What are some treatment approaches to addressing neurobehavioural issues in children and how long does it take for us to see results?
Naturopath and Nutritionist Kate Holm joins us today to discuss neural behavioural issues in children including what cravings might indicate, options for non-invasive testing, how to balance family dynamics that come along with having a child with a neurobehavioral condition, and the various best practices for treatments including, diet, supplementation and treating the whole person.
Covered in this episode
[00:49] Welcoming Kate Holm
[01:14] How Kate became confident in treating neurobehavioral issues in kids
[05:58] What cravings might indicate
[08:00] Avoiding wheat and dairy
[09:31] Food sensitivity testing and gut permeability
[14:15] Discussing treatment options
[17:32] Potential side effects of inulin
[19:42] Setting expectations for results
[21:55] Non invasive testing for children
[25:15] Key inclusions on intake forms
[26:57] Navigating family dynamics
[37:32] Hallmarks of PANDAS and PANS
[43:49] Treatment approaches for neurobehavioural issues
[50:04] Treating the whole person
[53:14] Supplements to consider
[58:21] Common deficiencies
[1:06:26] Teaching resilience
[1:11:19] Thanking Kate and closing remarks
Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook. Joining us again today is Kate Holm who's a naturopath, nutritionist, speaker, and previous lecturer who recently took on her most important and exciting role as a mum. And today we'll be discussing kids' neurobehavioural issues. Welcome back to FX Medicine, Kate. How are you going?
Kate: Good. Thank you so much for having me again.
Andrew: An absolute pleasure. Now, being not only a mum but also a soon to be mum again, how did you become confident in dealing with neurobehavioural issues in kids? Because they're quite complex, quite demanding.
Kate: Yeah. Complex and demanding, yes, but there's actually a lot of simple underlying work that you can do that can help to build your confidence if you are still learning. And to be honest, I have to say that my first exposure to working with children and seeing just how quickly things can change was, while I was a student and I was also working as a nanny, I was with one particular family - I’ve nannied for many families over the years - but this particular family had a daughter who was showing signs of Tourette's, and she had quite a lot of behavioural issues, and tantrums, and meltdowns and all those sorts of things. And I was there, learning what I was learning in college but employed by this family not in that capacity, so kind of biting my tongue around the foods that they were eating and some of the practices that they had within the family.
One day the mum asked me what I thought and if there was anything that I would explore from a natural therapies point of view. And I think I must have been maybe in second year, possibly still in my first year of college. So with my very, very limited knowledge, I suggested that the family trial a gluten and dairy-free diet with their daughter.
And the impact was so profound that it actually had me questioning like, "Was that actually what did the trick?" And it wasn't until they trialled her back on it, and it actually turned out to be dairy that was the biggest issue for her. And she would go from having fairly well-maintained, balanced, very, very lovely behaviour to having even something as small as a small sliver of birthday cake or the mum was actually giving her MILO in a milk alternative, not realising that there's milk solids in MILO, and go from 0 to 100 almost instantly.
So it became really evident how much food was affecting her behaviour, and that was without any supplementation, any really thorough investigation or any other interventions. So I think, for me, that was sort of the starting point of realising, "Hey, there's actually a lot that can be done with these families," and from there... I mean, I've always loved working with children in that capacity at that point in time, that I think I’m of the nature where I just jump right in and obviously not be reckless but trust that I will have the skills and I will have the knowledge available to me and to also know where to seek that out when you do come up against things that you're uncertain about.
So, yeah, to answer your question, I think that's how I got confident. I just made a start.
Andrew: Well, it was from an early positive outcome but you had this very lucky position to be employed as a nanny. So obviously I'm going to assume that they're a higher socioeconomic standing and had the availability, and the choice of various food groups, and dare I say, the knowledge. I don't know what knowledge they had. So the changes that you were espousing, did they find those changes easy to implement?
Kate: Not initially, no, despite them having definitely a high level of education. It’s really interesting, I think, when you get to step inside families in that capacity. Having that level of education doesn't always correlate with good nutritional practices or good family dynamic and lifestyle practices. So, yeah, it wasn't necessarily easy.
And I find this often with kids that sometimes the very foods that they're craving are the foods that are setting them off. So when you've got a child whose behaviour is already difficult to navigate, trying to take away some of their favourite things can be really, really big and that's so daunting for parents.
So I don't know if it was easy, but the results were so quick. I'm talking within a matter of weeks that there was at least enough change to inspire them to keep going, that I think everybody could see, it was making the household more calm, it was making school drop-offs and pickups and all those sorts of things easier. So it becomes worthwhile to push through the bits that are a bit challenging because you're getting such a positive result.
Andrew: For instance, magnesium around the time of a period is potentially because of the high... Sorry, chocolate around the time of a period because of the high magnesium content. When is it an allergy, and when is it what you need?
Kate: Yeah. I think it's both. I really do see both, and I feel that kids probably... Because in some ways, yes, their presentation could be a lot more complex but they tend to have less layers than we do as adults. Not always. That's a generalisation. But you sort of can see more clearly either end of the spectrum. And sometimes it's a bit of trial and error, short of doing a million tests on a small person, which I like to avoid where possible. But I do really think it's both.
Sometimes our body is very intuitive, and it knows what it needs and we should go with that intuition. But if that intuition is to be binging on MILO, for example, or excessive amounts. I don't think we could say that some of the milk chocolate brands are high in magnesium really, then I think perhaps we need to acknowledge that it's something else going on. And it is a bit of a chicken and egg situation where, is it the cravings that are potentially driving changes in gut microbes and therefore perpetuating the cycle of cravings? Or is it a different microbial composition that's then driving us to eat certain foods? And that's definitely something else to consider in everybody but particularly in kids with neurodevelopmental or behavioural issues.
Andrew: Right. So potentially it could be something that they need because they are craving it. They are almost addicted to it in these instances like casomorphins and the gluteomorphin.
Andrew: But what I think is interesting is that many naturopaths would choose wheat avoidance as the first thing over dairy. Have you ever looked at which ones have got a greater preponderance? And have you ever tried avoiding both?
Kate: I would most often try avoiding both, particularly when we're thinking about autism spectrum disorders. And if we look at the research around diet, there is great success for that gluten and casein-free diet. So I actually find it easier personally—well, not easy necessarily for the family—but a better starting place, if we can get rid of both, to get rid of both and then you can always trial that reintroduction.
But I think I'm stealing Mark Donohue's analogy again, the boat with five anchors. So if you take out the dairy and it's also the gluten, then you're not necessarily going to see the full effect of removing that dairy because you've still got something else weighing it down. So I think it's really important to actually start with both and possibly start with doing some food sensitivity testing if the food does seem to be a big issue so that you can get that really clean slate. And obviously not with the intention in every instance of staying off foods forever, but then at least you can see which food is having which effect rather than having this murky, maybe not really a response at all. So, yeah, I'd be inclined to do both.
Kate: It's going to depend hugely on the lab that you use. So I think it's really important to do some investigation. There's so many tests available and just because we can test something doesn't mean that we necessarily should or that the information that we're getting is usable or accurate.
So it's important to ask the questions, look at some research, speak to all of the different labs if you're feeling confused or not sure where to go. I'm very fortunate that in my early years of practice, I was also working for one of the functional testing companies. So I did get to look quite closely at that data and understand a lot more about what was coming out of the labs and maybe what wasn't coming out of other labs.
So with food sensitivity testing, I mean, there's so many ways that you can go about it and a lot of parents are accessing just commercially available tests now as well, which I'd really encourage them not to do because, yes, you might be able to buy on Groupon or whatever and it's $50. But is that necessarily going to give you usable information, or are you going to start avoiding foods that are unnecessary for your child or family to do so?
Andrew: And indeed the development, which is what you're trying to combat, isn't it?
Kate: Yeah, exactly. And often these children can be picky eaters as well. So you don't necessarily want to be taking more off their plate, and I think it's finding that tipping point where you're getting progress and you're leaving them with foods that they will actually eat. Because it's every parent's worst nightmare that, by changing their child's diet, particularly if we're thinking about children on the spectrum who can be quite particular, that they'll just go hungry and not end up eating anything. So, yeah, it is quite a fine balance.
I do feel confident in some of the testing that's available and I think also working with or looking at the family's support team and who else they're seeing. So if they're working with a paediatrician, I might be more inclined to do just an IgG test because that is some literature that's often well-accepted by paediatricians and they can see the merit there. There's definitely some more naturopathic tests available, which I actually find to be really, really useful. However, I would never want that to cross the desk of a paediatrician because they'll say, "Stop seeing that naturopath. She's made you waste your money."
So I think it's really important to navigate all of those moving pieces and just speak really openly with the families as well about the limitations of the testing because no test is perfect, but some testing may move us in the right direction so that we can start to see what the next layer is that needs to be peeled back.
Andrew: One of the other issues I find is that people see a nail and so they turn into a hammer. So they'll see a whole massive list of foods which you are allergic to or sensitive to and so it's avoidance rather than asking the question, "Why are you reacting to this?"
Andrew: Where then, do we intercede? Where's your best bet on intercedence?
Kate: So, I mean, when there's a food issue and when we're seeing, you know, those antibodies show up in the blood, then for me that food does need to come out for a period of time, but I always, always, always preface that this is not a long-term thing. For the testing that I'm doing mostly, we're not looking at that IgE-mediated response so it's not a true allergy. It's more that food sensitivity. And often that comes back to gut permeability and the fact that these food proteins are able to get into the bloodstream in a form that's not appropriate. It's not well enough digested so hence the immune system jumps on it and mounts that response.
So the problem isn't actually the food itself. The problem is that intestinal permeability and the fact that you need to be doing some healing there. But until you take out that aggravating factor, you can’t actually get to do maybe some healing but not sufficient healing in order to get that really long-term change. So I think it's definitely prefacing that with patients, because I have seen many families who've possibly been to other practitioners or they've done testing themselves and thought, "Okay, well, this is a food allergy. Now, we can never eat it," not realising that having such a restricted diet in itself can actually be problematic.
Andrew: Yes, absolutely. Do you employ simple things like, you know, the demulcents, the mucilaginous agents, the slippery elm, that sort of thing? Do you employ proteins like the... Let's start with glutamine, but what do you call the...
Kate: Amino acids.
Andrew: Yeah, branched-chain amino acids. Thank you. Do you employ BCAAs and glutamine or even rice protein powders, things like that, to help settle the gut down at all?
Kate: Yeah, sometimes. So I'd say probably the thing that I often move to first and it's a really, really simple thing to introduce, is inulin. So really good prebiotic. And I have to say I... I didn't steal it, I learnt it from the Nemechek Protocol. And I don't know how much... Are you familiar with that protocol?
Andrew: No, please.
Kate: Okay, Dr Nemechek. I apologise. I couldn't remember his first name, but essentially has a protocol for autism spectrum disorders and it's largely focused around fish oil and inulin as the main interventions. And he gives a really good analogy around how the inulin works and essentially talks about how we have, in the small intestines, our birds. So the microbes that are supposed to be there, and they're the birds. And the large intestines, we have the fish. And sometimes when we get this dysbiosis, it's because the fish have moved up into the sky and then now with the birds where they're not supposed to be. I thought that was quite cute and easy to explain for patients.
And essentially what the inulin does from his account is that it helps to feed the birds and push the fish back down into the ocean. And I've actually found it to be a really successfully intervention in starting to get some sort of microbial balance, and maybe it's not the only thing that we call on but it's fairly palatable. You can pop it into a smoothie or into almost anything that a child is already eating without them noticing that it's there, because that can be a really big thing to kids who are a bit picky, and start to re-feed those organisms that we want to stick around without feeding the guys that we don't necessarily want there.
In terms of using amino acids and glutamine, definitely, I would use them. I love herbs, so I'm very much inclined to go for the demulcents. So like you mentioned, your marshmallow root or liquorice. I love slippery elm but it is endangered so I try to use it sparingly where possible and instead go for something like the inulin or the marshmallow which would have a similar effect.
But, yeah, I do think there are simple things you can do like that, that again, thinking about children who are potentially on the spectrum or who may be just not that compliant, or we're dealing with these behavioural issues, it has to be easy for everyone, it has to taste okay, and it has to also give you some sort of effect pretty quickly to keep people on board.
Andrew: What about side effects? I mean, early on there was talk... I think it was quite large, 40% of people taking inulin that got excess wind. Now, part of me says if wind is the worst thing you're going to get and it seems to be transient, then handle it and move on. But, you know, ADD, ADHD, ASD, kids have a really mucked up milieu of bacteria and other bugs in their guts. So how does it work with the clostridiales, you know, prevalence of that taxa?
Kate: So definitely if you go in too much too soon, you can absolutely cause people some problems. And I would agree that it's this transient kind of discomfort, that in children who are really, really hypersensitive, then that discomfort is not just, "I've got a bit of gas, I'll deal with it." It can be hugely problematic.
I think I'm probably more conservative with my dosing around herbs and supplements anyway to begin with, but sometimes I'd be starting with an eighth of a teaspoon once a day and then just seeing how people go. Because oftentimes when you're getting that big reaction and as you're starting to feed the beneficial microbes, there can be a bit of gas production. But if you go low and slow enough, you can often mitigate that.
And I think, again, it's just prefacing it with families that, "Okay, maybe you're going to get a little bit more windy but it shouldn't last for too long. And if it does, let me know and we'll change course," because the last thing I want is for people to be suffering the side effects or to just ditch everything completely.
Andrew: That’s right
Kate: So just staying in that constant communication, and often that is needed with these families, and setting up your personal and professional boundaries around that, but being a little bit more available and understanding that things can change for them quite quickly. And there often is a lot of anxiety and a lot of family dynamics that you're trying to navigate. So, yeah, I think communication is probably key.
Kate: Gosh, it's so hard to say because it depends a lot on the age of the child. It depends a lot on the past health history of the child. It depends on how many factors you're potentially considering are there. And often I guess I'm thinking about the more severe children and you've got to pick that lowest hanging fruit. So you're doing one thing but you might have five other things in your mind that you want to be working on.
So I would say that families can see change anywhere from fairly immediately but sometimes it is more like 6 months that you need to be persisting and not necessarily chopping and changing everything along the way. But in actual fact, it can just take that long for inflammation to settle both within the gut and in the brain for that kind of biochemistry to normalise, whether that's in terms of nutrient assimilation or neurotransmitter production, or whatever it might be.
So there's definitely no hard and fast rule. But also I think setting that expectation with families early on and asking them the question, “How long are you thinking this is going to take?" And oftentimes people have been in a chronic state of just uncertainty and trying to get a diagnosis and trying to get somewhere with their children, that they don't actually have the expectation that it's going change overnight because they've been living it for maybe months, maybe years.
So I think that, while it's amazing when you can see things change quite quickly and that's definitely possible, it's often okay if it doesn't change so rapidly. And I would really encourage practitioners to stick with what they're doing because, if you know that you've got an intention and a purpose behind what you're doing, short of it obviously causing side effects, or you're thinking, "Actually maybe I've not hit the mark," sometimes it does just take that little bit of perseverance to get the change you're after.
Andrew: And you and I have spoken before about testing and not wanting to involve invasive tests. But what about non-invasive tests like stool analyses or intestinal permeability test? Do you employ them? And how often do you retest, keeping in mind the costs that are involved? I mean, some of the stool tests are extraordinarily expensive.
Kate: Yeah. I would retest very infrequently to be honest. If a family wants to, then absolutely. If they're willing to spend the money, they want to see that change on paper, then sure, let's go ahead and do a retest. But usually I'm using that testing as a starting point to narrow my focus so that I can know where to best spend our energy and supplementation and diet changes and that sort of thing.
So there's a lot of really non-invasive tests that you can do for children, and I'm talking from babies upward. So definitely stool testing is something that I would do fairly frequently with this group of the population. Food sensitivity testing, as I mentioned, but keeping in mind that an antibody test isn't really going to be effective for children until they're two years of age. So you're limited if you've got kids below that age group.
The other one that I really love is the organic acids test, and I find that it almost... It's giving you a zoomed up snapshot of all the systems in the body. So, again, you can decide, "Okay, do we need to go in and do heavy metal testing, or do we need to go in and do stool testing?" or some other sort of testing based on what's coming out of that, even though it's not necessarily giving specifics in terms of, “Yes, you've got X, Y, Z organism or you've got X, Y, Z heavy metals." So that's a really good snapshot that you can do. And that's just a urine test. They do have paediatric collection kits, so you can use it inside a child's nappy if they're still wearing nappies.
What other testing would I do? I really try to avoid blood tests where I can, but if you've got a child who has rapidly deteriorated or has really severe symptoms, then sometimes it is necessary to actually do that. And I find lots of kids are okay with it and it's typically the parents who are a little bit more concerned. Obviously depending if you've got a child who's maybe got a lot more sensory issues or is quite severely on the spectrum, then it might not be quite as achievable for them. But children who are perhaps more high-functioning or if we are thinking it's ADHD, or something like that, they may be able to tolerate it better.
There's lots of testing you can do with genetics. And while it doesn't necessarily tell us current involvement of those genes, it can, again, just be a way to feed you in the right direction so that you're not missing things. So there's so many tools available to us and I think just, again, having that conversation with families around where their financial expectation is, what can they afford, what's going to be too much. And sometimes families if they have been going through it for a really long time, they just want to do it all because they want some answers. They want to know what's happening, and they want to be able to get that change.
Andrew: What about your questionnaire, your intake questionnaire, do you ever look into the vocations of the parents or where they live for instance, nearby pollution? One of the things that I was really made aware of was lead, particularly in the mining towns, but also where there's older plumbing available.
Kate: Yeah, absolutely. So in the intake questionnaire, with children, I'm generally asking about the child's previous health history but you also want to know about Mum's pregnancy. You want to know about the birth. You want to know about those early days, weeks, and was there any intervention with, say, antibiotics or other medication. You want to know if it was a natural conception or if the parents conceived with IVF, how long it took them to conceive. Was there a lot of medication used throughout the pregnancy? Were there any of those environmental pollutants? What is Dad's occupation and Mum's occupation? Yeah, those sorts of things are definitely relevant for children's health for sure.
And I think that usually when... I mean, you want to know, if someone's presenting acutely, obviously what's happened around the time that symptoms showed up. But a lot of the time, when we're talking behavioural issues, Mum and Dad have kind of been aware of it from early on. And it's really hard to get anything diagnosed in young children. So often it's just parent's intuition, telling them that something's not quite right. So talking more to that and then it is all of those epigenetic factors and things way before the child was even conceived.
Andrew: I've got a double-barrel question here, and that is, how often do you need to treat not just the patient, the child, but indeed one of the family members? Especially male family members given that we're talking about epigenetics here. Do you find that there's a tendency for male preponderance for these neurobehavioural issues?
Kate: In the male children or...?
Andrew: Male children and adults, or male bloodline.
Kate: Yeah, look, definitely, we know statistically male children are more likely to present with things like your ASD. However, it's such a diverse range. You definitely do still get those behavioural disorders in female children. And I would say in terms of treating the whole family, absolutely. I would find that often you end up with another family member as a patient. And even if maybe Dad is showing some similar traits, whether, on the spectrum themselves or possibly ADD or ADHD in the past, more often I would have to say that I end up working with Mum. And this is a generalisation, but I think that's more around the fact, if Mum is the primary caregiver, ensuring that she's nurtured and is able to actually facilitate the changes that need to happen within the children.
So absolutely. If you could have the whole family and work with everyone, that would be amazing, but sometimes I'm thinking of a couple of families where it is, sort of, that quite obvious inherited behavioural traits or behavioural disorders that have perhaps come from Dad, but Dad's okay with it now and has a job, and is getting on with life, and doing his thing. So absolutely if we can filter some healthy habits, or dietary changes, or whatever it might be into Dad's life as well, that's great. But I'd say Mum would be more of the priority if she's stressed out by the children's behaviour and having to deal with it day in and day out and really needs to be the one to actually implement what you're prescribing.
Andrew: How often do you have to include or be cognisant of family dynamics though? And how often do you find... You just mentioned that the father has gotten a job and gotten along with life and learnt to live with it. How often do you find that the parent has found their gift? Not just to accept it, but to indeed use it for their benefit.
Kate: Yeah. I don't know if I could speak to exactly how often, because certainly you see that not the case in some family situations. But a lot of the time I think sometimes our societal constructs and things like having to go to a mainstream school and having to tick certain boxes throughout your childhood and adolescence, that's what really doesn't resonate with children or adults who perhaps do have, whether it’s learning difficulties, we'd call it, but just a different way of learning.
So once you’re out of the system and you can make some better choices for yourself, whether that’s working in a job that sees you being outside for most of the day or being your own boss so you're accountable to your own rules and regulations, that can really serve people. But at the same time, there's definitely those who would continue to do the next step that society expects and be eating a very typical Western diet and maybe drinking alcohol, and coffee, and things like that that can continue to exacerbate some of those issues that were presenting in childhood. They might just look slightly different now in adulthood.
So I think absolutely. There's a chance that, or more than a chance, of people finding their gift and being able to really utilise the way their brain works, the way their body works to serve them, but not always. Where my clinic is, I do see a lot of families who are slightly lower socioeconomic status. And whether that's playing a role in terms of there's just a necessity to put one foot in front of the other, and so maybe not always having the level of education around diet, or the ability to make better choices with their diet. So there can be some situational things that see people still a bit trapped within whatever their original presenting condition was.
Andrew: But their...
Kate: In terms of...
Andrew: Sorry, sorry. No, you go along.
Kate: I was just going to say, in terms of working with family dynamics, that's always a consideration with children because not only... Yes, you've got the paediatric patient in front of you but you've got siblings and that can play a really big role as well. If you've got a particularly high-needs child, being supportive of the siblings' needs and how that can affect them in terms of their emotional development, or just what they're witnessing in the house, or expectations of responsibility, or where they might have to pick up slack where another child isn't able to.
And definitely parenting styles can be a really big thing and realising that sometimes these children who do have additional needs don't necessarily resonate with particular parenting styles, or very, very strong boundaries, or sometimes they need extra-strong boundaries. So just navigating that within each unique family is really important.
And that's where I have resources available. I often direct people to podcasts that I find really useful or experts in that field. But oftentimes you do need to refer on maybe to a counsellor who can provide that expert level of care around those particular issues because it's so crucial in everybody's well-being when it's something that you're living day in and day out. So I think it absolutely needs to be a consideration.
Andrew: Controversial question though. This actually happened to a dear friend of mine who... I'll pre-empt it by saying the father is quite shy. And what happened was the son was very shy at school, quite withdrawn, so on and so forth. This parent who is a loving, caring, balanced rational person obviously wondered about was there any issues, took them to a paediatrician who almost immediately diagnosed a neurodevelopmental disorder. And I can still remember the conversation asking, "Do you think he might be just shy like his dad?" And is that okay to be just shy? Can't we all just be different rather that within a very limited box of normal?
What happened from there, of course, is that he then went on to star in school plays and, you know, we say the word "come out," but he started to express himself more openly. And he still has this shyness. Big deal. It's not a diagnosis. How often do you find that people are caught in a box? How often do you find that people either, they come to you with an issue and the box is denied but there really is no box but a diagnosis that needs to be acknowledged?
Kate: Very, very often. I think families can be sometimes seeking one way or the other. So those who really don't want their children labelled as anything, and those who are desperately looking for some support and for an answer so that they can move forward and make a plan or whatever sort of resonates with them. And I think that's one of the benefits of working in the space that we do.
So as a naturopath, as a nutritionist, I don't necessarily need that diagnosis in order to implement things that are going to be supportive. It can help if there is a diagnosis and obviously everyone's on board and agrees with it in terms of directing your attention. But at the same time, if you're thoroughly taking a case history and finding out, "Okay, well, what are the pain points for this individual and this family day-to-day?" then it doesn't need to be called anything.
And with that example, if a child is shy but it's not affecting their ability to perform at school, and it's not affecting their ability to form social connections, and it's not causing issues within the family, then do you necessarily need to address it? I love things like astrology and looking at all different personality types, and I just think... I mean, personally, I would consider myself to be an introvert, and I look at childhood Kate and I was so painfully shy. And I don't think that was a disorder. I think that was just my personality, and that's how I learnt the world, to sit back and observe. Whereas other people are like, "I'm just going to get out there and experience everything, and that's how I'm going to learn the world."
So, yeah, I do think... Again, that's that, sort of, navigating the family dynamic. If there's maybe a parent who's really pushing for a diagnosis and you're feeling that it's not there, again, referring on possibly to someone like a counsellor or at least having that conversation around, "Okay, well, what does it mean to you to have a diagnosis? How is that going to change your way forward?" And finding out why someone is so desperately wanting that but just also supporting each child as an individual, whether that's a diagnosis or not. That’s really what we're here to do.
Andrew: Yeah. There's so much that we can discuss here but it'll be a 5, 10-hour podcast, so I will leave that there.
But, please, people chime in. If you have issues, concerns, questions, please let us know on social media or indeed at fxmedicine.com.au, on our website, or email us at [email protected]. Ask us and we'll get in touch with Kate, get her your ideas, and we'd love to create a forum on this. It's such an important topic. Certainly the social media outlets, and then, what is it, Instagram, Bookface, you know the drill.
Kate: So PANDAS, the cute-sounding syndrome that actually stands for Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. And, I guess, it's a relatively new thing in the health space. I mean, it's probably itself been around for a long time in terms of recognition, and the hallmarks... And I have to preface this by saying I've actually not treated a patient with PANDAS to my knowledge, but it's something that I know there are a lot of clinicians who have seen patients with this.
Essentially keep in mind it's acute onset. It's very, very acute onset and usually following something like a strep throat or a very obvious infection. And what you'll see is this sudden and rapid change in behaviour. So starting to show things like tics and they can either be motor tics or they can be vocal tics as well. OCD behaviours, and this is not just an exacerbation of previous OCD behaviours. It's a completely new appearance of these behaviours. Also personality changes can be quite common so moving toward that, sort of, oppositional defiance disorder, lots of anxiety and hyperactivity.
And I think all those things can present on their own and not be PANDAS. So the thing to be looking out for is there's been an acute infection and then there's acute and rapid change in behaviour and personality. Essentially, what they believe to be happening is this neuroinflammation. So as a result of antibodies cross-reacting with the brain from that streptococcus bacteria, you're then getting this neuroinflammation that’s causing this cascade of behavioural changes.
There is testing available although my understanding is there's not a really strong consensus around the accuracy of that testing, whether the markers being tested are actually showing what we're believing them to show. So there's profiles out there and I think... I mean, my motto around testing anyway is just because we can test something doesn't necessarily mean that we should.
With this sort of condition, I would typically refer on to an integrative GP, so someone that you can work collaboratively with because often it would require antibiotic treatment if there is that streptococcus bacteria present. And while we naturopathically would obviously often want to steer away from that, when you've got an acute presentation and a rapid decline, sometimes it's necessary. And then you can go back in with your natural therapies to mop up any damage and obviously do supportive adjunct therapy at the same time.
You also have PANS which is Paediatric Acute-onset Neuropsychiatric Syndrome. And so the difference there is that it's not associated with streptococcus but it can be this similar presentation, but not specifically that organism present. And also with PANS and I think, with a lot of our syndromes, it's remembering really that's an umbrella that kind of goes over a number of different symptoms and complaints.
Still, it's going to present acutely and that's something to keep in mind. But it can also overlap with a lot of other kinds of conditions. And it can be triggered by infection but also thinking environmental things. So, whether that's things like mould or it could be, if there's been for some reason a sudden heavy metal exposure or something like that. So I'd also within that subgroup consider maybe metabolic factors as well. But again, I'd probably for either of these conditions, be looking to get somebody else in, so an integrative GP or a GP who's very open to working with you so that you have a little bit more testing available if you need it and someone else to help navigate that.
Andrew: I'll give a call out to Dr Elisa Song. The podcast that I did with her and her seminars series, what a glowing light that woman is. She's incredible. What a beautiful, not just a mama, but an incredibly competent and compassionate practitioner. And she indeed is an expert in that, so I'll give a call out to her. If you want to learn more about PANDAS and PANS, look up the FX Medicine podcast on the FX Medicine website. Now, I wanted to... Oh, that's right.
One of the hallmarks that I've picked up from Elisa Song's podcast was handwriting. A change in handwriting, which I thought was really interesting, to do with fatigue. Is that right?
Kate: Yeah. I guess to do with fatigue or to do with more... Not necessarily when someone complains that they're tired but more that mitochondrial fatigue and the changes that can be happening metabolically as a result of that neuroinflammation and subsequent cascade of biochemical changes that happens in the brain and then flow-on effects through the body.
And I just want to add as well, whether PANS, PANDAS, whatever the condition, we have to also be thinking as naturopaths, “Why is this happening?” We know these organism are often opportunistic, so really looking at that immune modulation and taking it a step earlier. So, yes, you've got the acute presentation that needs to be dealt with but then asking, "Well, what could we have done to change that terrain?” Because we know that someone else could have a streptococcus infection and not end up with PANDAS? So what is it in that child that has allowed these organisms to be opportunistic and have this flow-on effect? So I think that's where we can swoop back in and do a lot of great work as well.
Andrew: Kate, I love your work and I love the way you think because one of the... You can tell a great naturopath because they're always asking why. Always asking why. And you said a very important thing about we always like to hone in. We want to have the magic thing. Somebody tell us. Somebody help us about the target to go for.
But indeed you mentioned the important thing that is “Why?” Why has the terrain changed? So the why and the terrain, they're two of the most important words, I think, people skip over in our search for a treatment, a magic treatment.
Along that line of treatment, let's go into it a little bit. So we've got ADHD first and of course we start off with diet. We've got Julia Rucklidge, we've got Felice Jacka. Both professors. Incredible people. Incredible work. Felice Jacka has concentrated on diet. Julia Rucklidge has actually concentrated on the use of a multivitamin supplement. Both have resulted in behavioural improvements in ADHD and other neurobehavioural issues. Tell us, how important? Where you start? What do you include? What are you cautious of?
Kate: So diet always has to be a consideration and whether that's taking someone from a very typical Western diet and moving them more towards a wholefoods diet, or if you've got someone who's perhaps already at that wholefoods point and moving them one step further maybe towards that gluten-free, casein-free, or even looking at specific food intolerances, absolutely diet has to be a consideration.
Considering things like blood sugar dysregulation and how that can often look like behavioural disorders. So if you've got a child who's perhaps having a sugary breakfast with a glass of juice and then maybe not eating all of their lunch at school, and lunch at school is a honey sandwich or... I'm painting the worst-case scenario here. That child will probably have crashes to their mood, and then spurts of hyperactivity, and not be able to concentrate, and not be able to regulate their behaviour. So blood sugar dysregulation I think is really, really important to consider.
But other factors as well like just general lifestyle and environmental factors. How much time is the child spending outside in nature, moving their bodies, and really moving those big muscle groups as well? How much time are they spending on screens? How much time are they spending socialising with their friends or siblings, or actually how much time are they spending with their parents? Or are they just jumping from school to out-of-school activity, to carer, to all these other things that kids can have going on?
Even that over-scheduling can be really, really stressful for children, and can also look like, well, they're not concentrating, and then they're not going to bed and all of these things that they're so simple really to change. Although they might not feel so simple for the family but it doesn't mean that there's a really overt diagnosis, or five different supplements that you need to be giving. You can actually just modify these more behavioural, and lifestyle, environmental things to really bring about some change.
In terms of type of diet, I guess research is really tricky around diet for anyone, but particularly if we're thinking children because compliance is a big factor, and also length of time in order to bring about significant change can be a factor as well. So for anyone trialling any sort of diet, at an absolute, absolute minimum, you want a strict one month and that's more from the point of view of food intolerances and antibodies being able to lead the system.
But for nutritional repletion and to see that full scope of how a diet can affect someone, I'd be thinking more like six months of being compliant. And within a six-month window of a child's life, you're going to have birthday parties, and you're going to have school camps, and you're going to have all these other barriers that...
Andrew: Growth spurts.
Kate: What was that, sorry?
Andrew: Growth spurts as well.
Kate: Growth spurts, yeah. Huge amounts of change that can throw people off track, and I think keeping that motivation when it can be really challenging for a parent to either be preparing the food or just getting the child to eat the food. And children as well. I mean, I feel oftentimes children are quite malleable and they're very, very intelligent. So if you can work with a child directly...
And I can't remember if I've mentioned this in previous episodes but always speak to the child in however language you can portray the information. Try to get them on board because, with their understanding, they will make changes. And it might not be all of the changes that you want them to but it doesn't have to then be such a battle at every mealtime.
But in terms of diets that are generally recommended... So, not a Western diet. I think we can all agree that that's pretty bad. More of a Mediterranean style diet has some pretty good research around it. Even moving more towards like a paleo-type diet. While I don't typically like to prescribe a diet to people, I think sometimes giving them that label just allows them to seek out better resources so they can find a paleo cookbook. And then you know, as the clinician, that it's going to be gluten-free, dairy-free, grain-free, whole food based. So that's actually quite easy for families to adopt.
And definitely around more of the spectrum disorders, that gluten-free, casein-free diet seems to be the one that has the best research. And whether that’s just doing gluten-free, casein-free, or even looking more at your specific carbohydrate diet or your GAPS diet, they're the ones that really stand out to me for that. Yeah, if you're looking at a child that’s more severely autistic, that's probably the direction that I'd head there.
Andrew: You know, it's really interesting when you look at research on things like essential fatty acids supplementation, fish oil, and you look at the work that's been done, some of it by incredibly good researchers, some of it in Australia like the DOMInO trial, Maria Makrides. There's others. Forgive me. That was an infant one.
But when they do these supplements, it's almost like they're treating them as a drug like Ritalin or amoxicillin, and it's not. I just don't get why. Is it ignorance about the importance of diet? Particularly, as you say, the casein/gluten-free diet where you know that the foundations just aren't there for any sort of real improvement in neurobehavioural issues.
So how do you treat the research? How do you read through this research that comes out and says, "no effect, no effect, no effect?”
Kate: Very much with a grain of salt. Because it's not one thing and I guess that's, again, where we as naturopaths, we're working with the whole patient. So the idea isn't to be mini doctors and giving one pill to fix the one symptom. It's that you're treating the whole body and the whole person.
And I think with that, actually, it gives us so much more freedom but you can take away some of the stress because you don't have to have the one thing that's going to do the action, because there's many ways that you can reach the end result. And often just laying down those good foundations is going to get you there, regardless of what supplements you add in over the top.
So I think it's important to obviously have an awareness of research and to know what patients might be coming up against as well. Because, especially with paeds, they're often seeing a paediatrician, or seeing a doctor, or seeing some other specialist who at every appointment, they're going to say, "What are you taking?" and they say, "Oh, X, Y, Z supplements."
So be prepared that your families are going to get some pushback possibly from medical professionals who are in their team. And obviously we have to respect that and work with their directions as well. So that's where no one's going to argue with, "I was told to stop eating processed and packaged food and instead serve more fruits and vegetables." I don't think there's a practitioner in the world from whatever modality who would say...
Andrew: Who wouldn’t be game?
Kate: …that’s bad advice. So, yeah, I do think that... I mean, research is challenging with natural therapies because oftentimes, and particularly with, as I said, like, dietary interventions, there's too many moving parts and you can’t actually control them all enough in order to get that good level of “science.”
So I think, yes, have an awareness of it and obviously not to be reckless then with what you're prescribing, but just to realise that it's not always telling the whole picture. And what we're interested in as naturopaths is that whole picture. Yeah, that's my rant.
Andrew: Given that these families have got a heck of a lot of change to go through: diet and lifestyle, possible medication changes, learning issues at school. They've got to cope with the homework, the interaction with the teachers and the education department, all of this sort of thing. One of the other things is significant financial cost. What therefore do you find the best bang for buck type of supplements to look at?
Kate: It's actually impossible to answer without... because there's such a diverse...
Andrew: Can I start off?
Andrew: I remember one and it was a fractionated product of American ginseng. Now, American ginseng is a more cooling ginseng than the Korean ginseng, and so I like to refer it colloquially as a more mind ginseng. And indeed this fractionated product was specifically designed for ADD kids.
And I remember… magic isn't a term I use, but significant not just behavioural changes, but acceptance and indeed a desire to take it from the child. Quite striking. And I guess where I'm going here is, when do you know from what you prescribe where kids are accepting it and they're getting a benefit because they themselves say, "Mum, can I have my medicine? I feel better on that," or, "Oh, I forgot my medicine, I'm having a bad day," that sort of thing? Sorry for so many questions.
Kate: No, no, no. It's okay. So I guess it's going to be very dependent on the age of the child and their ability to report whether or not they themselves are feeling a change, or whether it's just the observation from the parents. And I know that, when they've done research, not necessarily on supplements but on, even food preservatives or dietary interventions, sometimes there's a placebo effect on the parents' side that the children actually have had behavioural improvements when actually nothing has changed. So always mindful of who's reporting the changes. But, look, if the family's feeling that there's a change, I don't care if it's a placebo or not...
Andrew: It decreases that stress in the family dynamic.
Kate: Absolutely. I guess, back to your question around... Probably the things I would most commonly prescribe definitely would be a fish oil or a cod liver oil. I find that just having that, when we're thinking there's a lot of neuroinflammation going on, we know that it's just important for that cognitive development anyway with also then that ability to downregulate some of that inflammation.
With the cod liver oil, you're getting the naturally occurring vitamin A and vitamin D so all of that nice mucous membrane support, whether that's respiratory or whether that's gut. And I think remembering that oftentimes children who do have behavioural disorders, they have things going on in those other systems as well. So bang for buck addressing multiple things at once.
Oftentimes I'm finding children very deficient in zinc, and that's obviously important for all of the neurotransmitter development, but again that mucosal health and immune health and everything health. So that's probably up there with one of my more common prescriptions.
And then just looking at those other areas. So is the child having issues with sleep? In which case, maybe you are prescribing, whether it's herbs or nutrients, to be supportive of their sleep cycles alongside, again, those lifestyle changes of not having screen time before bed, having sufficient time in the sun, and sometimes it's even sending them out in the moon if possible to just actually be able to regulate their melatonin.
If children are having more issues with anxiety or OCD, again, it might be delving more into your herbs or, again, some nutrients to support just calming that nervous system.
So, yeah, there's such a diverse range of things that we can call on but I really, really think that you have to lay those foundations of having a good diet despite if there's research saying, "Yes, fish oil has X, Y, Z effect with no other change at all," I just feel that I, as a clinician, have not done my job if I haven't educated the family on how to just eat better.
And eventually, I want to make myself redundant. I want people to have so much education around how to just eat well and live well that they don't need to come to me for appointments and they don't need supplementation. And depending on the severity of what the child's presenting with, that may or may not be possible. But I think giving them those tools so that they can implement a lot from their own home is better than just giving them one or two supplements that might have an effect, but then they're reliant on that for however long.
Andrew: Yeah, good old pumpkin seeds. I remember Elisa Song saying “Pumpkin seeds, pumpkin seeds.” What about other common deficiencies though? Iron for instance. What is it, 8%, 12% of kids are deficient in iron? And we've got a marginal to mild deficiency of iodine, certainly across the eastern seaboard of Australia. So much so that indeed it's recommended as a supplement, not just food, but a supplement, 150 micrograms of a supplement of iodine in pregnancy.
Whereas, folic acid is, because the food's fortified, it's okay. You don't have to take a supplement. So I think it's really interesting. People think it's folic acid that's more advocated in pregnancy. It's actually iodine because of the work of Prof. Creswell Eastman.
So how do we address these? How do we, A, supplement if required but, B, get them to eat the right foods? And I have to say it doesn't require potential testing here with at least iron.
Kate: Depending on the presentation of the child, so I still would leave any blood testing at the bottom of my list if I possibly can. I mean, with iron, the typical things that you'd look out for, so the common complaints that we would have as adults if we have low iron, so fatigue, shortness of breath, you can start to look quite pale or have those dark circles under your eyes.
In children, you can also see a delayed growth. So if you've got a child who's not yet growing appropriately or there seems to have been some sort of stop to their growing, definitely iron can be a big part of that. And I think, again, coming back to a quite detailed case history when you're taking a look at their diet and what they're eating, you as a clinician will see, "Are they actually ingesting any or enough iron in their diet?"
Andrew: Or not absorbing.
Kate: I was about to say that's not even taking to consideration malabsorption, so what's going on in their gut. So I think with iron supplementation in children, I would confidently prescribe for a while and just see if some of those things change before feeling that it's necessary to do a test unless it felt really clinically indicated because getting a child to a toxic level of iron is going to be quite a challenge. So, again, I think I've said it before just sort of starting low and slow, and you can be conservative in dosing. And children do tend to respond quite well, and obviously then that gives you room to move.
You asked a question of how to get the supplements into children. I definitely have to give a shout out to the guys at Kingsway Compounding. They are so awesome to work with across the board for all conditions. With paediatrics, you know, there are certain nutrients that we can do transdermally—iron being one of them. So if it were a child who maybe can't swallow a tablet or capsule and then won't tolerate the taste of things that are powder or liquid, then looking at what you can do as transdermals.
I'm not an expert in compounding but any time I have a question, if you call George, or Karl, or Flores, or anyone at Kingsway, they are so more than happy to generously give away their time and knowledge and really guide you on how best to support your patient. And there's lots that they can do as well with not just the transdermals but even compounding, you know, powders that have specific flavours that might be more palatable for the children. They're just total experts, so generous, so lovely. So, I wholeheartedly support them and would really recommend working with them if you're trying to supplement for kids and they can't take what's commercially available.
Andrew: Yeah, I'll double that shout out. I did a really interesting interview with Karl Landers years ago now, and he blew my mind with what I thought, "There's no way that you could absorb iron and vitamin C through the skin." And, no, actually you can. So it really opened my eyes to another way that we can potentially supplement particularly if you say, as you say, that there may be refusal or difficulty in taking oral supplements. I think it's a fantastic idea, one that certainly needs more research.
Kate: For parents as well. Your children are having a bath or a shower and before they get dressed, they can just apply the transdermal cream over the body. Usually, it just has to be in areas where there's not a lot of body hair. But if you're thinking a child, that's pretty much head to toe, you can put it anywhere. So, yeah, it's a really, really good way to work.
Same goes with oral supplementation. How much of it's actually making its way into the bloodstream? Not entirely sure, but we're going to see changes to behaviour, changes to nutrient levels if we are doing pathology testing. And for me, that's what we want to see.
Andrew: Yeah. Well, iron, there's very good consensus on levels. So at least we go in and we can pretty easily test it with a blood test. Iodine has some controversy with urinary iodine.
I guess the caveat with both of them, one with iron is hereditary, hemochromatosis, but their presentation would be different. That instead of a paleness, they tend to have a copper skin, certainly in adults. The fatigue though can happen with both under or over iron.
And I guess the other salient point to make to anybody listening is that anybody supplement has or can be toxic. So always get guidance from a naturopathic practitioner or somebody suitably qualified.
So regards to other nutrients, things like magnesium and tryptophan. I found tryptophan was a funny one where higher doses actually help relaxation. Is that right?
Kate: Yeah, and, I mean, with nutrients, or I guess any supplementation in children, I probably do sit more on the conservative side unless really clinically indicated. And so that's actually really good, I think, as a clinician because you can just start with your basics, and you don't have to be, as we were saying, with the PANDAS and the PANS, you don't have to find the one thing or have the really exotic diagnosis or exotic nutrient. You can just start with the basics and get amazing change.
Glycine, is another one that I find really useful in children. Tastes really good for children as well and can really help with just calming the nervous system, supporting that neurotransmitter development.
Magnesium, absolutely. And there's so many ways...again, you could do magnesium transdermally or even getting children to do baths, whether that's in Epsom salts or magnesium flakes. So the magnesium chloride, apparently slightly better absorbed, but if Mum has a packet of Epsom salts in the cupboard, go with it. I do always warn patients to make sure it's well... What's the word? Not diluted but it's actually being taken up by the water. You're not popping a child in and sitting directly on the salts because that can burn their poor little behind.
But some of these ways, it's just making things easy so that parents don't feel like they've got a million things that they've got to do and got to change. And it's how can you integrate it with day to day behaviours so that you're getting some change without the overwhelm.
Andrew: Do you find sometimes with that magnesium chloride that you get the itchy skin? Have you ever seen it?
Kate: Yes, I have. But I think, again, just diluting it even further and sometimes people do become accustomed to it. If it's causing a reaction, a prolonged reaction, then just avoid it. But otherwise, yeah, oftentimes it does get less overtime or just dilute it further so you're getting some benefit. Again, is that measurable? I couldn't say for sure but some benefit is better than no benefit at all in my mind.
Andrew: Again, I say we could talk for hours, but just as a last type of comment, helping the child to improve their resilience. Because these children are going to come up against more hurdles and roadblocks in their life. They need to learn resilience rather than, "I've got a broken pencil." Go and sharpen it, you know? Which actually happens to my wife in class. How do you and what do you teach kids, particularly with neurodevelopmental issues, how do you teach them about resilience and what they have to learn? Preparing them for adulthood.
Kate: Yeah. I think it's actually, from where I'm sitting and my role as the clinician, definitely forming that rapport with the child is really important so that they feel they can come to appointments, and be open, and enjoy sitting down and chatting with you. But a lot of that directive does come from the parents.
So, again, whether that's referring on to someone like a counsellor or a psychologist who can work with the family, there's some amazing parenting resources out there. And sometimes that can be... You know, I have my personal parenting philosophies and that doesn't always sit well with families who maybe have a slightly stricter parenting style, but I think just exposing people to different ways of doing things, and then getting the parents to acknowledge that, "Okay, this is my child. I love them. They're unique." They usually do love them anyway but it's more supporting who they are and how they are, rather than getting them to try to fit a mould. And I think it's just with that acceptance and if that acceptance can filter in from all different areas of your life, that will help to promote resilience.
Janet Lansbury is one of the experts that I would refer people to for... She has amazing podcasts. She's got books all around basically children of any age from newborns to teens, behaviours, and how we can support them and, again, asking that question of why. What does this behaviour actually mean? Because sometimes what children are expressing is not actually what's going on. It's just a symptom of the million things that they've been bottling up inside.
Even looking at a great book called The Whole‑Brain Child which talks very much about how we can support our children to integrate those left and right brain thoughts versus feelings or that rational versus emotional.
But when we're talking children, and particularly if we're layering children with additional needs, they don't actually have the ability to make those connections themselves or to fully understand. So that's where the parents, or whoever the primary people in the child's life is, really has an amazing opportunity to support them so they do become resilient, and confident, and are able to sharpen their own pencil or just deal better with whether it's their health, or their schooling, or their peers, or all of the things that pop up when you're a child and through your adolescence. And I think we can be a part of that team as natural health practitioners, but so much of it filters down from those who are interacting with them day to day.
Andrew: Or indeed to find their gift. I remember a story just recently, a friend of mine who has a child with neurodevelopmental issues or neurobehavioural issues who is so insightful into his own behaviour that he now chooses. He goes, "I want to delay my medicine but then I'll take it at lunch," sort of thing.
But to find their gift, it was really interesting. I asked the Mum about if music was something and then she went, "Uh-uh, no way. Uh-huh. Tone-deaf, no rhythm. Gone. Nothing. But drawing? Ah." It's weird. And we just have to be open to be able to find their gift, to give them exposure to different outlets for their expression, I guess.
Kate: Yeah, absolutely. I think just like all of us, we all want to be accepted for who we are and not feel that we have to change ourselves to fit in. So, yeah, just allowing that to filter down to our little people, and that's accepting that they have a full spectrum of emotions. And absolutely if they start tipping outside a normal or an appropriate kind of realm, then, yes, that becomes something that you want to address more clinically. But, yeah, I think just having that love and acceptance, we would all do better from a bit more love and acceptance in our lives.
Andrew: Kate Holm, indeed, what you say is so true, the love and acceptance that we all need to embrace and shine from. So I can't thank you enough for taking us through your insight today with neurodevelopmental issues in kids. And indeed, you will never ever be redundant because of your ethics. You have such a beautiful, responsible compassionate spirit. I really admire you. Well done and thank you so much for taking us through this today on FX Medicine.
Kate: Thanks for having me.
Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook.