Jen (00:00:00):
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction tackle tough to understand topics and try to shed light on how best to maximize and optimize health participation and quality of life for those with cerebral palsy.
Nathalie (00:00:31):
Hey, good morning, Jen. How are you? I'm good. Good morning. It's more like a brunch time for us around here, but yes, good morning. It's been a wild morning. I had the pleasure of doing my fasting blood work. We're into preventative care today, so this morning was my fasting blood work day, and I got there and I was like, I'm going to knock this out. It's going to be in and out. And I waited for about two hours.
(00:01:04):
The one thing did anyone tell you, so the first time I did fasting blood work, I was so angry by the time I actually got it because they made me wait two hours like everyone else, and I hadn't had my coffee that morning. I'm thinking, coffee, fasting, blah, blah. So I get there and thank God it's not the doctor doing the actual blood draw because you never want a doctor doing your blood draw. Doctors are not the best phlebotomists and nurses are. So I get there and I'm so angry and they finally do it and I'm like, is there anything to drink here? And they're like, what do you mean drink? I'm like, coffee. And they're like, oh, honey, this is the south honey, are you telling me you didn't have your coffee this morning? And I'm like, no, ma'am, I'm fasting. And she said, you can have black coffee. And I'm like, you've got to be kidding me.
Jen (00:02:10):
I actually went through that in my head and my doctor wrote water only for 12 hours before. And so I was like, all right, I'm going to be a rule follower, even though I know that coffee's okay. But I followed the rules. I didn't have a sip of coffee. I've got my tea now, it's too late for coffee. So now I'm having my tea. And welcome. I'm happy to be back doing our coffee tea talk. And we've talked about this. Our topic today, we're going to be doing a little bit on preventative care or preventative care. I want you to help me decide which is the better word, and then vaccines, because we all know that this is a hot topic right now and you happen to be quite the expert on it. So a
Nathalie (00:03:01):
Former career.
Jen (00:03:03):
I'm looking forward to learning from you about this. I feel like we all see so much in the news, and as we all know, we can't trust the news. So this is exciting to have this opportunity to talk to you about it. So I guess I kind of want to first dive in because I am talking about preventive versus preventative and primary care. Is there a distinction between the words and the Yeah,
Nathalie (00:03:33):
So there is a difference between primary care and preventative or preventive care, whatever. I think that's mainly a language which language you're using, but prevention versus primary care. So preventive care is one small part of primary care. Primary care encompasses all the healthcare you need. That is routine and that is part of your everyday life to stay healthy. And so primary care doctors can be anyone from a family medicine doctor to an internal medicine doctor to a pediatrician. There are many types of primary care doctors. There are also a distinction sometimes when people now go to their primary care office, they see a nurse practitioner or a physician's assistant, and that is a very different proposition to the doctor. The training is very different. They can absolutely do primary care, but their training is different and they're not always going to have the training and the long amounts of study that are required to put more complex questions in place. But they're extremely great at, they're called physician extenders in many ways, and they're a great and valuable part of the team. They just have a slightly different function. So primary care encompasses not just preventive care, which are vaccines are part of it,
(00:05:12):
Those blood draws, you just got that monitor, your cholesterol probably, and monitoring of blood pressure, all these other things that are part of it. But primary care is also sick care treatment of chronic illnesses, for example. And so it's more than just preventive care. Preventive care is everything that tries to prevent disease. And there's a lot of things. Some of it is monitoring. So we monitor blood pressure and cholesterol levels to intervene before something gets too far out of whack. That's a technical term, but I know very impressive. But no, the other thing is it's also trying to stay healthy ahead of disease, and that's where vaccines fall.
Jen (00:06:16):
Gotcha. When you're thinking about both, okay, you're a new parent. You have your pediatrician that you probably interviewed before while you were pregnant, at least we did if you're prepared. That's what we did. We had a couple people that we interviewed in advance and picked out our pediatrician and thank God we had, because all of a sudden things came early and we had somebody ready to go. But when it comes to primary care and prevention, I guess vaccines is where I'd like to start with this really is does that really start with your pediatrician and with birth and moving forward? Is prevention of disease and all of that part of that healthy start?
Nathalie (00:07:12):
Oh yeah. So it starts at birth, right? There are some things that we know that are so lifesaving, such as erythromycin ointment in the eyes, right? Such as a vitamin K shot to prevent brain bleeds. And that's just a vitamin shock that we know helps prevent intracranial bleeding and those bleeds that can result in devastating problems for a child. So that's the start really of prevention. It's at birth and we've become really good at eliminating some problems because of that, some really, really bad problems for our kids. And then there's vaccines and some of them start at birth, and usually the ones that start at birth are for two reasons, like the Hep B vaccine. One of the reasons why is that it is such a devastating disorder to have Hep B, hep C, some of these other problems, Hep B, especially it's you can eliminate that.
Jen (00:08:27):
You
Nathalie (00:08:27):
Can eliminate something that is not only a chronic and devastating illness, but whose complications can be fatal just by a simple series of vaccines. And then there's the vaccines that happen throughout childhood. The AAP has mandated times. So that's the American Academy of Pediatrics recommends different times for different vaccines. They correspond to when children are more susceptible to certain illnesses and they also correspond to times in a baby's life or a child's life where they're going to be more exposed to certain things than others.
Jen (00:09:09):
Interesting.
Nathalie (00:09:10):
And there's new data. For example, I know this is very controversial. People didn't want their children to get the HPV vaccine,
Jen (00:09:17):
Human
Nathalie (00:09:17):
Pap, the virus vaccine, but there's new data that's shown that since the vaccine, the rates of cancer have drastically dropped. And you think my child is not the person who's going to get cervical cancer because that would mean that they engaged in some sort of activity that resulted in them getting the human papillomavirus. The point is not the activity you engage in because there's so many ways sometimes of getting diseases that we don't think of. And what I say is even for the best of parents, as you're trying to be the best parents, you just want to give your child the chance to never experience certain types of cancer that are preventable, right?
Jen (00:10:04):
Right.
Nathalie (00:10:04):
So now we know human papilloma virus works, and there's a new publication that shows, oh my gosh, the rates of cancer for this are decreasing. And that means more women who will be able to have children. And I think about this in, I love babies. I think every baby that's born is wonderful and regardless of you and I have experienced some traumatic births and some consequences from that, but I still think every single baby that's born is just the most wonderful creature. And in most parents that I meet think that too. I have rarely ever met a bad parent and I really mean that. So I think since I don't meet bad parents, I know that they love their kids and they want the best for them, and the best for them is vaccines. And we can talk about how they work and why, but did you get Bower vaccinated?
Jen (00:11:13):
Of course I did. And I was thinking about the HPV vaccine. I think most people associate that with women. But you look at men who have HPV, they end up with, I think it's esophageal cancers and mouth cancers as a result. And
Nathalie (00:11:30):
They pass it on to their partners
Jen (00:11:33):
Without knowing, right? Yeah, without knowing It's not always knowing. They literally don't know. Exactly. Exactly. So it'll be interesting to see, and I haven't read that study, but if female cancers, if they're being reduced, if we see kind of down the road, because these male cancers that occur are later in life, and so you wouldn't necessarily, I'm just curious if that data is out there yet.
Nathalie (00:12:00):
It may be, but you know what? As much as I read almost everything that I can get my hands on, sometimes I miss things this would, and I'll be the first to say to all our listeners, I don't know the answer to what Jen just asked me, but I'm sure that one of our listeners is going to look it up and be like, you should have read this,
Natalie. No.
Jen (00:12:20):
Well, they didn't know that we'd be talking about this topic today and that you had already read that other study. But I think, let's go back to the primary care, and I still want to dive back into vaccines, but I want to dive back into primary care and what we as parents should be expecting our primary care provider, especially with parents of kids with cp, what should we be expecting our care providers,
Nathalie (00:12:51):
You, your parent, what do you expect? And for anyone who hasn't realized this, Jen might have high expectations of people.
Jen (00:13:01):
Sorry. Well, I feel like I'm disappointed, and I think that's part of the problem, is that I expect my child's primary care provider to do what my primary care provider would do for me and to do the fasting blood work and to really do a thorough physical exam and make sure for primary care, not thinking necessarily all about the issues of spasticity and dystonia and a lot of the CP things, but sort of looking beyond all of that and just making sure that all the regular things that we need to be taking care of. My son's cholesterol levels, we just mentioned that I'm thinking about things like testicular cancer, are they checking down there? And so really making sure that yes, they are. Well, you're watching me roll my eyes because I will tell you that in our case, it hasn't happened as frequently as I think it should be happening. I think I just wonder, and I am just one, you're a doctor. What I experienced and what I've expected for myself and my primary care, I want a very thorough exam. And I don't necessarily think that we've gotten that all the time. I feel like people have kept Bower in his wheelchair, haven't necessarily done a good physical exam
Nathalie (00:14:41):
Even during an annual checkup.
Jen (00:14:44):
Yeah, no, not I would expect.
Nathalie (00:14:49):
So some of it is, I guess when you're thinking about it, if your child has movement restrictions and is going to feel pain when they are stretched out to conduct a thorough exam because they can't necessarily stand, I think that's where through no fault of their own, not every primary care practice is going to have a way to get your child comfortable.
(00:15:20):
So you have two options. You can find one where there is that accommodation, or if you know that there's something that's going to allow your child to be laid out flat on that exam table, let's say it's a memory foam pad or something else. I think it's okay to say, listen, I want you to be able to do the same exam on my child or on me. In the case of a person, tell me, is it a possibility at your practice to have that? And I understand that it may not be within their budget to actually have some of these things
Jen (00:16:03):
Big table, right? Yeah.
Nathalie (00:16:05):
Would it be okay if I brought my own? Would you assist me if I brought my memory foam pad, my adaptation, my bath chair, which might make things easier, and I would be surprised if any of your primary care docs said no, it's not that they don't want. It's that a lot of the times they don't have the resources. Please remember that primary care, and especially pediatrics in the US is compensated far less than specialty, and pediatrics is the worst, right? Pediatricians are definitely not well compensated compared to specialists and adult doctors.
Jen (00:16:50):
And
Nathalie (00:16:51):
So they're not doing this because they don't want to, and they're literally doing it because their practice to function has to have them see a certain number of patients every day. And they may not have a budget for specialized equipment, but I don't know a single person who takes care of kids who if you said, Hey, can I bring something that would make you better able to do an exam in my child in, they'd be like, yeah, make sure you tell the nurse before because we might need help getting it set up, but tell us in advance. And absolutely they want to do a good job. You don't go into pediatrics because you want to want the glamor or the big bucks, you go into it because you just love kids. And so I would say if they don't have it, either you can try to find a practice, but that might be far away from your home, which I don't recommend.
Jen (00:17:50):
Yeah, exactly.
Nathalie (00:17:51):
Yeah. Find somewhere close to your home that you can trust and then build a relationship, not just with one doctor, but with a team. The
Jen (00:18:01):
Whole team,
Nathalie (00:18:02):
Right? Yeah. Because it's OBs have had that model for a while where they know that the day you deliver your baby may not be the day that they're on call. So they have you build a relationship with several of them. We all want that one person to be our quarterback, but the only quarterback is us.
Jen (00:18:22):
It's
Nathalie (00:18:22):
Not someone else.
Jen (00:18:24):
And that was going to be one of the things that you and I feel like I've always seen myself as the quarterback, and that's the case manager in me. Back when I was doing case management and I had a caseload of children with disabilities and we've got therapeutic foster parents, we have schools, I've got judges. And so that was my role was to make sure that all of this was coordinated. And so when Bower was born, I was like, this is a no brainer. I'm the quarterback of this team. And I feel like it is a lot of coordination between the general providers and making sure that that communication occurs between the specialists and sometimes just translating things and sending those extra emails or sending those extra messages in MyChart just saying, Hey, we met with the physiatrist today. Here's even before, because we never know if the charts are going to sync up, but I always make sure that everybody's on the same page. If everybody has an active role in Bowers care, I want to make sure that that communication is communicated to everybody. So when you ask me about my, and just
Nathalie (00:19:40):
Remember, just because you've sent a message in MyChart doesn't mean your doctor's seen it because there's no time in their day where the hospital has said, we are protecting one hour of your time to look through MyChart and answer all your emails. None. That's something you're supposed to do when you get home at night. And so it's funny because I've called families on weekends and at night and I'm like, I'm so sorry. And if anyone who's one of my families is listening, they know this and I'm like, I'm so sorry I couldn't get around to your message. It's Friday at five o'clock. I'm driving finally back home in my car. It's six 30 sometimes. And I'm like, I'm so sorry to call you so late, but this is when I have finally time in my commute, which sucks, but this is when I have time or it's on the weekends when I'm at the playground with my dog or my kids.
Jen (00:20:39):
That's your protected time. I have to say I love you and I think that's so good, but this is a boundary you probably need to work on. Natalie.
Nathalie (00:20:45):
No, no, no. Can I just tell you, I am no different than every pediatrician out there if you think I'm different, they all are like that because the system doesn't allow us protected time to just be calling families. And so my chart, a lot of patients think it's the best thing since what sliced bread, although I don't see what's so great about sliced bread. But I will tell you, MyChart, even though it informs you, do you know how distressing it is as a physician? Let's say I've ordered a hip x-ray cerebral palsy surveillance, and that hip X-ray just got red, but I'm seeing 10 patients that day and I'm in the middle of seeing them. And that hip x-ray got back and that result got to that family,
Jen (00:21:39):
Went to
Nathalie (00:21:39):
The family. I know. And they found out before I did, and I have had zero chance
Jen (00:21:44):
To
Nathalie (00:21:44):
Call them and talk to them. They get very upset. They're like, why haven't you called me about this result? I'm like, you literally found out before I did. So it's really done zero for the trust that you're supposed to have in this relationship with a patient. It's awful because we're always scrambling trying to see at the end of a day when we're supposed to be cooking dinner for our families, we're actually looking at MyChart messages
(00:22:16):
To see if some result came back because the rest of the time it's patient after patient, after patient stacked. And so I don't think people understand the other side. And it's not the parent's fault. It's the system that has changed to this automatic notification of everyone in real time, which is empowering maybe to the family, but it also means that sometimes they get news that we wish we had time to explain to them and we're not going to have time to do that, and they're going to think we don't care. It's not. It's that they literally found out the second it was posted.
Jen (00:22:57):
Yeah, I've been wondering about that. And that is something that I've found to be incredibly distressing, and I understand that that's going on. I know this story, but it is remarkable to me. I know you say it's empowering for the families, but at the same time, I don't think it is. It seems to me like you should. If a result like that comes back and your provider hasn't had a chance to look at it, it shouldn't go to, you have a translation. It's what it is.
Nathalie (00:23:34):
I know. It's just that I want people to understand that being a primary care doctor is tough. That people who do it do it because they have a passion for it, not because really the only reward they're going to find in it is taking care of people and trying to keep them as healthy as possible. It's the reward of keeping people healthy. It it's definitely not been made easy. And the burden of documentation is huge. Even those MyCharts that get to you, they require hours of time. One of my colleagues tells me that she spends every week, eight hours out of her weekend completing her charts because she sees complex patients eight hours out of her weekend every weekend completing her charts. And you know what? That's because the burden of documentation is huge, but regardless
Jen (00:24:41):
Of, and then you've got complex patients, so you've got more, they take longer documentation. You've got a 45 minute appointment instead of a 15 minute appointment. And hopefully, and I'm hoping, what I'm seeing is that more hospitals and more over the past 15 years, I feel like I've seen this, that more practices are being established that are complex care only, where they can have more protected time so that they can, the benefits outweigh the benefits to the families, but also the cost benefits, which is really sadly what drives it of having, yeah, but
Nathalie (00:25:19):
Let's not talk about the business of medicine. We are here to talk about prevention in CP and why it matters preventive care in CP and why it matters. And I really think that this is a really important topic that's more important than the business of medicine because children with CP and adults with CP have a right to stay healthy in the same way that everyone else does, not a right to not be sick, a right to stay healthy, which is very different.
Jen (00:25:50):
I love that. Okay, so I guess the first thing to really, or not the first thing, we've gone off on so many tangents already, but what are important concepts for families of babies with CP to consider during these doctor's appointments during these early years? Early months? When you go in, I know earlier in the other podcast you've done with me, you've said, ask me about my sleep. Ask me about my fitness. What are some of these concepts that families really should focus on? If you had to say, okay, before every appointment, you've got your list or whatever, but if you have to break that into concepts, how would you do that?
Nathalie (00:26:28):
Oh, actually, just one really simple one, it it's actually pretty easy is are you doing the same assessment, the same visit with my child as you would for any other child
Jen (00:26:46):
Really? I got it. Great.
Nathalie (00:26:50):
There you go. Okay. And it's that simple because if they are, they're doing good preventive care. And then if your child has a complicated medical course, because CP sometimes comes with other complications, then it's okay to say after they've answered, so what about some of the things that might be more specific to my baby's feeding or my baby's breathing that are complicated because of cp? Have you done anything specific about that? Now, they may or may not, or they may say, I don't know of anything else that could be done. And that's okay to say, I don't know. But to be like, alright, well, actually I am concerned because I've heard that babies with CP can have problems with their hips. This is their two year appointment, and my baby's been walking and doing really well, but I know they have CP and I haven't yet had a hip x-ray. Is that normal? Is that something you do?
(00:28:17):
Whether they choose to do it themselves or whether they choose to refer you for an x-ray and a specialist like physiatry or an orthopedic surgeon to look at that, it doesn't matter. But sometimes it's because a child is on an end of the spectrum of CP where they almost look like any other kid and people forget to do the extra. And sometimes it's because a kid is on a more affected side of the spectrum in various domains, and they're not thinking, oh, I probably also need to plan for this that. So I think the first question is really simple. Are you doing everything at this evaluation that you would do for another kid who doesn't have cp? And if they say yes, absolutely, then that's great. If they say, well, I wasn't able to do this and this and that, oh, that's a red flag. Exactly. That's a red flag. And it's okay to just say, well, tell me what's keeping you from doing it, partner. So the key is you are the quarterback, but if you think about a quarterback, and please, for those of you who are football experts, don't judge. Don't judge. I am, as you have found out, not sporty, I'm dating myself, but in the Spice Girls
Jen (00:29:47):
Only one, I was just thinking, you're not sporty spice.
Nathalie (00:29:49):
No, I'm not sporty. I'm not scary. I'm not like, oh my God, I'm not baby. Oh my God, please let me not have been posh. I think you're posh. Oh my gosh. What about you, sporty?
Jen (00:30:05):
I probably take sporty or definitely not baby
Nathalie (00:30:09):
Ginger. Ginger.
Jen (00:30:13):
I always wanted to be posh, but I never was. She was fun. I never
Nathalie (00:30:15):
Was. Okay. Sorry. We're totally, this is the problem with coffee talk. We always relate to our deep cultural knowledge of the spice girls clearly, but the key is that it's okay to not know everything. They just need to tell you, and then you need to partner in that team and you're the quarterback. So that means you're not just charged with direction. You're the one who sets the goals as the quarterback, but you're also the person responsible for what communication. Right? The quarterback doesn't just lead by having great ideas or knowing what he wants to accomplish. He leads because he communicates and he checks on that communication. So you see them, they'll communicate and then they'll wait to hear back if they heard back from their teammates. Yep. I got what you were asking. And so it's a lot like that with your primary care doctor. I've got a kid with cp. I'm asking you a question. Have you done everything okay? You haven't. I hear you. Tell me why you haven't. Okay, you're telling me because you don't have this resource. You can't do this because you're afraid of hurting my child. Okay, I have a solution to that. I don't have a solution to that, but I think it's really important that we find one question back. How do we come up with a solution? What do you recommend?
(00:31:52):
Maybe a referral to this kind of doctor, even though it's a basic thing that I should be able to do in primary care, I can't. But do you see how it's an exchange? Absolutely. And you're communicating your goal as the quarterback of your child's care is, I want my child to be as healthy as they possibly can be, and to accomplish that, I'm going to lead you in that direction. And I'm going to question you, and I'm going to communicate with you till I get the answer I need to hear.
Jen (00:32:23):
This leads me to a tangent or thought,
Nathalie (00:32:26):
Oh, no, no, no. We have to go back to vaccines.
Jen (00:32:29):
I know. I know. And I do think that a lot of families in general struggle with health in their own healthcare and their own wellness. Hopefully, I feel like our listeners are people who are invested in cerebral palsy. They have families with people with cerebral palsy, but I'm thinking about some of the families that might not know about health for themselves. And so you've got a child with cerebral palsy, how we could help educate families who maybe don't even know how to best care for themselves to ensure that their children are healthy as well.
Nathalie (00:33:07):
So this is what they need to know. Even if they don't know what is required by the American Medical Association, the American Pediatric Association, like the a p or the A, right? Even if they don't know, their doctors do
Jen (00:33:27):
Know,
Nathalie (00:33:28):
Because their doctors have to know this. This is part of how they train. And again, it's okay to say, do you have a handout that shows me when I'm supposed to come for all my visits or when my child is supposed to come? They usually do some practices, even send out emails
Jen (00:33:49):
At
Nathalie (00:33:50):
Your next visit. This is what's going to happen.
Jen (00:33:53):
Read
Nathalie (00:33:53):
Those. The other thing is, and I know this is hard because not everyone has internet at home, but asking for information via email rather than letters or phone can sometimes be really helpful because it lets you access it. So there's almost everywhere that has free internet right
Jen (00:34:19):
Now.
Nathalie (00:34:20):
You can go to the public library and get free internet. You might, even if you're not understanding something that a doctor's office has sent you, your next visit is going to have this, that, and you're going to be doing this, this, that, and we're going to be measuring. You will find that librarians will help you look up what's going on and what that means. They're amazing and it's free. So just get the information you need from the doctors, even if you don't know what's supposed to happen, they're supposed to tell you. And if you can't figure it out, go to people who can help you translate it into plain English. There are also apps that help with care navigation. We're working on one for CP with my fabulous friend Gavin Cole quit. And with the CPF, I will tell you flat out, it's going to be awesome. I know you're going to be part of it, Jen, I'm super, super excited. We'll have to have Gavin on this podcast sometime because he's super fun.
Jen (00:35:21):
He's wonderful. Yeah, he's wonderful. And he's easy to talk to. He's
Nathalie (00:35:25):
Yeah, and he's like the king of adaptive sports. But I think right now what I would do is there are good care navigation apps. If want an app on your phone that helps for CP and for things will be coming down the pipeline soon that help you ask the right questions, understand what the roadmap looks like, and so on. For now, just ask and expect an answer. And it's okay to say to your doctor, Hey, you just told me a ton of stuff. Can I please have it in writing? Whenever our patients leave on our after visit summary, they're complex
Jen (00:36:08):
Visits.
Nathalie (00:36:09):
There's the point by point about what we talked about, and I'm not going to lie. I wish I could tell you as always, and parents speak, we try our best, but sometimes we still use doctor speak. And so we're hoping that people will go look up on the internet, what those words mean, and so on.
Jen (00:36:25):
I literally did that this week with my dad. He had an appointment and the neurologist came back with a sentence that I didn't understand, and I copied and pasted that sentence into Google and came back with a plain language summary of what that sentence meant. And it described what was going on with my dad to a T. It is unbelievable. And I was like, wow, this was really
Nathalie (00:36:47):
Helpful. So I think it's all about, remember I told you it's about communicating. It's okay if you as a family are lost and you don't know what the next step is. You have every right to feel that way, but the only way you're going to get out of it is by saying, I am the quarterback of my own team. And as the quarterback, that doctor right across from me, he's one of my team members. I don't know if he's my running back or what, because you know me in football. But
Jen (00:37:23):
The fact is, see, I even knew the word. Yeah, I like it. Wide receiver maybe. Maybe they're the wide receivers. You pitch it out to 'em, and
Nathalie (00:37:32):
I don't know. I don't think that they think that far ahead sometimes, but what I do think they're good at just sort of muscling through
Jen (00:37:41):
Things. Yeah, yeah, that's true. That's true. And then they can pass that ball to somebody else.
Nathalie (00:37:49):
Yeah, exactly. Like a specialist.
Jen (00:37:51):
Exactly.
Nathalie (00:37:52):
Oh my God, we're getting so good at football. You know that every person who actually knows football and is listening to US American Football, by the way, soccer's not like that, but is listening to us and is thinking, oh my God, these ladies need to stop talking about football.
Jen (00:38:09):
So we will. And we're going to talk about vaccines. All right? Yes. Woo. Vaccines. Let's really get to the heart of it at the beginning. How on earth two vaccines work?
Nathalie (00:38:21):
So vaccines are literally the coolest invention ever because they're not a medicine, and this is what's so amazing. Vaccines use our own immune systems to make us supermen and superwomen of the immune system. I mean, it's so cool because what they do is they leverage something we do anyway. So when we're born, if we're breastfed, we have a whole bunch of antibodies. And antibodies are these proteins that float around in our system, that our body makes in various organs to protect us against viruses and bacteria and all sorts of other pathogens. And these antibodies, they look almost like little forks I I'm imagining.
(00:39:12):
And these forks, they have these ends that latch on to anything that isn't supposed to be in our body. And it latches on and it sends that latching on shows makes that danger molecule visible to our immune cells, our T cells, our B cells, actually, our T cells, macrophages, and other cells, not our B cells. Our B cells usually manufacture the antibodies. So basically this is what happens when you're a baby, your immune system not so great. You're relying on that breast milk to give you those little antibodies floating everywhere. Then your immune system starts kicking in, and the organs that produce those antibodies start making them. And it takes a long time to make an antibody. It takes to build up a capacity. It can take up to two weeks till you have enough antibodies to fight off something. Actually, that's pretty normal, two weeks.
(00:40:16):
And so you're making these antibodies as you're exposed to stuff. My poor neighbor has her baby in daycare constant. She's like, is it normal? She's had four infections in three weeks, run knows it. I'm like, she said, is it a problem with her? I'm like, no, no, no. She's just being exposed and she keeps making antibodies. So what vaccines do is they put just a little amount of part of something, a virus or sometimes a bacteria that would be really devastating to you. And they help build those little forks, those little antibodies that are going to bind to it without flooding your system with so much that you actually get sick. Get sick.
Jen (00:41:08):
Got it.
Nathalie (00:41:09):
And so what happens is imagine that your immune system is like a library and it's got books in it, and each book corresponds to a different virus or bacteria, and it's the instruction manual on how to make those antibodies. If you've already got a really great book that tells you how to do it, then you can make antibodies to respond to that aggression within less than two days, within a few hours. And within two days, you can have super high levels of them,
Jen (00:41:46):
But
Nathalie (00:41:46):
If you've never seen it before, it'll take up to two weeks to do it. So it's not that people who have great immune systems couldn't eventually make antibodies to it, but the younger you are, the lower the chances you've been exposed to something. So your library, it isn't very big. And so I think about tetanus. Why do we have to keep
Jen (00:42:14):
Getting tetanus shots? Yeah, that was actually one quote when you were saying this. I was like, well, why do we have to get repeats of song?
Nathalie (00:42:20):
Right? Well, it has to do with the fact that the library's there, but just like I remember I said, it's a great instruction manual, but you know how there's new technology and things happen, and you might get me older and slower. Your immune system can do that too. It can forget. And the instruction manuals can be a little out of date, and you just need for that booster. So that manual is more up to date. And that process of making those little proteins that are going to latch onto things is faster. Why is it important?
(00:43:01):
If you step on something outside, if your child plays in the dirt and scratches themselves or something like that and is exposed to something like tetanus, you don't have two weeks to respond. You don't. You'd be dead. Wow. You don't have two weeks to respond to tetanus. You need to respond very fast, and you can't respond very fast if you've never been exposed before. It'll take two weeks to respond, and if you're out of date in your manual, you'll respond better than if you didn't have it. But it's going to take longer than you have. And you might end up in the intensive care unit on a ventilator with a machine helping you breathe and things like that. You have a better chance if you have been vaccinated, that you've never been vaccinated, but it's really how fast you can respond.
Jen (00:43:56):
Got it.
Nathalie (00:43:57):
So why is it important in kids? In kids, they've either never been exposed or they've only been exposed once. There are some disorders and diseases. We think about chickenpox. Okay. Chickenpox is a perfect example. So I got chickenpox as a child. Me too, because there was no chicken chickenpox vaccine, but there are, and I was okay. I was okay. But now I am at risk if I don't get the chickenpox vaccine, the varicella vaccine for getting other complications later on. Because as your immunity, as you get older, like shingles. Shingles,
Jen (00:44:42):
Right?
Nathalie (00:44:43):
Right. So I'm getting vaccinated. I don't want shingles. I'm like, no, I've seen
Jen (00:44:49):
My shingles. I was going to say it's incredibly painful. Incredibly painful,
Nathalie (00:44:54):
And it's devastating. And it's more than painful shingles in the optic distribution and the distribution of the optic nerve can cause blindness.
Jen (00:45:05):
Yeah.
Nathalie (00:45:05):
Can you imagine?
Jen (00:45:06):
Yeah.
Nathalie (00:45:07):
So a vaccine that helps you not become blind, that's really important, right? But it's more than that. I was one of the lucky kids. You were one of the lucky kids. But there are kids who weren't so lucky with chickenpox who are more fragile and who had devastating consequences? Measles, mumps, rubella. Oh, rubella. Oh my gosh. So we do it because we want to use what is naturally happening in our immune system. And all it is people think it's a medicine, but it's not. There is no magic to vaccines. A vaccine used to be, when I first got vaccines, this is going to date me, but they used to scratch your skin a little bit and put a little bit of, there was this little antigen they would put basically, please don't quote me on this, a little dirt. It's very purified dirt, but what kids do all the time, except it was in such a microdose that my immune system was able to build up resistance. And so the best thing about vaccines is that they just make you super immune to things. They let your library of antibodies be present and up to date.
Jen (00:46:34):
Right. So given all of that, how did it become such a controversial topic? What do you mean by that? It just is, and yeah, I go back to the, and you still, oh, you hear these rumors, vaccines cause autism. And then I remember when Bowers first born, there were things about the preservatives that were used in the vaccines. So can you dispel these myths? So first of all, myths and
Nathalie (00:47:10):
Runners. There are no more preservatives in vaccine. There's a tiny bit of aluminum that is less than in on the desk you're sitting at. Literally, they no longer use thiol. So that's been removed from vaccines. When thiol was removed from vaccines, just to be clear, there was no, actually the rates of autism continued to increase. So it has nothing to do with the preservatives. There are no more preservatives as
Jen (00:47:42):
Such. Okay.
Nathalie (00:47:45):
So what about the controversies and the links with autism and things like that? I guess as a researcher and a doctor, I'm so angry at the doctors and researchers that did this because what they did is they prayed on people like you and me. They prayed on parents of children who have a really serious neurodevelopmental condition. They preyed on their fear and their sadness, and the fact that we would do anything for our kids. And this, I would do anything for my kid. Ridiculous stuff. And I know you would do too. And including sometimes I wish I could believe in magic. I wish I could. I have faith, as you know, we've talked about faith.
Jen (00:48:39):
I
Nathalie (00:48:39):
Have faith, but I do not believe in magic. And I think that what these people did when they published these things like, oh, vaccines cause autism. It's like if someone told me vaccines cause cp or you do eight leaks or Brussels sprouts during your pregnancy, and that is what caused your child cp. And I'd be like, I ate Brussels sprouts. Oh my God, if people had taken Brussels sprouts off the market, this wouldn't have happened.
Jen (00:49:11):
And
Nathalie (00:49:11):
There would be a cause, a reason that I can pinpoint
Jen (00:49:15):
Absolutely.
Nathalie (00:49:16):
And I could prevent this from happening, and I would have a way of directing my anger.
Jen (00:49:20):
He's got something to blame. Right.
Nathalie (00:49:22):
And I need that because you know what? Right now I still don't exactly
Jen (00:49:27):
Know. Exactly. Yeah. And it's funny, I thought about that. It's like you want something to blame, because we're always going to blame ourselves. We're always going to blame ourselves, and I'm never going to get past that. But the best I can do is be the best mom I can do and have faith that I'm doing everything I can to help my son be the best that he can be. And try not to blame myself for things that I had no control over. But I always will.
Nathalie (00:50:00):
I know. And I spend every visit with the parents I work with telling them, this is not your fault, and they don't believe me. But in this case, what this doctor and these researchers did through falsified data,
Jen (00:50:16):
Yeah, they're falsified data. I know, I know.
Nathalie (00:50:19):
But to me, okay, so falsification of data as a researcher who lives by the integrity of my data is, oh my gosh, it's so bad. As a researcher, falsifying data is, the end is absolutely not acceptable because it's a betrayal of the trust that is placed in you. And what these people did is they not only betrayed the trust that was placed in them, but on top of it, they preyed on the most vulnerable parents, those of children who have a neurodevelopmental disorder. And they made them believe that somehow there was a reason for that. And we now know, I just saw a study that just came out. The AAP just talked about there's a new biomarker that the FDA has approved a genetic biomarker that, and I have to read more about it, but that it doesn't tell you if you're going to get autism, but I think it rules out some of the genetic causes of autism that we know about Now that is a little bit more reasonable and the FDA has gone over it and everything else. But that's very different than saying, so the reason why people thought that is because vaccine happens in childhood and autism.
Jen (00:51:41):
Happens in childhood. Right, exactly. The ccp, right? Yeah. Vaccines do not cause cp. So there was correlation, but not causation, but not even correlation. There wasn't even a correlation. It was just timeliness. It was timing, it was timeliness. So I guess I know that the doctor that did that study, he lost his medical license and they had to retract the study.
Nathalie (00:52:03):
All the researchers who publish, retracted their data.
Jen (00:52:06):
But what I'm curious too about is was the study actually ever replicated properly? No.
Nathalie (00:52:13):
No, no. There's nothing ever since that has shown that either the mumps, measles and rubella vaccine causes this or any other vaccine. Let's be clear. So I mean, it's sort of, and for cp, this is so important because you know what? Our children are at higher risk of some things that are preventable with vaccines, especially those who have children with A-G-M-F-C-S that is higher and who have less mobility. And because some of their cardio respiratory vulnerabilities, so their lungs are not going to be able to handle as much, they're not going to have as much movement that helps clear some things. And so all of the respiratory conditions, they're more susceptible to, they absolutely have to be vaccinated, covid, flu, any respiratory vaccine, just if someone ever doesn't get vaccinated for those with a child with cp, they're literally putting them at risk. And the other thing they need to understand is if they themselves are not vaccinated and their family, they're actually, I mean, putting their child at risk and they need to understand this. They are playing Russian roulette with their child's health,
Jen (00:53:47):
And you end up in the emergency room and weeks in the hospital, and hopefully you get past it. Got it. Thank you. Thank you for that.
Nathalie (00:53:59):
Emphatic, I talk about social responsibility a lot. I also get vaccinated, not just for my child who has cp,
Jen (00:54:07):
For your patients,
Nathalie (00:54:08):
For my patients, because what if I gave them something they have cp? What if I gave them something that hurt their kid? And the other people I care about are my aging parents, by the way, who are vulnerable and I make anyone who gets around my child vaccinated.
Jen (00:54:34):
Are there any particular risks as far as thinking about cerebral palsy? And yes, we know we're going to get our vaccines, the families are going in, they're making sure that they're doing everything right, but is there anything that they need to think about as far as vaccines go, yes, we're getting our vaccine, but just keep an eye out for or after your child gets their vaccine, or any kind of things like that that families should be aware of just so their eyes wide open?
Nathalie (00:55:07):
Yeah, I think there's some things. So it's going to hurt. Sometimes vaccines hurt. And one of the things you can do, because they may be less active, is massage. Good point. If they can clench their fists, even clenching their fist, they are actively taking part in that. If they can't do that, have them move whatever and do it on a schedule.
Jen (00:55:32):
Mass
Nathalie (00:55:32):
Massage, massaging that muscle does
Jen (00:55:36):
Help.
Nathalie (00:55:37):
Get it in a place where there's more muscle. Don't let the nurse or whoever's doing that vaccine do it on, I know Leah wouldn't like me talking about this skinny arms on another child, skinny arms, because he's got muscle. He's building muscle with fitness. But I think there's that. The other thing to know is just because your child got the flu or covid, remember that if your child has cp or if you have cp, you are one of the populations who should be getting the flu treatments and the covid treatments, so you don't have your child suffer for weeks afterwards. So there are antiviral medications, and if your child came down and got tested for flu quickly,
Jen (00:56:37):
Usually
Nathalie (00:56:37):
They check for flu covid real quick. Now, if they're positive for either of those, because your child has cp, you should ask your doctor for the corresponding antiviral medicine. It won't prevent your child from having it and building an immune response. You will still get to build that immune system, but it'll substantially decrease the likelihood that they'll end up in the hospital and it'll substantially shorten the symptoms. Perhaps even prevent long or other things that happen. Yeah. Well, so just remember kids with cp, you should always ask for that because they qualify for it.
Jen (00:57:21):
Thank you. That's good to know. I did not know that. I had no clue about that. And I'm very grateful you mentioned it, because should this, God forbid,
Nathalie (00:57:31):
No one needs to suffer.
Jen (00:57:34):
And I'm thinking, oh, it's time to cuddle up in bed with some chicken noodle soup and just GR and bear it.
Nathalie (00:57:39):
Yeah, I'm going to be like, no, I think he needs some paxlovid. Exactly. Exactly. And I don't care how bad it makes your mouth taste, you're not going to get long and you're not
Jen (00:57:50):
Going to end up it and Tamiflu, right? Or
Nathalie (00:57:53):
Yeah, those are the name brands. But even in Tamiflu now, there are better antivirals for the flu, and you just have to keep, and your doctor will know which one. And then for Covid, I think they're always finding out new ones. The thing is, people are like, oh, they can just suck it up and their immune system's going to kick in, and maybe it will. But if they've got CP
Jen (00:58:19):
Pulmonary,
Nathalie (00:58:19):
I get so worried
Jen (00:58:20):
About lungs
Nathalie (00:58:22):
And then there's long, like my child got a really bad hit to his brain at birth. Do I want this virus giving him another hit? I don't think so. That's why as much as I use football analogies, I totally think that kids with CP should not play football because I don't want them getting concussions.
Jen (00:58:42):
I get it. I get it. And one of my favorite doctors is also, he's the concussion guy, and he's a physiatrist. And every year around September, October, I'll be like, Hey, you want to go out and play? You want to go do something? And he's like, yeah, no, can't, it's busy season. And I'm like, oh, it's lost.
Nathalie (00:59:01):
What does he think about CP and football?
Jen (00:59:04):
Oh God. I guarantee you he wouldn't.
Nathalie (00:59:07):
He would
Jen (00:59:07):
Back me up. Right. He would back you up on
Nathalie (00:59:09):
This. Yes. Awesome. Hey, Jen, I am going to have to go, and I'm really sorry because as you know, our brunch time Coffee talk has meant that, and I'm going to talk to one of our Irish listeners, actually, I found out that people in Ireland are listening to our podcast,
Jen (00:59:30):
So I'm so excited. It's very exciting. But Natalie, thank you. We'll continue this next week. Bye, ginger Spice. Bye Posh.
Jen (00:59:43):
Thanks for listening to the Cerebral Palsy Health Podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JB Lyman at Mac. That's MA c.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it is not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast or any other medical concerns with their personal medical team.