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Dedication to PANS/PANDAS Awareness and Advocacy
“It’s not always about overcoming, it’s about living.” Gabriella True
Previously a merchandise planner for The Metropolitan Museum of Art in New York City, Gabriella moved to California to focus on being a mom and spending time with her kids. She was living what she calls the “typical American nice life” until a diagnosis for her first child changed everything.
First Gabriella faced a challenging diagnosis with both of her children, then she realized that she had been living with that same diagnosis herself. This has fueled her passion for educating and raising awareness in the community.
Gabriella’s story is nothing short of inspiring. She serves as a reminder that we can all find meaning in life, no matter the challenges we face. She’s a true fighter.
Gabriella True is the President of ASPIRE: Alliance to Solve PANS & Immune-Related Encephalopathies. She has been a leader in the PANS and autism communities since 2008.
She is also a parent to two children with PANS, one who also has autism. Later on, she started her advocacy and volunteered for The Autism Community in Action (TACA), to support families
She was also the President of New England PANS/PANDAS (NEPANS) which aims to assist families in searching for solutions and medical care.
Her focus has been on creating tools to spread awareness and understanding throughout the community, support parents, educate schools and school nurses.
Her work with ASPIRE and TACA is what keeps her going. She believes in the power of community and the importance of raising awareness with the goal of empowering all impacted by PANS/PANDAS to improve the lives of children and adults affected.
Guest Spotlight: Gabriella True
Gabriella True is the President of ASPIRE, Alliance to Solve PANS & Immune-Related Encephalopathies. She has been a leader in the PANS and autism communities since 2008.
As part of the New England PANS/PANDAS Association (NEPANS), Gabriella held many roles, including President, 2015-2018. While at NEPANS, her focus was on creating tools to spread awareness and understanding throughout the community, support parents, educate schools and school nurses, and host two conferences.
In addition to her work in the PANS community, Gabriella is also The Autism Community in Action (TACA) Connecticut Chapter Coordinator and has volunteered for them for ten years. Gabriella is a parent to two children with PANS, one who also has autism and has PANS herself. Gabriella has a Bachelor of Art in Art History and has worked as a merchandise planner at The Metropolitan Museum of Art and Saks Fifth Avenue.
Connect with Gabriella True:
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NOTE: This podcast was transcribed by an AI tool. Please forgive any typos or errors.
[00:00:00] Andrea: One of the best things about the guests on this podcast is that no matter what they're doing, they're living life to the fullest. That could be opening a business to help others exploring their creative talents, or like our guest this week, dedicating their lives to advocacy and awareness. Gabriella True.
Not only has an inspiring story of overcoming challenges herself, her story also extends to working to bring awareness to a complex and often missed diagnosis of PANS and PANDAS, a neuro immune disorder affecting children and adults. In fact, after our interview, she was getting ready to go to her state's capitol to promote legislation to her local.
You can hear the passion in her voice and her expertise as she shares about her diagnosis and ultimately the diagnosis that her two children live with as well, and why she's so determined to help others find timely treatment for this often missed disease so that they don't have a lifetime of very difficult symptoms.
I learned a lot while talking with Gabriella and can't wait for you to hear her tips and tools that make her life a little easier so that she can have the energy and drive to do what she loves. Please enjoy this week's episode. And visit Andrea Hansen coaching.com for more on Gabriella True resources that we talk about in this show.
And transcripts from today's episode. Welcome to the Live Your Life, not Your Diagnosis podcast. I'm Andrea Hansen, author, motivational speaker and master certified coach. When I was diagnosed with multiple sclerosis, I was told I would never reach my goals, but I did, and I'm on a mission to prove that life with a chronic illness can still be expansive and quite remarkable.
Everyone has their own unique path. I'm talking to people living with a chronic illness that come from different backgrounds, have different points of view, and are achieving amazing life goals of all kinds to inspire you to achieve what you thought was impossible. These stories are raw. Uncensored and judgment free listener discretion is advised.
I am so glad to finally be able to bring you, Gabriella. True. And I say finally, not that you know, but we had about 30 minutes of audio issues before we started. Sometimes it happens. It's just the way of the podcast. So I can tell you right off the bat, Gabriella is lovely and patient and amazing, and I am so glad to finally be able to talk with her.
Even though we've been sitting here for 30 minutes troubleshooting. So Gabriella True is the president of Aspire Alliance to solve PANS and immune related encephalopathies. She has been a leader in the PANS and autism communities since 2008 as a part of the New England PANS and PANDAS Association. NEPANS
Gabriella held many roles, including president from 2015 to 2018. While at NEPANS, her focus was on creating tools to spread awareness and understanding Throughout the community, support parents educate schools and school nurses and host two conferences. In addition to her work in the PANS community, Gabriella is also the autism community in Action, Connecticut chapter Coordinator, and has volunteered for them for 10.
Gabriella is a parent of two children with PANS, one who also has autism and has pan herself. Gabriella has a bachelor of art in art history and has worked as a merchandise planner for the Metropolitan Museum Art of Art in Sachs fifth Avenue. Gabriella, welcome.
[00:03:49] Gabriella: Thank you so much for having here. And I also say finally, cuz we had to reschedule twice due to those lovely fall illnesses and things, so,
[00:03:57] Andrea: oh yeah, that's right.
So Hoff, I'm like, yay, we're here. I know that's true. It's like I feel like I've had you like in my. In my orbit for quite a while. So it is kind a finally we get to speak. I'm very excited. So I always say at the beginning of every podcast that we are not our diagnosis. And I think that true, especially here because.
You are an activist. You are working and raising awareness for PANS and PANDAS. You're a leader in the community. You're running a nonprofit dedicated to the diagnosis. Your kids are living with a diagnosis. You were living with a diagnosis. But because of all of that, or I would say in spite of all of that, you are not.
Your diagnosis. This is not your story. This is not who you're, so talk to me a little bit about you. What were you doing before you were diagnosed?
[00:04:55] Gabriella: So before you, I was working in New York City as a planner for the Met and then Sacs and I met my husband. I moved to California. Big leap of faith. I was like, I'm such a city girl.
What am I going to do at the beach? I seriously didn't know, like I didn't know how to drive and all. And then I had two kids and one of them very early on day one clearly had some severe health issues and we, and you know, at birth you never know like where you are and you don't always know. And so sort of from day one with the kids we were dealing with, Unique abilities and special needs.
And then just sort of being that regular mom, knowing that there were some things dealing that were sort of special and different and difficult. And then a lot of it was, you know, me being a mom, going to scout meetings and doing lots of sports and cheering a lot and being team mom cuz I'm very organized and things like that.
So typical, pretty American. Nice. Of spending times with your kids lucky enough to be at the beach and spending time with my parents and things like that, and working a little bit here and there, writing. Mm-hmm. For some blogs and things like that.
[00:06:09] Andrea: So you had said that you probably had PANS yourself from an early age, and it was just missed and it wasn't until you started seeing your children.
that had this disorder that you started to realize that, oh, this is something that I have as well. Is that, do I have that right?
[00:06:29] Gabriella: Yeah, except, so I had softer signs as a kid. I don't know if, if I had those symptoms today, even though PANS is still underrecognized, I would be very mild, like extremely, extremely mild, and I probably would still have been missed.
At 30 something, one of my kids was having strep throat all the time, and I don't want to get too sciency, but multiple strep. Sure there open lip blood-brain barrier and start a misdirected immune response that lead to symptoms that are pants. And so our guess with the doctors and I is that his multiple strep infections that were beginning to trigger his pants and his brother's pants was also restarting.
And so I had a pretty big significant breakdown, and I didn't know what PANS was at all at that point, but I went into the ER and said, I don't think I'm safe. And I had a bag of pills of antibiotics and steroids, which low and behold are the two main treatments of PAMs . So a few days later, after I left the psych ward, I was fine.
And they're like, oh, maybe you needed a break. Or, you know, psych chords aren't known for great therapy, so they're like, we don't really, and on the weekend they have none. So they're like, we don't really think that's it. Like maybe you just needed a break from your very stressful life. And I was like, no, that's it.
And then years later I had another chronic infection, which led to a big, very clear pants flare. And again, those same treatments that I had been on 10 years before, seven years before, Took me out of it and took me to a much better place.
[00:08:10] Andrea: So let's just back up for a second. For, for people who don't know, what is PANS, what does, what's the difference and what type of symptoms does somebody with PANS and Panas experience?
[00:08:28] Gabriella: Sure. So Pam. And PANDAS are both acronyms for complete tongue twisters of names, pediatric acute neuropsychiatric syndrome, and PANDAS is pediatric acute neuro syndrome associated with strep disorder. So really what the difference is, is that PANDAS we know is triggered by strep. and PANS is triggered by other things.
Other things like other infections, but it can be also non-infectious triggers. Those are less studied, so you will hear more often about the infectious disorders triggering it. And what do I mean by trigger? Trigger means that there's a misdirected immune response like in an autoimmune disease. Same thing, especially with PANDAS.
We know the disease mechanism, so there's a mystic directed immune response, and it happens. Our body attacks. A part of our brain called the basal ganglia. And the basal ganglia is important because it controls so many of our. Bodily things like our mood and emotion and movement and our senses and how we walk and our movements, and that's why you have these symptoms such as O C D or eating restrictions along with a severe separation.
Anxiety. You can see handwriting changes. You can have lots of urinary frequency, you can have a lot of rage and aggression. There's a set of symptoms. I'm not going to read through them cuz that's awfully clinical. What people mostly see is like a really big change in their kiddo or themselves that really looks very psychiatric.
But then there can be all these physical symptoms too. And so it can look at first like what is happening? You know, we kind of get cat put into either it's just in your head or it's a mystery because there's not a lot of knowledge about pan panda out there in the medical community. More so in the parent c.
So those are the symptoms. And so they're seen as behaviors and it's a paradigm shift of seeing all these things as behaviors versus a symptom of your disorder. So if you had a seizure and you started and it was a big grand tonic-clonic seizure, you would say, oh my God, that poor person is having, that's a symptom of their brain, mfi.
Well, we have O C D, anxiety, rage, handwriting changes, urinary frequency as a symptom of our brain was firing.
[00:10:47] Andrea: I think that's such a good way to describe it because I know that two things there, right? Number one, A lot of times with autoimmune disorders in general, right, depending on which autoimmune disorder you have, is what your immune system is mistakenly, not , not because it wants to do anything bad, but it's what your immune system is attacking.
It depends on what you have, and I think that within this umbrella of autoimmune disorders, it can be very squishy, for lack of a better word. I know like for ms, it's like you have symptoms and then you don't have symptoms or fibromyalgia. For a long time, doctors didn't even say it was a thing, right?
It's only. Very recently that they've realized, oh, this is actually a diagnosis. This is actually, this is real. Because it's a lot of things that you can't see or you can't necessarily quantify. And then I think the other thing is with psychiatric changes. I think it's no secret that there is an underrepresentation of therapists or psychologists, psych psychiatrists and any kind of therapy, especially working with children in, you know, at least in this country.
And so things like that can get misdiagnosed. Or if it's one thing you can say, oh, that's O C D. That's not this whole other situation that's happening, or does it show up sometimes, as you said, restrictive eating. Does that show up as like an eating disorder sometimes and get misdiagnosed that way?
[00:12:18] Gabriella: Absolutely. So you can be diagnosed with anorexia nervosa, you can have a diagnosis of arfi and have pan panda. Pan Panda would be the reason why you have those two things, right? Um, it's the medical reason. So in all of those autoimmune disorders and eating disorders, it's very important to get the diagnosis right, because diagnosis guides.
So it's a big disservice to all these people with these squishy autoimmune disorders. Without an equivocal biomarker and specific tests, chest tests can help diagnosis, but there isn't one test. It delays treatment and any disorder, any disease. We know that early diagnosis and appropriate. Leads to better outcomes.
So that's why it's so important to talk about all of these disorders and show that overlap. So it's not like fibromyalgia or PANDAS or mast cell disorder are like these big thumbs sticking out. Like, oh, that's weird. There's nothing like that. That's not true. A lot of us are in the same pot of a neuro immune, immune dysregulated disorder and mean and banding together and saying, well, this is our overall experience.
It helps us not feel so alone. So we have our pan community or our fibro community, and we have our greater squishy disorder, Neuro,
[00:13:45] Andrea: which makes it sound so cute. It's just, it's just not, but.
[00:13:50] Gabriella: Name like PANDAS and being taken seriously. .
[00:13:54] Andrea: Yeah, it's true. That's true. Well, so, and you said that you had a soft PANS, right?
With what, how did it affect you and how did it affect you? Especially going through, going through school, going through with your relationship with dating, with having a child? How did having that, and especially I guess, undiagnosed. How did that affect you on your daily basis, and what did you do to help cope with it?
[00:14:22] Gabriella: So, first of all, I want to mention that typically the disease course is relapsing and remitting. That means you can have a remittance and no relapse for many years, whereas some people have a continual up and down relapse remit, relapse remit, and it can look chronic. So for me, I really did have many, many years, like decade or so.
Without any really big symptoms. And then the severity can vary differently from patient to patient from an hour or so, a day to 80 to a hundred percent of your waking day in all settings. So for me, as a little kid, it would've been mild and there were some things where I would get very stuck in very clear, O C D and some other issues like the handwriting changes.
Severe anxiety, but I really, I just barreled through a lot of it. And like I said, if it was triggered by strep and I did have a bunch of strep, I would have some of the treatment. So some of it would come down. I didn't have whole treatment, but I had some enough to sort of keep me on this even keel. And again, I wasn't very severe, so it wasn't very hard to keep me on an even keel.
And then I got my tonsils out, which for some is very helpful. Um, so I think that bought me a lot of, Plus strep is typically a childhood infectious disorder. So once I got to college and outta college, I wasn't around strep a lot and it wasn't until my thirties when I had the kids that I suddenly became around strep a lot.
And so like I mentioned, when I was figuring out disorder or be before I knew. Even, I'd never even heard of PANS at this point. I had a severe mental breakdown and I mean, it wasn't severe, but it was enough to get me to go to the psych ward for a hold for a few days.
[00:16:12] Andrea: Look, I mean, who are we to judge what's severe and what's not severe?
Right? It's, it's whatever it felt like to you. Was that because of the PANS or was that something separate?
[00:16:21] Gabriella: Honestly, it was about the PANS, but I didn't know what it was because I went on, I had strep. I had antibiotics and I had steroids, and those are two of the main treatments. And then everything was fine again, and I was coping and even better than I had been for a while.
So that bought me a while. And then I had the severe ear infection with a tumor and all this other stuff with surgeries and with that I had chronic infection in my ear and my head, and that triggered the next flare in my forties. and how I coped is obviously I wasn't as on the severe, severe side, but I had these brand new O C D rituals that I never had, and when things and things were getting worse, so the longer I had this infection, like it took 30 minutes for me to say goodbye to my children.
because I had so many O C D rituals that if I didn't do them, I was sure that they would die. And so it's magical thinking and lying, O c d telling me that I had to do all these compulsions to protect my children. And I stopped really wanting to leave the house, which made. Being a mom to two fourth, fifth graders, very difficult, but there's separation anxiety as one of the symptoms, and I think my separation anxiety was very much attached to them.
So if I was with them, I could leave. So there was a lot of things that seemed really functioning. And at that point I was running the PANS and I was doing a lot of great work at my computer. and I felt very energized by all of that. So it was very rewarding and effective. And so there were a lot of great things happening and my kids at that point had been diagnosed, or one had, and I had been doing okay during their flares.
Not all of them were strep triggers, but. anyway, so I wasn't super, super severe and I found ways to cope, and I think it helped that my separation anxiety was to my children, so I could actually, there's a lot of barriers to diagnosis, and so my story has a lot of similarities with others, but then it can be very different to others as well.
Then I had this massive ear infection, and my symptoms were horrible. I mean, absolutely horrible, quote unquote. Luckily had this ear infection with a very acute, obvious infection. So I got my antibiotics. It was an extended course, and I was so much better, and I was still in a lot of pain from this ear infection, and they didn't want to give me more antibiotics, so they gave me a steroid to reduce the inflammation.
At that point, I was like, I hadn't been. So me, like my baseline me in years. I remember three days into the steroid, I started making appointments to go lecture all over. So that's sort of how I got through it.
[00:19:13] Andrea: What I'm hearing is something that's, that can be, I think a lot of people are really going to identify with because on one hand, We can have all of these things happening with our bodies, right?
Or with our health, and it can have certain symptoms. They can be severe, they can be not so severe. We can adapt. Very easily. Right. Adds humans to what's going on. And so, like for instance, you said like, I had that separation anxiety, but it was around my kids. And so I was able to do things with my kids and be very functional with that.
And, and I think it's really, it's really interesting that we can have a lot of things happening that are not necessarily typical. We can. Naturally deal with them and also have a lot of other great things happening in our lives as well. Right. You were working with Thes Association or the nonprofit, and we'll get into that, but you were doing a lot of other things as well.
Were. Kids that had at least one at this point would ha had a diagnosis. And so I think it really highlights that. It doesn't necessarily have to mean that your whole life was stopped, even though it's like you are pushing an enormous load to get through every single day. But it's something that we can get used to and we can adapt to very quickly.
And sometimes it's not until it's gone that we realize, holy. This huge load was something that we had had on our shoulders for a very long time. So talk about when you did go in, you finally went into the doctor or the psychiatric unit, whatever it was, and you just said like, to help, like this has got to stop.
[00:21:04] Gabriella: Well, so when I went into the psychiatric unit, I didn't bring up pants cuz I had never heard about it. They didn't pay any attention to my antibiotics or. Steroids and making it better. It wasn't until later with the ear Infection one when I called my son's doctor, who I had done a lot of work with too, so she knew me through the nonprofit and volunteer.
Mm-hmm. at Taka and at NEPANS and Aspire. And I said, doctor, this is what's been going on. She says, okay, so she doesn't treat adults, she's pediatrics. And she said, all right, well we need to find you a doctor, cuz she's like, if that isn't PANS, I don't know what is. And it was this wave of relief. And I was like, okay.
And it made me feel like, it gave me a lot of hope. It gave me a lot of stress too, cuz I was like, oh my God, I have, I have this and. Anyway, I knew so much about the disorder. And what you have to understand is that O C D in adults can take 10 years to diagnose. So even with a really good therapist, a lot of times they don't recognize it.
And part of that is because we always think as compulsions, as lining things up, perfectionism and washing hands and germ phs. But what really happens is that a lot of the compulsions are mental compulsions that were happening in our head. . So I was never even diagnosed with O C D when subsequent, now therapists are like, oh my God, how did they miss that?
And they're like, but then it's missed all the time. So I was like, oh. So then it was all about a process of figuring out what in my life I had been, actually had been an O C D that I had been figuring out how to accommodate. For years. And then that work was very hard about how to peel back that onion and start on accommodating all these compulsions.
I've been doing most of the mental compulsions, like the things that took me 30 minutes to let the boys out the door. So there was a relief and then came a, a sort of a crushing blow of saying, oh my God, now I have to deal with. Which the medical treatment helps. But then there's also all that. But you know, we were talking about that.
I want to go back really quickly to that. Coping and, and moving on with our life and being able to handle both things. It's really important to understand is that I'm an adult, okay? And we have tools as adults, but kids don't. And so some of the symptoms that I would've had as an adult, even though they were moderate at times, would be really.
Enabling in a kiddo and, and so they don't have all those tools in those toolboxes to have that say, all right, I know my brain is telling me to do this or not do this, and I'm going to go do it anyway cuz I have to. , a little kiddo doesn't have that. And so if I had had all the symptoms I had in my thirties and my forties, I don't think I would've been able to just get up and go.
So for our kids, it's really important and it can be really, really critical for them cuz they don't have the tools yet and their little bodies and their brain functioning, nothing's really solid and their brain's still going, and then we're impacting their brain. The disorder can hit them really quickly and really hard.
Even though I would've been able to sort of just keep going. I don't want other people to think that, oh, well, my kids should just be able to keep going at a, I mean, at certain point you have to keep pushing them to keep going. , but in the beginning, especially when they're being undertreated, it's a different dif very different story.
[00:24:37] Andrea: So it sounds like in kids there's, it can be either, right? I, from what I'm hearing, it can be either something where it hits them really quickly all at once, or it can be a little sneaky and just kind of start building. Is that, am I hearing that correct?
[00:24:53] Gabriella: Well, it depends on, all right, so the clinical diagnosis mm-hmm.
published says student an onset, you know, the hour, the date, everything that all these symptoms hit at once. And for a lot of people, they go to bed one night and they wake up with complete O c D none before. Okay. And that doesn't, wow, okay. And, but for others, let's say they have a lot of older brothers and sisters, or.
Daycare with a lot of strep, and I use strep as an example because it is one of the things that we know that opens the brain. So there's a barrier between our breast of our body and our brain that's supposed to keep things nice and clean. There's a lot of things that open it, but strep is one of them.
So let's say they're around a lot of strep and they start having symptoms of pants, but they're two to three years old. Now, what do we say about two and three year olds? Are they fun to parent? No. So we call terrible twos and like now we call them the terrible threes, and I'm like, oh, well if you thought the twos were terrible, then welcome to the threes.
And so there are things in our life that we write off as typical. For that age, for the developmentally appropriate. Or we may say, oh, they're really, they're kind of a difficult, fragile child. Like, oh, they're a lot of work. And so maybe those symptoms of pants started then. Okay. But it wasn't a huge severe onset taking that 80% of their waking day, and maybe it's only this lower severity, a few hours a.
And in some settings we're like, yeah, sometimes there is sometimes such. So we may miss that sudden onset, but mom and dad talk about it with a pediatrician or their friends and they will say, oh, but they've always been like that. So that say that goes on for a few years and sometimes they may begin an antibiotic, sometimes they're not, blah, blah, blah, blah.
So it may be sort of a waxing and waiting, slowing and starting, and we're not really going on and we may have three other kids and we're not really paying attention to every sniff. Third kid has, okay, so then there's a maybe a bigger onset say at eight, but then we have a doctor who doesn't really quite get it and say, well, they've always been like that.
So that set an onset is typical, but sometimes it can be very hard to see because it may have happened way earlier at a los severity. And then we know that with other autoimmune diseases and other autoimmune encephalopathies, there's a slower onset. So why wouldn't PANS have. , there's still a lot of debate around there.
The publish, like I said, publish says dramatic onset, but in reality we have may miss that in the terrible twos or threes or whatever.
[00:27:44] Andrea: Yeah, and, and that makes sense. When we have, I don't have kids, but I am around plenty of kids and have plenty of kids in the family and so I'm quite familiar with terrible two twos and the, the three teenagers as we call.
And I get that it can be, especially with a quote unquote, you know, difficult child or like you said, a child that needs a lot of attention medical wise or you know, maybe they're acting out or whatever it is. And it can definitely be. Put in the bucket of, oh, that's just my kid. That's just the way they are.
You don't really know their personalities. They're starting to come out and so maybe their personality that's starting to come out is a little bit OCD quote. When I say put that in air quotes, because that's such a thing that people throw around, like you said, it's like they think that because you're super organized, like, oh, you're ocd, and, and by doing that, I think by kind normalizing O C D as being just like you're a neat person or you're organized, or you like to have all the same color pen or something like that, it totally can lend itself to missing what actual O C D is, which is quite serious.
And like you said, a lot of it goes on inside your brain to where you're not saying anything out loud. And if you're a kid, you don't even necessarily. That that's different. You don't know, you know, especially as like a three, four year old, you don't know that everybody is walking around with this in their heads or not.
So I can see how that can definitely be, be missed. Is this something that progresses? You say it's the relapsing remitting. How does it go? Like if it is missed in childhood?
[00:29:27] Gabriella: So like any disorder or disease we may have is happening in our one. . It is not a silo unto itself and so many things about our body and how it works, whether it works really well or doesn't work so well, can impact any disease or disorder.
We have our ability to heal, our ability to have endurance, those types of things. So when you have PANS or other autoimmune disorders, we often have more than one. Medical issue. Right? So that can compound it. So there are some people who, if they have repeat infections, that their body can't. Sort of stave off.
It puts our immune system into a lot of stress. When we have a lot of stress, there's other bodily functions that also do not work. So the more stress we put on our body, not just mental stress, but physical stress with our diet with. Many antibiotics, which is part of the treatment of this, using a lot of steroids, which can suppress an immune system.
And then we get covid and that worked a different way. That can also trigger PANS. We get a snowball effect. And so there are some people who really are only triggered by one thing and if they're not around that one thing, their. Could ostensibly rest. And if they don't have a lot of other comorbid disorders, like their mitochondria works fabulously, they detox fabulously, or they don't have a lot of intolerances to food and environmental factors, not saying that they have full-blown mass cell or something, but it works pretty well.
They may be the ones that can maintain a limited number of flares or exacerbations. Okay. But then, Many of us, especially with history of autoimmune dis disorders in our family, which. Huge and, and getting worse. in this country especially. Mm-hmm. , all countries, we get the snowball effect. So as I mentioned, we can have an infectious trigger, say it's we're talking about infection or whatever the trigger is, or we get a concussion or something happens to promote brain inflammation or we have a very, very acute stressful thing that also.
Create brain inflammation, but say let's just infections. We keep having infection after infection in infection, which you know, happens at schools, which are like Petri dishes. We may have lots of relapses and because of treatment it takes a long time to work and sometimes there's a significant barrier to accessing treatment.
And we may not all know all the triggers. We may not be getting our symptoms back to baseline in between each. And so therefore, when we have the next flare, we're further and further away from baseline. So it's easier to show that on map, but just think of it as an upper trajectory and eventually it evens out in what it can look more chronic.
Or we always have some symptoms that haven't quite gone away, and then there we have periods of things getting even worse. That doesn't mean that. Chronic kids or young adults or adults can't get better. We've seen it happen. It's just harder, and there isn't a playbook that says, okay, so you've got all this, you're not getting better.
And that's hard too because you're sitting around with people, uh, families. Some kids are getting better. , some are not, and you're like, what's going on? And then you're like, oh, my kid isn't getting better. Or I'm an young adult and I having to shift and I'm in college and I'm dealing with this. I'm having to shift where I think I'm doing and what I can do and how I can do it.
So, you know, it not always about overcoming, it's about living with mm-hmm. . So it can really just vary.
[00:33:18] Andrea: Yeah. So fast forward to where you are now. , are you in remission? Are you like, how are you on the day-to-day when with your PANS and when you're dealing with being a mom? Being a mom of kids, with living, with diagnoses themselves, heading up a foundation, right?
How are, talk to me about how you are and how you are coping on a daily basis.
[00:33:44] Gabriella: I ask myself that all the time. . I prefer check in. Where am I? Yeah. Head, knees, shoulders, toes, PANS. I am really glad my kids are out of grade school and not bringing strep into the house all the time. I dunno where I would be if I was around that.
So I am never going to go get a job working in a school to be around strep. . But I do, I do have some relapses and my ear infections are gone cuz I've now, I've had two surgeries and things like that. I, you know, I've had some other surgeries cause of different things. I do love a big bag of antibiotics in surgery.
I'm like, oh yeah, can I, two of those, they're looking at me like, they're like, what? And I, and I explain it. They're like, no, you can't have two bags of this antibiotic. And I'm like, come on, no one will know this . Anyway. So, you know, it just depends. I get very, very nervous, as does every single parent or every patient with PANS.
When you get sick, you're like, you never know. You never know what may trigger you. So I've had Covid and I've had lime. And lime is a big, big problem, and I've had covid twice and lime once in the past year. With that, I have had flares, but not as severe as past flares. I've had severe fatigue. From probably both.
And so getting over the fatigue, which I've never had in my life, has been something very new for me to learn how to deal with, and I haven't learned how to deal with it frankly. I still work a lot with my doctor and I work with a wonderful naturopath that. Without her and her mix of supplements, that sort of keeps me very even keeled and helps me bounce back faster.
But I was hard hit this year with less, less psych symptoms. But recently, you know, I had Covid and I had had Lyme this fall and. My therapist now understands PANS and I was being treated medically pretty low key. Not really big interventions like I V I G and some of the bigger ones. So I didn't need any of the big kind of quote unquote medical guns.
I just could do it pretty basic, which is fantastic. So that's an improvement, and my therapist now is like, wow, you know, it has been a month since your last covid infection. , you know, we do know that this is episodic with you with the flares, and now she totally gets it, which is the truly one of the most energetic things that like energizing things because I'm like, I got this therapist who didn't ever had, never heard of it, and now she's like, well, you know, and she asked me questions for the, our materials for her patients.
So like all of that just fuels me and energizes me. So I'm doing better. I'm doing good. Working on the E R P and the therapy for the O C D. That's fun. I often take Mondays off because I do a lot of e r P on Mondays, so now I've learned to do basic work, not a lot of really big, high level brain thinking On Monday.
[00:36:37] Andrea: What is e r p?
[00:36:39] Gabriella: Oh, so E R P. E R P goes with C B T and so C B T is cognitive behavioral therapy. Mm-hmm.
Making yourself not do the compulsion. Gotcha. Not doing the thing that the intrusive thought is telling you to do. So it's not about getting rid of it, cuz it's not going to go away. Some kids with PANS during treatment. , all their OCD goes away. For me, not so much. And I have to do the e R P. Some don't really have to do it.
Some have to do it a lot. Mm-hmm. . So you get exposed to it and it's about learning to, I hate this phrase, but it's a really important phrase, learning to live with your discomfort. Hmm. And so being able to say, yep, I hear. But you're a liar and you're a big fraud. And some people named their O C D, they're like, go away.
Bozo, , and, and saying, I know you want me to hug my kid 10 times until I get it just right. You were going to do it one time like you were supposed to. and it'll be fine. And mm-hmm. , you hugging them nine time isn't going to prevent a car accident next week. And I have to sit there and like do it. And so that's, you're exposing it and you're learning how to deal with your response.
[00:38:17] Andrea: That makes sense. So this understanding, and I can feel like the relief in your voice as you're talking about, like having a therapist who finally hands and having a doctor that finally understands bands. Is this why you do the work that you do with Aspire and with the nonprofit to help people? Who have this disorder, either themselves or with their children, just go to a doctor that understands and says, oh yeah, that's what this is.
[00:38:43] Gabriella: 100%. It's what fuels me. So when I'm having my fatigue or my O C D or whatever it is, I'm like a, I don't want people to feel alone. B, I know education works. We want to close the gap between the onset of the symptoms and the start of treatment and it's working. That gap is closing for a lot of people and not everybody.
It's not perfect by any means. It won't be perfect for God knows how long, but it's getting better and making people feel heard. Because a lot of times they go to a doctor who's like, I don't know what that is. It doesn't exist. Oh, I heard it's controversial or, yeah. , it's all in their brain. They can do all of it.
Like it's just made up. You know, you've talked to other people who, with different disorders and you've dealt with it yourself. There is a certain amount of medical gaslighting that happens 100%, right? And so saying, I see you, that did happen to you, and here's a hug. Virtual generally, and then we're going to pick ourselves and move on, and we're going to try to give you the tools you need to better advocate for your kid or for your.
And so it's taking all of this information that's really confusing. In some parts of it I still don't understand and the doctors don't understand, so it's fine. And boiling it down into parts that are easier to understand. And then once they understand it, they may be able to explain it better. And if they can't really explain it, they say, here, here's this toolkit.
Help my kid, help myself getting voices around. . Mm-hmm. .
[00:40:18] Andrea: And it's great that it's something that, it sounds like there's a, yes, there's definitely therapies and things that you can do for the symptoms, but it sounds like there's also a pretty well researched therapy that you can do to nip that cause and help that with the antibiotics and the steroids.
[00:40:35] Gabriella: So we think of our treatment for PANS Panda as a three prong treatment approach, like a stool with three prongs. Mm-hmm. , you pull one. and you fall over and knowing that each kid is different or each adult with this is different. You know, those comorbid health symptoms that they have or may not have, how severe their symptoms are, sometimes even who their provider is.
That can be a big factor in there. It can look a little different, but the three tenets of the three pronged disorder is one, we're going to remove the source of inflammation. So if it's an infectious. It's generally an antibiotic. Viruses, it's a little more difficult, but if it's a big psychosocial stress, we want to remove that stress.
If it's something else that's causing that inflammation, we want to remove it. Okay. We want to remove, we want to turn off, you know, say your take out a blow torch to your computer. You want to turn off the blow torch first. Okay. So we want to turn off the blow torch first. So, most of things are happening congruently, but there are sometimes that you do this, you do this, you know, there's 1, 2, 3 steps.
But essentially, You're looking at it as a three-pronged approach. The second approach is treating that dysregulated immune system, so supporting the immune system and reducing the inflammation, and this part is highly dependent. on that patient, on their severity in particular, and some of their comorbid health conditions.
Mm-hmm. , and unfortunately what doctor they see if they're in a state that has insurance. And this is not well covered by insurance. And there's a lot of factors to this part. And then the third prong is that psychotherapeutic arm, which is very different than how you would treat, quote, quote unquote typical OC.
Typical anxiety. Normally we would give them a pretty good dose of medication and you know, say, Hope it works with our kids or our adults. You want to start off at an extremely low dose, if at all. Some never, ever need it, and some can have incredibly bad reactions to it because they're not having a psych issue, they're having a neuro immune issue.
But it can help some manage the symptoms. It's not going to fix this disorder. No amount of psyched or therapy can turn off brain. . Okay, so then there's the psychotherapeutic, and like I was talking about the E R P, you don't start it right away, which you would do with O C D. You would get in there and you would start it right away.
With these kids and adults with this inflammation, you need some of that inflammation to calm down first, so you do not start therapy right away, which is a big paradigm shift in the way we normally think of treating these things. Or we normally call psychiatric disorders, but they're really the symptom of this neuro immune issue.
[00:43:20] Andrea: So what I'm hearing is if you do have PANS, if you do have a kid with P does, there's hope. There's definite treatment, there's ways that you can tackle it depending on how it's showing up. And the main barrier, one of the main barriers is just getting people educated about what it is and how you can help and getting doctors educated, getting parents educated, which I think you were doing beautifully.
[00:43:51] Gabriella: Yep. There is absolutely hope. We want to instill hope in everybody. . And even for the people who have a really chronic condition of it, we still want to talk about hope. Mm-hmm. . And we still want to talk about, okay, so it's not what you, your future is, or your present isn't what you wanted or expected, but let's find a beauty and a joy in the moment and being able to shift that.
That's obviously easier said than done, but hope is a really important thing and education is always.
[00:44:23] Andrea: Beautifully said. Well, Gabriella, thank you so much for coming here, giving us a big dose of education and letting us know all about this. For those who want to get in touch with you, yes, I'm going to have all of your information in the show notes, but just tell us really quickly how people can get in touch with you.
[00:44:38] Gabriella: Easiest way is to go to www dot Aspire, a s p i r e.care, not com, not org, but.care, aspire.care.
[00:44:50] Andrea: Perfect. And again, that'll all be in the show notes. Gabriella, thank you so much.
[00:44:55] Gabriella: Thank you so much. It was such a joy to talk to you.
[00:44:59] Andrea: If you like the show, don't be shy. Please give us a five star rating and review.
Follow us on Apple Podcast, Amazon music, or wherever you're listening right now to see complete show notes and resources mentioned in this episode. Visit Andrea Hansen coaching.com. Thank you for joining me and until next time, take care.
About Live Your Life, Not Your Diagnosis
Hear inspiring discussions with people living with chronic illness. These people went after their passions and big goals -even when everyone told them they couldn’t. Listen to stories of resilience and gratitude in the face of uncertainty.
I’m your host, Andrea W. Hanson, Author, Motivational Speaker, and Autoimmune Rebel living with multiple sclerosis. You’ll not only fall in love with these guests, but you’ll soak up positive mindset tips and ideas to find your own unique path to success.