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In this episode, we have a special guest, Laura Fernando, a patient advocate, who shares her heart-wrenching story of her daughter Lily’s medical journey with COVID-19 and other health conditions. Joining her and Lily is Linda Bluestein, an integrative medicine physician.
Lily was a healthy 12-year-old when she contracted COVID-19 in June 2020. Despite recovering from the initial symptoms, her daughter never fully regained her health. She later contracted a tick-borne illness, and her health declined rapidly. Despite working hard in physical and occupational therapy, her daughter’s health worsened when she contracted COVID-19 a second time in January 2022.
Laura shares the struggles of finding a physician who understood her daughter’s unique and complex medical needs and how one physician’s actions led to a traumatic experience for her daughter and family. But, they eventually found hope and healing with an autonomic specialist team of a neurologist and a gastroenterologist who believed in her daughter and took the time to listen to their narrative and check her previous medical appointments.
Through this episode, the guests discuss the importance of finding the right physician, advocating for yourself and your loved ones in the health care system, and the impact of trauma on the patient’s and their family’s mental and emotional well-being.
Tune in to hear an inspiring story of hope and healing and how one family’s perseverance led to a brighter future for their daughter.
Laura and Lily Fernando are patient advocates. Linda Bluestein is an integrative medicine physician.
They share their stories and discuss the KevinMD article, “My daughter and COVID: a tale of 3 doctors.”
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Transcript
Kevin Pho: Hi, and welcome to the show. Rate and review at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today on the show we have Laura and Lily Fernando and Linda Bluestein. Linda is a regular guest on KevinMD. She’s an integrative medicine physician. Laura and Lily Fernando are patient advocates, and everyone, we’re going to talk about the KevinMD article “My daughter and COVID: a tale of 3 doctors.” Everybody, welcome to the show.
Laura Fernando: Thank you for having us.
Kevin Pho: All right, Laura, just before we get into your article, briefly share your and your daughter’s story and how you got here today.
Laura Fernando: OK, so before June of 2020, we were just a really boring family. We had, you know, youth sports on Saturday, church on Sunday, school during the week, and kids’ activities. We also have a 12-year-old son. And then in June of 2020, myself and the kids got COVID for the first time. Honestly, we have no idea how we got it, because we were still quarantining at the time. My husband and son have asthma, so we were being very, very careful, but we did get it. And we weren’t really that sick. I was in touch with her pediatrician, but we never felt the need to go to the hospital or anything like that.
After about 10 days, the worst of the symptoms, you know, resolved, but Lily never fully recovered, and it just kind of went downhill from there. A lot of things snowballed and her health suffered, and we have spent the last two and a half years looking for appropriate medical care for her. We finally found it this past August, and boy, it’s been a ride since then.
Kevin Pho: And Lily, you are 14 years old. So just tell me in your own words, what exactly were you feeling that made you feel sick?
Lily Fernando: I would have headaches and stomachaches every day, especially when I would eat. I would just feel really tired. I just didn’t feel like myself. I would feel dizzy, things like that.
Kevin Pho: And how long did these symptoms last?
Lily Fernando: Until August. So for over two years.
Kevin Pho: Two years, OK. We’re going to go more into your journey in a little bit. But Linda, for those who didn’t listen to our first few episodes together, just briefly share your story. And how did you meet the Fernandos?
Linda Bluestein: So I am, as you said, an integrative medicine physician, and I saw something that Laura had posted on Facebook that just really struck me. Reading what she had said, I just thought more people need to hear Lily’s story. And ironically, at that time, part of why I wanted people to hear Lily’s story was that she had been struggling with so much, and at that time she was, you know, doing really well. I thought it would be a story of hope. And in the meantime, it seems like it’s turned into a story of resilience and hope.
But also, I really want clinicians to be aware that with people like Lily, if you keep an open mind, you really can help them, and that things are not hopeless just because someone’s been suffering with something for a long time. You know, try to keep an open mind. Try to think outside the box. And I just thought that this needed to be shared on a much bigger platform, so that’s why we wrote the KevinMD article.
Kevin Pho: All right. So Laura, you share your story, of course, in this KevinMD article, “My daughter and COVID: a tale of 3 doctors.” So tell us about that journey over the course of a couple of years before you met Linda.
Laura Fernando: Like I said, it started in June of 2020. She just never recovered well. She had a lot of brain fog, daily headaches, and daily GI pain, and she just wasn’t herself. Then later that fall, we were at the beach, and Lily got bitten by a tick and contracted Borrelia miyamotoi, which created a lot of additional symptoms. So her pediatrician, you know, ran kind of all the labs and found that and treated it with doxycycline, which then removed those symptoms.
And so from January of 2020, excuse me, January of 2021, to December of 2021, Lily worked so hard at PT and OT to just get better. She was in a wheelchair, and she worked to get walking again, and she was almost back to baseline. Our pediatrician at the time was helping us manage everything, because it wasn’t quite as complex as it’s grown to be. And then in January of 2022, we got COVID again, and that just kind of reignited all the same problems, twice as bad. She was barely inching out of that, and in March of 2022 she had surgery. She had a granuloma and a cyst on her upper cheek that had gotten quite inflamed, and they just needed to clean that out and do some diagnostics. So that surgery, we can really point to as kind of the precipice that her health just tanked over, even though the surgery went well and the anesthesia went well. It’s just like that was the last straw.
So along the way, and in this time we had moved from Florida back to our native Wisconsin, we had reconnected with her old pediatrician and were working with this doctor as well as the local children’s hospital, just to kind of get diagnostics done and try to see what was going on. She already had a diagnosis of POTS, and her pediatrician in Florida suspected something like MCAS, but we hadn’t had a chance to do the testing yet.
Kevin Pho: Now, for those who aren’t familiar, what are POTS and MCAS?
Laura Fernando: POTS is postural orthostatic tachycardia syndrome. It’s a condition where there’s nothing wrong with your heart, but it’s about how your brain controls your heart, so your heart rate, your blood pressure, and your autonomic nervous system. And MCAS is mast cell activation syndrome. It’s when you don’t have a true allergy to proteins, but your body overreacts to things that could potentially be allergens, so you have allergic reactions to things that you’re not allergic to.
And so, over the course of meeting with different specialists and different doctors, a neurologist did an MRI of her spine to try to see if we could find out where the problems were that she was having with walking, and it did find inflammation. That was also one of Lily’s experiences with anaphylaxis, to the contrast, which was terrifying for all of us. And so then the neurologist had Lily try baclofen and steroids to see if we could help with that, and also suggested Benadryl, because at this point there’s a lot in the mix here.
At this point, Lily had already developed serotonin syndrome from a trial of sertraline to try to help with chronic pain. While some of the symptoms, like the confusion, the fever, and the throwing up, resolved on their own, she was left with a lot of muscle posturing and rigidity that did not resolve on its own, and she was then in a tilt-in-space wheelchair because she couldn’t even sit up on her own. And the baclofen did not; she also had a reaction to that in the hospital setting. And so the neurologist suggested trying scheduled Benadryl, and so we did that. Of course, it wasn’t a prescription, because it’s available to buy over the counter, but it was in the documentation that this was what she had suggested.
We were in the ER, and one of the attendings there was, let’s just say, curious about why my daughter was taking so much Benadryl. I understand her concern, and I actually value her concern, but I asked her to check the doctor’s notes so she could see that this was a course of treatment suggested by a physician. It was just not something that I had decided to do. And for whatever reason, that was not done, and instead she decided to call Child Protective Services and file a report on our family.
Lily’s been through, our whole family has been through, a lot of medical trauma, because unfortunately, in a lot of situations where you have a complex condition, or a condition that might not show up easily on a lab or another diagnostic, it can be an easy answer to blame psychological factors. And so it was a very difficult situation. Lily also used to volunteer. Our whole family did, at a foster care ministry in our church, so we helped support foster families, and so she was well aware what calling Child Protective Services meant. And the doctors threatened to do this while we were in the ER, in front of Lily, and that was just very overwhelming.
So of course, you know, they followed through on the investigation. In the state of Wisconsin, when there’s a report of medical neglect, it triggers not only a CPS investigation but also a criminal investigation, and so our family went through both of those. And of course I complied with all the questions, because I didn’t have anything to hide, you know, and I signed every release, and I said, “Please talk to her doctors. Talk to the people that know her. Talk to the people that know me.” And they did, and the social worker, you know, went through everything and talked to Dr. Gisela Chelimsky, who’s now her main specialist, and, you know, we were cleared of any wrongdoing.
In the process, I determined that the children’s hospital we were at was just not well equipped to serve my daughter. And so I started vetting all the autonomic specialists, literally in the country, and got it down to a short list of about three, and called all those offices and just made appointments. They were all booked pretty far out, and so I thought, “Well, we’ll just keep them all on the books and see what shakes out.” And in August, actually mid-July, the facility we’re at now called us to schedule an appointment in two weeks. These are doctors that had just moved to Virginia and gotten their licenses cleared and all of that.
And so in the middle of August, Lily and I and my son came out to Virginia and went to her first appointment with these doctors. I came into it very nervous, but also very hopeful, because I had heard such great things about them. And they heard the same set of information that the doctor in the ER had heard, and they said, “Well, let’s think about this, right? Why is the Benadryl helping so much?” I mean, it literally cleared up so many things for her. She felt better. She could do higher-level schoolwork. She could function better in the home. She wasn’t having as many reactions. She was actually more alert on all this Benadryl. And they were curious about it and said, “Well, that doesn’t really make sense, right? Benadryl usually makes people very sleepy and function less well, so let’s try to figure out why it’s making her function better, and then treat it in a different way with fewer side effects.”
She was admitted, and I stayed with her in August, and that was for three weeks, and at that time, that seemed like a ridiculously long amount of time to be in the hospital. We wrote this article in late September, I would say, and Lily was doing great. And then an interesting thing happened. We were weaning off the steroids that the first neurologist had her on, and as she finished the steroid wean, she started having a lot of health problems. Some of the old things started coming back, and then some new ones. So we were in touch with her doctors, and the question was, well, did these high-dose steroids cause a problem like adrenal insufficiency, or were they treating an underlying, undiagnosed problem, and then when those steroids were removed, you know, the problem popped back up?
So we saw an endocrinologist there in Wisconsin who did a very thorough workup and ruled out Cushing’s and adrenal insufficiency and all manner of things. So then the question was, well, maybe it was treating something that was underlying, that was part of all this. And so we came back to Virginia in November, and her specialist kind of hooked her up with an immunologist here at VCU and a couple of other specialties. We now have a laundry list of specialists. And we started the investigation there, and she did another round of DHE at that time for her migraines.
And then we came back for a follow-up at the beginning of December, and at that time she was admitted for six weeks. I didn’t know medical problems like this existed, right? It sounds so strange, but she did not have titers to most of her childhood vaccines, which she had received. Her entire GI tract was shutting down. There were just all kinds of things happening. It was very much documented that she functioned much better on a lot of antihistamines and steroids, neither of which are great to be on, right? Both of them have significant issues.
And so we started December with a lot of labs, and then they had to revaccinate her. At this time she was NPO, and she was on TPN exclusively, and then we had to wait a month until they could pull the titers from those vaccines. If we had been local, they would have discharged us to go home with the PICC, but there were just too many risks in being discharged to, like, Ronald McDonald House or a hotel in a strange city with a PICC. So we stayed in the hospital, and honestly, it was a fruitful time, because a lot of things happened there that I had seen, and her father had seen, and she had experienced, but now they’re in the medical record, right? Now they were observed by residents and attendings and nurses. And it’s not that her doctors didn’t believe me. It’s just that it sounds too strange to be true, right? And now it’s been observed by all these people who have been trained.
So then on the 9th, she got those titers pulled, and again, some of them came back mounting a response and some did not, and so we’re working with her immunologist on that. Her diagnosis with the mast cell issue right now is chronic urticaria, and her allergist is desperately trying to capture a usable tryptase level, because he really suspects that it’s more MCAS, but the labs just aren’t there. It’s being treated symptomatically nonetheless, so to me, it really doesn’t matter what the title is, as long as she’s getting help. And her GI doctor has diagnosed her with autoimmune gastrointestinal dysmotility, and so she started steroids again on the 9th of January, and then a week later she received her first round of IVIG. So she’s doing IVIG every month for six months, we’ll gradually wean down the steroids, and we’ll see, we’ll see what we’re left with, you know?
It’s been a roller coaster, but it’s been an amazing story, and we are so profoundly grateful for the medical care we’ve gotten here at VCU, and at CHoR, and from the team that her doctor specifically picked to help Lily. I mean, in the last several years, it’s been so overwhelming for me as a mom to just be able to find compassionate, educated physicians who are willing to dig into it, and who were willing to believe me when I said, “No, this is not my child. You have to understand how different she is and how much she’s suffering.” And they believed me.
And I think that’s just such a powerful tool, to believe the parent. Of course, you want to hold that carefully, right, because there are parents out there that aren’t truthful. But I really think probably the majority of parents are as truthful as they’re able. Of course, you’re always colored by emotions when it’s your own child. But I just feel so safe now that Lily’s getting the care she needs in just such a profound manner.
Kevin Pho: Linda, when you first came across the Fernando story, what went through your mind?
Linda Bluestein: Reading what was going on with Lily, I just felt like other physicians needed to be aware of a couple of things. Number one, we should always be giving the patient and the parents the benefit of the doubt. Like Laura said, yes, there are people who are not truthful. That does happen sometimes. But until someone has proven not to be trustworthy, we should trust them. We should listen to them. We should believe them. We need to give them the benefit of the doubt. They deserve that.
And then I think the second big point that came across to me reading their story was that I wanted other physicians to be aware that we really have the power to make a difference, each and every one of us as physicians. We can change a person’s trajectory for the worse or for the better. If we don’t listen, if we don’t try to help them, then we can really cause them medical trauma. But if we keep an open mind, and we don’t have all the answers, not even close, but if we try, if we say, “Let’s try to connect you,” even if you just give someone a website or a little clue, you know. When people have these kinds of conditions, we’re trying to solve medical mysteries. And so even if you just try to give them the next clue that might help them formulate the next step, that’s doing something. That’s really making a difference.
Kevin Pho: And Lily, let me ask you, how are you feeling today?
Lily Fernando: I’m feeling pretty good today.
Kevin Pho: All right. And when you think back to all the medical professionals that you’ve seen, the doctors, the nurses, what are some of the things that they did that made you feel comfortable?
Lily Fernando: Well, at my very first appointment with Dr. Chelimsky, the very first thing she said was that she believed me, and that was probably the best moment of my whole illness.
Kevin Pho: All right. And then I’m going to ask everyone for some take-home messages for my clinician audience. So Laura, what are some of the take-home messages that you want clinicians listening to your story to come away with?
Laura Fernando: So I think I have three brief ones. One is that sometimes the thing that seems too strange to be true is really true, and I think it’s just holding that intention with all the information you’re getting from a patient. Sometimes the hoofbeats aren’t a horse, and they’re not even a zebra, right? Lily’s OT at one time said, “You’re not even a zebra. You’re a rainbow sparkle unicorn.” You know, yes, there are a lot of very common illnesses out there, but sometimes Occam’s razor doesn’t work. Sometimes it’s not the simplest answer.
I think, as a mother of a child with a chronic, serious illness, I would just stress compassion above all else, for the parent and the child, because it’s been so meaningful to me, the doctors who have just said, “Wow, your family’s been through a lot the last few years. I might not be able to help, but if I can’t, maybe I can give you a name,” right? That’s so meaningful. I don’t expect doctors to be gods. I do expect them to be good humans. And unfortunately, I think it’s a very difficult situation for everyone involved, and sometimes everyone, parents, doctors, and nurses, we all get slipped into fight or flight, and then it doesn’t go anywhere good.
And I think the most valuable quality I’ve appreciated in Lily’s physicians, above or beside compassion, is just the concept that there’s no dumb question. Her neurologist, her GI doctor, her allergist, all of them have spent a lot of time explaining things to me, because at the end of the day, I’m the one that’s taking her home and spending the day-to-day with her. I want to understand why things are working the way they are, or I want to understand, for example, what’s the difference between these chronic urticaria reactions, which are miserable for her but generally not life-threatening, and true anaphylaxis. So spend time with the parents. I think that’s difficult in the constraints of our current insurance medical system, and I understand that, but spend time with the parents educating them, so they’re not, for example, ending up at the ER when they don’t need to, with a simple set of data, right? If her oxygen is dropping, if her blood pressure is dropping, that’s a sign of anaphylaxis, right? So then you go to the ER. So I think those are my main takeaways.
Kevin Pho: And Linda, what are some of your take-home messages?
Linda Bluestein: So I treat people with MCAS, mast cell activation syndrome, POTS, and Ehlers-Danlos syndromes, and so often they’ve seen a litany of other physicians, and they’ve either been, you know, not validated, or they’ve been told, “Your labs are normal. Your imaging is normal. Therefore, there’s nothing wrong with you.” So I think one of the really important things I want people to be aware of is just the limitations of things like imaging and lab studies. Those are snapshots in time. Imaging is usually done with the patient supine. They’re not upright. It’s not dynamic, you know? So I think it’s important to just realize that just because someone’s labs and imaging come back normal, number one, that does not mean that they’re not suffering, and number two, it does not mean that they don’t have an actual diagnosis to explain their symptoms. We can’t capture everything that way. So listening to the history is absolutely essential, and doing a good physical exam, of course.
Kevin Pho: And Lily, we’re going to end with you. What message do you want to share with all the health care professionals who will be listening to you now?
Lily Fernando: Just, goodwill goes a really, really long way, and it makes it a lot safer.
Kevin Pho: All right. Well, thank you all for sharing your story, time, and insight, and thanks again for joining me on the show.
Laura Fernando: Thank you. Thank you for having us.
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