Understanding PANDAS: Insights from a Family's Experience with Don Donnelly

When Not Yet Becomes Right Now (00:00)

Welcome to When Not Yet Becomes Right Now, the podcast where we dive deep into the moments of transformation, the times when not yet shifts into right now and everything changes. I'm your host, Jen Ginty and this podcast is all about those pivotal moments in our life journeys. You know the ones when the hesitation fades, when we take that first step, even if it feels like a leap. It's in these moments that growth and healing begins. Each episode will explore stories of resilience,

moments of clarity, and the sparks that ignite real change. From personal experiences to expert insights, we'll uncover how people navigate the complex journey we call life and come out stronger on the other side. Whether you're searching for that spark in your own life or just curious about how change unfolds for others, you're in the right place. We'll discuss the ups and downs, the breakthroughs and setbacks, and how to embrace the right now, even when it feels out of reach. Because sometimes,

The hardest part of the journey is realizing that the moment you've been waiting for has already arrived. So take a deep breath, settle in, and let's get started.

When Not Yet Becomes Right Now (01:12)

Hello and welcome to When Not Yet Becomes Right Now. Today we have a wonderful guest. His name is Don. And Don Donnelly is a dedicated husband, father, and advocate residing with his wife of two decades and their sons. His debut book emerges from a heart wrenching experience with his youngest son Scotty, who was diagnosed with pediatric autoimmune neuropsychiatric

disorders associated with streptococcal infections or PANDAS. Wow, that was a lot to say. Yes. At the age of nine, families' odyssey through the complexities of the medical system, consulting with 13 specialists before arriving at a correct diagnosis, revealed the profound challenges and obstacles faced by families grappling with misunderstood diseases. Motivated to shed lights on PANDAS and advocate for better recognition and treatment within the medical community,

Don penned his book to share their story, offer solace, and guide families encountering similar trials. His narrative is a call to awareness and a powerful reminder of the importance of perseverance and advocacy in the face of adversity. Welcome, Don. Thank you for having me. I really appreciate the opportunity. I'm so glad you're on. I'm looking forward to a great conversation. Excellent, me too. So let's get into it.

So you have a background in medical devices. So you've worked in the medical community before. I've always worked for medical device manufacturers. And typically, it's related to devices that treat chronic pain. OK. Yeah. So when the symptoms started with Scotty did you recognize anything of what was going on? Yeah. It actually happened really quick.

You know, 2020 was a bad year for everybody. I we can all kind of chalk that up, you know, with COVID and everything. But with Scotty, he had never really been sick. And there was one time before the shutdown where he had actually gotten sick for the first time. had a fever, had a sore throat. It was the typical look of just a sore throat or maybe more advanced, even strep throat. So after going down that path for a few days and things just getting worse, he of course was diagnosed with strep throat.

And just like everybody else, you know, you have four or five days to kind of work that through your body. then your white blood cells get activated and they start to fight the bacteria that's inside your body. And then the bacteria, you know, goes away and hopefully everybody gets back to normal and goes on about their day. What we noticed with Scotty was after he was sick is he started to have changes. And the change started first with defiance.

And it might be something as easy as, time to come to dinner. And it was met with a really loud no. And as the weeks progressed, that defiance started to turn to rage. So even the easiest of tasks, writing your name on the paper to help with homework, trying to get off the computer after screen time, anything led to really just a loud bout and screaming.

It wasn't until probably about two months into it that we finally brought it up to the pediatrician and the pediatrician said, Hey, that's part of growth. might be hitting puberty early. you know, sometimes I've seen this happen, but it was just weird that happened after he had strep throat unstructured. so as we're advancing more and more things that just get worse and worse, rage starts to turn to violence at this point. he's starting to get illusions where he's.

thinking these stories happened in his head. The one in particular, he asked my wife how I felt about me being responsible for my grandmother's death. And it was the most obscure thing. It had to do with the thermostat being broken and a fire happening. And I don't even know how he could even come up with the story. So it started getting really strange. Now, what...

ended up being kind of the icing on the cake is my wife and I made the short sighted decision to go to a neighbor's house for a barbecue. It's within walking distance. The sun was out. He was in a good mood. We came back about an hour later and we opened the door and it looked like we walked upon a murder scene. Everything in our home was destroyed. TV, every lamp, every heirloom, everything in the refrigerator was tossed and thrown against

The walls, there was marinara sauce all over the walls. it looked like blood. mean, we were honestly concerned that we had walked upon the worst. That was a bit terrifying Honestly, I did that's, I still kind of relive that every now and then. And, it was, it was really tough. And, you know, I walked across broken glass to get through his room and he wasn't in there. I made my way to the outside and he was sleeping on an outside Lenai that we have, sound asleep.

And I woke him up, what happened? And he said he couldn't find what he was looking for to eat. So it was at that point that we just took him to the hospital and that's kind of where the journey began. Right. Yeah. And you said you, went through 13 specialists. 13 of these specialists. Yeah. Yeah. And you know, advocating for your child can be so difficult and even more so when you just don't know what's happening. It is it's,

you put a lot of trust into the community because it might be based off of Yelp reviews or friends that had success going to the doctor or even your own insurer just giving them a certain star rating. In every case, we were met with either denial or in some cases, they asked more questions to my wife or I about, we being overprotective parents? Are we exaggerating? Even the time we took them to the ER,

We almost were scolded because he didn't have COVID. And though there's all these kids at the children's hospital that did have COVID, and they were scolding us, we really didn't know where else to turn it back. You have to go there when all else has failed. And when you're in these situations, I can only imagine that you're screaming inside. What can you do for my child?

you know, where can I go for this? I I myself, my son, my oldest son had defiance disorder and he was had a lot of behavioral problems when he was young. But that wasn't, you know, that wasn't something that happened all of a sudden. So I had more of an ability to be like, okay, so this is how he's reacting. This you just got thrown right into it. You know,

I can only imagine how that feels to be standing there saying, what's going on here? Why all of a sudden change? Well, you feel terrible as a parent, right? Because that's your job, right? Your job is to fix it. Your job is to make sure that your children get the best care. And as a dad, I was trying to be the fixer and we got to go to this doctor, we got to go to that doctor and know, with defiance.

After about a year, really the not yet moment, was my wife. My wife has a science background. And after we went to the hospital and we were almost sent home, she was the one that decided to go kind of head first into the symptoms. She was the one that got on support groups, on social media, and just looked for commonalities, whether it was autism or whether it was just

rage or defiance disorder or any of these psychiatric personalities that he had already been labeled by his other specialists, she looked for some kind of common denominator. And she's the one that stumbled across PANDAS first, that support group. And it was at that point she just started questioning our doctors. And every time she was met with the same thing, stay in your lane, you're being a Google doctor.

anything like that. In some cases, some people didn't even believe PANDAS existed. But it was really her pushing me to be that advocate and believe in her as she was the one that really believed in this diagnosis. And once we finally went to the hospital and she asked that question, the neurologist, he just stood still and he thought for a second. And he said, that's a great idea. And that's when the testing began.

Yeah, know, advocacy is so important for our children because they can't do it themselves. And of course, Scotty didn't know what was happening. watching on is just when I watch my son have these difficulties and with depression, anxiety, and it just kills me. It makes me feel like I can't do enough for him.

So having this medical disorder that nobody thought of before, all of these specialists who, neurologists who are supposed to be up to date with the information on it, that your wife came to them with the conclusion, must have been so frustrating. It was. I think we were to the point now where we just wanted

We just wanted to know what was up. And at one point a psychiatrist said, you might as well prepare for the fact that he's probably going to be in inpatient care the rest of his life. And we just didn't accept that. And it didn't make sense that it happened so soon after he was sick. That's what we couldn't do together. And that's what no one would listen to. And it's common. know, strep throat is diagnosed 3 million times annually, and that includes adults, but it's common.

I'm sure you've had it. I've had it many times a month. But this affects one in 200. And there's different degrees of it. But what I'm in fear of, and the reason I wrote the book is there's probably a ton of kids out there that are being misdiagnosed or taking probably anti-psychiatric drugs when it's an autoimmune issue.

And it's not easily treatable, right? You still have to have treatment and figure out what kind of medicines work and what they don't. But for Scotty, Scotty's a bright, funny, he's a hard worker, he's smarter than I am, and he's just a great kid. And he just deserved that chance. And there's other kids out there that need that as well. That's kind of why we were trying to get the message. Could you tell me

Tell us a little bit more about the symptoms. What was there that was so unique? So with PANDAS, we talked about bacteria being in the body and white blood cells go to attack that. That's just the body's natural immune response. When the strep bacteria is in there, white blood cells do their job and then the strep leaves the body. With PANDAS' kids, the white blood cells don't disengage after that.

so they go after health cells. And as a result, they kind of attack the brain causing inflammation. And that's why you all of a sudden get this onset of typically OCD is the biggest thing that you get from a simple endpoint. You when I think of OCD, I think if you can't wash your hands enough or you have to lock the door so many times before you leave. With Scotty, his was food related. He couldn't get full enough.

And, know, that's why a lot of the doctors were saying, it's puberty, it's growing, it's hungry. But in one month he gained 17 pounds and it was all just food related. yeah, we, I couldn't piece together why that would be OCD, the range for us was a big thing. He, it was to the point where I traveled for my job sometimes to be to the point where I didn't leave in the family because when he got mad, he got mad

And whether it's trying to restrain him or calming him down, there was no time out. And it would be 20 minutes of pure rage and anything in front of him would feel his wrath This was a nine-year-old kid and we were afraid in our own home for that. Yeah. Again, just terrifying. It is other symptoms. mean, just delusion. You know, he,

At one point he, I thought he had made a joke. He would talk about, didn't want to go outside because he was worried he was going to get hit by blue nerf balls. I just assumed he was assuming, you know, it's playing football outside or something like that. No, he was afraid of blue nerf footballs. so it's, it's just things like that. But then, you know, he would have his moments of peace in the middle of the day or right when he woke up. It didn't seem like his symptoms were that bad. So, it didn't, it just didn't make sense.

There's still a lot to figure out even once we got diagnosed, but he honestly is doing it great now. That's wonderful. Was it exhausting for him? He doesn't talk about it much, even though we try to do it. You know, there's still therapy that we go through and the idea is that he can maybe kind of remember this. Luckily, he caught it earlier than most PANDAS kids. He just naturally growing and moving on with life. He's probably forgotten a lot of it. But we, you know, we bring it up. We talk about it.

every once in a while he'll have nuggets where you remember certain things, but, for the most part, we're letting him tell his story later in life. You know, Scotty's not his name. We're using a pseudonym and we're not sharing most of the stories. He's going to be able to do that later on in life where he can help other. That's wonderful. And I, I, agree with keeping that to the child to be able to.

tell their story later in life. We can tell our story without making it obvious who the child is, right? And I think that's really important. You had said before that he's starting to, when he gets a sore throat, he's noticing that, right? He does. So we walk through steps now where he can start to self-identify whether it's any kind of virus coming on. If it's strep,

we have to move quickly and he has to tell us and we start with really strong antibiotics immediately to try to keep that from advancing. He's to the point now where he'll come in and even if he says, I have a scratching throat, it's like an alarm going off in our house and it may be gone in an hour. It may just be because he was talking really loud on his video games or outside playing and it goes away, but we take fevers and we take sore throats very seriously.

It's interesting that you've said that this is more common than people know, and it hasn't been discussed. Did your pediatrician have any idea? this something that, once you found out what it was, does your pediatrician understand it now, or does it need to be explained to pediatricians in general? So his initial pediatrician did, well,

He let on that he didn't believe what PANDAS was. You know, he had heard of it, but he didn't know how to treat it. He didn't know the research. And to be honest with you, insurance doesn't really recognize it. When you go to a pediatrician, they have kind of their list of blood tests to do. They've got their list of certain things after that. If it doesn't fall within kind of that continuum of care, they typically refer them on to a specialist. Now, the problem with PANDAS is the specialist is usually a psychiatrist.

and then they get treated for psychiatric symptoms. That's not the case. It actually makes it worse by giving those type of drugs to a young kid like that to hopefully bring him back in. So that actually made things much worse when he went on psychiatric. When we went to, you know, psychologist or a therapist where he could talk about it, we tried different types of

neurologist is, I mean, we honestly did try the gamut of difference. I think where we found our biggest success was we found a more of a functional pediatrician that kind of looked outside that continuum of care to look for different things. We tried different tests and he looked at what could probably be the cause of all these autoimmune issues and why Strep activated that. And then we found an immunologist

that really, really helped break it down what was going on. And he's been Scotty's biggest advocate whenever we have insurance issues or any of that stuff. He honestly just is the...

that you have found someone who can really be there as, again, an advocate. And I say advocate a lot because our kids can't advocate for themselves. And we also need to teach them how to advocate for themselves. So just doing those things, it helps them to understand what they need to do later, right? As an especially, know, in my career, I don't really question

You know, my customer is our physician, so I really questioned him much in my job. So that kind of spread out to me a little bit in this whole thing. was like, well, physicians know what they're doing. Without my wife asking those questions to them about PANDAS and things like that, I really don't know where we'd be today. It would be a different household, that's for sure. Yeah.

Scottie being able to recognize those, you you had said that they, one doctor told you that he would be inpatient for the rest of his life. And now seeing where Scottie's been and where he's going, do you feel much different from that initial, you know, thing that was said by that doctor? Absolutely. I mean, we expect, well, we, we demand that Scottie live

his best life. We're going to give him the tools, the resources. He's always going to have great medical care and all that stuff, but both he and his brother, it's our demand that they live their best life and figure out how to be independent and do what they do that makes them happy in life. We just have to give them the tools to kind of identify those things. Yeah, it's.

I don't want anything less Scotty as I do his older brother as I do for my wife, which is just have the best life and great success. And this is just a speed bump in life that he had. There's going to be others, but we'll jump on these two as they come. Yeah. mean, isn't that what you're meant to do? To demand that our children get the best that they possibly can to.

learn those tools to live their own lives independently. So tell me, why did you decide to write the book?

So I'm probably a little, keep my feelings a little bit more inside. And whereas my wife is probably more emotional and kind of left her thoughts out. And it's funny when she does that, she feels great, you know? But me kind of keeping this in for two years, I just had a lot of stories that had to get out. And it was therapeutic for me to write it. was very, I wasn't expecting to get a Pulitzer Prize and I certainly wasn't expecting

know, accolades or any of that stuff, that wasn't the goal. One, I wanted to get these feelings out and put them on paper just so I could do that. And the other is it's imperative that we help the other families that are out there so they don't have to go through the two year journey that we did, find the best help. And it is out there and I wanna make sure that they have somebody to turn to. And that's kinda why I wrote the book. I wanted to share our story, just a little taste of our story.

But more importantly, I wanted to make sure parents know where to go to when something like this happens.

So can you give us a little something out of your book? Maybe something that sticks out for you that was really important to get on that page? Yeah, I mean, there's quite a few things. I think the biggest thing for us is when he was in the hospital, the triage always asks those questions. Are you from an abusive family?

Yeah, they, try to do some investigating outside of the symptoms. And that was the first time you had mentioned that he had considered, taking his life. And as a nine year old, you don't really, you know, as an adult hearing a nine year old say that you don't, you don't know that. Gosh, what is he? That's when we realized, what is he living with? What's going on between his ears where he would think that had a great, great life at that time. And.

That's where we struggled and when we couldn't get answers from the physicians at that point, just taking it into our own hands and seeing him get his first treatment, which is called IVIG. It's a big word. It's immunoglobulin. And I always have a problem when I pronounce it, but we're essentially kind of doing a control alt delete on his immune system when we get these treatments. And it's just spun down.

plasma from patients, actually several thousand patients get this dose. And the second he got that, you could tell there was something different about him. He got color back in his face. A lot of his symptoms went away almost immediately. But what we noticed, the first thing I noticed, this is my favorite memory that I have, is we were back home. Again, we're walking on eggshells in our own home.

and he was singing in a karaoke microphone in his room and he doesn't even sing, which is blaring. He was happy. Was it? And you know, that's when I realized, okay, there is a light at the end. And I think that's really important for those who are listening who think that maybe this is something that is affecting their child to know that there is a light at the end of the tunnel, that they aren't.

going to be impatient for the rest of their lives, that there is a bright future for kids with PANDAS. For sure. you know, there's, there's people that need to know about it outside of the medical community. There's teachers. They're kind of the first line when they recognize things to communicate with the parent. They don't have to diagnose. That's not their job, but they see something. It's okay to raise your hand and say, Hey, I'm seeing something. odd.

There's been a lot of strep throat in the classroom over the past couple of weeks, and now I'm noticing big changes in your son or daughter. Would that be, you know, have you ever heard of PANDAS or, you know, I'm still trying to figure out how to frame that, but I think my next step would be, how do I talk to the school community to make them aware? How do I talk to the school nurses? How do I talk to teachers? How do I talk to administrations so they recognize this? And then next would just be,

we have to get the first line, have to go to the pediatricians and we have to re-educate them on testing. If a functional pediatrician has the same tools, they're just outside of that continuum of care that most pediatricians are used to, we've got to change because we can stop this a little.

And again, education is key, but also remembering that there's a team of people that work with your child through their life. And teachers are one of the biggest. They spend more time with their teachers than they do with us during the school year. And for a teacher to be able to recognize the symptoms and to give information to a parent, not say, hey, your kid has PANDAS, but say, you know what?

you know, these symptoms show up in this particular, you know, autoimmune disorder. Maybe go see your pediatrician and talk with them about it. You know, not like being nosy, but just giving that little bit of concern and allowing the team to get together and talk about

It's so necessary. honestly, we're That's the goal, right? If we demand our kids have these successful lives, I want somebody to demand of me that we continue this education and then we need to start.

So where can we get your book? So it is on Amazon. If you go on the link, navigating PANDAS, it'll pop up. It's in book format. It's in ebook. You can do borders as well. But I would say everybody just about gets on Amazon. And again, we're not doing this for money. There is a charge for the book. We're not doing that for money. The idea is we want people to spread the news.

And since we've put the book out, I'll get a message from a stranger on Facebook or any social media. And it'll say, Hey, I think my kid has this. do I turn? Where do I go? We've heard a lot from school teachers. We've heard a lot from people in our own community who we didn't know their child had PANDAS And it's, it's good that we're doing that. It's fulfilling. And it makes me know that we have a purpose now, now that we've taken care of Scott.

warms my heart to know that you're out there to help other families and that you're doing a fantastic job of it. Thank you. Are there any specific resources that a parent would want to go to first? So there's, yes, there's the neuroimmune foundation, which is, you know, that can get pretty scientific, but it does show specialists that are in that field of

neuroimmune issues. know, PANDAS is caused by strep, but there's all kinds of pediatric autoimmune neuropsychiatric symptoms that can be triggered from other things. Mold, that's a big one. Bartonella, Lyme disease. So there's other things that can cause these symptoms. PANDAS just happens to be one of the bigger ones, and that's the one that affected our son.

The our biggest, biggest resource that we turned to on social media was something called Panda's parents. And it is a closed group. You have to answer questions about, you know, symptoms that might have. And you get on there and, you you're kind of quiet for a little bit, but then you start to see parents that are having very similar issues, symptoms, same responses, not getting any help from their current medical team. And that's when you start to open up to these strangers and say, Hey, I'm running into this.

What do you think? And all of a sudden, all over the world, you're getting all these responses. It sure sounds like it. need to do this. You need to do that. That's really what kind of my wife into studying the clinical research in the envelope. That's what really, really helped us. But there's Panda's network. There's the Aspire group. There's tons of resources. If you just Google it, there's even a Panda's awareness day now and that's October 9th. We just had it. You know, that's the

year round for us now. Panda's Awareness Day is year round, but again, we need to call other families. Yeah. And you know, community is so important. Especially for parents, because, you know, we're going into this blindly. And, you know, again, we want the best for our children. And sometimes we need to reach out to others, even though we may be fearful, or we may not believe that it's that bad.

You know in quotes that bad but community really brings everyone together to bring resources out into the world and to alert the world that this is a thing this is real and You should learn about it so that you know the signs Absolutely and so are you guys on social media

But it's just Don Donnelly. I'm welcome to everybody. And unfortunately, because I'm welcome to everybody, I also get a lot of strangers reaching out. Honestly, I don't care if you if you reach out to us on social media. There's not a lot of Don Donnelly's. I'm the only one that's wearing a shirt that's too tight in his neck and a red face. You'll recognize me immediately. But turn to Panda's parents, turn to Panda's network.

Reach out to us. We've helped a lot of families and we're going to continue to do it. We may not have the right answers, but we're going to get you somebody that can help you if you need. Well, thank you for what you're doing. It's so important. And this conversation was enlightening. And I hope that parents really think about, you know, the things that happen to their children, that sometimes something very small can become something a lot bigger and to keep an open mind.

Thank you, Jen Your platform for doing this is excellent and I'm very appreciative that you have me. Thank you.

When Not Yet Becomes Right Now (32:07)

It always amazes me that there is so much in this world we don't know about that isn't in our vocabulary. Don's story is really about advocacy for our children.

without his and his wife's constant questioning and research. Scotty may have been suffering with this disorder for longer than he did. It's important that we keep an open mind that not everything is black and white, especially when it comes to health. There are diseases and disorders that affect a smaller amount of a population. Education is key and when it comes to kids, it's important that their team of teachers, school nurses, doctors and counselors know the signs so they can help families.

better understand what their child may be going through. Thank you again, Don for telling your story and being a voice to help others advocate for their own children.