"My Mighty Quinn" - From Tics, Turbulence, Distraction and Disconnection to Calm, Confident and Connected"

S2 Episode 4: A Mother's Conversations with World Leading Experts: "Your Child’s Unbearable Overnight Changes… The Mystery Behind Sudden Psychiatric Behaviour" - with Dr Lindsey Wells

• Lucia Silver / Dr Lindsey Wells • Season 2 • Episode 4

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In today’s episode, I’m thrilled to introduce Dr. Lindsey Wells, a naturopathic physician and a leader in integrative paediatric care. Dr. Wells specialises in complex neurodevelopmental challenges, including PANS, PANDAS, ASD, and autoimmune disorders. Her holistic family approach is transformative, and in this episode, we take a deep dive into these often misunderstood conditions.

Episode Summary: Dr. Wells and I explore the world of PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections). We unpack the symptoms, potential triggers, and the vital importance of early diagnosis and treatment. As a parent of a child diagnosed with PANS, I share my personal journey with my son, Quinn, providing real-life context to the discussion.

We delve into how PANS and PANDAS manifest with sudden and severe neuropsychiatric symptoms, including OCD, anxiety, and tics. Dr. Wells explains the role of infections, immune dysregulation, and the essential three-pronged treatment approach involving antimicrobials, immune modulation, and symptom management.

Key Takeaways:

  • Understanding PANS/PANDAS: Sudden onset neuropsychiatric symptoms such as OCD, anxiety, and regression can indicate PANS/PANDAS, often triggered by infections.
  • The 3-Pronged Approach: Effective treatment involves antimicrobials, immune system support, and symptom management.
  • Family Impact: These conditions affect not just the child but the entire family, requiring emotional and logistical support.
  • Resilience and Recovery: Recovery is possible! Dr. Wells shares real-life success stories of children who have recovered and thrived after receiving the right care.
  • Practical Advice: For parents without access to specialists, anti-inflammatory treatments can offer insights into whether their child’s condition may be inflammatory in nature.

This episode is essential listening for any parent navigating the uncertainties of neurodevelopmental disorders. As always, we are here to support you. Boundless love and hugs from all of us at the Brain Health Movement!

Dr Lindsey Wells Resource Links: 

Resource Links:

My Mighty Quinn EP

[00:00:00] Lucia Silver: Hello and welcome to the Brain Health Movements podcast. I'm your host Lucia, and as always, our mission here is to be the go to hub for parents seeking answers beyond symptom management, to provide a clear and compassionate platform where world leading experts share groundbreaking research and deliver life changing resources so every child Can have the opportunity for healthy development and a thriving future.

[00:00:26] Lucia Silver: Today, I am beyond excited to introduce to you a true pioneer in the field of pediatric integrative care, Dr. Lindsey Wells. Dr. Wells is a naturopathic physician based in Connecticut, specializing in The whole spectrum of neurodevelopmental challenges, but particularly in autoimmune conditions called PANS PANDAS, also ASD, the autism spectrum disorder, tick borne diseases, and more.

[00:00:56] Lucia Silver: She brings a unique whole family approach to her practice, caring not only for the child, but also for the parents, navigating these complex health journeys. In addition to her clinical practice, Dr. Wells is a lecturer, an author, and the creator of the Well Minded Mamas Club, which supports mothers of children with complex medical illnesses.

[00:01:21] Lucia Silver: Her work is nothing short of transformative and inspiring, and I know today's conversation will be invaluable for any parents looking for answers. Without further ado, let's get started. Dr. Lindsay Wells, welcome to our series, A Mother's Conversations with World Leading Experts. Thank you so much for having me.

[00:01:40] Lucia Silver: I'm so happy to be here. Dr. Wells, Lindsay, if I may, in this podcast, we are going to focus on PANS pandas. Let me slightly and lightly define this first, and I know you will explain it more thoroughly, but before parents switch off and go, What on earth is that? It is a condition that leads to the acute onset, that's sudden or overnight, strange and unfamiliar psychiatric behaviors.

[00:02:11] Lucia Silver: dysregulation, regression, and most particularly verbal and or motor tics, repetitive behavior, and or OCD. It's a shocking autoimmune disorder that has affected my own son, Quinn. But it's still very unknown, not just by the public, but by the medical and educational establishment also. And in my journeys across the globe, Dr.

[00:02:37] Lucia Silver: Lindsay, bringing this vital information to our parents, carers, and followers, I have found that there is a great deal more familiarity in the States, still not enough, I'm sure you'd say. a very long way away from the necessary awareness where it needs to be. But most of our listeners are unlikely to have even heard of or know what PANS PANDAS is or are, let alone that their child may indeed be suffering from this or a related autoimmune condition.

[00:03:04] Lucia Silver: So based on this, please could we start at the beginning and have your explanation of exactly what PANS PANDAS are please? 

[00:03:11] Dr Lindsey Wells: Sure, so I think it would be helpful to define what PANS and PANS PANDAS are. is, and so PAN stands for Pediatric Acute Neuropsychiatric Syndrome, while PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection.

[00:03:31] Dr Lindsey Wells: So essentially what this is, this is an abrupt acute onset, as you mentioned, of a child who has an overnight change in some of their neuropsych type symptoms. So really the most common one that we see is severe OCD. And this can unfortunately present with restrictive food eating. That tends to be a very serious complication or symptom.

[00:03:55] Dr Lindsey Wells: But another common one is something like tics. Like your child never had tics before. They had an infection and then Within a few weeks later, they start to have tics, they start to have this crazy OCD, or maybe tremendous anxiety tends to be a very big one, as well as regression and behavioral symptoms.

[00:04:14] Dr Lindsey Wells: So these are children who maybe I'm just making up a age right now, but maybe they're 11 years old, and then all of a sudden they're talking to you in baby talk. Or maybe they're wanting to watch something that they used to watch, like a cartoon when they were like three years old, or play with toys when they were younger.

[00:04:33] Dr Lindsey Wells: Just something just was different, their behavior, right? We can see this also with the decline in school and academics. So whether that's them presenting with math regression or reading that used to come very easily to them and all of a sudden they don't want to read. We can also see handwriting deteriorate, meaning that their handwriting, maybe they had legible handwriting, it was fine, and then all of a sudden you look at their schoolwork and you can't even read what they wrote.

[00:05:03] Dr Lindsey Wells: So there's a lot of symptoms here that's just acute, so that just means overnight. And I do think a big thing that I hear when a family comes to my office is they know the date. That their child changed, right? They're like, on September 18th, 2024, my child woke up a different child. And for me, that's a huge red flag to really explore further in their medical history, just okay, was there some sort of an infection that occurred prior to this presentation?

[00:05:35] Dr Lindsey Wells: And again, it's not going to be like, they get an infection and all of a sudden, this is what they present with right away, right? It could be weeks after an infection. It's also important to note that possibly the child doesn't present with acute symptoms, meaning like what you'd think when they were sick.

[00:05:52] Dr Lindsey Wells: Fever, lethargy, cough. It could just be them presenting with these symptoms instead. And so in those situations, you have to dig a little bit deeper of was there anyone else in the house sick? around that period of time. And then we see the child following. And I guess, just to be clear, on certain infections that are very common to cause this, the number one is strep, right?

[00:06:18] Dr Lindsey Wells: And if it's just strep that's a trigger, that's where we have that pan does. But there can be other infections. Such as Mycoplasma, which is a respiratory illness. It's very common right now here in the United States. Like this season, there's been a lot of Mycoplasma going on. That tends to be very common, as well as viruses tend to be also a big one.

[00:06:41] Dr Lindsey Wells: But it really could be any infection that contribute. But if it's not strep, then it falls into that category of PANS, rather than just PANDAS. Okay. Okay. 

[00:06:52] Lucia Silver: Thank you. Looking at first of all, just for our, listeners, strep is your good old sore throat. Strep A is that where you come home, throat and cough and aggravated.

[00:07:06] Lucia Silver: For Quinn, I can share that although it didn't feel exactly overnight, it certainly felt very sudden for a child who never had any problems at school behaviorally. We had a sudden call, I had a sudden call from Head of Sen saying Quinn is quite unlike himself. He's being very aggressive. And shouting back.

[00:07:29] Lucia Silver: Dr. Lindsay, he also had seizures, which I know is unusual, but that was part of the bout of issues as well. He started, he had a tic, but he suddenly presented with a whole spectrum of tics, motor and verbal. He was humming, he was singing, he was strumming his fingers on the desk. He was suddenly finding school intolerably difficult.

[00:07:53] Lucia Silver: His handwriting regressed. As you have mentioned, that's sometimes called dysgraphia, isn't it? And he was not sleeping, very anxious. So repetitive thoughts as well as repetitive movements. And he was running away from things at school, literally like running away and hiding, and didn't want to go into school, which is what I'm hearing from a lot of parents, that suddenly a child that was almost like perfect student is won't go into school.

[00:08:25] Lucia Silver: So heightened anxiety. So that was my experience with Quinn. And most upsettingly within that was his not understanding for himself what was going on. He was so beside himself with these overpowering feelings and He talked about a darkness and a coldness inside himself that he just felt depressed and at one point even said, I can't live like this.

[00:08:54] Dr Lindsey Wells: And you brought up a lot of other symptoms here that can be very common. One of them is the school refusal, right? That you're talking about that Quinn experience, but mainly that's coming from severe anxiety. Absolutely. So that tends to be a big, red flag. We also have some urinary symptoms too with children.

[00:09:16] Dr Lindsey Wells: So if a child is previously dry, didn't Was potty trained completely and say they start urinating the bed at night? That tends to be a big red flag as well for PANS. Yes. And one thing I always tell our kids is things are going to get better. Like you are going to get better. PANS and PANDAS is not a lifetime diagnosis.

[00:09:40] Dr Lindsey Wells: It really is. A pediatric, by definition, diagnosis. Of course, some adults do have symptoms, but our kids are so incredibly resilient when they unfortunately have this experience, but it can be very confusing to them because everything that they knew before getting sick. is completely different, and it's just their brain telling them to do things that they don't really understand.

[00:10:08] Dr Lindsey Wells: And it makes it difficult when a child might be presenting with aggression, or they might be defiant, and they weren't previously. And I always tell families no child wants to be sick. No child wants to be angry. No child wants to be aggressive. They really don't feel well, and there's a difference.

[00:10:27] Dr Lindsey Wells: actual physiological, something happening inside of the body that's causing so much inflammation that it's affecting their brain and therefore it's resulting in these symptoms that we're seeing. And so I, my heart goes out to your family and for Quinn for that experience and I'd love to know how Quinn is doing today.

[00:10:47] Dr Lindsey Wells: And 

[00:10:49] Lucia Silver: Yeah thank you. He is making an extraordinary recovery and we will talk about exactly how that integrated whole child and natural approach led him to a recovery. But I wanted to talk about the shocking thing for me, Dr. Lindsay, was If I wasn't working within the brain health movement and I wasn't in connection with the great minds and great experts and most particularly those abroad, the trajectory for a, child and a parent who knows nothing about PANS is almost as bad as the illness itself in that you are in the dark.

[00:11:27] Lucia Silver: Because the symptoms are so clearly psychiatric, in most cases, it is received psychiatrically in the first instance, or if not, perhaps lazily diagnosed as autism, which doesn't make terribly much sense why a child would suddenly present with autism or suddenly present with bipolar or depression, and often the first Port of call is to provide some sort of psychiatric help when in actual fact, I would like to hand the floor over to you to explain what exactly is going on in the body and what, a GP, first of all, wouldn't recognize it in the UK.

[00:12:11] Lucia Silver: I was passed over to, I'm really sorry, I don't know what's going on would you like to see a CBT therapist? And I was like, no. Finally did find a PANS expert who in the UK. PANS is only treated with antibiotics, which treats the infection, but the problem, or the definition of PANS, PANDAS, is not about just the infection, it is the response, the misdirected immune response to the infection.

[00:12:40] Lucia Silver: So you may very well have some results by removing the infection through antibiotics, but the endemic problem within the body has not been dealt with, and that's where, unfortunately, conventional Doctors within the UK don't have, they don't have a facility, they don't have a protocol. They can issue drugs and that's it, unless you go to functional medicine that looks to the root cause.

[00:13:06] Lucia Silver: There is no support, so the NHS in the UK In a way, their hands are tied. So I really want to explain what is the trajectory? What is the what, is the correct course of action with interventions from your point of view, please? Absolutely. 

[00:13:24] Dr Lindsey Wells: So unfortunately, this tends to be a lot of people's experience where they're not able to get the care that they actually need to address PANS, PANDAS right away.

[00:13:34] Dr Lindsey Wells: Unfortunately they're, have to go through many different providers until they get an accurate deck. Diagnosis and an accurate treatment plan, which is heartbreaking not only for the child, but the whole family because this really impacts the whole entire family. But what we do know is that this isn't a completely uncommon condition.

[00:13:54] Dr Lindsey Wells: It's estimated that one in 150 or 200 children actually suffer with PANS, but they're misdiagnosed and they're misdiagnosed with what you said with psychiatric condition, depression. Bipolar, OCD, anxiety, and what we see in those cases is those children, they don't get as much relief as we would like for them to.

[00:14:17] Dr Lindsey Wells: You're talking about in the UK that they give antibiotics, antimicrobials, which I'll get into the treatment for PANS, but what we see, at least here in the United States I'll speak to, is a lot of psychiatric treatment. being given and what we see in those children is they don't really get much better or maybe their symptoms go down a bit but it still persists and they really struggle on a daily basis or worsening is that worsening in symptoms or what's worse is they don't tolerate psychiatric medication at all.

[00:14:51] Dr Lindsey Wells: They have worse side effects and there's research out there to show that these children don't respond. As well to psychiatric meds in regards to having a higher risk of having side effects and therefore starting at lower dosages is absolutely necessary for them. But the reason it doesn't help as much is because we're not addressing the root cause as to why these children are experiencing these symptoms.

[00:15:18] Dr Lindsey Wells: And what it really comes down to is immune dysregulation. So this is how I describe it to parents. When we get sick, Or there's an insult to the body. So I think of the easiest thing of like us getting scratched, right? Scratched on our hand. When we get scratched, what happens? What's going to happen is there's going to be local inflammation, right?

[00:15:40] Dr Lindsey Wells: The area is going to just get maybe a little puffy and red. And then perhaps where there's scratches, it's going to cause a scab. And eventually, over time, all that inflammation and redness and the scab and everything is going to completely resolve and it's going to almost look like nothing happens there, especially if it wasn't a really bad scratch, right?

[00:15:59] Dr Lindsey Wells: Of course, if it was deeper, we might have a scar, but that just might be pretty, benign and it doesn't really seem to affect us. What's happening is when our children are getting these infections, the immune system is responding just the way that it's supposed to respond, which is with inflammation.

[00:16:18] Dr Lindsey Wells: That's a normal healthy response, but after the body has effectively brought down that infection and gotten rid of the infection, the immune system and the body should go back down into balance or what's called homeostasis. But that doesn't happen for our kids. What happens is the immune system stays heightened.

[00:16:39] Dr Lindsey Wells: So the inflammation stays heightened and therefore your response to experiencing the symptoms that we're talking about. On top of that, they just make it more vulnerable for these children of future infections coming their way to then continue to present with these symptoms. So that's how I explain it.

[00:16:57] Dr Lindsey Wells: It just really comes down to a dysregulated immune system. So immune system that's not, it's working, but it's almost hyper. Like it's working at a heightened level, and it's not coming back down into balance. And therefore, it's making those children more vulnerable to these infections, continuing to increase inflammation that's resulting in the symptoms that we're seeing, which is neuropsych symptoms.

[00:17:20] Dr Lindsey Wells: Which 

[00:17:21] Lucia Silver: is neuropsych. And, that inflammation, One of the other ways that PANS PANDAS has been described to me, and it helped me understand a little more about the specific symptoms for Quinn, was basal ganglia encephalitis. That area of the brain in particular is like a brain on fire, but it is like the information highway for the brain, that area, and it does, control or dictate a lot of what goes on with, the regulation of movement and the regulation of thought patterns.

[00:17:53] Lucia Silver: So when it is dysregulated or inflamed, essentially that's hitting almost all of your control centers, isn't it? 

[00:18:02] Dr Lindsey Wells: Absolutely. So yes, the basal ganglia tends to be the area of the brain that is targeted. In this condition, and the basal ganglia, as you said, is the kind of the control center for movement. So that's why these children were present with tics.

[00:18:17] Dr Lindsey Wells: It also is involved in kind of thought patterns, right? And why we have these children who have significant anxiety or repetitive thoughts, OCD intrusive thoughts and whatnot. And yes, the basal ganglia is the area of the brain that we know that is, targeted during these infections or in this condition and but in general, it's a whole immune system dysregulation that's leading to the basal ganglia kind of being targeted there.

[00:18:48] Lucia Silver: And do you think there are warning signs, Dr. Liz? I talk about the whole Toxic load and I know it's a bigger conversation to have about and we have had it in other episodes around the essentially or Most of these conditions in our view and how we try to educate is around. They're all medical issues Actually, they're all medical issues.

[00:19:10] Lucia Silver: They're not genetic issues and they're not and for that reason they can be healed considerably and in some cases reversed. The same for this, in that it is, albeit an autoimmune condition, I understand autoimmunity is complex in that once certain behavior is patterned in the brain with autoimmunity sometimes it's hard to reverse it, that actually you can only have it in recession or regression.

[00:19:37] Lucia Silver: What's your feeling about that with particular diagnosis for PANS? Have you seen it? And we'll come on to case studies for you, but we'll Do you believe it can be reversed? 

[00:19:48] Dr Lindsey Wells: Yes, I do believe that with PANS PANDAS, it's not a lifelong condition, right? I do think that the goal of treatment for PANS PANDAS is to decrease the severity, the frequency, and the duration of flares.

[00:20:01] Dr Lindsey Wells: However, There are two points in time where this condition resolves, and that is either at puberty time, so say a child were to have the onset very, pretty young, around puberty time we can see that it resolves. We don't really understand the complete pathophysiology as to why hormones are contributing, but we do see that's a period in time where it resolves.

[00:20:23] Dr Lindsey Wells: The second period of time is when the blood brain barrier closes. And so for females, that's around 21, and for males, that's around 24. So I always tell parents that yes, we can get to a place that the flares are extremely minimal and are not impacting daily functioning. However, in that period of time, I do believe that it's really important to be on that three pronged approach for treatment for essentially maintenance, just to make sure that we're keeping the flares as minimal as possible.

[00:20:56] Lucia Silver: Yes. Again, bringing the story back to Quinn to make it feel real in the life of a child. We have always done neurodevelopmental work for those parents who are on board with doing Central nervous system calming and regulatory work as well as building core stability, working with primitive reflexes, and that work is daily for us and has always really helped Quinn.

[00:21:19] Lucia Silver: We have worked with a host of supplements and a very rigorous health regime, so No gluten, no dairy, minimal sugar, certainly no processed sugar, only organic coconut, sugars maple syrup, if ever, just to sweeten. Lots of cocoa for those flavonoids and high content cocoa. We have, I have him taking The omegas and the antimicrobials and goodness knows also things to help with his mitochondrial function.

[00:21:54] Lucia Silver: He has in the morning, he'll have a smoothie packed full of vegetables, proteins on his, he has a little bit of an issue with protein absorption, so we have to keep an eye on that. His weight's a little bit low. He has, essentially whole foods that's what's happening.

[00:22:11] Lucia Silver: There's no processed foods in his diet. He has these supplements. He has lots of exercise, lots of outside time. And, we'll come on to it as well, the importance of co regulation and mummy staying calm. I really want to share very honestly with you. mothers and fathers and carers listening to this, that I, really feel like I came close to a nervous breakdown when this happened with Quinn.

[00:22:36] Lucia Silver: So it is a very challenging trajectory for a parent to stay calm and stay in the right space, to find these interventions, to find the right support, to implement the support when you're Child is unrecognizable and gone sideways. It's, the most distressing thing that I think has ever happened, to me.

[00:22:59] Lucia Silver: And that is from within a place of being surrounded by people who eventually did know what was going on with Quinn. But I look back now, Dr. Lindsay, and I think, What would that have been like if the G, if the school was saying, we can't keep your boy in school, he's behaving in a manner that is unmanageable and disturbing other children, even though we've taught him for eight years.

[00:23:19] Lucia Silver: And we know this isn't really the child that we know when your doctors are. You're saying, would you do a brain scan? Could you do a QEEG? And they do it, but they're scratching their heads because there's no results coming back because there's nothing wrong with his brain. When eventually you may not have even heard of a functional medical expert, but eventually you find your way to someone who understands what's going on.

[00:23:43] Lucia Silver: But what if you don't? What if you don't? I think of my, this was last September for us, and he is well and thriving, started secondary school, enjoying it, loving it. He's taking his supplements, he's doing his exercises, he's made the adjustments to his, but it is a fantastic story of health and transformation, and I just feel so grateful.

[00:24:07] Lucia Silver: But this story could be very different. I could be having a very, different conversation with you now. What could have happened, Dr. Lindsay, if we had done nothing, found nothing?

[00:24:19] Dr Lindsey Wells: So unfortunately what happens when a child's not treated appropriately, meaning they're not, they don't have the three pronged approach implemented, which is putting in antimicrobial support, appropriate antimicrobial support. So that might be pharmaceuticals like antibiotics, or that could be antimicrobial herbals.

[00:24:38] Dr Lindsey Wells: Immunomodulatory support, so supporting their immune system and decreasing inflammation, and then symptom support. What could happen, and what we do see, is that with every future exposure to illness, the flares could continue to worsen. So what that means is that symptoms can continue to become more and more severe as time goes on.

[00:24:59] Dr Lindsey Wells: And then unfortunately, what, because it presents as neuropsych symptoms, those children, become possibly over medicated. They may need to be out placed into different schools. They might need to be put into in very severe cases, like a hospital type setting psychiatric hospital setting. And again, that's, it's so important and it's part of my mission and yours as well to get this information out there so that families and children can get the support they need sooner so that it doesn't progress to something more serious.

[00:25:39] Lucia Silver: Yeah, just absolutely takes my breath away listening to that potential outcome. To add to that as well, trauma is being experienced actively as they're going through it. And to add that stress is an inflammatory. issue as well. Quinn at one point was suffering from some bullying around that time and I sometimes wonder there could be enough of a trigger purely from a stressful environment as well.

[00:26:09] Lucia Silver: The PANS then takes place and the symptoms have their full spectrum but that in turn creates more trauma. So your child's central nervous system is in absolute Mess, really. And that, that, which is why I'm hearing you very strongly with the three pronged approach. Antimicrobial, help towards the autoimmune inflammatory condition, and help towards the symptoms.

[00:26:36] Lucia Silver: Because a child that has been through that, Quinn was, so excited to start secondary school. But in no uncertain terms, worried he was going to get shouted at in maths because he has such a strong memory of being shamed and sent out of the class because he was tapping on the desk and humming, and not able to keep up with maths anymore, and was humiliated in the classroom.

[00:27:03] Lucia Silver: He still has Memory of that trauma, even though the PANS symptoms, God willing, are far away and not showing at all. But therein lies exactly my point. There is trauma there as well, isn't there? So we have to be very mindful of what's accruing along the journey as well if it remains untreated.

[00:27:28] Lucia Silver: Secondly, Dr. Lindsay, I've heard of cases, our functional medical expert that we work with, Ended up having to send a child to the States to get treatment because there wasn't anything in the UK. This child ended up in a wheelchair. Could you explain what's happening there with presumably chronic inflammation in the joints?

[00:27:48] Lucia Silver: But I don't know what's happened there when it wasn't treated correctly and it escalated. 

[00:27:54] Dr Lindsey Wells: Yeah, so here, again, it has to do with the chronic inflammation that's occurring and again, it's mainly what we're seeing in the brain, but I do believe there's systemic inflammation that's happening that can then result in some loss of motor function which is why some children.

[00:28:14] Dr Lindsey Wells: unfortunately may present in a wheelchair and it can take a lot of time and extensive PT and also a lot of therapy to try to get them out of a wheelchair. And unfortunately, this has I've had some cases where this is, this has happened after certain infections that there is just a significant decline, not only in neuropsych symptoms, but in full body presentation in regards to their ability to.

[00:28:43] Dr Lindsey Wells: Really function normally, such as walking, and it comes down to a total immune dysregulation, incredible amounts of inflammation, and I think in those cases there's many infections that we, it's not usually one infection, it's usually multiple infections, and makes those cases extremely complex because it takes a Multifactorial approach, especially with the antimicrobials and obviously very heavy, duty like anti inflammatory and immunomodulatory therapies, as well as, I said, extensive therapy including behavioral and PT.

[00:29:26] Lucia Silver: Yes, and a lot of testing necessary again to bring it back to this local example of Quinn when we did do the testing to try to understand what was going on in the bloods and what was the trigger, because there is often a straw that breaks the camel's back there is a buildup, and then there's an exposure.

[00:29:42] Lucia Silver: So we found out that he had been traveling in a car and been in an apartment as well over the summer that was, had mold in it. So I believe that was the sudden the straw that broke the camel's back. But when we investigated into the bloods, we found, yes, mycotoxins, which is the element of mold that is problematic for, for our children, for our adults too, and also found Mycoplasma pneumonia, as you mentioned.

[00:30:09] Lucia Silver: We found strep A and we found Epstein Barr. And bacteria. There was a whole funky smoothie going on in there and it was pretty, pretty shocking to see. So there is a period of investigation that needs to go on, isn't there, to identify where the potential trigger may be, especially if it's in the home environment, because if you've got mold, you don't want to be you can't, you've got to remove the mold.

[00:30:34] Lucia Silver: You can't just keep taking medication to remove the mold. You've got to get out of the unclean environment, right? But you've also talked a lot about tick borne disease. And I know you want to discuss that as well, but I don't want to compound too many questions, but these are all the additional. In infections, triggers.

[00:30:53] Dr Lindsey Wells: So one thing I want to say about PANS, PANDAS and make it very clear is it is a clinical diagnosis, meaning that there's no lab test that rules it in or rules it out. So there's not a test that's going to say, yes, your child has PANS. Yes, your child has PANDAS. It really is an extensive history where you're really looking for those triggers where there was some of an infection or insult to the system and therefore Afterwards, you see the presentation of these symptoms.

[00:31:23] Dr Lindsey Wells: However, I do find lab work to be extremely beneficial, as you noted, because it does help us narrow down what exactly are we dealing with here, if the history isn't so clear. Because how many times have you got brought your child to the doctor where they're sick and they're like, oh, it's just some, viral infection.

[00:31:43] Dr Lindsey Wells: We don't actually know what we're dealing with, just that it's potentially in the range of a virus of some sort, right? And I think a lot of times we might not be testing for certain things like mycoplasma. That's not often tested for at least here in the States in a child, right? That's really where we're investigating it further, but.

[00:32:03] Dr Lindsey Wells: Just as I mentioned just to be clear that if your child is meeting this criteria and there is a history, it's really important to work with somebody that understands PANS to start treatment even before you get the results back from, the lab work. But I do find lab work to be helpful, but it isn't an end all to be all, meaning it doesn't necessarily rule it in and it doesn't rule it out, it just helps us with guidance of treatment.

[00:32:31] Lucia Silver: Okay. So for this very complex condition, which I think we have to accept it is there is a critical role played by tick borne diseases certainly in the U. S. and I know this is an area that you want to touch on and that it certainly affects the children that you see. Tick borne diseases such as Bartonella, And is it Babesia?

[00:32:52] Dr Lindsey Wells: Babesia, 

[00:32:52] Lucia Silver: yes. 

[00:32:53] Dr Lindsey Wells: So other tick borne diseases are some, is Borrelia burgdorferi, which is most commonly known as Lyme disease. So I think a lot of people understand Lyme disease, but what I see in my population is that many of the children, like an alarming amount, either have Bartonella or Babesia. These are also transmitted through ticks, but for instance, Bartonella can be transmitted through other vectors like mosquitoes.

[00:33:19] Dr Lindsey Wells: Lice, sand flies, spiders, cat scratches the list goes on there. But I also want to be clear that tick borne disease technically is not in the diagnosis criteria for PANS. It's not listed as an infection and the reason for that is more political reasons because tick borne disease can be controversial as well as PANS pandas.

[00:33:43] Dr Lindsey Wells: That's really just because, again, providers don't have a great understanding of it, but in my clinical experience. Tick borne disease absolutely needs to be under there. So any child that may be presenting with these neuropsych symptoms, that's not presenting with as much of a relapsing and remitting pattern.

[00:34:04] Dr Lindsey Wells: So what that means is you having a child that presents acutely with these neuropsych symptoms, say it's anxiety or OCD, and then they might present with it for a few weeks. A month or two or more, but then they go back down to baseline. But then what happens is they come in contact with another infection and their symptoms ramp up again.

[00:34:24] Dr Lindsey Wells: That's relapsing and remitting. That's what we see commonly with pans and pandas. But when a child has underlying tick borne disease, or in my opinion, mycotoxins, which is mold exposure, as you just mentioned that Quinn unfortunately experienced, or yeast overgrowth in the gut, what is the child's symptoms, they're persistent.

[00:34:44] Dr Lindsey Wells: Every day is a challenge. You don't really get that, time period where things improve for a period of time and go back to baseline. It's like we have the onset and then things are just different and we don't really get much relief until we start with treatment. So if your child is presenting that way, I really think diving deeper to explore is there a possibility of these underlying infections like Bartonella or Babesia.

[00:35:11] Dr Lindsey Wells: That is so incredibly important. And one other thing I'll say is when a child is presenting with aggression, again, I have very strong feelings about children presenting with aggression that they don't want. To be aggressive. They don't want to hurt others. Like children are all of us, but children especially are very pure in their heart and they want to please others and they want to be good and when they are aggressive, something's going on inside of the body, but Bartonella absolutely needs to be ruled out because that's one of the key features of Bartonella is aggression and rage, and that in children.

[00:35:47] Dr Lindsey Wells: And if that's a symptom, I really just encourage. families to explore that further. 

[00:35:54] Lucia Silver: It seems very, important, Dr. Lindsay. And where in the world, is this everywhere? Bartonella in Lyme? Is it in the UK? Is it Europe? America? Everywhere? 

[00:36:05] Dr Lindsey Wells: It's everywhere. Of course, we're going to say that it's mainly like on the east coast in the United States, that ticks are there, but ticks are, I say ubiquitous, they're everywhere.

[00:36:16] Dr Lindsey Wells: But as I mentioned with Bartonella, it can be transmitted from mosquitoes. Cat scratches or bites, sand flies, spiders, lice those are prevalent everywhere, right? So even if you're not in an area where there's ticks, I'm sure you've, your child's come in contact with a mosquito before. And then with Babesia and another one, sorry, is gestationally.

[00:36:40] Dr Lindsey Wells: If mom has it, it could have been passed to the baby. Gestationally meaning when she's pregnant. When she's pregnant, it could be passed. And then with Babesia, there's evidence that possibly it could be transmitted again gestationally, so from mom to baby, or possibly from dogs. Again, we come in contact with these other vectors so we're actually trying to change the term to vector borne illness rather than tick borne illness because it, there's a misconception like my child's never had a tick.

[00:37:13] Dr Lindsey Wells: And so I do tell families here in the United States, I'm actually more concerned with the ticks you don't find than the ticks you do find, because if you found a tick, you probably would have taken it off. Maybe sent it to the health department to get tested, brought your child to the pediatrician to monitor symptoms so anyway I really feel very passionate that this is an infection that tends to be, or these are infections that tend to be overlooked and not tested for, and that's why some of our children continue to suffer despite getting appropriate treatment.

[00:37:46] Dr Lindsey Wells: For what we think they have. Yeah, 

[00:37:48] Lucia Silver: I'm definitely hearing you loud and clear on that. And we'll look into testing. I presume that's a very directional test for those, is it? And can that be done safely at home? Is it urine? Is it blood? 

[00:38:01] Dr Lindsey Wells: How is it done? It's blood testing. Here in the United States, we use some specialty labs.

[00:38:07] Dr Lindsey Wells: So unfortunately, that's an out of pocket expense. The reason being is that through standard labs, their technology is really not up to date, and so their sensitivity is low, and they don't test for all different species, unfortunately. So you can have, say, Babesia, and then there'd be like three or more species that you need to test for specific for Babesia.

[00:38:30] Dr Lindsey Wells: Same thing for Bartonella. We know that there's, 37 different types that could cause disease in humans or dogs, and then we've picked out about six that are the most prevalent in humans, but When you run them through standard labs, only two of them will be tested for it. So you can't fully rule it out.

[00:38:50] Dr Lindsey Wells: Because you haven't tested for every single one that could be causing disease in your child or in yourself. 

[00:38:57] Lucia Silver: Gosh. Is there any way that you could just approach and assume that they do and take some supplements that would deal with it as opposed to going through ongoing testing to try and identify if it's there or is it very heavy duty treatment if you do have it?

[00:39:13] Dr Lindsey Wells: I do find it helpful to know exactly what we're dealing with when it comes to tick borne disease, because it does change treatment plan, but again, PANS and PANDAS is a clinical diagnosis. Vector borne disease actually falls into a category of clinical diagnosis as well, and therefore, I think if there's a strong history that it is worthwhile to move forward with treatment rather than delaying treatment if you can't get appropriate testing.

[00:39:41] Lucia Silver: Yes. Your research paper, I would love you to share with our listeners as simply as you can, but I found it fascinating. You've clearly left no stone unturned. You are the pan's Sherlock Holmes, as we would say over in the UK, that's you're the prime detective. This is something that you have worked on and have found some information linking cerebral folate, which is like B9, B victim, some type of deficiency and PANS, PANDAS.

[00:40:18] Lucia Silver: Would you explain to us 

[00:40:18] Dr Lindsey Wells: what you found there? Sure. So we published our research in February and what we found was that about 64 percent of children with PANS, and pandas have something called cerebral folate deficiency. What that just means is they don't have enough folate in their brain. So folate, which is B9, is extremely important for many different important processes in the body, including neurotransmitter synthesis, DNA, synthesis, amino acid metabolism, the list goes on and on.

[00:40:50] Dr Lindsey Wells: I'm sure a lot of people have heard about the importance of folate in, During the prenatal period to decrease neural tube defects and therefore decrease the potential of developmental delays in children. But what we have found is that you can have normal levels of folate in the blood, but still not have enough folate in the brain.

[00:41:14] Dr Lindsey Wells: And what happens there is there can be, it's been associated with symptoms like certain types of epilepsy. It's been associated with developmental delays and autism, so it's very common in autism. The estimation is about 70 percent of children with autism may have cerebral folate deficiency, and that presents with communication and speech challenges.

[00:41:37] Dr Lindsey Wells: It's been prevalent in treatment resistant depression. So that's where you've tried at least three different medications at the appropriate dosage without any relief from depression symptoms. It's been associated with anxiety. So think about the symptoms of PANS. We have anxiety, we have depression, we can have some developmental regression. We can have something called speech dysfluency, which might be, as I said, like the baby talk or stuttering or, their speech rate just changing. And so we were Quinn 

[00:42:13] Lucia Silver: had seizures. And seizures. 

[00:42:14] Dr Lindsey Wells: Absolutely. And seizures can happen. And so what happens if a child has this is there's just antibodies that block the receptors on the brain that don't allow enough folate to go in.

[00:42:27] Dr Lindsey Wells: And so what you have to do is you have to treat with high dose folinic acid. Other transport systems can help to shuttle that folinic acid into the brain. And what we found was that this was very helpful for symptom support. So OCD, anxiety, tics, depression and so this is something that because it was so high in our population, and what's interesting too is that the levels at which the antibodies were there.

[00:42:58] Dr Lindsey Wells: They were actually higher than what we saw in children with autism, which is very interesting in my personal opinion. We need to do further research. This was the first study that was done in this population. So the next step would be treatment efficacy of how helpful high dose folinic acid is. But I really do feel like this is a potential piece as to why maybe some of our children are more recovering.

[00:43:26] Dr Lindsey Wells: Exactly. Not recovering, why their symptoms are just persistent, or two is or three, excuse me, as to why those, why certain children are more vulnerable to developing PANS pandas compared to others. And so I think this is a piece, and we were really excited about this research really excited about our findings, but the thing we were most excited about is, The improvement we were seeing in our children by giving them appropriate treatment of high dose folic acid as part of their symptom support.

[00:43:58] Lucia Silver: Wow. And once again, if someone wasn't able to necessarily test for that, maybe they can, would I be okay to throw Quinn straight on some felinic acid? Or is there something that I need to test in this system first? 

[00:44:13] Dr Lindsey Wells: So what the research is showing is that high dose felinic acid is safe and it's effective.

[00:44:19] Dr Lindsey Wells: And so therefore, if you don't have access to treatment, testing that it could be indicated to implement treatment with the high dose folic acid. It just has to be the appropriate dosing, which is two milligrams per kilogram up to 50 milligrams per day. And I always tell parents, you've got to start low and slow with our kids because they're very sensitive, right?

[00:44:42] Dr Lindsey Wells: So I never go to like full doses of anything. I start low and then every week increase by increments. And the reason you wouldn't want to go too fast to the full high dose is that folate and this folic acid can impact neurotransmitter synthesis. Remember I had mentioned that before, so it can increase, serotonin and dopamine, which sounds like that might be a great thing for our children that have anxiety and depression, but doing it too quickly can sometimes present with agitation and irritability.

[00:45:14] Dr Lindsey Wells: So that's why I always say do it in increments, but you would ultimately want to get up to that dosage based off of their weight. 

[00:45:21] Lucia Silver: And it's not contraindicated if you're taking a biotoxin binder, which is something that might be helping to remove mold or mycotoxin, or, and it's not contraindicated with zincs and magnesium and a lot of the other supplements that these children might be taking, so it's okay thrown into the mix.

[00:45:37] Dr Lindsey Wells: It's okay thrown into the mix. I always just try to space things out away from a biotoxin binder just by at least two hours just so the binder doesn't bind it up but it's fine to include and sometimes people will then add in some B12 just to help with the, that pathway, but That's not necessary, but a lot of people added 

[00:46:00] Lucia Silver: in.

[00:46:02] Lucia Silver: Congratulations to you. Please, keep going. You're so beautifully valuable and important to us with this work. A few other things. Would you be able to give us any guidance for that parent who doesn't have access to the funds, doesn't necessarily even have access with the funds to the experts in their country?

[00:46:32] Lucia Silver: Can they do any remedial work themselves at home or through books? Or through just personal endeavor without necessarily getting to see a clinician in the first phase if they think that this is something that their child might be suffering from. Because I know, categorically, if they go to their GP in the UK, that's not going to take them on a pathway that they need to get to clinicians like your good selves or to, in the States, or to functional medical experts in the UK that know about PANS.

[00:47:04] Lucia Silver: So let's just say for a minute they can't. 

[00:47:06] Dr Lindsey Wells: What, 

[00:47:06] Dr Lindsey Wells: can we do? It's a great question. I feel like trying to figure out that three pronged approach for your child is important, right? With the number one being actually the anti inflammatory piece of it. I think that helps to bring down the symptoms quickly and it also helps to is almost like your own diagnostic trial to see if there is something going on with the immune system that's inflammatory in nature.

[00:47:32] Lucia Silver: Could that be a neurophen, a little bit of ibuprofen immediately to see? Absolutely. 

[00:47:36] Dr Lindsey Wells: So it's where you use NSAIDs. My favorite is ibuprofen. And so what you're looking for is doing the dose at 10 milligrams per kilogram. And, essentially, you don't want to go over 600 milligrams per dose, okay? So that's what the research shows, that NSAID use can help to decrease flares and also shorten their duration as well.

[00:48:02] Dr Lindsey Wells: And so I always tell people, you can try a short trial of this. You can give it a week at dosing at that appropriate weight, amount, twice, two to three times a day. If you notice your child's Symptoms improving significantly. You're on the right track to move forward and regarding investigating PANS pandas and getting them then on anti inflammatories.

[00:48:29] Dr Lindsey Wells: Appropriate antimicrobials and symptom support. My favorite natural alternative to ibuprofen, because you don't want to keep kids on ibuprofen for a long period of time, you also need to give it with food just to be clear and not before they lay down because you just don't want it to present with gastrointestinal issues, is something like high dose curcumin or turmeric can be very helpful as well, where you give it throughout the day, again, dosing once a day.

[00:48:57] Dr Lindsey Wells: is not going to be maybe effective enough that you might have to do it two to three times a day. There. So I think that is always an amazing trial and you'll be You, it could be a wow for the family of, wow, my child is much better when we have them on ibuprofen. And then you know, this is inflammatory in nature.

[00:49:18] Dr Lindsey Wells: This is not psychiatric. Yes. Because ibuprofen would not be helping a psychiatric condition. Maybe it would, but not to this extent that you see where a child is. Their anxiety is gone, they're able to go into school, their OCD is minimal, the days just seem like how it used to be until that six to eight hour period of time comes back and then you have to re dose them.

[00:49:41] Lucia Silver: Yep, and that's you can spend a lot of money without having the money going down the wrong route. So I think that's hugely helpful to identify in the get go it's inflammatory and give yourself that reassurance that your child hasn't suddenly, which is ridiculous anyway, got some psychiatric overnight problem.

[00:50:01] Lucia Silver: I feel for anyone who I think most parents don't believe it because they know they're children, but it's pretty awful when the medical institution and the educational institutions are telling you that is the case. You start to, you can start to doubt yourself. Two more things. If we may, some good news case studies, Dr.

[00:50:21] Lucia Silver: Lindsay, tell us about some perhaps little stories of in clinic where this was the child that you received. This was the treatment and this was the outcome just because it's a, it can feel a little bit doom and gloom. This story of Pan's Pandas and it really isn't. I know that you have some wonderful stories to 

[00:50:37] Dr Lindsey Wells: share.

[00:50:38] Dr Lindsey Wells: Yeah, I have so many stories. I'm figuring out which ones to, I guess I'll discuss one that I published in that paper as a case study if anyone wants to go back and look at it. But this, he was 17 years old when he came to my office. He was presenting with significant OCD to the point that he was out of school.

[00:50:58] Dr Lindsey Wells: He had been to residential treatment because he was just, at home. He was, had insomnia. He wasn't able to sleep just because he had intrusive thoughts while sleeping, which was just absolutely heartbreaking. He was not able to bathe himself and so his personal hygiene went down significantly. He also had some food restriction going on.

[00:51:22] Dr Lindsey Wells: And so this. He was 17 at the time. He had a history of PANS previously and did a lot of high level intervention, including IVIG, which is immuno, intravenous immunoglobulins. He ended up having to do plasmapheresis without much improvement. Because of the severity of his symptoms, he couldn't really tolerate antimicrobials.

[00:51:44] Dr Lindsey Wells: We found that he had cerebral folate deficiency in our initial, consult from testing and we had recommended that he go on a dairy free and gluten free diet and then, implement high dose folinic acid and by the follow up appointment, His anxiety and OCD had significantly improved and he continued to do better and it was pretty amazing because it was just based on that felinic acid because we didn't have antimicrobials in.

[00:52:15] Dr Lindsey Wells: And I'm really excited to report that this individual, he's in his 20s now, he went to an Ivy League college. He lives on his own in his own apartment. He got an amazing job making a very great living, and just to see where we were of this child being out of school, in a residential treatment because of the OCD, to now being Fully functioning and living on his own.

[00:52:44] Dr Lindsey Wells: Ivy league degree. It's just amazing. I have many other stories where I had children that come in one in particular. I remember strep was their main trigger. The child looked very ill, like very pale. Again, was out of school, making things very challenging at home. Parents, the situation between the parents were not great because of the stress of this illness that causes on relationships.

[00:53:16] Dr Lindsey Wells: And we started to address using antimicrobial herbals. So I used Berberine, oregano, and goldenseal, and I rotated those. I used high dose of, some curcumin, and I put in some antihistamines in there for him, and helped to work on his adrenal glands. Just because that fight or flight response that you had previously talked about and he came back and his coloring was completely normal.

[00:53:48] Dr Lindsey Wells: The kid, like it was absolutely amazing. And then within some short months he was back into school. And so his flares are now so minimal that really only mom can tell that some of the OCD is coming back. Maybe a trigger is like congestion that we know. And then we get on top of it with a lot of.

[00:54:08] Dr Lindsey Wells: Antioxidants like vitamin A and vitamin D and zinc and lysine and vitamin C and we're able to maintain so You know, I just want to say It's really hard when you're in it as a parent to see your child suffering and for that child But the children that I see that come out of this which is all of them.

[00:54:31] Dr Lindsey Wells: They're so incredibly resilient It really, they take my breath away. I don't know how else to describe it. Like when I see my kids going to college and now in their careers and having relationships and going through difficult things like a breakup or they get fired from their job and they're, they handle it with such grace and I've asked a few of them, like, how do you.

[00:54:54] Dr Lindsey Wells: How did you do this? Like how, you handled this so well, I'm so proud of you. And they're like, this is nothing compared to what I went through as a child. Although it's hard and it's heartbreaking, you're, they're becoming resilient individuals. And so I really just hope all families hold on to that because you're going to see a beautiful, strong individual grow out of this challenge.

[00:55:21] Lucia Silver: Thank you. I'm struggling not to cry. I, it is, I really feel this so deeply personally and for the many parents listening right now. You have a wonderful book that you've written, which Quinn and I used when we finally were clear that this was what we were dealing with, and I needed to explain it to him.

[00:55:43] Lucia Silver: He doesn't have siblings, but it's a particularly wonderful book. For a family with siblings who of course are deeply impacted by seeing their brother or sister so unrecognizable and dysregulated and getting to some extent albeit the attention for a negative reason, but it's called Super Sam and the Battle Against Pan's Pandas.

[00:56:07] Lucia Silver: It's a fantastic communication tool to explain what's happening to the child and the rest of the family. And another huge congratulations to you on that. It can be bought through Amazon. We will, of course, be sharing all of this in the notes on today. And also all your links to your wonderful information online at www.

[00:56:30] Lucia Silver: drlindsaywells. com Thank you so much for sharing your insights and expertise with us today. I can't tell you how important this is going to be. We will be producing a free guide. All the nuggets of the golden nuggets, as we call them from, everything that Dr. Lindsay has said. We might even scrape some more from her with some top 10 lists of antimicrobials and top 10 lists of, that we'll pack in as well, that will be free for you to download.

[00:57:01] Lucia Silver: They'll be in the show notes as well. And if there is anything else that you would like to ask or know, please let us know. We are open for business always to keep this dialogue going. If you've had an aha moment, let us know. If this is making sense to you, let us know. Dr. Lindsay, thank you so much for giving us your time and brilliance and your research.

[00:57:25] Lucia Silver: Thank you for having me. It was 

[00:57:27] Dr Lindsey Wells: a pleasure. 

[00:57:28] Lucia Silver: All right. That's it for today, everybody. Check out the show notes. Have a wonderful afternoon. Take care. Boundless love and hugs from all of us at the Brain Health Movement.