can learn something one day and lose it by the next, and it has nothing to do with how hard you tried. Most teachers have never seen this happen before, so they don't know what they're looking at.”
“Some teachers and classmates will treat you like you're the problem, when the truth is you're sick. That's a failure of their understanding, not a failure of yours.”
“People might call you manipulative, dramatic, or lazy. What's actually happening is that something in your body is making you act differently than you used to.”
“There might be times you don't even want to celebrate your birthday, times you don't want to be a kid at all. That feeling is real, and it isn't permanent, even when it feels like it will be.”
Friends & Falling Behind
“While other kids were learning how to make friends, you were in a hospital room or stuck at home. Catching up socially is a separate challenge from getting well, and it doesn't end the moment your body does.”
“Your friends start dating, driving, and planning for college while you still feel like a kid. That gap is real, and it isn't a sign that something is wrong with you. It means you spent those years dealing with something they never had to.”
“You might badly want to do ordinary things again: run, sing, be around people. But the fear of being watched while you try can weigh just as much as being sick did.”
And Then, Eventually
It Does Get Better“Sports can disappear for a while. So can family trips and afternoons with friends, the ordinary parts of being a kid. Most of it is on hold rather than gone, and for a lot of kids it does come back.”
“You might find your people somewhere you never expected: a game, a hobby, a group online. Those friendships count exactly as much as the ones made at school.”
“You might get a whole year where life feels normal again, and then watch it fall apart. That isn't you failing. Recovery from this often moves in cycles instead of a straight line.”
“Who you are while you're sick is not who you actually are. The real version of you doesn't disappear, it just gets harder to see for a while, and hardest of all for you to see in yourself.”
If things feel like too much right now
Some of what's on this page is heavy. If you're struggling, or thinking about hurting yourself, please talk to someone today. You don't have to be in an emergency to reach out, and you don't have to explain it well.
- 988 Suicide & Crisis LifelineCall or text 988 from anywhere in the US. Free, confidential, 24/7. You can also chat online.
- Crisis Text LineText HOME to 741741 if talking out loud feels like too much.
- If someone is in immediate dangerCall 911, or go to your nearest emergency room.
Telling a parent, a doctor, or any adult you trust also counts. Sidelined isn't a crisis service and can't help in an emergency, but the people above can.
Resources
Not a medical endorsement. These are doctors, organizations, and resources that real families told us made a difference, for both Lyme and PANS/PANDAS. Details are checked against each clinician's own website, but always confirm current practice, availability, and insurance directly with their office.
Doctors
Updated August 2026Dr. Beth Latimer
Pediatric neurologist in Washington, DC. She's the doctor who treated me, and a large part of the reason I'm well enough to be building this. Known for her work with the PANDAS Network and NIMH research into these conditions. bethlatimermd.com
Dr. Shannon Delaney
A neuropsychiatrist who works at exactly the point where these two conditions meet. Director of Child and Adolescent Evaluation at Columbia's Lyme & Tick-Borne Diseases Research Center, and co-director of the Cohen Center for Health and Recovery from Lyme and Tickborne Diseases. Sees kids and adults whose neuropsychiatric symptoms follow suspected Lyme, other tick-borne illness, or PANS. Read her interview
Dr. Kyle Williams
Director of the Pediatric Neuropsychiatry and Immunology Program at Mass General for Children. Focuses on OCD, PANDAS, and pediatric-onset movement disorders including Tourette's. Trained at the Yale Child Study Center. massgeneral.org
Dr. Kenneth Bock
Recommended by a family we spoke with in New York. Founder of Bock Integrative Medicine in Red Hook, in the Hudson Valley. Board-certified in family medicine with more than three decades treating Lyme, tick-borne infections, and PANS/PANDAS in both kids and adults. bockintegrative.com
Dr. Scott Antoine & Dr. Ellen Antoine — The PANDAS Docs
Recommended by a family we spoke with in Indiana. Board-certified physicians specializing in PANS/PANDAS. Dr. Scott Antoine wrote one of the first medical textbooks dedicated entirely to diagnosing and treating these conditions. thepandasdocs.com
Dr. Robert Khalil — Ridgefield Psychiatry
Board-certified child, adolescent, and adult psychiatrist in Connecticut. Known for long first appointments, with intake visits often running 90 minutes, and for visiting schools to advocate for his patients directly with teachers and administrators. ridgefieldpsychiatry.com
Dr. Kendall Stewart
Recommended by a family we spoke with in Texas. “If it wasn't for him, I don't know where we would be today.”
This directory is built one conversation at a time. If a doctor made a real difference for your family, we'd like to add them.
Organizations
Where to Learn MoreProject Lyme
Nonprofit working on Lyme and tick-borne disease through education, research, advocacy, and patient support.
Neuroimmune Foundation
Focused on accelerating physician education around PANS/PANDAS and encephalitis, with webinars and resources built for families.
ASPIRE
The Alliance to Solve PANS and Immune Related Encephalopathies. Support, education, and advocacy aimed at shortening the time between onset and treatment.
PANDAS Network
Advocacy, support, and research for PANDAS, PANS, and autoimmune encephalitis.
Reading
Saving Sammy
A well-known PANDAS resource that helped one family recognize what they were dealing with, before they had a name for it.
About
I'm 16. I got sick when I was eight. Lyme disease first, then PANS/PANDAS, and it took years to get better. I lost time other kids don't lose: school, friendships, sports, a normal childhood.
When you're gone that long, people make up their own story. Some kids thought I had cancer. Nobody guesses the real answer, because it doesn't look like anything they've seen before.
I'm building Sidelined because I know what it's like to miss things you can't get back. This is for the kids living that right now.
Sidelined isn't a medical resource or a therapy program. It exists to say the part nobody says out loud: illness takes more than your health, it takes years you don't get back. Naming that plainly is the whole point, because being able to name it makes it easier to carry.
Lyme and PANS/PANDAS often overlap, get missed, or get mistaken for something else entirely. A lot of families spend years being told it's anxiety before anyone looks further. That's part of why this exists.
Everything here comes from real conversations with families who've lived it, not from a template. Ongoing Interviews · 2026
Common Questions
Two things. Plain writing about what chronic illness takes from a kid's life, and a directory of doctors and organizations that helped real families.
Sidelined was built by a 16-year-old who had Lyme and then PANS/PANDAS himself. Everything written here comes from real interviews with families, not from medical literature. It covers Lyme, PANS/PANDAS, and similar long-term conditions.
No. Nothing here is medical advice, and Sidelined isn't run by doctors. The resource directory lists people that real families said helped them. It isn't an endorsement, a referral, or a substitute for talking to a qualified physician about your own care.
Roughly ages 8 to 18. Those are the school years, when missing months at a time costs you the most socially, and when falling behind is hardest to explain to the people around you.
Both. The writing speaks directly to a kid or teen who is sick right now, in plain language. The resource directory is built for parents, since they're usually the ones searching first.
Email SidelinedKids@gmail.com and tell us who helped your family and how. Every entry here came from a real conversation, and that's how we'd like to keep it.
Before anything is listed, we check that the person is a real practising clinician and that the details we publish match their own website or their institution's page. We don't review licences, malpractice history, or insurance networks, and a listing is never a medical endorsement.
Yes, and it genuinely helps. Conversations with families are where all of this content comes from. Stories are always kept anonymous unless you specifically say otherwise, and nothing gets published without your permission.
Every listing starts with a family telling us a specific person helped them. Nothing is added from a web search or a directory.
What we check: that the clinician is real and currently practising, and that the details we publish (name, location, specialty, website) match their own site or their institution's page.
What we don't check: licences, disciplinary history, malpractice records, insurance networks, or current availability. We're not qualified to assess anyone's medical care, and a listing is not an endorsement.
Always confirm details directly with the office, and if anything here is wrong or out of date, email us and we'll correct or remove it.
No. The quotes are the most visible part, but the resource directory is the piece families tell us is most useful: seven doctors and four organizations so far.
The writing exists because most sites in this space explain the medical side and skip everything else. Naming what illness costs socially is the point, not decoration.
Partly. Families share their experience in a private conversation, and what's learned from it shapes the writing here. Stories are kept anonymous, and nothing is published without permission.
It isn't a public forum where anyone can post, and it isn't set up to be one right now. The long-term hope is to help families find each other, most likely by partnering with organizations already doing that well. That doesn't exist yet, and it won't be promised until it does.
Not from browsing. There's no tracking, no cookies, and no mailing list, so simply reading this page leaves no record.
If you email us, that email sits in a Gmail inbox so we can reply to you, and it isn't shared with anyone else. Nothing you send is ever published without your explicit permission. If you'd like your email deleted, just ask and it will be.
If you're under 13, please have a parent or guardian with you before getting in touch.
Stay Involved
If you'd like to share your family's story, know a doctor who should be listed, or just want to follow along as this grows, we'd like to hear from you.
Or reach out directly: SidelinedKids@gmail.com