A Light in the Fog: Parents Share Their PANS/PANDAS Stories of Hope
This is the transcript of the seventh episode of Flying Through Fog: A Podcast For PANS/PANDAS Caregivers. Note that there may be some mistakes in the transcription.
Krystal Vivian: Welcome to Flying Through Fog, a podcast for PANS/PANDAS families. I’m your host, Krystal Vivian, and I’m joined in studio today by my co-host Lindsey Forsyth, a mom of kids with PANDAS. Welcome, Lindsey. Thank you. Thanks for having me. Thanks for being here. So families, we have reached the end of our first season of flying through Fog, and we are just so grateful for.
Everyone who has joined us to share stories and to share their insights. We had great conversations this season and one of the things that we have loved the most is sharing your stories of hope. So for today, for our last episode of the season, we wanted to just end with the most stories of hope. So today Lindsey and I are going to share stories of hope that we have found either through.
People that Lindsey knows who have sent in some stories, um, also in the PANDAS PARENTS group, some p parents who have shared stories within that Facebook group and then given us permission to share them on the podcast. So that’s what we’re gonna do today.
Lindsey Forsyth: Lindsey, do you wanna start? I would love to. Um, I wanted to start with, this one’s a little bit of a longer description.
Uh, a friend of mine who I have just gotten to know through our PANDAS journey, she doesn’t even live in my state. We’ve kept in touch because as most PANDAS PARENTS PANS, parents know, uh, you tend to rely on other parents for a little bit of help. So this story is from Kelsey and it says, our four and a half year old daughter Olivia, woke up on Mother’s Day 2024.
Yes. Mother’s Day of all days, a totally different child. We had brunch plans to meet her grandparents, which she would usually be excited about. We couldn’t get her out of the house. She screamed and thrashed on the ground complaining about the discomfort of her clothes. We chalked it up to a late night, the night before, and a bratty toddler and forced her out the door.
This behavior escalated throughout the day when we were supposed to see her cousins. The days that followed were complete hell. I often describe it like living in what the movies portray insane asylums to be. My once extremely social best friend of a child was filled with rage, spent the entire day ripping off her clothing, like caged wild animal.
Screaming, crying, rolling on the ground and hitting and attacking everything in sight. We made an appointment with her pediatrician. Unlike many of the stories you read, we were beyond lucky in the pediatrician department. Our doc immediately wanted to strep test. Olivia, I was somewhat taken aback. I said, she hasn’t seemed sick.
She’s not complaining about a sore throat. Her pediatrician said, let’s just see. Sure enough, the strep test was positive and she explained PANDAS to me, so she was able to identify and diagnose the issue. She has never treated it, so she called in a standard round of amoxicillin hoping that would do the trick.
It did not, and we spent the next couple weeks in and out of children’s hospitals biting doctors who, although we already had a diagnosis, told us that PANDAS was a controversial diagnosis and that we probably needed to improve our parenting or see a psychiatrist. Luckily we quickly found a panda specialist out of Chicago, made a telehealth appointment, and he worked directly with our pediatrician and a local ENT to treat.
Olivia had TNA surgery, which is tonsillectomy and adenoidectomy in July of 2024 and has been 99% back to baseline since I honestly believe it was the quick diagnosis and treatment that has resulted in such optimal results for her. The three months of PANDAS we lived in was an absolute hell. I’m hopeful with over a year symptom free that we are in the clear.
That’s what I’ve heard from our specialists anyway, so fingers crossed. So I remember our first conversation Yeah. Um, telling her, you know, when parents are in that part of the journey where they just heard what this is and they go on Google and they, you know, try to figure out what is happening. It is insanely overwhelming, as you can imagine.
And I remember telling her in this conversation how lucky she was that a doctor brought this to her attention and a doctor was the one that was giving her the information. Because so many of us parents who are listening and who have been on different, you know, social media groups. We’re advocating to doctors for our kid.
So, I mean, there’s a story of hope right there inside of that story of hope to me. Yeah. Yeah. That
Krystal Vivian: there are pediatricians out there who know PANS/PANDAS, yeah. And can identify it
Lindsey Forsyth: and can also tag out when they feel like, okay, this is a little bit in over my head territory. Yeah. Um, I, and more of the details of this is they, they did.
Develop a team, uh, of specialists around their doc, their, their child, um, and got a lot of different opinions and it was very helpful to them to have just some people that really believed in them from a medical perspective. So, in the most recent conversations that I have had, and 2024 is recent compared to, you know, the however long this, since the early two thousands, this disease was brought to light.
Things are changing in a way that we were talking last night. Uh, Angie and I were guests on a different podcast for OCD, how the problems that a lot of us have right now, uh, the hope is in the details of, at least now doctors are recognizing it. They may not know what to do with it, but we’re seeing more and more people not just shut people down at the door.
Not gaslight them into saying, well, like in, in part of her story, yes, this was, you know, a problem, but, um, it’s more now how do we address it less? We don’t even identify it. Doctors are coming around to the research. Mm-hmm. So lots of little glimmers of hope in that story for me reading it. Um, but gosh, that’s that first part where she was talking about the movies and the insane asylum.
You really do feel like, like. You’re living in a Twilight Zone. Mm-hmm. And then to have her come out of it and have this story to share is just, I’m so grateful that she was willing to share that story with us.
Krystal Vivian: Yeah. It’s incredibly powerful. Yeah. Incredibly powerful. Yeah. I agree. Thank you Kelsey.
And we also have joining us today, Angela Henry, who you guys have heard in previous episodes. She is a licensed clinical social worker. Who specializes in helping families with, uh, OCD and PANS/PANDAS. So thank you Angela, for being here.
Angela Henry: Yeah. It’s so great to be here. Thanks for having me. Absolutely. And I have a story of hope from Kaylene, and she wrote this in the PANDAS parent group.
So she says, I’ve been wanting to write a post for you all to share and to give back. This group was very helpful to me when I needed support most, and there was none. So after a long hard battle in one of the worst ever cases of PANDAS, we’ve been quite successful in overcoming this awful disease. My daughter was 11 when she got strep and some strange unexplainable symptoms started.
She was 12 before we figured out what was going on. She was 15 before we were finally able to get her the treatment that she needed. No one believed me for a long time. It took a lot to find the right doctors and convince the right people. Of what I already knew. Everyone thought she just suddenly got very mentally ill.
With debilitating OCD and severe anorexia, we’ve trekked through hell and back and time, time again to get her the treatment that we knew that she needed. We’ve fought very hard and we are winning. She is back and that is a lot of explanation points. She’s herself again with more explanation points and finally becoming who she was always meant to be.
I wanna encourage you all to keep fighting for your children. They can heal. They are meant to heal. Keep advocating for them. They need our voices and our fierce strength. Love that. They need our persistence and grit. I love this lady. I am grateful to know all of you for the support and understanding.
Only people who have been there know what it’s like. I hope that one day each of you will be in the same position that we are, and I hope, pray, and we’ll do absolutely any and everything to keep our daughter healthy and strong. It has been an unimaginable journey, but the joy of seeing her shine again makes putting it all behind us a lot easier.
The first picture was us at the Eating Recovery Center where she had her first of many G-tubes placed. That tube was our first lifeline for two and a half years. Now the G-tube is long gone, a distant memory. She’s on stage again doing what she loves and shining bright like the star. I always knew that she was.
She just finished playing Anna in Frozen at a local children to theater. We are so proud of her and all that she has overcome. She is a true champion. All of our children are. Keep going, she says with lots more explanation points.
Krystal Vivian: Wow. Yes. That’s amazing. Yes. I, what I love the most about Kayleen’s message is that she, it’s what so many parents say, right?
I know what’s wrong with my kid.
Lindsey Forsyth: Yes.
Krystal Vivian: And I have to fight to get other people to believe me, to get medical professionals. Absolutely. To believe me. But then once she did, yeah. And she was able to get back on, she was able to get on the road to recovery. Mm-hmm. The
Angela Henry: help she needed. Yeah. And now she’s back to shining.
Yeah. Just like the person that she, this mom Kaylene says she always knew her kiddo was Yeah. She just needed it to become unearthed and rediscovered. Yes. It
Krystal Vivian: needs
Angela Henry: to,
Krystal Vivian: needs to treat the disease.
Angela Henry: Mm-hmm.
Krystal Vivian: And your child is still there.
Angela Henry: Yes.
Krystal Vivian: Yeah. These things, the flares. The, all of these are symptoms. Mm-hmm.
That is happening because your child has this disease. Yes, yes. And once you’re able to treat it, your child is still there. Absolutely. And how wonderful that now she’s on
Angela Henry: stage performing. Yes. Yes. Doing like it’s such, and I love how she talks about the truth of it. Yes. Right. We went from. You know, anorexia G-tubes, which are feeding tubes that go down your nose to help you have a source of nutrition back to after medical treatment being on stage shining.
And I was doing a, a talk with Lindsey actually, um, recently, and I described to some clinicians that this is a medical condition, but it’s wrapped in psychiatric. Kind of wrapping, right? Mm-hmm. Oh yeah. And so to be able to help the medical piece and then we can unwrap again what was already there. Yeah.
So they can shine. Yeah, it’s amazing. Yeah,
Krystal Vivian: it’s amazing. Thanks, Kaylene for sharing.
I’m gonna share a story that a mom posted in the PANDAS PARENTS Facebook group that I was really impacted by. Or the I that I found really moving. This is from Logan. I’ve considered making this post for a while now, but I’ve been worried of how it is received In the beginning of my son’s PANS journey, all I wanted was for someone to give me a glimmer of hope that healing was possible.
I was told most parents whose kids are in remission leave the groups. I wanted to come here and give that glimmer of hope. My son is pretty much back to baseline and thriving. In the beginning of the summer, I felt hopeless and scared, but I never gave up. We found a functional NP that has forever changed my son’s health for the better.
We have gone on a week long beach vacation and just had a weekend in the Smoky Mountains where we made the best memories. In fact, I think this year has been the best vacations yet because my son wasn’t sick for a change. Every year he gets sick during vacation, but because of the healing that has taken place, he’s healthier than ever.
I just wanted to reassure parents. Healing and thriving are possible. Just keep pushing and fighting for your babies. You are not alone. I appreciate the love and support from this group along the way. I thought this was really powerful because it accompanied two pictures of her son. Just smiling and being, you know, the cheesy big smile in front of a Smoky Mountain’s car and just on vacation.
And you could tell this kid is just like any other kid. And that’s what we want, right? That’s what we want for our kids, is to be able to experience that. And when you’re in the thick of it, it feels like that’s so far away. And I appreciated that Logan noticed that, you know, yes, these parents leave the Facebook groups, they leave.
They kind of go out of the network ’cause they’re not in the fog anymore. Right. And I get that because sometimes you just wanna feel normal. And so sometimes you have to do that for yourself. And it’s part of their healing and it’s part of their healing. A hundred percent. But I, I also really appreciate that Logan is like, I, I needed this.
I didn’t have it. Now I’m sharing that with you so that you can have it so that I can help somebody else. Right. And I just love those lighthouses. That, that pop up along this journey. I think that’s great.
Lindsey Forsyth: Yeah, for sure. And when I was looking through this, I thought of my own story and how, you know, some of, sometimes the hope and the, and we talk about silver linings a lot on this podcast, is that when you come to the other side, the way that Logan’s family has most parents with.
Typical health situations with their kids not having PANS. PANDAS, I know I am one of them. Sometimes now that we’re a little bit further beyond it, you don’t take the moments to really relish how happy they are because it’s just something you’ve taken for granted. But when you get to the other side and you can look at a vacation and say, oh my gosh, he was a healthy during the vacation.
Mm-hmm. Be happy during the vacation. Mm-hmm. That makes your vacation right there, you could go three miles down the street. Yeah. And be happy with your vacation. So just the fact that Logan noticed the happiness and could savor the happiness, sometimes it’s the hard that helps us to see the happiness with a little bit more brightness.
So I thought that was pretty cool. Thank you Logan. Um, I think that was a good reminder to me too, to remember, you know, the first time I really heard my son laugh after he was treated. Um, they were up all night being crazy kids and, you know, he was probably like 10 at the time and it was, it was a long road there, but they were way past bedtime.
And my husband and I looked at each other and I was like, just let ’em stay up. I haven’t heard this in a really long time. Like all of them happy playing together. Um, and so it’s just like, I think when, when people are gonna hear these stories. They’re gonna be like, oh my gosh. Yeah. I had a moment like that that I didn’t even rem like think that was at such a cool moment.
But when people like Logan bring those things to the forefront, those of us further out of it can really look at it and say, yeah, yeah. I’ve almost forgotten what it’s like to savor those moments. Maybe I should savor them again. You know?
Krystal Vivian: Yeah, absolutely. And that’s important. It’s, it’s hard when you’re in the middle of, of the muck.
Mm-hmm. Too. And when you’re in the fog. To find those little glimmers, but they’re there.
Lindsey Forsyth: Yeah. Thank you for sharing, Logan. I encourage every parent on those social media groups to share a little bit of hope when you have ’em. ’cause it does go a long way for the people early on in the journey.
Krystal Vivian: Absolutely.
Thank you, Logan.
Angela Henry: Hey, this is Angie again and I have another story of hope from Lisa who posted in the uh, PANDAS PARENTS group. This is what Lisa says. I just need to share this. This is hope after years of questions and through the PANDAS network and Diana’s health, that’s Diana Pullman. Thanks. Shout out to Diana Pullman, who’s a great advocate.
I found a pediatrician who believed me, did the blood work, and finally prescribed ongoing antibiotics, which helped a year long wait list for an appointment with a well-known rheumatologist. Then onto a colleague who was even better. He believed me as well. Did more blood work and dug deeper to find exactly where my son was immunocompromised, and then finally suggested IVIG.
So during the pandemic, he developed a new tick, which he still has, and we saw one neurologist via Zoom who said, your son’s perfectly fine. I don’t even think he has PANDAS. My son ran with that. He’s always denied that anything was wrong. But the new rheumatologist really explained the, the blood work and offered a med for the ticks.
My son is now 19, still on antibiotics and is in pre-med. I’m shocked and in awe of him. He lives in a dorm at a school. He still has issues when he’s around people who are sick. But he calls me for help. He still is taking antibiotics because now he says he can feel that they help him. Has some bad days, but we all do.
But he’s adulting. My hope is that he’ll become a doctor that helps kids like he was, and parents won’t have to come in and whisper. We think our child has PANDAS. It’s very scary disease, but there’s hope. That’s awesome. Yeah. Wow.
Krystal Vivian: Her kid’s adulting.
Angela Henry: Yes. Her kids in college. Yes. And to become a doctor.
Krystal Vivian: Yeah.
To help other kids. Incredible. Yeah. Incredible. I love seeing that. A lot of these kids you think of like Lindsey’s son Brady, who wants to give back and wants to help. And especially after being in denial, you know, not wanting to have anything wrong with you. Nobody wants to be sick. No, and I love that she shared that perspective from her son, but also knowing that he’s realized that.
He, he is sick and he needs help and it’s the medicine. Is he helping?
Angela Henry: Yes. When he is having a hard time, he knows, okay, I’m, I have to take the antibiotics to be this best version of myself that I can be. Yeah. Yeah. Absolutely.
Krystal Vivian: I think that’s wonderful. Thank you, Lisa, for sharing.
I have a, another story from a mom in the PANDAS PARENTS Facebook group. This is from Shauna. I am posting this to give you all hope and to let you all know there is light at the end of this tunnel. This is my middle son. He was diagnosed with PANDAS when he was in third grade after sudden onset of OCD, Tourette’s depression.
The list goes on. He was on Augmentin for five years, had several steroid bursts, tonsillectomy, and one round of IVIG. He is graduating in a couple of days, summa cum laude. He earned over 100 career wrestling wins this season. Led his football team in tackles this year with 139 tackles days. Were very dark for a number of years, but he is a thriving young man.
I wanted to post this because I remember searching for hope, and I’m here to tell you don’t give up. Don’t stop trying to find the best treatments that work for your child. I have goosebumps, right? Like the fact that third grade, he was diagnosed when he was in third grade and here he is in college.
Mm-hmm. Right? He is in college and he is succeeding. He’s graduating summa cum laude. That is so he’s not just surviving, right. He’s thriving, right. He is leading his team. He is winning in sports. He is doing all of the athletics, all of the things. I love that also. She said, stop trying. Do, don’t stop trying to find the best treatments that work for your child.
Because what works for one doesn’t work for another sometimes, right? And we all have to find the the right collection of treatments, the right treatment path. Um, and I think that it is just incredible to see somebody who is gone on such a long journey with PANDAS being able to see such remarkable. Just beautiful life.
Yeah. Happening for her son.
Lindsey Forsyth: And I think looking at, okay, he’s graduating summa cum laude. He is a great wrestling teammate. He’s leading his team in tackles. You do think too. Okay. So that child in third grade had a mountain standing before him.
Krystal Vivian: Mm-hmm.
Lindsey Forsyth: And with the support of his family and a mom that obviously did not give up.
Maybe chipping away at something bit by bit, by bit by bit. Sometimes this isn’t a giant swing of the pendulum. I also wonder if all of that adversity early on made him the resilient man that he is today on the field, on the wrestling mat in school, socially, sometimes too. It’s like the PANDAS can be a part of the journey that makes you.
Even stronger, even more successful in other aspects of your life. And so he not only did this all in spite of the diagnosis, but you wonder all of the lessons gleaned from that level of adversity. Could that be another thing that I, if Shauna was sitting here with us today, would she, I wonder chalk that a lot up to this thing we did together called Pan PANDAS that really made his childhood very difficult.
Now he’s this shining man who’s taken lemons and made lemonade.
Krystal Vivian: I love that perspective. I love that turning it on the head that it’s not just a diagnosis that we had to struggle through. It’s not just something that we had to fight through, but that it was key in making this, uh, it could be. Yeah, I know you’re not, we’re not saying that it was, but that it could be key in making our children.
The people that they’re supposed to become. Mm-hmm. The strong people, the leaders. Mm-hmm. The most loving. The most empathetic, the most kind. The most, yeah. That is just, I love that.
Lindsey Forsyth: And for Shauna to show up for her kid in the persistence that she did, she’s part of the reason that a really tragic situation mm-hmm.
Didn’t stay tragic or truly like, maybe he just survived it. He’s thriving because of the village around him, no doubt. Mm-hmm. So just kudos to all the parents who see it as more of a marathon and can not lose hope in the years that it takes to get to Now you’re graduating and ready to go off to college, right?
Yeah. So. I’m assuming graduating high school, going off to college. Oh, see, I assumed
Krystal Vivian: graduating college because it said summa cum laude, but I could be wrong.
Lindsey Forsyth: Well, either way he’s killing it.
Krystal Vivian: So he’s, he’s doing great. He, he is doing so great. Well, and also Shauna mentioned that that’s her middle son. So if she has at least two other children who are along this journey too.
Right. Um, and I hope that they had such. Like, I hope that where they are now, they are seeing this positivity and That’s right. Maybe what they experienced also watching their brother go through this has helped them as well, and that they’ve, they’ve able to get that lemonade. Yeah. And it’s that much sweeter.
Lindsey Forsyth: That’s right. Yeah. That’s right. That’s
Krystal Vivian: awesome.
Lindsey Forsyth: So this next story is, um, another PANDAS parent who lives in the United States and the Midwest. And she said Back in 2023, Canda stole my child out from under my very eyes, my calm and quiet kid became trapped in her own head, despondent, scared, anxious, a shell of herself. We experienced school refusal, OCD, separation, anxiety, and the list goes on.
I was at a loss of what to do. Therapy doctors. Testing, which she didn’t wanna participate in IEP meetings and more medications in hopes of seeing some relief and answers until God placed the right people into our lives. A therapist that had the thought to mention testing for strep infection, another mom and now dear friend, who reached down to help me and illuminate a path medical staff and two rounds of IVIG that gave my daughter a fighting chance in life.
While we still struggle in many ways, we are more educated, more prepared, and have tools that allow us to navigate this often too. Dark road. At the beginning of 2023, OCD ruled her life. It was severe in the eyes of the CyBox assessment, but most recently she was assessed as subclinical, which is a really big deal.
Our story might not match yours exactly, but at the heart of all of our stories are kids who desperately need us as caregivers to push forward. To continue to be curious and find and utilize the support that is out there from one caregiver to another. Our stories are important and have the ability to shape the next generations.
So this is another example, similar to Krystals of a mom who’s not, um, always going to have 100% remitted children. Mm-hmm. And like rides off into the sunset and says, see you later. Like, this is a mom who. And in conversation with her offline, there’s always optimism in her story.
Krystal Vivian: Hmm.
Lindsey Forsyth: She’s the kind of mom that’s always able, and I, I’m not like that at all.
So these help me. But she’s the kind of person that always finds a way back to the positive. And I think her children are so blessed to have that. And I know many of the moms that are PANDAS moms, PANS, moms, PANDAS, dads PANS, dads. We we’re all so different in the way we handle the trauma ourselves, but I really do admire the moms that can stop in the middle of it.
In the middle of the fog, so to speak. Right? Yeah. And be like, wait a minute. Okay. Like we’re better than we were though. Yeah. We’re not, we’re not perfect by any means, but we’re not debilitated by this OCD that doesn’t let us leave our bedroom anymore. Yeah. So just so much in the little baby steps in this story to me.
Krystal Vivian: Yeah. I think it’s incredible to be going through something like PANS/PANDAS and just watching your child become somebody totally different and still being able to find the silver lining. Yeah. Still being able to find something good and something to be optimistic about. Mm-hmm. Wow. What an incredible viewpoint.
Right? That is something that we wish that we could bottle up and share to everybody. Right? Right. Um, but I love that. I love that she does that, and I love her message at the end where she says that our stories are important and have the ability to shape the next generations, because that is so, I wanna get that tattooed on my forehead.
Mm-hmm. That is so true. And it is so important to share our stories. It’s so important. To talk about. Yes, the stories of hope and the things that we wanna celebrate and the things that we are moving towards as goals, right? Yeah. But at the same time, it’s really important to share when we’re struggling.
Yeah. It’s really important to share when things are really hard. That’s something that you have done. And look at everything that has happened because you’ve been willing to share your stories. And then help other people. And I think that that is so powerful and the more that we can do that we feel less alone.
Mm-hmm. Um, we help other people feel less alone and ultimately we make things better for our children.
Lindsey Forsyth: Yeah. Well, and I think to, to add on to that, I found out about PANS/PANDAS through another mom whose child had it. I didn’t find, I had seen therapists. I thought that was the step you take, right? Your child seems to be overly anxious.
Mm-hmm. Or not leaving the house or not wanting you out of sight, asking weird questions. The first thing we did was okay, like. Either something is wrong with our parent, our parenting or something is wrong with his head. Mm-hmm. So let’s go to a therapist. Mm-hmm. It was a mo and, and the therapist was amazing.
It was just, this was at a time earlier on where it wasn’t well acknowledged. I, it, it, it was just, I didn’t know how to connect the dots for the therapist, so I was only giving her half stories. I didn’t think that two of these symptoms were under the same umbrella anyway. Mm-hmm. But, uh, and, and it was again, fabulous therapist.
But I didn’t know to go to a doctor. I went to a a, a A mom in conversation and she was like, Hey, I don’t wanna stick my nose where it doesn’t belong. Mm-hmm. But sometimes to the point about stories, telling your story will help other people to make, like synthesize the symptoms and if they see them in their own child, even.
So, you know, we’re taking stories of hope after the fact, but I guess I’m flipping it on its head and saying, if you see another family that. Those things are jumping out at you because you know them well and you’re at a place where maybe you can, you know, in terms of intimacy of friendship, you can have a conversation.
Don’t be afraid to share things on the front side too, because you might be the, the reason a child gets a diagnosis at five instead of 15. So you’re right, and like I didn’t think about highlighting that the story can shape the next generation, but even our children learning the. Language around this disease and being able to advocate for themselves in a school environment, like our stories have a very huge ripple effect to all of the ways that we touch people in our everyday lives.
Mm-hmm. So, I’m not saying to put your kid on blast, but I’m saying if you, if you feel like you’re getting that intuition to maybe. Reach out to another mom. I think there’s a respectful way to have that conversation pending the relationship. And that’s how I got a diagnosis. I don’t know where I would be without my friend telling me about PANS Panda and um, you know, kind of Mindy’s story too.
Like I had a therapist who just told me about a strep test and told me to go get it. And sure enough it was positive. And so it’s just the speaking up that sometimes takes a little bit of gumption. Mm-hmm. Um, you know. It can really set somebody on a path forward much quicker healing.
Krystal Vivian: Absolutely.
Absolutely.
I’m gonna share a story from a woman named Crystal who posted it in the PANDAS PARENTS’ Facebook group. Love her name. She has it with a C. I spell it with a K, but it’s a great name. She posted this with two videos that she had taken a year apart of her daughter. On her daughter’s birthday, which that in and of itself was really powerful.
But in one video, her daughter had a piece of watermelon cut, like a birthday cake because she had so many issues with food. That watermelon was really like, that was the treat that she could have. She couldn’t even have cake. They’d put a candle in it. They were seeing her happy birthday, and this kid just looks exhausted and dejected and just is not having, like, you can tell that this kid is, is hurting.
Mm-hmm. Then the second video, she has a slice of cake with a candle on it. She is smiling, she is radiant. If you didn’t, if you didn’t see them side by side, the video side by side, you would not think that these were the same child, not knowing this family. So that was, that was really powerful. Crystal’s message was also incredible.
This is what she said. I have to share this story to give my fellow PANDAS PARENTS some hope. The first video is a year ago today. Two days before PANS hid our home with a vengeance and truly traumatized us all. My daughter was lost, broken, anxious, and struggling immensely, and we had no idea the kind of hell we were about to face the following months.
Her cake was watermelon due to food restrictions. She was barely eating anything at this point. She was incredibly anxious and fearful when this video was taken. Fast forward to today, a year later. She’s healing and happy. She eats almost everything. She plays with her friends. She lives her life again, and most importantly, she is herself.
Again. We have setbacks. Not everything is perfect, but she is 99% better than she was a year ago. It truly is a miracle because just last year, I was in a true state of hopelessness and I genuinely didn’t think I would ever see this version of my daughter again. I accepted that hell on Earth was my new reality.
All this to say, if you are in the trenches of this awful illness, I promise there is hope. We are living proof that it gets better. It may seem like it will never end, but I promise it will.
Lindsey Forsyth: I love that. I love how she doesn’t jump right to the hope, like she kind of sets the picture of. That first birthday video that she posted.
Mm-hmm. And as a mom, having gone through that similar moment in our journey of feeling like there may not be relief in sight. Mm-hmm. And trying to wrap your arms around the diagnosis to begin with, or even a lack of diagnosis, I think about when she was talking about that watermelon cake and the video with it.
Like the mom on the other side of the camera. Yeah. Right. Like you’re, you’re trying like hell to make this birthday something of a positive event and your child is a shell mm-hmm. On her own birthday with a watermelon cake because of food restrictions, which are a symptom of PANS/PANDAS. And my heart kind of stuck there because I think that.
It tells the parents who read the post or tells the parents listening now that if you are in that moment, there are a lot of other parents who have been and are still in that moment with you and that you’re not alone. Um, and maybe it’s my own trauma that like, keeps me going back to that particular moment.
But I love and yet, like you said, a year later. A
Krystal Vivian: year. Yeah.
Lindsey Forsyth: Good for them. I mean, and, and that’s the thing too, is I, what I don’t want is people to hear these stories and be like, a year. Why isn’t that been a year for my kid? Or like, ’cause I, I think that everyone’s, when we hear story, yeah. When we hear stories of other people, sometimes that can make us feel hopeless because of the timing being so quick for some people and not for others.
But then I love that she shared that because whether it’s a year or five years or two years, whatever that looks like. I think it’s important that we recognize that every child has their own journey. Mm-hmm. And different setbacks will come, different treatments will come. Um, different families handle this in different ways, so don’t compare your journey to someone else’s, but know that maybe you’ve been sitting on a plateau for two years.
Maybe this is your year. Mm-hmm. Right? Maybe this is when the treatments that you’re doing are shifting or the doctors are starting to take shape. Just don’t lose hope that your time will come.
Krystal Vivian: Yep. Absolutely. Well, and the other thing I wanna point out with this is that Crystal has shared a lot in the Facebook group.
Mm-hmm. If, when I clicked on her name, she had shared, she shared this post somewhat recently, within the last few months. Uh, she had other posts in there since this post, asking for advice, asking for resources, asking for help. She had other stories, other posts from a few months even before this post and last year, sharing glimmers of hope.
Lindsey Forsyth: Yeah,
Krystal Vivian: so. She’s also don’t think that there’s, it’s not necessarily a end destination. Right. It’s, you know, even when you get into remission, you still might have triggers. Mm-hmm. You still might have flares and we’re all in this, like, that’s the, that brings me back to the. Flying through Fog Vision. Right.
Right. And this idea that sometimes we’re at the front and we’re leading and sometimes we need to go to the back and we need help. Mm-hmm. Right. Um, and I think Crystal really embodies that, and I appreciate that she is so open. Yeah. With sharing these glimmers of hope, these experiences that she’s having, but then also not being afraid to ask for help when she needs help because.
It. It’s not just one or the other. We’re flowing through that. Right, right.
Lindsey Forsyth: The both and, right. Yes, you can. And for someone to pause in their journey to celebrate the wins. Mm-hmm. And then to share those so that other people can find hope in them. To your point, that is the embodiment of what flying through fog is all about is just helping to.
Seats helping to tell people that you know, hey, listen, like you can still reach your hand out and there’s someone there. Mm-hmm. Um, and also we’re gonna have ups and downs, but yeah, like in the middle of my struggle, I’m gonna be flying in a be with you. Mm-hmm.
Krystal Vivian: Absolutely.
Angela Henry: Hey, this is Angie and I have another note from Brian, A story of hope. And Brian posted in the PANDAS PARENTS Facebook group. The following, let’s hear what Brian has to say. I know a lot of people are struggling and we went through two years of absolute hell hope this can give some hope to those who need it.
So he says things have been improving. Don’t know if I’ll ever be able to say he’s a hundred percent, but he’s doing amazing. He caught seven innings tonight in some hot and humid Midwestern weather. We know what that’s like. It is one of his biggest triggers. Okay. Also, he got all A’s in sixth grade after missing half of fourth and all of fifth grade because of school refusal, which we hear so often.
We are so grateful.
Krystal Vivian: Wow.
Angela Henry: Yeah.
Krystal Vivian: Wow. What a huge 360, 180, yes. Yeah. 180, whatever it is. Whatever the math is, up and down inside out. Yeah. Wow. School refusal. Absolutely. I think it’s such a big deal. Yeah. And we just talked about that in the previous episode, but to go from That’s a huge story of hope. Yes. To go from school refusal missing a year and a half of school.
Angela Henry: Yeah.
Krystal Vivian: And now getting straight A’s.
Angela Henry: Yes. Straight A’s. And doing something that sounds like he loves to do. Yeah. Baseball. Yeah. Right. In his biggest trigger. Which is the heat. Yeah. And still doing it.
Krystal Vivian: Wow.
Angela Henry: Yes. Way to go. Brian, we’re so glad to hear from you and that your kiddo’s doing so well.
Krystal Vivian: Okay. That’s a wrap on the first season ever of flying through fog. Special thank you to all of the parents who sent in stories of hope or shared stories of hope with us so that we can let other parents who are flying through fog right now know that there are good things on the horizon. Just keep going.
Thank you to Angela and Lindsey both for sharing our stories of hope today, and also for the work that you’ve both done this season in the episodes and also behind the scenes to make flying through fog an important resource for families who are navigating PANS/PANDAS. The work that these two ladies are doing to help our community is so powerful, and we could not do this without them.
Flying through. Fog is edited and produced by the incomparable Tommy Lee. He may not be part of the conversations in each episode listeners, but he’s the reason that they sound so great and we could not do this show without him. Thank you so much, Tommy. And finally thank you to you, our listeners, for spending your time listening to Flying through Fog.
We hope you found these episodes helpful and that they’ve become an important resource for you along your journey. If you have found these episodes helpful, I ask that you do a couple of things. One, share this podcast with another family who could also benefit from hearing these conversations. And two, please leave a rating and review on the podcast app that you’re using to listen to the show.
Both of these things are the best ways to make sure that other families can find flying through fog so that we can help more people. Ultimately, that’s what we wanna do. If you’re currently in the middle of flares waiting for a diagnosis or treatment, and you need help. Please seek out surviving the flares and emotional toolkit for PANS/PANDAS, families in crisis mode.
This is our two episode triage podcast. We’ve talked about it before in this show, but it can help your family while you wait for treatments. Just search for surviving the flares on your favorite podcast app. If you have a story of hope or an idea for a future episode to share, please email us at PANDAS@federatedmedia.com and that email address will be in the show notes.
This is the last episode of season one, but we will be back for season two of flying through fog in 2026. My name is Krystal Vivian. If you’re flying through fog right now as a parent or caregiver of a child with hands or PANDAS, please join us in the back of the V. We’ll help pull you forward so you can catch your breath.
Let’s fly through fog together.
RESOURCES
Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts
Aspire PANS PANDAS Advocacy, Community & Support
Neuroimmune Foundation | Inflammatory Brain Conditions
Parenting Resources:
