Akhil Autism Foundation
Akhil Autism Foundation
Ep. 15 Medical Genetics with Dr. Richard Boles
SHOW NOTES
Dr. Richard G. Boles is a medical geneticist and pediatrician who specializes in mitochondrial medicine, functional disease, and autism spectrum disorders.
His expertise stems from decades of both clinical work and research at a major academic center as well as from his most recent experience in cutting-edge biotechnology and genomics. He uses an innovative and integrative approach in both diagnosis and treatment to best serve his patients.
Dr. Boles leads the NeuroGenomics program at NeurAbilities.
Neurogenomics can help to unravel the biological causes and contributions for many diseases and disorders, as well as provide important information for changing clinical management.
Dr. Boles recently shared his expertise at the Akhil Autism Foundation Ascend Annual Summit, in a presentation called Genetic Testing in Autism Results in a Precise Diagnosis and Individualized Treatment Options in Most Cases. You can find the link to that presentation in the show notes and view Dr. Boles’ entire presentation there. Today he breaks it down into more of a Q&A discussion.
Summary
Brett and Richard discussed the evolution of genetics, its impact on medical diagnosis and treatment, and the complex interplay between genetics and the environment in the development of conditions such as autism, diabetes, and asthma. They also explored the potential of using specific pathways to address neurodevelopmental disorders such as autism and the benefits of a supplement to aid brain recovery. The conversation ended with a discussion on the importance of omega-3 fatty acids and potential side effects of a supplement aimed at improving mental function.
LINKS
Dr. Richard Boles’ Presentation for Akhil Autism Foundation (2024)
https://youtu.be/WmGL4RxZmRs?si=8vx1TaJiBx6LSkqt
NeuroNeeds - https://www.neuroneeds.com/
Contact Dr. Boles - drboles@molecularmito.com
Welcome to the Akhil Autism Foundation podcast, providing practical and science-based solutions for families dealing with autism. Foundation founder and executive director, Manisha Lad is a nutrition consultant and mother of an only son recovering from autism. Alad is a nutrition consultant and mother of an only son recovering from autism. He inspired her to not only start the Akil Autism Foundation, but he transformed her to become a holistic health coach and autism advocate. Akhil's foundation was formed to educate, treat research and support autism. Through her coaching sessions, she shares their journey and empowers parents who are struggling with all aspects of autism, including emotional hardships related to this condition. The following program is for educational purposes only and is not intended to be a substitute for professional medical advice or diagnose or treat for autism condition. Please do not apply any of this information without first speaking to your physician. And now on to our show. Dr Richard G. Boles is a medical geneticist and a pediatrician who specializes in mitochondrial medicine, functional disease and autism spectrum disorders. His expertise stems from decades of both clinical work and research at a major academic center, as well as from his most recent experience in cutting-edge biotechnology and genomics. He uses an innovative and integrative approach in both diagnosis and treatment to best serve his patients. Dr Boles leads the Neurogenomics program at NeurAbilities. Neurogenomics can help to unravel the biological causes and contributions for many diseases and disorders, as well as provide important information for changing clinical management. Dr Boles recently shared his expertise at the Akhil Autism Foundation Ascend Annual Summit in a presentation called Genetic Testing in Autism Results in a Precise Diagnosis and Individualized Treatment Options in Most Cases. You can find the link to that presentation in the show notes and view Dr Boles' entire presentation there Today. He breaks it down into more of a Q&A discussion. You'll want to lean in close so you don't miss a thing. Come on in. Dr Boles, thank you so much for being here on the Akhil Autism Foundation podcast. We are very excited to hear what you have to tell us, because so much has changed in the world in the last few years and we have a lot to learn. So thank you for being here.
Dr. Richard Boles:Well, thank you for inviting me. We really appreciate it.
Brett:Tell us a bit about your background, how you came to be a medical geneticist and where that has led you.
Dr. Richard Boles:Well, I started off as a pediatrician. I love to work with kids I have four of my own and I always liked genetics because it's really the foundation of biology, it's a foundation of health, it's the foundation of disease, and I felt that I can do a better job of really figuring out what's going on with my patients and how to help them if I understood it better with my patients and how to help them.
Brett:if I understood it better, wonderful. And did you study genetics in school? Or how did you get after you were a pediatrician? How did that lead to where you are now?
Dr. Richard Boles:I went back to. I went to Yale to do a second residency in genetics and metabolism.
Brett:Yeah, when would that have been? And?
Dr. Richard Boles:how have things changed? Oh, that's going to really date me Okay 1991 for 93.
Brett:Okay, yeah, well, that shows you've got some experience in this field. Now I have, yes, and has a lot changed since you first started studying genetics.
Dr. Richard Boles:Oh, it's dramatically different. I mean the field is completely different At the beginning and we were diagnosing about 10% of the kids that we saw with an actual diagnosis, not just a description. Now I can diagnose more than three quarters. I mean it's made a huge difference. The amount of information that we have, the technology not just to be able to make diagnosis but to treat it's dramatically improved.
Brett:Wow, this is a very it's kind of a behind-the-scenes thing for most of us. I don't understand how genetics work, so is it through a blood test? How do you test somebody's genetics? What's the process like?
Dr. Richard Boles:Well, I do whole genome sequencing. I work with a laboratory, variantics, which I think is the best one. It's in the Boston area. I have no conflict of interest with them, I just think they're the best in the world. They take a saliva sample or it can be assisted saliva sample for a child that won't spit in a tube. It's sent by regular mail because saliva is on envelopes all the time. So saliva can be sent by regular mail and it's sent. And they sequence the chromosomes from end to end, the whole thing, all 3 billion nucleotides of all the chromosomes plus the mitochondrial DNA. It's sent to me on the internet. I have access to the back end of the computer, so I have the exact entire sequence.
Brett:Sounds like a very simple way to get a lot of complex results.
Dr. Richard Boles:Well it's terabytes of information. Yes, the amount of information in a DNA sequence is extraordinary.
Brett:And how long does it take to get back results and start working on treatment?
Dr. Richard Boles:It varies. I mean it used to be a year, six months and then it got down to as little as two months. Now it's back more like four months there's really. It depends on how busy the laboratory is at a time and it depends, unfortunately, on how quickly insurance approves it. They often will deny it a few times just to do so, but almost all of my patients get approved, particularly with autism. It's rare now to have a child that will not get approved for sequencing when they have autism.
Brett:Interesting. So besides autism, what else are you testing for?
Dr. Richard Boles:Well, when you have a whole genome sequence, you have it all right. You have the entire genetic code, the whole thing. I could do anything with it, but I mean, I feel like I do too many things already. So I have one focus on neurodevelopmental disorders autism, adhd, intellectual disability, epilepsy, et cetera. So if it doesn't quite on the spectrum, it doesn't matter, it's a neurodevelopmental disorder, it's really the same genes. And then I have another focus that's also 50% on functional disorders, like on chronic fatigue syndrome, fibromyalgia, irritable bowel, migraine, cyclic vomiting syndrome and that sort of thing.
Dr. Richard Boles:And some of you in the audience will say well, my family has both. That's how I got into it. I was doing functional diseases now for more than 30 years. I saw kids with autism, but they came to me and I was just happy to be the geneticist. I was not somebody that people would see because of autism. I was a chondrial guy and I did a lot of functional disease. But then I realized that I was doing a lot of cyclopharmacy syndrome and it seemed like every one of their brothers had ADHD or autism. And I realized, you know, these genes are the same.
Dr. Richard Boles:There's a lot of overlap, and so I got more and more involved in autism. And well, here I am. For the last 10 years I've been focusing on autism. That's my number one focus Wonderful.
Brett:You gave a presentation a little while back for the Akil Autism Foundation that we're going to refer to and make a link for in this program, and so we're not going to ask you to reinvent the whole presentation again, but I would love it if you would give kind of a summary of that and take it wherever you would, and I just want to let our parents know that you offer a lot of hope and a lot of insight and wisdom and actionable items to do, especially through your neuro needs. So stay tuned for that too I'm going to ask you more about. For the parents, I'm going to ask Dr Bowles more about neuro needs and how we can get access to those products.
Dr. Richard Boles:Well, first of all, I do recommend that people watch that, because it has the slides in it with the data and so you can see how the names are spelled and everything. And then, if people really want the proof of that, they can see how the names are spelled and everything. And then, if people really want the proof of that, they can go to the paper that was published in January, which is easy to find. If you just look at my Name Bulls RG, autism papers, you can do that on PubMed and it'll come up on top, yeah, and, or one of the top ones. And I mean to put it really in a nutshell we looked at 50 kids with autism. They all had other things as well. We took anyone who made the diagnosis of autism, the last 50 that I had seen. So they were seen over like a year and a half period of time.
Dr. Richard Boles:That got trio whole genome sequencing at variantic. So trio includes the child, which can be an adult, the patient and the biological parents. Okay, and so, by the way, trio sequencing has come down dramatically now. It's the same price as Singleton or just sequencing the child now. Wow, so we can get to that later. Yeah, $1,800 if you have no insurance to do sequencing the whole gentleman, all three of them.
Dr. Richard Boles:That's amazing so really, I never thought it would come down that far. We're living in the future.
Dr. Richard Boles:Yeah, I know, incredible. You think about how much information you get from that and insurance will usually pay for it. You don't have to pay that too, but if you're outside of this country you don't have medical insurance that will pay for that sort of thing. It's $1,800 to sequence the whole genome in all three of you. Wow, so yeah, it's really we are in the future. It's amazing what we can do now. That's exciting.
Dr. Richard Boles:Anyway, I looked at the whole genome in those patients and I was looking for diagnoses Like first of all, everything is genetic and everything is environmental. That's the truth about autism. Well, everything is genetic and everything's environmental. That's the truth about autism. That's the truth about diabetes or Alzheimer's or asthma or high blood pressure, it doesn't matter what it is Epilepsy, adhd everything is genetic and usually more than one gene. And everything is environmental and usually more than one environmental insult. But, having said that, I'm looking for the principal genetic factor because, all right, our environment is full of toxins and there's a lot of different things there, yeah, and they are very important in this, and I know that they're triggering our kids and probably causing these mutations as well, but there's a reason why that kid got autism and not the next one. They are genetically vulnerable versus genetically protected. If I can figure out the genetic vulnerability, then I hopefully can figure out how to treat them to make them less vulnerable. That's what I do. I find their vulnerabilities and their genetic vulnerabilities.
Dr. Richard Boles:I'm a geneticist. You go to a cardiologist, you get an EKG, right. You go to me, you get genome sequencing, okay. So I look for the genetic vulnerabilities and so I can treat that. That doesn't in any way dismiss the fact that there are environmental insults that need to be looked at too. But I'm the geneticist, okay. So in whole genome sequencing trios I was able to make a diagnosis. I mean, this is the genetic predisposition of disease in 68% of them. So 34 out of 50. So more than two thirds. Yes, we have a diagnosis on. That's much higher than it was before. 20% of those from Mendelian autosomal, dominant autosomal, recessive X-linked sequence variants that were inherited from one or both parents. Okay, that's what other studies have shown. Yeah, 50% were de novo. De novo in Latin just means new. They're mutations, that's in the child. Again, child can be any age, but they're absent in the parents and that's the main reason we need the parental DNA. To look on a computer and look at free building nucleotides and see what's in the child and not in both parents.
Brett:And that's almost always the case.
Dr. Richard Boles:Well, I mean, this study is the first one in the world to really show it at that level. And to look at the clinical, there is another study earlier that did show de novo's as being higher, and I'm working with a follow-up study with Dr Richard Fry in which we're looking at 100 of his patients. I've already looked at 85 of those. I'm not going to talk too much about that. That paper is going to come out, hopefully, later this year. But we're seeing the same thing, maybe even a little more. So most of the mutations that we're finding do not come from the parents or de novo, which is what a lot of people are saying. Is that, well, there's nobody with autism in my family. It must be environmental. Well, it probably was the environmental insult that caused the mutation that happened and the other environmental insults which make that mutation worse, I see. So, yes, it is Everything's genetic and everything's environmental.
Dr. Richard Boles:Those people that say they only want to look at environment are missing a huge part of the puzzle. Those people and there are a lot of them, particularly in the ivory towers, like where I trained that say it's all genetic. They're missing a lot of problems too, because the environment needs to be dealt with. Yes, you really need to look at the whole thing. So, anyway, what I showed is that I can find the diagnosis in most of them and that most of those diagnoses are de novo. They're mutations which aren't in either parent. But in addition, I found variants that are inherited, usually from both parents, that also affect their modifiers, because the primary mutation can push towards intellectual disability or autism or migraine or schizophrenia or autism or ADHD. I mean it can push in different directions. Modifying ones tend to push towards autism and those are often the ones that are more treatable. So I'm not only looking for the primary diagnostic variant, but I'm also looking for what I call the modifying variants as well, because more variants means more opportunities to treat.
Brett:Through what you've offered through NeuroNeeds.
Dr. Richard Boles:Well, NeuroNeeds is a company that I helped put together. I'm one of the three partners to make products for that. But one of the things is I mean it's okay, you have a diagnosis, right, but what does that mean for the child? Can you treat it? Well, yes, 75% of the time I made a change based upon the genetics. Now, almost all of those were already on supplements, and most of those were on neuro-need supplements because I'd seen them before.
Brett:Yes, yes.
Dr. Richard Boles:The change that I saw in the genetics were maybe to increase the supplements or to add something else add potassium, double the magnesium, add NAC or something like that. Yeah, sometimes it was a laboratory test, but those were actually pretty real, pretty rare. Yeah, occasionally it was referral to another specialist, almost always immunology, but that was only 16% of the time I referred to any other specialists. It was really the vast majority of the interventions were drugs, in 48% and supplements in 60%. So in 66% I made a therapeutic intervention. Did it make a difference or not? I believe in about half of them it made a significant difference. It's hard to say they're seeing other doctors, many things are being tried but I believe from my data that it's showing that about half the cases significant improvement was made based upon the genetics.
Brett:I love that you have all this data on it because it really gives you real viable solutions that otherwise it feels like you would just be guessing. It's wonderful.
Dr. Richard Boles:Well, you can. I mean, not everyone can get genetic testing, particularly throughout the world. The vast majority of people can't. One of the things is that these numbers come from me taking a look at the back end of the computer and looking at the entire DNA sequence myself, the laboratory, somewhere on the laboratory report. The answer was on 28% of them. But I went from 28% to 68%. Wow, so the difference is 40%. What did I do in those 40% to make a diagnosis that wasn't on the lab report? They were new diagnosis, almost all of them. They were the first one in the world to ever been described in a paper. There might have been other ones that have been seen by sequence throughout the world, but because there are thousands of genes that mutations can cause autism, or I could say are the genetic predisposition towards autism, and we're still finding them all the time In those 50 patients the primary diagnosis was different in every single one.
Dr. Richard Boles:Wow, well, modifying genes tend to be the similar modifying genes I see over and over again, particularly cation channels that we'll get to mitochondrial genes, those you know, those are modifiers that happen a lot. But the primary diagnosis was always different and and about half the time I made a diagnosis. That primary diagnosis was not in the. That was not anywhere in the literature. No one had described it before. How do you know? How do you know it's the diagnosis? That's where I spoke about in that hour and that's what's in the paper. I actually have statistics, p-values, odds, ratios, all of that. The proof is there. There's not time to go over that here.
Brett:Yeah, yeah, and I'm glad you're covering what you are here so that they can go reference that later. Yeah, wonderful, and I'm glad you're covering what you are here so that they can go reference that later. Yeah, wonderful. So are there seven pathways you're going to share about.
Dr. Richard Boles:Yeah, I mean in those 50 patients there were seven major pathways. There's a few other pathways which I've seen in many other patients which didn't show up so much in those 50. So I mean the major treatable pathways are cation channels, mitochondria, amino acids and neurotransmission. Okay, cation channels, what are those? An ion is the salt. It has a positive charge. Cations are positive. The main cations are potassium, sodium, calcium, magnesium. So these are cation channels. Mostly they were sodium and or calcium channels.
Dr. Richard Boles:Generally they leak, which means well, maybe they open too much or maybe they don't, they open too long or maybe they never quite close, but they let too much cation in. The cation is positively charged and it caught when the cells, positively charged, is activated. It does this thing Nervous impulses, muscles twitch glands, secrete hormones, et cetera. Cell is active. You leak, you're really, really active. The cell is overactive and so you get cellular hyper activity.
Dr. Richard Boles:Cellular hyperactivity does many things. First of all, the cells do crazy things because they're over activated. Yeah, it said, had pain signals or fatigue signals or vomiting, or it can cause confusion in the brain, causing ADHD or autism. The other thing is that the cation channels do is that they deplete your energy stores. Number one the cell is energized, so it needs more energy. But number two, pumping those cations back out is very energy dependent. It takes a lot of ATP or energy to pump them back out. So you have a cell which needs more energy because it's hyperactive and it has less energy because it's using up its energy to pump it again. Think like a dam with a leak in it. Pumps take a lot of energy to pump it back. You're running out of energy pretty quickly, yeah.
Brett:Is this separate from neurotransmitters and inhibitory?
Dr. Richard Boles:Well, the cation channels allow the cell to fire. They make the cell positively charged so that it's activated, yeah. When the activation then spreads to the end of the cell, it gets to the synapse, because the cells are not really touching. There's that gap, right, the synapse, right, yes, yeah, and then you release a neurotransmitter to then go to the next cell and then that one fires. So cations are necessary for the impulse to go down a neuron, but to go across the synapse of the next neuron, you have neurotransmitters, and that's another one that's highly treatable. I see, um, and in autism the excitatory neurotransmitters are higher than the inhibitory transmitters. Everyone in this audience knows that right but you're saying they're always firing hyper excited.
Dr. Richard Boles:What? What happens when your child's neurons are hyper excitable? Well, they have stray thoughts and emotions and they can't concentrate and they're hyperactive and they can't sleep. And they're hyperactive and they can't sleep and you get migraine, maybe even seizures. I mean, these are hyperactivities. Why do you have cellular hyperactivity?
Dr. Richard Boles:A lot of people were saying well, my kid has a mitochondrial problem, they have no energy. So why does he have so much energy? That's because the inhibitory neurons require more energy. Think about a toddler in a cookie jar. Okay, okay, dad, I want a cookie. No, dad, I want a cookie. No, I want a cookie. No, I want a cookie. No, I want a cookie. Okay, son, that cookie is gone. Okay, the dad has to say no, no, no, no, no all the time. Once he says yes, once that cookie is gone, the inhibitory nerves are constantly firing. If they run out of energy, the excitatory nerve will fire. The inhibitory nerves are what we call tonic. They're always on. The excitatory nerve only fires when it sends an impulse. So when you run out of energy, the inhibitory nerves go first and you have an overexcitation.
Dr. Richard Boles:So many of the treatments are involved in trying to help the inhibitory neurotransmitters, gaba and serotonin. That is interesting. I didn't talk that much about the energy metabolism. I talked about how the cations are a problem. I spoke about how energy deficiency can cause neurotransmitter imbalance. But there's also another thing is that a lot of people have mutations in genes that affect energy metabolism as well. So it's not only on the demand side they use energy too much, but it's on the supply side. They can't make enough. And maybe they make enough for normal situations, but not a situation that's in stress. Yeah, it's high energy demands, and mitochondrial dysfunction, or even mitochondrial disease in some cases, is another major genetic pathway I see in autism, which is treatable.
Brett:Yeah, that's encouraging too. Manisha, in particular, was curious about what we ended up talking about off-target findings. If a parent or grandparent has cancer or diabetes, how does that translate to knowing about the child?
Dr. Richard Boles:Well, I mean, I have whole genome, so I have everything in front of me. And while I'm concentrated on finding on target, why does this child have what he has and what can I can do about it? Sometimes something is pretty glaringly obvious in front of me. Here's a mutation in a gene that will cause disease. If it's viable that means it looks real and if it actually will do something, I would like to tell the family what to do to mitigate that. That's what we call off-target findings. 99% of my families have wanted off-target findings. In fact, at least one girl's life was saved by an off-target finding and several others were helped.
Dr. Richard Boles:An off-target finding could be that there's an increased cancer risk in the family. I've seen that before. I saw it in a family that a grandfather had died of colon cancer. In the child and in one of the parents had the same gene, and well, they didn't even know that about the grandfather, but I'm sure it was the same one. Now everyone in the family needs colonoscopies. That's something they did not want to hear. But now that they know that it can save a life, or maybe even more than one life, Somewhere in the 40s or so those people get colon cancer. So you want to start searching, like at 30 or something. Wow, so that is actually bad news. Off target, it was 4% in the study. I don't want to scare people out.
Dr. Richard Boles:Two out of the 50 people got bad news off target. One of them I just told you about. The other one found out they had an Ehlers-Danlos type gene that could be a problem. We did all the tests and found it wasn't a problem. It was bad news because they got upset and had to do a bunch of MRIs and everything. Yes, Out of 50 people, that was it. I mean, nothing else was bad news. They either knew about it before or it was something like oh, there's a gene for hyper cholesterol. Yep, Everyone in my family has that. I know that. Well, now you can talk to the cardiologist and know what treatment because you know what gene it is. That's wonderful. That really bad news. It's just kind of you know. But anyway, off-target findings one in five was given off-target findings. Now, if I went for the whole gentleman look for every little problem, I'm sure I could find a lot in everyone, but that's not what I do.
Brett:Yeah yeah. Wow, that's interesting. That's a little extra bang for your buck too, for doing the.
Dr. Richard Boles:Right, I mean, at least you know there's nothing really obvious in there.
Brett:That's great. Yeah, that could be really like you said, out of 50 people. That could be really a relief in the long run.
Dr. Richard Boles:So that's good, good news yeah no, a lot of families are relief you didn't find anything else at all and they feel better that they got good, oh yeah.
Brett:A sigh of relief.
Dr. Richard Boles:Well, I mean I told them something usually, but I mean, almost everybody has something positive. I would say about 10% of the families that I do this on, I didn't find anything at all, so I sent it to immunology for that. But about 90% of the time I found things that were important, relevant to the situation. That's good. And, like I said, about 68% of the time 66% of the time I found things that then led directly to treatment, and not necessarily years later. The other thing that the genome can give you is an investment in the future. What it gives you is that your whole DNA is on the computer thing and if something comes up later, it can be useful.
Dr. Richard Boles:Like one of the patients I have, she had cyclic vomiting syndrome that's one of the things I do and then a couple of years later she developed a thyroid cancer. Well, the cancer specialist wanted the genetic sequence and it was right there already. They can use it immediately. By the way, they took the tumor out and she's doing great Wonderful Cyclic vomiting gone too. But you know these are things that can be helpful. Right that other doctors can also use this information to help, for you know what's needed. It's an investment in the future. That's good, that's really good.
Brett:And it's all good news, encouraging. So how do these pathways fit into the neuro needs?
Dr. Richard Boles:Well, I had worked at Cortagen and I was the medical director and had seen literally like a thousand kids with autism with their sequencing. Back then we were only doing about a thousand genes or to three thousand genes. Now we're doing all twenty three thousand genes and I've done multiple hundreds on that that I've looked at personally. So the genes that can cause autism, yeah, there's thousands of them, several hundred that are proven and probably at least a thousand or more. But there's a thousand different ways an autistic kid can present. They're all different, they're all unique, but there's not that many pathways in the middle.
Dr. Richard Boles:Genes don't cause disease on their own. Genes cause disturbances and cell homeostasis. They take things out of balance and those are in particular pathways and those pathways then lead to disease. So it depends on how. In that one study there were seven pathways and five of them are treatable and six of them actually were treatable in some cases and four of them are highly treatable. Two of them were semi-treatable depending on the situation, one of them not.
Dr. Richard Boles:If you go beyond that study and you look, okay, what other pathways were there in other patients? There are other pathways like neuroinflammation and methylation, cytoskeleton and cell migration. There are other pathways involved. But when you look at it all and there's maybe you know 10 or so pathways that are instrumental into autism and half of those pathways are treatable, and I took all of the treatments for all of those pathways and I stuck them into one jar. That's basically what I did, and Spectrum Needs is a powder form.
Dr. Richard Boles:It comes in lemon or berry. You can mix it in any beverage, you can put as much water or smoothie or anything you want to taste, and it has 33 active ingredients in it and they not only hit all of those pathways that are important in neurodevelopmental disease, but it's also a very strong and highly activated multivitamin, multimineral with a lot of antioxidants. And I hit a lot of the minor pathways, like the creatine transport pathway and the nitrogen oxygen synthase pathway, which opens up the blood vessels in the brain that some people have them, other people don't, but I want to make sure it's in there. So it hits the major pathways, the minor pathways that your child may or may not have um plus vitamins and minerals, and so what it really is is you don't need to take a multivitamin on top of that. It doubles as that. Oh good, and it um, it addresses that.
Dr. Richard Boles:So I start my kids on that um, while I get the DNA, and this is um, this is a uh, a daily something that you take twice a day. Yeah, a kid between 44 and 88 pounds, 20 to 40 kilos, take two scoops twice a day, two scoops in the morning, two scoops in the evening. That one tub will last a month. Younger kids will take smaller kids will take less. Older kids or adults, if they want to take it will take more. It's by weight, it's on the label.
Dr. Richard Boles:I see yes, yeah, they take it twice a day and it takes a couple of months two to three months to really kick in and then six months to see full, you know, even some recovery after that, because you need to heal the brain and then the brain needs to remodel and you need to learn. So it takes a while. It's not going to be if Dr McCoy beamed down and said here's the pill. You're not going to suddenly jump off the gurney and run around, right, you're going to get better first. Okay, so it takes a while, but it covers the basics and the vast majority of the children improve. Some of them improve dramatically so that their disease basically is gone. Others have mild improvement and Some of them improve dramatically so that their disease basically is gone. Others have mild improvement and most of them are somewhere in between those two extremes.
Brett:And this doesn't take place of diet. This is in addition to a good diet, correct? Oh, of course.
Dr. Richard Boles:I mean you can take all the supplement in the world and not make up for a good diet, and you can eat the best diet in the world and not give the high amounts of some of these that you can get in a supplement. They're synergistic and they're both necessary. You need good diet and you need good supplementation.
Brett:I see.
Dr. Richard Boles:It's like diet and exercise One without the other is just not doing it.
Brett:Right right.
Dr. Richard Boles:Not that one without the other isn't better than neither right.
Dr. Richard Boles:But it's still just not getting there. Yeah, yeah, so you need both. And for those that can swallow, and usually around 10 years of age or so, I recommend to try to transfer over, if not earlier. There's energy needs and it comes in a capsule form and so you would take the capsules in the morning, depending on your weight, and the capsules in the evening, and it has 40 active ingredients and it's a little bit more geared towards what an adolescent or adult needs in terms of dosing. I see A little bit less of the B vitamins, a little bit more of the carnitine and vitamin D, etc. So it's more geared on what the needs of that age group are. But 90% of the two products are identical. It's just whether you can swallow or not. Yeah, that's good.
Dr. Richard Boles:The other things I make, because those are in a powder and you know oil and water doesn't mix. The oils don't mix with the powders. I've tried it. I wanted one product that could do everything. It didn't work. Blood levels did not go up. I also get blood levels to check that in my patients. I get carnitine levels, magnesium levels, potassium levels, coenzyme, q10 levels and vitamin D 25-hydroxy, q10 levels and vitamin D 25 hydroxy. But anyway, at least I get those. But coenzyme Q10 and the omega-3 fatty acids are in oils and they're not bioavailable. When you mix them in powders, the blood levels don't go up, hardly at all.
Dr. Richard Boles:The vast majority of the CoQs that you buy coenzyme Q10, are worthless. They're ubiquinone with an N-O-N-E. If it says none at the end, you don't want it and they usually just say coenzyme Q10. What you want is ubiquinol with an N-O-L at the end, usually because that's more expensive. It's hard to find in stores and usually people don't buy it because it's twice as expensive but it's five times more bioavailable. So that means a half times more economical for the same amount, right, so it makes no sense or whatever, but people don't want to pick up a $50 jar in a store and I can understand that.
Dr. Richard Boles:So anyway, not all ubiquinols are the same. Some of them are, most of them are in soy, some of them are in limoline, which is the oil of, like lemon or orange peel. The one that we private label as Q needs are little capsules and they have ubiquinol in limoline and they're highly reduced so that they're better than just the average one. So I do recommend that and I usually have adults on about 200. That's two of them in the morning and another two at night, and adolescents are usually two in the morning, one at night and school-aged kids are usually one and one. I mean, obviously, if you have like a preschooler, you would have to reduce the dose or anything, and then I get blood levels and I can go up or down depending on the blood level. Quest Diagnostics does good blood levels for CoQ. You just have to make sure that they order the tubes ahead of time and that they know what they're doing and they check the computer and they do it right.
Brett:Yes, yeah, and all these are you order directly from NeuroNeeds or are you available in stores?
Dr. Richard Boles:Well, there are some stores and you can certainly get it from some of the doctors that do it, but most people order directly from Neuroneeds. It's just neuroneedscom, okay, and you can get it directly. You don't need a doctor's prescription or everything. They're all natural compounds, they're all things that are in food, but the amounts are higher than you could get for eating the entire salad bar. Basically, yes, at least some of them Incredible.
Dr. Richard Boles:The other one that I recommend is an omega-3. Omega-3 means the double bond is at the third to the last carbon. So why is that omega? Omega means the last letter, the Greek alphabet. The omega-3s are critically important for brain growth and for heart and the rest of the body hair, skin, nails and a lot of cosmetics and things.
Dr. Richard Boles:We don't get a mega freeze. Our cavemen, ancestors did, and cavewomen, because they picked things off the dirt and they had mold and fungus and all sorts of things on there. Those microorganisms make a mega freeze, but the plants really don't make very much and everything's been washed and polished and everything, and it's been. You know, through factory farming and things, that we don't get enough omega threes. Now it's in plankton and the fish and the shrimp eat the plankton. But if you don't eat very much seafood you're not getting enough, and if you eat a lot of seafood you're probably mercury toxic. So I mean, so most people get it from fish oil. And fish oil is great if you're not trying to get it to brain, but it's triglyceride bound, it does not cross the blood-brain barrier and the liver can only convert a little bit. So all the fish oil in the world, liver still converts a little bit. You want it to get into brain for neurodevelopmental disorders or even for cyclic vomiting, which appears to be in the brainstem.
Dr. Richard Boles:The main thing on chronic fatigue. You need to get across the blood-brain barrier. It has to be phospholipid-bound. That's normally you get from krill, like in shrimp. Yes, if you get krill oil, it goes directly across the blood-brain barrier. So I have a mega needs. It's krill oil plus fish oil plus sunflower seed, derived phosphatidylserine, which is also good for blood. So it's one product that has fish, krill and sunflower seed together. It would be like three different products otherwise.
Brett:Yes, yeah. So do you have any bundles?
Dr. Richard Boles:Yes, I usually recommend that you take the mitochondrial cocktail multivitamin product. That's either if you can swallow energy needs or if you can't spectrum needs in either flavor. So one of those plus the CoQ Q needs, plus the omega-3 omega needs. So there's a brain bundle that has the three of those and you can choose whether you want lemon or berry in the spectrum needs or if you want energy needs and then you get the Q needs and the omega needs with it. It's on the website If you just go down to the bottom of the cell tab or the buy tab, right, okay?
Brett:So, potentially, how many? How many of these supplements would a person be on a day?
Dr. Richard Boles:Potentially, if they were trying to treat everything.
Dr. Richard Boles:It could be quite a lot because there's 40 active ingredients and energy needs. So I do recommend that you take five capsules of energy needs in the morning and five at night Two Q in the morning, two at night, one omega in the morning and one at night. So you're taking eight capsules but you're getting about 55 or so active ingredients. That's incredible. I mean which you know. Eight capsules is not 55, but I know a lot of people don't like to take eight, but it's just the amounts that are necessary for healing. Just one capsule isn't going to do it. It just can't throw it into one. But you don't start on five, you start on one twice a day, work your way up. Side effects are really rare. I've never seen a severe side effect. I've never seen a side effect that didn't go away immediately after stopping. Okay, interesting.
Brett:Okay.
Dr. Richard Boles:That's good. Their vitamins and minerals are over-the-counter. The government considers them as generally recommended, as safe they're correct okay, but the two side effects that you can get.
Dr. Richard Boles:You can get nausea with any supplement and this is no exception. If you take it with a meal, you'll get less nausea. After a while your stomach gets used to it. You don't need it anymore in most people. Then the other one is some people kind of over energize us because you're kind of helping their mind work and sometimes sometimes these autistic kids can be really good kids because they have so much they don't have enough energy to cause trouble and when they become more normal kids they get into normal trouble.
Brett:Yes, yes.
Dr. Richard Boles:Might be the problem. Let them do their normal stuff. But if there's a little bit over energized, move up a little bit slower. Some kids don't need the full amount. A half amount or so is good enough. And there's also another product called Calm Needs which has many things in it that will help with the GABA and also with the serotonin. Okay, and so it doesn't sedate. You can do a math test or you can drive on it. But it counteracts the positive thing in those people that are overly charged.
Dr. Richard Boles:Most people don't take calm needs because of that. Most people take calm needs simply because they school anxiety, test anxiety, social anxiety. The kids or adolescents or even adults will take it in the morning because they don't want to meet their boss, they're a little bit scared or something. They'll take one or two capsules. It doesn't sedate them at all. Like I said, you can drive, you can do it, you can run a meeting with PowerPoints and everything on it. It just makes you a little more mellow. A lot of the teenagers say it's a placebo, it doesn't do anything, they don't feel any different. But their mothers say, you know, but he's not screaming anymore. Yeah, it's a little bit, you know, a little soothing sort of thing, kind of calms you down, you're not as easy to excite and to get angry. And then some people take it at night. It doesn't sedate at all, but what it does is that if they ruminate for the day and they're worried about what happened, they can take one, just kind of mellow out and go to sleep.
Dr. Richard Boles:I was going to ask you about that. Okay, some people you can take either and some people will take both. But I see most of my patients will take it in the morning or maybe, you know, in the afternoon before homework. They're getting all upset about the homework. They may take another dose, but you know something like that, the other products. Like I said, it takes a few months because the brain needs to heal, calm needs. You don't take it because you want to get better three months from now. You take it because you want to get better 30 minutes from now. It's like you can take ibuprofen. It's something you do on the moment because you want it better. It'll be gone within 12 hours or so. Sure, yeah, yeah.
Brett:Well, it all sounds safe and very accessible. That's what I love about this too. You don't have to do anything super special.
Dr. Richard Boles:So how can you get advantage if you can't get sequence? Well, I realize that not everyone can afford to get the sequencing, and have me take a look at it and everything. Although it can say, even if it saves a couple of emergency room visits, it's a lot cheaper, but it's still not something everyone in the world can do. But the knowledge that we're getting from the fact that so many people are getting sequence can help your children, even if they're not sequenced, because of the pathways that I mentioned Cation channels, mitochondria, neurotransmission those are the main treatable ones. But there's also amino acids, neuroinflammation, methylation. These are all treatable pathways and they're all treatable pathways which are in the neuro needs. So I guess the answer does go to NeuroNeeds and there are some other brands out there. But I really recommend that you get a combination product. Take it twice a day, give it a few months and in the vast majority of cases you will see improvement. That's really encouraging.
Brett:Wow, and you've mentioned already NeuroNeedscom.
Dr. Richard Boles:I don't think I mentioned that, but neuroneedscom all one word.
Brett:Neuroneeds yes neuroneeds and also, how can people find you?
Dr. Richard Boles:I'm easy to find. I'm at richardbowles at neuroneedscom.
Brett:And that's Bowles B-O-L-E-S Right, and we'll put that in the show notes as well, is there anything else we didn't cover that you'd like to share that?
Dr. Richard Boles:we should. Well, if people are interested in my looking at the sequence, I suggest that they speak to Liz, and she's my coordinator and she can help with the logistics and the pricing and all that and what you need to do, and her email is a little bit complex, but you're going to put that in there as well, right? I?
Brett:will. Yes, if you guys send it to us, I'll be sure to put it in there Wonderful.
Brett:Well, dr Bowles, it's been fascinating number one, but it's also been a pleasure, anda treasure, having you here today because of the work that you're doing. You took us back to the future. I don't know how this works, but I really appreciate this and we're so grateful that folks like you are doing these studies and can wrap their brain around this and know that what you're doing is really helping many, many families find treatable solutions, especially for those on the spectrum right now, that relate to what we're talking about today. Thank you so much for being here. Oh, you're welcome, all right, and we'd love to have you back sometime if you're. Oh, certainly, yeah, thank you Appreciate it.
Brett:Bye, okay, bye-bye. What a mind-blowing concept and hope-filled conversation. We are so grateful for passionate doctors, researchers and healthcare workers like Dr Bowles who are daily finding new treatments and solutions for a world desperate for answers in the field of health. Glad you could be with us. Be sure to check out the show notes for today's episode at AkeelAutismFoundationorg or the Akeel Autism Podcast, wherever you listen to your podcasts. Thank you so much for listening to the Akil Autism Foundation podcast. We hope you found it helpful and inspiring and look forward to seeing you here again soon.