EPISODE 1
“Death by Treatment:
This Could Happen To You”

Join Heather and Lee as they share their personal stories about their two children who were both harmed by prescribed health treatments. This riveting episode includes both of their journeys, including the loss of Heather’s son, Shea, and the injuries to Lee’s daughter, Charlie, and their journeys to seek justice and change in an often corrupt and broken system.

TRANSCRIPT

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LEE: Awareness is power.

HEATHER:  And it can save your life.

LEE: Welcome to our podcast, “Know Risks.”

HEATHER:  I’m Heather.

LEE: And I’m Lee. We’re two moms, a lawyer and a nurse, who were brought together by a misfortune. Both our children were harmed by adverse drug reactions.

HEATHER: The purpose of this podcast is to educate people on the risk of any health treatments you put in or on your body.

LEE: We feel if we’d been properly informed and been our own experts, our children would not have been harmed.

HEATHER: In today’s world, with medicines being incentivized for profits, you need to educate yourself. Know the risk of health treatments and it can protect yourself and your loved ones from being harmed.

LEE: In today’s episode we’re going to be sharing our stories and our journeys that we had with our two children, who were both harmed by prescribed health treatments.

Heather, maybe you should start with a bit of story about Shea.

HEATHER:  Well, sure, sure. And talking about Shea, the reason that Lee and I met each other was through the harm that our children had to endure from health treatments they should have never been given.  In my case, my son, Shea, was a college student and he was given a very large dose of an antibiotic and it was just for the purposes of preventing an infection. He was having a deviated septum corrected.  We took him to one of the best health centers, we thought, in the Chicagoland area, where I live, Northwestern, and he was given Levaquin. 

Many people are familiar with fluoroquinolones now because in the recent years there’s been so many changes to the warning labels, black box warnings due to adverse effects from this drug.  Unfortunately, for my son, he experienced a lot of the adverse effects, which were even on the label at that time.  They’re very much more highlighted now and part of black box warnings, which we’ll talk about a little more.  But at that time, especially in the year he was given the drug, 2011, it was very popular, it was given out a lot, and unfortunately, when he experienced the adverse effects to the drug, a lot of them neuropsychiatric — what we would consider mental health issues:  anxiety, insomnia, depression, also, you know, heart issues that came from taking this drug.  Unfortunately for my family, he was then — rather than being listened to regarding what he thought he was experiencing from this antibiotic, he was put in the mental health system.  And unfortunately, when you’re having a toxic reaction to a drug, the worst thing you could do is to layer more medications on top of that to mask it; those symptoms need to be dealt with.  And unfortunately, in my son’s case, they were not.  My son passed away in 2013 after just being given a host of drugs, which just led to his anxiety and confusion being so out of control.  He drove his car into a cement embankment.  It’s a hard story to talk about, it’s a difficult story to tell, but since this happened, that’s what I’ve been doing is trying to get the word out on what happened to him, and often that’s very hard because health treatments in our country, especially if it’s an adverse effect, we don’t hear much about them and we’re told to believe that they’re very rare.  However, I did get some coverage, and thankfully, although Lee was in another country, she saw some of that coverage and it was at the exact same time when her daughter, Charlie, was experiencing or had just experienced similar effects from the same drug.  Now, fluoroquinolones, there’s, you know, a host of them; many of you probably have heard of Levaquin but also Cipro.  So that was kind of — I am an attorney.  I was pursuing a case against the doctors who failed to listen to my son when he presented to them that this was what he believed was causing him these problems, and Lee was also involved in litigation, which I stepped in and assisted with when her daughter received this drug during a trip in the United States.

And I’ll let her talk a little bit about what happened to Charlie, but the important part of this story is Charlie’s still here with us, and one of the reasons, I believe, for that is because her mother was able to immediately, after this happened to her daughter, identify the cause of the problem and then not waver when health professionals consistently told her and her daughter that, again, this is so rare, that can’t be what’s happening, when in fact that was exactly what was happening.  

And before I let Lee talk about this, which I will, you know, in terms of her daughter, my son was 18 when he was given this drug.  Charlie was very young.  

Lee, she was?

LEE:  Thirteen. 

HEATHER:  Thirteen.  These drugs — to show how little even our health professionals look at these labelings, this drug is off-label for children unless they have contracted the plague — you don’t hear children having the plague too often — or anthrax exposure.  So while my son was 18, he still shouldn’t have gotten as much of this drug as he did, but in Lee’s case, her daughter — it shouldn’t even have been a first-line antibiotic for the issues her daughter had.

You know, Lee, why don’t you talk a little bit about what happened to Charlie?

LEE:  I will tell Charlie’s story, but, like, just to follow that is: It shouldn’t have been given in either of our children’s cases, but neither — if we had been given proper, like, information and been allowed to give informed consent, meaning that you had, you know, known all the benefits and the risks and be able to judge that — neither of us would have let our children have this medication. 

HEATHER:  Yeah, how is a doctor going to do that when you even present with an adverse effect to a drug and they don’t even know what’s on the warning label, and that just shows the work we need to do, you know, everywhere to make sure that doctors know their responsibility if they’re prescribing something, to know these risks, in addition to the benefits, so they can inform us and also acknowledge an adverse effect when it happens to you or a loved one.  

So we’ll get back to Charlie, though.

LEE:  Yeah, yeah.  So Charlie, as Heather mentioned, was only 13 when she received the fluoroquinolone and it was for a very minor toe infection, actually, most likely just athlete’s foot that had got a bit infected and so it was — it should never have been used.  You know, the indication, as Heather mentioned, was for anybody under 18 at the time it was never to be used unless it was anthrax or the plague, and that was because at the time that Charlie received the drug, there was a black box warning in place for permanent disabling side effects. And clearly, you know —

HEATHER:  Yeah, and she got an IV.  I just have to say that.  That’s just so unbelievable to me to give it intravenously to a child.  

LEE:  Yeah, well, that’s a whole nother story as to why that happened; there was a financial incentive for that IV, but because that drug does have a — like over — almost 99 percent bioavailability, meaning there’s no benefit to giving it IV over oral, except for increased side effects. 

But, you know, one of the things with this drug is that when Charlie took it, within the first 24 hours she told me that her arms and legs felt weird.  I wasn’t experiencing it myself.  Had I been told that that was one of the side effects, that it was attacking her central nervous system, we would have stopped, but I wasn’t feeling it and I told her she had a mild infection because I didn’t know what she was experiencing, and we continued the medication, and then, subsequently, there was a whole cascade of side effects.  And Charlie at the time was a competitive swimmer; she was actually ranked in Canada top in her age group in numerous events, especially open water.  She went to the point, within a week, to not even barely being able to move her arms and legs and there was issues with her — gastrointestinal issues; there was issues — I mean, extreme headaches and heart palpitations and, you know, apart from the muscle and joint pain.  And this drug also does cause tendon rupturing, and that’s probably the most common side effect from this drug.  So if you don’t present with tendon rupturing, then they almost think that maybe your other side effects aren’t related.  And that’s probably the most frustrating part of the journey for me and I think for numerous other people that I’ve connected with in similar situation is just to not be believed that these symptoms are related to the drug.  And there is a delay in when the symptoms occur; like it’s even after the drug has stopped that the symptoms continue because it’s damage to some of the mitochondria and the DNA, so there’s a whole cascade of symptoms, but, you know, to not be heard or believed.  And what happened in my scenario was a lot of the doctors weren’t even aware of the black box warning that was in place.  Now, that warning for the permanent disabling side effects that came in actually in 2016 was because Heather and some other people went forward and spoke about their cases — and in Heather’s case, Shea’s case — and got the FDA to put that warning on.  That warning was what helped me with Charlie, because I finally was able to go in with that warning and say, no, like, this is what’s happening to Charlie; it’s an FDA black box warning.  And I started to get some credibility.  Now, a lot of people did want to add more drugs and treat, you know, the symptoms because she was having, you know, the headaches, she was having the joint pain, all those things, and from what I read and the people that I fortunately got connected with, that would have made things worse. 

And I think that’s exactly what happened in Shea’s case is more drugs.  Treating symptoms and not looking at the cause made things worse and actually led to his death.

HEATHER:  Yeah.  In a lot of ways — you mentioned, you know, the black box warning in 2016, and, yeah, I just want to mention that for a moment because it was — there was just so many victims of this drug that showed up.  And, you know, the first thing that’s really important and I’m sure we’ll go into more detail about this in the future, but, you know, the adverse reporting, the FAERS system.  So it’s reporting adverse events when you have a bad reaction to a drug and that could be reported by a doctor or by the person who experienced the adverse effect, and those are sent to the FDA and that’s kind of how these things come about; it generally starts with a citizens’ petition.  If you get advocates together — in our case we had some great advocates who kind of gathered us and some of us were able to testify in front of the FDA. 

But, you know, I just want to say, there was so much — and this part of the frustration — so much information about this drug that was already out there; it’s just — if you don’t know what you don’t know, it’s very hard to navigate and find it.  You know, I had my son — and, you know, I can’t imagine having these horrific effects.  We say, and the labeling says, central nervous system damage.  You know, these are — he was hallucinating.  These are — you know, in this current era, and especially, you know, around 2013, you know, the drugs for mental health issues were just being used broadly, antipsychotic, benzodiazepines.  We know a lot more about them now, but at that time, I mean, they were — and a lot of work needs to be done in this area for sure. But just so frequently — and we just really didn’t know.  You know, what we told Shea was tell your doctors everything, and after he passed away — because he was in college, you know, and he was seeing the doctors — and looked at the records, you know, you could see that Levaquin. Similar to Charlie — you said that her legs felt funny.  You know, Shea was telling his friends, this drug is messing with my mind.  Like, he was — it was just really frightening.

LEE:  Yeah, and she was — I didn’t make even the connection because I was focusing on the permanent disabling side effects, which was a whole cascade of side effects that were identified in that warning.  But it wasn’t until later that there was something else that came in; there was, you know, the suicide and the — well, they’re calling it central nervous system side effects.  But now that I reflect back, Charlie would wake up terrified and even in the middle of the day — this is a child that was very comfortable being home alone if I went across the street, whatever, and she’d slept in her own room since she was, like, a newborn baby — too scared to sleep in her own room, up all night, “I’m scared.”  And I’m like, what are you scared of?  At the time, I thought it was the pain that she was in and she was maybe scared that she wasn’t going to get better.  I didn’t make the connection that that’s exactly what Shea was feeling was these were side effects of the medication and we could have ended up on the same path as you with those additional drugs. 

HEATHER:  Yeah, and we should mention both our kids — you know, my son was an outgoing kid; he was in the Atmospheric Science program at Purdue; he had friends.  You know, when something like this happens to someone, they always want to say that they had underlying issues.  I think Lee and I could both attest:  Our kids did not have these issues. You know?  

LEE:  No.

HEATHER:  And then if they don’t have the issues, “Oh, well, your son was at an age where these issues come out.”  It’s like, that doesn’t make sense, and when you have someone — we know our own bodies, you know, and that’s why I think it’s so important what we’re doing because we need to give people the encouragement when they know that something has affected them, you’re going to go to health professionals and they’re going to tell you it’s — it’s going to take a while to find a good one, unless you’re lucky. 

LEE:  I think our ultimate — our ultimate goal would be to, you know, advise — create awareness so that people realize, you know, as much as the doctors are to do no harm — and this isn’t just about doctors, this is about pretty much any health care treatment that you could seek — you just need to do your own research.  You can’t trust because what we know is in order to get an FDA labeling you need to have a certain, like, you know, citizens’ petition; you need to have people reporting it.  It’s up to the doctors to report these adverse drug reactions, and most often it doesn’t happen.  I think that there’s been numerous studies that show that it actually only takes place in about 1 percent of the cases.  And with Shea and Charlie, both of them were young, healthy people.  A lot of these drugs, especially like the fluoroquinolone Levaquin, they’re prescribed to elderly people, so when you have an elderly person that is starting to hallucinate or, you know, complain of joint pain or, you know, heart palpitations, the doctor’s just telling them, well, it’s your age; they’re never, ever making the connection to the medication, which is really sad.  It was — actually the only thing I remember in Charlie’s case — and, you know, we’re going to talk a lot more about our legal — we both went down a legal — lawsuits to get, you know, some justification, but more the lawsuits that Heather and I pursued were — I mean, she had already lost Shea — and, you know, Charlie.  It was more because we knew that something hadn’t been done right and we feel that in order to get awareness out there, you need to bring these cases forward and it wasn’t about any kind of financial, you know, reward; it was about justifying that something had been done wrong and helping to bring awareness so that it doesn’t happen to other people.  That’s probably the big thing. 

HEATHER:  Yeah, and that’s so necessary now because, you know, to go back to this whole issue that — there’s this kind of mantra in the medical field that this is so rare.  Perhaps it would be rare if these drugs were prescribed for their labeling.  In Charlie’s case, it probably would be rare that someone had an adverse, you know, effect from it if that drug was only prescribed to children who were exposed to anthrax or the plague.  You know, in my son’s case, why as a prophylactic or a preventative he would have been given that — it was absolutely the wrong drug to give him.  It was just very popular at that time.  The pharmaceutical industry — and we’ll talk about this in another episode, but, you know, using drugs at a certain time when there’s, you know, patents and a host of other things going on where they can earn that company a lot of money, it’s really — we’ve kind of been co-opted on health care for profit instead of health care for wellness, because giving these drugs out — they’re useful in very serious situations, but they’re not — so many people got it for a UTI, a urinary tract infection; they’re taking the risk of potentially having the effects that our kids had for a UTI.  Like, it doesn’t take much to sit and weigh that.  Why use that drug?  Now, if you have — you know, there might be, you know, other — pneumonia, antibiotic resistance to something where these drugs can come into play, but when you’re giving them out broadly across the population, what is considered rare is not going to be rare anymore?

LEE:  Well, and the worst part was that neither the physician, you know, that prescribed to Shea or in Charlie’s scenario were even aware of the black box warnings, so, you know, that’s a problem in itself is that — you know, and I remember following up with our family doctor after Charlie, you know, was suffering everything and she wasn’t aware of the warning either.

HEATHER:  Yeah, but, you know, I think we need to be careful, Lee, because in both of our cases — your daughter had you as an advocate telling these doctors, from what you saw years later in 2016, you know, that there’s a black box warning.  You’re advocating.  You’re informing them.  So even if a doctor initially gets the wrong diagnoses and they think maybe it is a mental health issue, when that doesn’t work, they have an obligation at some point to listen to the patient instead of making it worse.  In my son’s case, he didn’t have an advocate.  You know, his advocates — and that’s something very, you know, hard to live with but what we told him was tell your doctors everything. Well, he did.  He did tell them, but he was not listened to.  And that is — what’s the point, you know?  I mean, I still believe that we have to push forward with these black box warnings because that gives us, like you said, the credibility —

LEE: Yeah, you’re right.

HEATHER: — that this is happening.  There’s researchers out there, so many — 

LEE:  I mean, I guess potentially in the awareness that we’re, you know, hoping that people — knowing your risks and then that way you’re getting educated and you’re also aware of the potential side effects, so if something does happen I think it’s really important for people to know that they should — these things should be reported.  That’s how you’re going to, you know, get these warnings and labels changed and dangerous drugs off the market, right?  Because I actually — it took me a long time to actually go forward and have — no doctor reported that for Charlie, and I did because I was doing all this research and heard it was the right thing to do, but I don’t think when you’re sick and you’re — you know, a lot of people — Charlie had me, like you said.  She was still a minor and she didn’t have a job that she couldn’t go to; she wasn’t feeling — you know, having to advocate for herself.  So I was able to do all that, but most people are probably too sick to even think about it.

HEATHER:  Yeah, and just like creating the community — I know that’s what’s helped you; it’s what helped me.  I mean, there are so many people out there who are in my situation in that they lost a loved one, or they’ve been harmed themselves, and it’s just incredible the strength because many of them, you know — I hate to talk about it like this and I know we’re very lucky that Charlie’s doing so well, but one of the black box warnings is, you know, for these drugs now is that, you know, the important thing was is that even after you quit taking the drug, it doesn’t — the symptoms could persist and they could be — and this is on the black box warning — irreversible.  I mean, there are so many people I’ve met on this journey who are — you know, they’re just creating communities to raise awareness, but at the same time, they’ve been poisoned.  You know, they’re suffering; they’re still dealing with these effects, and that’s what was so important. And that’s, you know, how Lee and I got together and had the idea to kind of move this forward is to kind of really just spotlight all these different groups because it’s not just fluoroquinolones; this is happening across the board with all kinds of different medical treatments.  And, you know, a lot of it is just, you know, based on the context.  It’s really become more about profit than wellness and we have to watch out for ourselves and our loved ones.

LEE:  I agree.  And I  think, too, you know, maybe down the road we can go into more of what I did for Charlie because I was just so fortunate to connect with the right people.  And, you know, having that background in —

HEATHER:  Who knew how to treat it, yeah.

LEE:  — yeah —

HEATHER:  And not with more drugs. Yeah.

LEE:  — and to have a background in nursing — you know, the guilt that I feel that she even got that drug, I was not familiar with the drug and I wasn’t in a position to be able to look it up where we were.  But, you know, I was able, after the fact, to read a lot of research papers and reach out to a lot of the authors and the different medical professionals that had, you know, written about this medication and I luckily did not go down the path of adding more medication; I went a completely different direction, which was more of a holistic approach and just trying to help Charlie detox and cleanse out, you know.  But, you know, we’ve learned a lot too along the way, and, you know, if there’s a silver lining there, we — yeah.

HEATHER:  All the people that we’ve met along this journey — I know in my son’s case — and one of the first people who actually really looked at every — at all Shea’s complaints — and unfortunately, it was after he passed away — and looked at all the records and really just solidified that Shea was absolutely right, and that was Dr. David Healy.  He was out of Wales.  I believe he’s in Canada now also.  But just being able — and, you know, a lot of his work is also on psychotropic, antidepressants.  There’s just so many things you have to be careful about.  And Lee and I, through our own experiences, have just had the blessing of being able to talk with all these experts, experts that have done the research for the FDA, whether it was, you know, deposing them in lawsuits, you know, for our cases or just talking to them one on one and really having the accessibility.  There’s a whole different side of this, and unfortunately, it’s just not getting into the mainstream. 

And, you know, Lee, you talked about the elderly, but just with the fluoroquinolones, how many people are put in the mental health system from an adverse reaction to one of these drugs, you know, and they don’t even — I mean, never even acknowledging exactly what happened to them, you know?  It’s just —

LEE:  So hard.

HEATHER:  It’s frightening.  

LEE:  I know you and I have talked about this, but we’ve told our children’s stories to people and talked about the fluoroquinolone and I know I’ve encountered two people that have thought back and said, well, I’m having a lot of those symptoms and I’ve been complaining about this and, you know, my doctor tells me it’s nothing or my family thinks I’m crazy, and they’ve looked back in their medical records and they have had that medication.  

HEATHER:  And they find it.  Yes. 

LEE:  And you had that, too, right? 

HEATHER:  I remember the cameraman for Dr. Healy’s deposition was just lingering and lingering after the deposition, you know, and I’m like, what in the world, you know?  So I went over and I’m like, you know, is there something that I missed?  He’s like, you know, I had that drug and I had a lot of the same — like never put it together — a lot of the same effects after that, like, you know, really horrible effects —

LEE:  I know.  I had the same.

HEATHER:  Yeah, in his case he had a joint tear.  And, you know, a lot — to go back to this anxiety, I think as we talk more, we’re going to see a lot of this and it’s a word that I really don’t like because people don’t — it’s hard to say and really put any meaning to, and I think that was purposeful, when it was — came up with it, but it’s called akathisia, and that’s that inner restlessness and anxiety that a lot of these drugs, from antihistamines to antidepressants to fluoroquinolones, cause people to experience.  And it’s very — I mean, it’s very hard to describe but it’s such an inner restlessness that you just want to get out of your own body, you know?  You hear about some of these people — and I don’t use the word suicide because suicide, to me, is an intent to harm yourself.  No story I’ve heard — these are people who wanted to get better.  You know, my son was compliant with all this because he wanted to get better, not because he wanted to end his life. But that particular symptom, we can’t even imagine what it’s like to experience, you know, that, and that’s why when you hear about a lot of the suicides in these cases with adverse drug effects, they’re very — you know, people jumping out of windows.  It’s very immediate and just irrational because you cannot handle — it’s just — you know, it’s like someone had described it as just like, you know, your soul being on fire, your whole inner being.  It’s unbearable.  And it would be wonderful if there was more research done in that area.  I know a lot of doctors are trying to do that. But unfortunately, a lot of this — you know, it just never gets to the mainstream. 

LEE:  It’s hard to get funding when you’re trying to research the dangers of a drug.

HEATHER:  No one wants to say anything bad about treatment.  

LEE:  Yeah.  Right?

HEATHER:  You know, it might affect your stock returns if, you know, oops, this could be dangerous, you know?  So, you know, I think that you and I would agree, though, you have to put your health and well-being first.  There’s no monetary value to that. And I can certainly speak to that, having lost my son.  So, you know, it’s just — I know it’s Lee’s priority and it’s certainly mine to get the message out, and there’s a host of treatments out there — everything carries risks and benefits.  Everything.  Just be aware.

LEE:  Yeah, I think it’s always — we’re not — I think that we want to be clear that we’re not advocating against, you know, all treatments or medication.  

HEATHER:  No.

LEE:  We are advocating about —

HEATHER:  To know.

LEE:  — weighing the benefits versus the risks, and the only way that you can do that is to be fully informed, because most often there are side effects, and sometimes those are ones you need to take the risk because the result of not taking something is so serious.  But at least in our scenarios, that was not the case, and I think in a lot of scenarios that’s just important to do that analysis, and it’s individual but it really comes down to just having, like, full awareness and just, as we call it, knowing your risks.

HEATHER:  Yes.  And you can check out our website, knowrisks.org.  See Charlie’s story; Shea’s story’s on there.  And we just hope in upcoming episodes we can really highlight different treatments and really highlight survivors and advocates to get the word out and their own personal stories.  You know, we’re just moms that want to get this message out, you know, and that’s our mission.

Thank you for joining us today on this episode of “Know Risks,” and remember, being your own expert is the best way to prevent yourself or your loved one from being harmed.

LEE: And please join us for future podcasts and help support us by subscribing, providing some feedback, and of course giving us a five-star rating. You can also follow us on Facebook and Instagram at knowrisks, and check us out on website at knowrisks.org, where you can read our stories, suggest future topics, and share your stories.

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