WEBVTT - Case #33 Phoebe 0:00:03.360 --> 0:00:05.920 Ruby. 0:00:06.000 --> 0:00:10.000 She was not in her seatbelt, literally like contorting, and 0:00:10.039 --> 0:00:12.920 she just clearly you could not get comfortable. The pain 0:00:13.039 --> 0:00:16.680 was so severe, and I remember her thanking me for 0:00:16.840 --> 0:00:19.680 taking care of her, as if she thought she was 0:00:19.720 --> 0:00:20.400 gonna die. 0:00:20.520 --> 0:00:22.960 You know, at that age specifically, you see doctors as 0:00:23.000 --> 0:00:26.279 like literally your heroes. They're supposed to know everything, and 0:00:26.360 --> 0:00:28.560 so when people were like, oh, I don't know, that 0:00:28.800 --> 0:00:31.520 was like, Oh, what do you mean you don't know? 0:00:32.240 --> 0:00:35.080 I am ashamed that I did contribute to some of 0:00:35.120 --> 0:00:38.040 that skepticism when I first met them. 0:00:38.360 --> 0:00:41.440 I didn't fully understand at that point in my. 0:00:41.479 --> 0:00:44.919 Career how complex a brain and body can be. 0:00:45.360 --> 0:00:48.560 I promise you, like on everything I love, this is real. 0:00:49.560 --> 0:00:53.320 How terrifying would it be to fight an unknown enemy, 0:00:53.680 --> 0:00:57.360 one you didn't recognize and didn't see coming. What if 0:00:57.400 --> 0:01:00.600 that enemy was coming from within a disease that even 0:01:00.720 --> 0:01:04.880 doctors couldn't identify. Nearly half of Americans suffer from some 0:01:05.040 --> 0:01:09.840 chronic illness, and many struggle for an accurate diagnosis. These 0:01:10.040 --> 0:01:15.120 are their stories. I'm Lauren Bray Pacheco, and this is symptomatic. 0:01:20.600 --> 0:01:23.760 Sarah Marshall is without a doubt on the list for 0:01:23.920 --> 0:01:26.679 Mother of the year. Having come from a background in 0:01:26.720 --> 0:01:29.560 social work, she has taught her children the value of 0:01:29.600 --> 0:01:34.280 community and the importance of advocacy. She's smart, intuitive, and 0:01:34.520 --> 0:01:37.560 fierce in her defense of what's right. She is a 0:01:37.600 --> 0:01:40.319 mother to four daughters that span eight years. 0:01:41.000 --> 0:01:45.200 My girls are incredibly close. Growing up, they didn't fight 0:01:45.240 --> 0:01:48.280 all that much, but when they did, I would basically 0:01:48.280 --> 0:01:51.240 tell them that person is your sister and she will 0:01:51.240 --> 0:01:52.920 be your sister the rest of your life, and you 0:01:52.960 --> 0:01:56.000 can't treat her like that. I only remember saying that 0:01:56.280 --> 0:02:00.000 maybe once or twice, but they still talk about that message. 0:02:00.360 --> 0:02:02.360 It's really a special bond that they all have. 0:02:02.800 --> 0:02:05.360 The youngest of Sarah's daughters is Phoebe. 0:02:05.720 --> 0:02:09.120 My name is Phoebe Marshall and I'm seventeen years old. 0:02:10.120 --> 0:02:11.840 How do you spend your time when you're not in school? 0:02:12.400 --> 0:02:15.560 I work at an after school childcare program that takes 0:02:15.600 --> 0:02:16.359 up a lot of my time. 0:02:16.400 --> 0:02:17.400 I really like working. 0:02:17.880 --> 0:02:19.840 I'm a pretty average Shange girl. I hang up with 0:02:19.840 --> 0:02:25.320 my friends, go on food trips, homework, all the regular things. 0:02:25.440 --> 0:02:27.360 And I'm sure that being the baby of the bunch, 0:02:27.440 --> 0:02:31.840 Phoebe grew up with four mothers in the house indeed 0:02:32.280 --> 0:02:36.320 very much Influenced by the inspirational work that her mother does, 0:02:36.560 --> 0:02:39.400 Phoebe has already made the decision to follow in her 0:02:39.440 --> 0:02:41.040 footsteps professionally. 0:02:41.600 --> 0:02:44.320 I am going to study social work. I want to 0:02:44.840 --> 0:02:48.600 first be in the child welfare system with CPS, and 0:02:48.639 --> 0:02:50.760 then once I get married and have kids and need 0:02:50.800 --> 0:02:53.000 a more slow moving job, I'm going to be a 0:02:53.040 --> 0:02:54.079 school social worker. 0:02:55.480 --> 0:02:58.600 From an early age, Sarah noticed that Phoebe seemed to 0:02:58.600 --> 0:03:01.560 be getting sick, more freequent than the other girls had. 0:03:02.240 --> 0:03:04.840 This wasn't your first time in the rodeo. You had 0:03:04.960 --> 0:03:08.600 three children already. Was there a moment that you remember 0:03:08.720 --> 0:03:11.360 thinking something here is different. 0:03:11.919 --> 0:03:15.120 I remember the first time that Phoebe got sick. She 0:03:15.240 --> 0:03:18.600 was six months old and she had pneumonia. Have photos 0:03:18.639 --> 0:03:23.120 because it was Christmas, and I remember my family members saying. 0:03:23.280 --> 0:03:25.040 She looks really sick, Sarah. 0:03:25.160 --> 0:03:27.880 As it turned out, it was kind of the first 0:03:28.080 --> 0:03:32.079 in a series of her getting sick or having there 0:03:32.120 --> 0:03:35.920 be an issue, getting better and thinking, Okay, that was 0:03:36.000 --> 0:03:37.840 just a fluke, that's not going to happen again. 0:03:38.440 --> 0:03:42.320 As Phoebe grew, signs that something was wrong continued to 0:03:42.360 --> 0:03:42.880 pop up. 0:03:43.320 --> 0:03:46.520 The Next time she was really sick, she was about 0:03:46.560 --> 0:03:51.560 two and a half and she just was not getting better. 0:03:51.760 --> 0:03:53.640 I'd brought her in several times. They gave her an 0:03:53.680 --> 0:03:57.080 antibatic and maybe she was a little better, but not great. 0:03:57.120 --> 0:04:00.440 And then they did a steroid run and that still 0:04:00.440 --> 0:04:03.000 didn't get things better, and so I ended up bringing 0:04:03.000 --> 0:04:05.560 her into the er because she was having trouble breathing 0:04:05.600 --> 0:04:10.120 one night and they admitted her, which I was I 0:04:10.160 --> 0:04:14.240 remember being surprised about. They wanted to do a CT 0:04:14.600 --> 0:04:19.680 of her sinuses and I just thought that's ridiculous. She 0:04:19.760 --> 0:04:22.200 didn't really have a runny nose. It seemed more like 0:04:22.240 --> 0:04:25.680 a cough that was bothering her. And as it turned out, 0:04:26.000 --> 0:04:30.400 the doctor the eant that read the report from the radiologist, 0:04:30.480 --> 0:04:33.040 he said, this is the worst sinus infection he's ever 0:04:33.080 --> 0:04:36.159 seen in a two year old. She was put on 0:04:36.200 --> 0:04:38.760 an antibiotic that I later learned two year olds are 0:04:38.760 --> 0:04:41.280 not put on, but she was on it for eight weeks. 0:04:42.120 --> 0:04:45.880 Sarah brought Phoebe home, hoping this antibiotic would fix things. 0:04:46.200 --> 0:04:50.960 But after eight weeks on potent antibiotics, new symptoms manifest. 0:04:51.600 --> 0:04:55.000 Phoebe begins to show signs of gas, true intestinal issues 0:04:55.040 --> 0:04:58.839 so severe that Sarah rushes her back to the hospital. 0:05:00.040 --> 0:05:01.200 They ended up admitting her. 0:05:01.440 --> 0:05:05.320 And what I realized in that hospitalization is that they 0:05:05.320 --> 0:05:10.119 didn't actually believe me. They were basically testing to see 0:05:10.160 --> 0:05:12.760 if I was lying, if I was making it up, 0:05:12.880 --> 0:05:14.000 if I was exaggerating. 0:05:14.760 --> 0:05:17.919 What did they think that it was Munchausen by proxy. 0:05:18.080 --> 0:05:21.520 Munchausen by proxy is a mental health condition in which 0:05:21.640 --> 0:05:26.040 a caregiver fabricates or induces illness in their dependent to 0:05:26.080 --> 0:05:29.960 gain attention or sympathy. The condition can also be known 0:05:30.080 --> 0:05:36.360 as factitious disorder imposed on another or FDIA. They never 0:05:36.480 --> 0:05:36.920 said that. 0:05:37.279 --> 0:05:40.479 I assume that's what they thought, because this doctor I 0:05:40.560 --> 0:05:44.000 remember him coming in and him just being he was 0:05:44.040 --> 0:05:47.160 just very doubtful of what I was saying. And then 0:05:47.160 --> 0:05:50.120 they confirmed, like, oh, yeah, she does have some of 0:05:50.160 --> 0:05:53.920 the gastritis from the antabatic and so they discontinued it. 0:05:54.720 --> 0:05:56.640 And I said, well, what are we going to do? 0:05:56.720 --> 0:05:59.120 What's the other option? And they didn't actually put her 0:05:59.160 --> 0:06:01.960 on anything more. And I said, but we were just 0:06:02.040 --> 0:06:04.279 here at the same hospital and they said, this is 0:06:04.320 --> 0:06:07.039 the worst infection they've ever seen, and we're just she's 0:06:07.080 --> 0:06:10.560 going off of it. They basically said, yes, they did 0:06:10.600 --> 0:06:12.640 not send her home with any antabatic. 0:06:13.360 --> 0:06:19.560 So how were the doctors explaining these early health struggles. 0:06:20.200 --> 0:06:21.640 They really weren't. 0:06:21.960 --> 0:06:24.000 We went and saw one of the doctors in this 0:06:24.120 --> 0:06:28.400 practice that I had seen, you know, years prior, and 0:06:29.120 --> 0:06:33.120 she was an immunologist and she did some pretty extensive 0:06:33.760 --> 0:06:37.080 immune system testing and she basically came to the conclusion 0:06:37.200 --> 0:06:39.800 that Phoebe's immune system was dysregulated. 0:06:39.920 --> 0:06:40.920 It was kind of. 0:06:40.920 --> 0:06:46.760 Hyperreactive, and she had some low immuno globulins, but nothing 0:06:46.880 --> 0:06:52.039 that fitted diagnosis that she could have regular treatment for. 0:06:52.560 --> 0:06:54.960 And so they put her on kind of a prophylactic 0:06:55.000 --> 0:06:58.920 antabatic that kept her from getting infections. She didn't really 0:06:58.960 --> 0:07:03.479 have a real specific diagnosis other than frequent infections, and 0:07:03.520 --> 0:07:07.039 she really, for the most part, infection wise, was pretty good. 0:07:08.360 --> 0:07:12.120 By around four years old, Phoebe began to recognize herself 0:07:12.200 --> 0:07:16.760 that something was definitely not quite right. When is the 0:07:16.920 --> 0:07:22.200 first time that you remember your earliest memories of dealing 0:07:22.280 --> 0:07:23.160 with health issues. 0:07:23.760 --> 0:07:27.960 My first memory of pain was my ankle pain. That 0:07:28.160 --> 0:07:30.760 was horrible. No one could tell me why that was happening, 0:07:31.720 --> 0:07:34.920 and it disrupted my sleep a lot. 0:07:35.120 --> 0:07:36.040 That was really bad. 0:07:36.320 --> 0:07:39.120 The ankle pain actually started around the time of her 0:07:39.280 --> 0:07:43.000 sinus infection, and that ankle pain was persistent really for years. 0:07:43.680 --> 0:07:45.520 What kind of pain are we talking about? Was it 0:07:45.640 --> 0:07:49.840 just a soreness, an ache. 0:07:49.360 --> 0:07:52.320 Just kind of like a dull pain, That's the best 0:07:52.360 --> 0:07:55.000 way I can explain it. And it got worse with 0:07:55.120 --> 0:07:58.440 like something over it. I could walk perfectly fine. It 0:07:58.480 --> 0:08:00.200 wasn't a problem with the bone. 0:08:00.560 --> 0:08:04.080 How did that impact you in terms of school and 0:08:04.120 --> 0:08:05.480 sports and things like that. 0:08:06.440 --> 0:08:10.040 Honestly, like I just kind of powered through as much 0:08:10.040 --> 0:08:12.840 as I could. No one could do anything. No medication helped. 0:08:13.480 --> 0:08:15.640 I mean, my pain talent was pretty high by the 0:08:15.760 --> 0:08:18.960 end of it, so it only really really disrupted my sleep. 0:08:19.000 --> 0:08:22.760 I remember that, barely five years old, Phoebe was already 0:08:22.840 --> 0:08:27.160 learning to live with chronic pain and discomfort. Next, her 0:08:27.280 --> 0:08:28.520 vision starts to fail. 0:08:28.880 --> 0:08:30.920 That was hard as a kindergartener with like an eye 0:08:30.920 --> 0:08:32.000 patch walking around. 0:08:32.280 --> 0:08:35.000 She was complaining of black spots in her field of vision, 0:08:36.200 --> 0:08:39.400 and I myself, like, sometimes see black spots if you 0:08:39.760 --> 0:08:42.839 stand up too fast, or you know, blood pressure kind 0:08:42.840 --> 0:08:45.280 of changes. But then the doctor looked in her eyes. 0:08:45.360 --> 0:08:48.040 He goes, you know, I think I see something, and 0:08:48.080 --> 0:08:50.480 I'm going to send you to a retinal specialist tomorrow, 0:08:51.320 --> 0:08:54.560 and then she was diagnosed with retinal vasculitis, where fluid 0:08:54.600 --> 0:08:56.640 was leaking out of the vessels in the back of 0:08:56.679 --> 0:08:59.360 her eye. They didn't know why it was happening. 0:08:59.720 --> 0:09:02.200 You know, at that age specifically, you see doctors as 0:09:02.240 --> 0:09:05.400 like literally your heroes. They're supposed to know everything. They 0:09:05.400 --> 0:09:08.520 are the smartest of the smartest. So when people were like, oh, 0:09:08.559 --> 0:09:11.240 I don't know, I was like, what do you mean 0:09:11.280 --> 0:09:14.200 you don't know? I became a parent very young that 0:09:14.480 --> 0:09:17.080 I was not a cookie cutter. 0:09:17.000 --> 0:09:21.080 Case in and out of doctor's offices, Juggling a growing 0:09:21.160 --> 0:09:26.479 list of strange and seemingly disconnected symptoms, Sarah was increasingly 0:09:26.520 --> 0:09:30.319 on edge, waiting for the next shoe to drop. She 0:09:30.400 --> 0:09:33.200 remembers the day it hit the floor vividly. 0:09:34.520 --> 0:09:36.920 It was a Saturday, it was in the fall, and 0:09:36.960 --> 0:09:39.600 it was a beautiful day. She had been playing outside 0:09:39.600 --> 0:09:42.640 with the neighbor kids. And I remember thinking that day 0:09:42.720 --> 0:09:46.240 that this was the first normal day she had had 0:09:46.240 --> 0:09:48.800 in a while. She really seemed to feel good, and 0:09:48.880 --> 0:09:51.240 I just remember relishing like what a good day it was. 0:09:51.960 --> 0:09:55.600 And then that night she said that her tummy hurt, 0:09:56.440 --> 0:09:59.760 and you know, six year old tummy, all the kind 0:09:59.800 --> 0:10:02.680 of normal mom things that you'd say, have you gone 0:10:02.720 --> 0:10:04.960 to the bathroom? Do you want me to rub your tummy? 0:10:05.559 --> 0:10:06.480 What a heating pad? 0:10:06.640 --> 0:10:06.960 Help? 0:10:07.760 --> 0:10:12.839 And very quickly her pain really ramped up. Within an hour, 0:10:13.080 --> 0:10:17.760 she was laying on my floor just screaming and crying. 0:10:18.480 --> 0:10:21.560 And in my mind, I'm like, we just got back 0:10:21.559 --> 0:10:24.960 from the hospital. We can't go back. But because I 0:10:24.960 --> 0:10:27.480 couldn't think of anything else to do, we went to 0:10:27.520 --> 0:10:32.000 the hospital. I drove her in the car and she 0:10:32.400 --> 0:10:37.239 was not in her seatbelt, literally like contorting and writhing 0:10:37.520 --> 0:10:41.000 and she just clearly you could not get comfortable. 0:10:41.480 --> 0:10:44.040 I was in so much pain, and I remember saying, 0:10:44.080 --> 0:10:45.400 I feel like I'm going to die. 0:10:46.080 --> 0:10:49.160 She thought she was going to die. She said, thank you, 0:10:49.240 --> 0:10:50.440 mom for taking care of me. 0:10:51.440 --> 0:10:55.600 And like, no six year old knows that vocap like 0:10:56.440 --> 0:10:58.760 I work with kids, No kid knows the concept of 0:10:58.840 --> 0:11:01.680 dying is not in there like Pisa, and it wasn't 0:11:01.679 --> 0:11:02.080 in mind. 0:11:02.320 --> 0:11:03.559 I remember my mom. 0:11:03.840 --> 0:11:05.800 She would like, keep stopping at red lights. I'm like, 0:11:05.840 --> 0:11:08.640 I don't know why we're stopping at red lights. 0:11:09.080 --> 0:11:12.520 I just tried to stay calm and I said, I'm 0:11:12.559 --> 0:11:14.880 going as fast as I can we'll get there soon. 0:11:15.679 --> 0:11:17.959 We walked in and she was screaming. 0:11:18.160 --> 0:11:19.840 I just kept screaming as a lot as I was 0:11:19.880 --> 0:11:20.320 in the car. 0:11:20.559 --> 0:11:22.760 I don't even know that they asked us our name, 0:11:22.840 --> 0:11:26.480 and we just went back and they immediately gave her 0:11:26.520 --> 0:11:29.520 fentanyl and then they gave her delauded and then try 0:11:29.559 --> 0:11:30.880 to figure out what was wrong. 0:11:31.760 --> 0:11:36.400 I know, as a mother, there is this exquisite hell 0:11:37.000 --> 0:11:41.320 of acting like everything's okay when you're afraid that it's not. 0:11:42.160 --> 0:11:47.560 Oh yeah, all the time, all the time, and you know, 0:11:47.720 --> 0:11:50.800 trying not to cry and lose it myself as my 0:11:51.280 --> 0:11:54.800 six year old is crying and screaming, trying to reassure 0:11:54.840 --> 0:11:57.880 her that she was going to be okay, when I 0:11:57.920 --> 0:12:01.079 had no idea if really she was going to be okay. 0:12:01.880 --> 0:12:04.959 And once you get in to see doctors, they run 0:12:05.000 --> 0:12:08.960 another set of tests. What did those tests show? 0:12:09.520 --> 0:12:09.679 Her? 0:12:09.720 --> 0:12:14.000 Liver enzymes were sky high, a normal range of somewhere 0:12:14.040 --> 0:12:17.560 around let's say thirty or forty. Hers were in the thousands. 0:12:18.559 --> 0:12:22.920 And they started asking me, has she had access to 0:12:22.960 --> 0:12:25.160 tailan all? Did she overdose and tilan all? 0:12:25.360 --> 0:12:25.560 You know? 0:12:25.640 --> 0:12:29.240 And so then I'm racking my brain. Did she I 0:12:29.280 --> 0:12:30.800 don't think she swallowed Thailand all. 0:12:31.480 --> 0:12:34.080 Did you get any conclusive answers that day? 0:12:35.160 --> 0:12:38.920 No, they did admit her because her liver enzymes were 0:12:38.960 --> 0:12:41.679 so high and her pain was so high. She stayed 0:12:41.720 --> 0:12:44.920 in the hospital maybe three days, and it resolved on 0:12:44.960 --> 0:12:48.200 its own. It left nearly as quickly as it came on, 0:12:48.760 --> 0:12:50.920 and people just kind of shrug like, we don't know 0:12:50.960 --> 0:12:51.480 what that was. 0:12:52.520 --> 0:12:55.600 Phoebe and Sarah lead the hospital after what feels like 0:12:55.640 --> 0:13:00.160 a near death experience with no clear direction or understand 0:13:00.360 --> 0:13:05.080 of what has happened. Again, a few months past and Phoebe, 0:13:05.360 --> 0:13:08.800 now seven years old, starts to indicate to Sarah that 0:13:08.880 --> 0:13:09.960 her stomach was hurting. 0:13:11.600 --> 0:13:16.440 It was unremitting, but it wasn't so severe that she was, 0:13:16.840 --> 0:13:19.199 you know, screaming, but she complained. 0:13:18.840 --> 0:13:19.560 About it daily. 0:13:20.280 --> 0:13:24.520 They did blood tests, they did an ultrasound CT scan, 0:13:25.280 --> 0:13:29.040 MRI hid to scand look at the gallbladder and everything 0:13:29.080 --> 0:13:33.160 was negative. But she really had this unremitting pain for 0:13:33.360 --> 0:13:37.160 it was about eight weeks and finally it was recommended 0:13:37.200 --> 0:13:39.440 to consult with a surgeon because they said, well, it 0:13:39.440 --> 0:13:45.600 could be this atypical appendicitis where laps come back normal. 0:13:45.760 --> 0:13:48.280 But once you go in there they see kind of 0:13:48.360 --> 0:13:49.560 an inflamed appendix. 0:13:50.280 --> 0:13:51.040 What did they find? 0:13:52.000 --> 0:13:54.400 They found that her appendix look great. They still took 0:13:54.440 --> 0:13:59.480 it out, but they found adhesions, so scar tissue that 0:14:00.080 --> 0:14:03.760 it was actually pretty extensive on the right side of 0:14:03.760 --> 0:14:07.640 her abdominal cavity, but in particular scar tissue that was 0:14:07.720 --> 0:14:11.880 connecting her secum, which is I believe a part of 0:14:11.920 --> 0:14:15.439 the large intestine to another part of the large intestine, 0:14:15.480 --> 0:14:19.080 and so it was pulling and her surgeon, I remember, 0:14:19.120 --> 0:14:21.560 he came out kind of looking perplexed. He's like, well, 0:14:22.240 --> 0:14:25.800 this is what I saw and weced them, meaning that 0:14:25.880 --> 0:14:29.760 they released that scar tissue, and he's like, I don't 0:14:29.800 --> 0:14:31.840 know why they were there. He said, it looks kind 0:14:31.840 --> 0:14:34.800 of inflammatory to me, but there's no reason that those 0:14:34.800 --> 0:14:38.480 should be happening, and we'll just see how she feels after. 0:14:38.600 --> 0:14:41.280 And she woke up and she had no more abdominal pain. 0:14:42.160 --> 0:14:44.800 It essentially cured. It cured her pain. 0:14:45.440 --> 0:14:49.160 But this cure did not last for long. Six months later, 0:14:49.240 --> 0:14:53.920 phoebe presented with the same pain again and doctors recommended 0:14:54.040 --> 0:14:59.400 another adhesion surgery. What were you thinking when the conversation 0:14:59.440 --> 0:15:01.520 about another operation came up? 0:15:01.960 --> 0:15:04.920 You know, I really hesitated do we go in again? 0:15:05.320 --> 0:15:09.560 Is this could this be again this issue? Because there 0:15:09.640 --> 0:15:12.200 was no test for these the scar tissue, you can't 0:15:12.200 --> 0:15:16.360 see it on any scan. And I'm like, what if 0:15:16.360 --> 0:15:19.320 her pain is there and there's nothing to see. 0:15:19.520 --> 0:15:23.960 So she goes back into surgery. What happened next? 0:15:24.400 --> 0:15:26.560 He came out and he said, well, they're there again, 0:15:26.600 --> 0:15:29.480 and they're in the exact same place where they had 0:15:29.480 --> 0:15:30.520 been six months earlier. 0:15:30.920 --> 0:15:34.120 That's based scar routine every seven months. I knew the 0:15:34.200 --> 0:15:36.440 pain every time. Like once I started feeling it, I 0:15:36.480 --> 0:15:39.680 was like Mom called the surgeon that like ruins my 0:15:39.760 --> 0:15:43.000 life and I remember thinking like, no one will ever understand. 0:15:44.120 --> 0:15:48.400 We'll be right back with Symptomatic a Medical Mystery Podcast. 0:15:56.600 --> 0:16:02.960 Now back to Symptomatic a Medical Mystery Podcast. Since she 0:16:03.080 --> 0:16:05.800 was a baby, Phoebe Marshall has been living with an 0:16:05.840 --> 0:16:09.600 expanding list of health issues. Infections that escalate to the 0:16:09.600 --> 0:16:16.240 point of hospitalization, inflammation, joint pain, even vision loss. Her mother, Sarah, 0:16:16.400 --> 0:16:19.760 has done the best she can while facing constant dismissal 0:16:19.800 --> 0:16:23.880 from the medical community. Now, a recurring surgery to remove 0:16:23.960 --> 0:16:27.960 adhesions in her abdomen, required twice a year, would become 0:16:28.160 --> 0:16:28.960 Phoebe's life. 0:16:29.800 --> 0:16:32.040 I mean, it was hard to get surgery every seven 0:16:32.080 --> 0:16:36.120 to eight months. I was carrying around medication in a 0:16:36.160 --> 0:16:39.160 back at a pit line. I'd always had stuff hanging 0:16:39.200 --> 0:16:41.240 for me. There's always a reminder. 0:16:41.800 --> 0:16:45.520 So what started as exploratory surgery became maintenance. 0:16:46.600 --> 0:16:51.200 Yeah, and maintenance for a condition that's not life threatening. 0:16:51.240 --> 0:16:56.800 She didn't really have a real specific diagnosis, so honestly, 0:16:57.680 --> 0:17:00.400 no one was particularly concerned about it because it doesn't 0:17:00.400 --> 0:17:04.679 threaten her life. Really, I was the only person that 0:17:04.920 --> 0:17:08.400 was interested in finding a way to never make them 0:17:08.440 --> 0:17:09.080 happen again. 0:17:11.880 --> 0:17:16.520 As a mom, how do you balance prioritizing finding answers 0:17:16.560 --> 0:17:20.800 and dealing with these symptoms as they keep calming with 0:17:21.520 --> 0:17:24.520 out letting it take over Phoebe's identity. 0:17:25.160 --> 0:17:29.000 I don't think I let on to many people how 0:17:29.080 --> 0:17:33.520 much I thought about what happens, when the next thing happens, 0:17:33.520 --> 0:17:36.800 what will the next thing be? And so I did 0:17:36.800 --> 0:17:41.240 a lot of nighttime scrolling of the Internet looking for symptoms, 0:17:41.359 --> 0:17:46.080 matching them to diagnoses, looking for people, for researchers, for 0:17:46.200 --> 0:17:49.879 doctors across the United States that might have answers that 0:17:50.000 --> 0:17:53.439 experts where we live didn't have. But I also think 0:17:54.520 --> 0:17:57.640 getting her involved in therapy early on was helpful. 0:17:59.160 --> 0:18:03.440 My name is doctor Jade Rafferty. I am a pediatric psychologist. 0:18:04.040 --> 0:18:06.800 The pediatric part means that I specialize in kids with 0:18:07.000 --> 0:18:08.080 medical conditions. 0:18:08.800 --> 0:18:12.960 Doctor Jade Rafferty is Phoebe's psychologist. Tell me a little 0:18:13.000 --> 0:18:15.840 bit about your first memory of meeting Phoebe. 0:18:16.040 --> 0:18:18.480 So I met her when I was working in pain clinic. 0:18:18.760 --> 0:18:22.280 She was eight, so I've known her for a long time, 0:18:22.720 --> 0:18:26.680 but I don't remember her as much as I remember Sarah. 0:18:26.920 --> 0:18:27.960 She kept sending. 0:18:27.680 --> 0:18:31.840 Messages and she kept attaching these articles that I got. 0:18:31.880 --> 0:18:35.040 To be honest, I had no idea what they meant. 0:18:35.119 --> 0:18:39.560 They were such complex scientific articles that I was like, yeah, 0:18:39.840 --> 0:18:40.760 I don't. 0:18:40.520 --> 0:18:41.320 Know what this means. 0:18:43.680 --> 0:18:46.360 And unfortunately, and I think it is important to share this, 0:18:46.520 --> 0:18:49.840 Like I am ashamed that I did contribute to some 0:18:49.920 --> 0:18:54.159 of that skepticism or had that skepticism when I first 0:18:54.600 --> 0:18:58.240 met them, you know, like what is really going on here? 0:18:58.400 --> 0:19:01.880 I didn't fully understand at that point in my career 0:19:02.560 --> 0:19:06.800 how complex a brain and body can be. And Phoebe 0:19:06.880 --> 0:19:09.600 at that time was a closed book. You could not 0:19:09.840 --> 0:19:12.399 get her to say a whole lot of anything. 0:19:13.000 --> 0:19:14.359 So I did. 0:19:14.280 --> 0:19:16.359 Spend a lot of time sitting there trying to ask 0:19:16.400 --> 0:19:17.119 her questions. 0:19:18.600 --> 0:19:20.080 Sarah remembers this too. 0:19:21.000 --> 0:19:23.399 She kind of saw Jade as this nosy person that 0:19:23.480 --> 0:19:26.360 was asking her all these personal questions, and I'm like, well, 0:19:26.359 --> 0:19:28.800 you know, you can tell her whatever you want to 0:19:28.840 --> 0:19:31.200 tell her, like that's what she's there for. And there 0:19:31.280 --> 0:19:33.600 was this light that went I'm like, oh, I didn't 0:19:33.640 --> 0:19:35.639 know I could like talk to her about things. 0:19:40.240 --> 0:19:43.679 What has been the most difficult part for you of 0:19:44.240 --> 0:19:50.480 growing up with these ever changing, evolving symptoms. I think 0:19:50.520 --> 0:19:51.440 a lot of people. 0:19:52.920 --> 0:19:58.040 Already struggle with trusting other people, but my medical stuff 0:19:58.680 --> 0:20:01.720 goes outside of the doctor. I have a really hard 0:20:01.760 --> 0:20:04.920 time trusting other people, like my friends. I don't open 0:20:05.000 --> 0:20:05.960 up to my friends a lot. 0:20:06.240 --> 0:20:06.920 They know I have. 0:20:06.920 --> 0:20:10.920 Medical stuff, they know I struggle, but I've been taught 0:20:10.960 --> 0:20:12.719 over and over that no one wants to hear it. 0:20:16.320 --> 0:20:20.200 I think also, my story is so complex, it's really hard. 0:20:20.240 --> 0:20:22.119 Even to this day, it's really hard to explain to 0:20:22.160 --> 0:20:25.000 my friends. I remember one time I was in the hospital. 0:20:25.960 --> 0:20:28.200 It was just after one of my surgeries. I get 0:20:28.240 --> 0:20:32.760 really weak after my surgeries, and I remember my neuralogist 0:20:32.840 --> 0:20:36.359 ended up coming in to do I'm gonna get it 0:20:36.359 --> 0:20:39.840 wrong and EMG something where like you poke the muscles 0:20:39.880 --> 0:20:42.399 and you see how tired they get. But he was like, 0:20:42.480 --> 0:20:45.680 let's just do one now after surgery to see and 0:20:45.720 --> 0:20:46.560 the EMG. 0:20:46.440 --> 0:20:47.119 Came back normal. 0:20:47.480 --> 0:20:51.480 There was nothing really shown there, and I don't think 0:20:51.520 --> 0:20:53.400 he was like, oh, that means they're faking it, but 0:20:53.480 --> 0:20:58.680 like the look of confusion on his face, like I 0:20:58.720 --> 0:21:02.120 wanted so badly just to tell them, like I promise 0:21:02.200 --> 0:21:04.280 you on everything I love, this is real. 0:21:04.920 --> 0:21:07.639 I know. Phoebe spoken about how she felt dismissed. 0:21:08.359 --> 0:21:11.520 Mm hmm, we all did we all? 0:21:11.560 --> 0:21:12.560 Did you know? 0:21:13.680 --> 0:21:18.720 It was very, very difficult, And I think I saw 0:21:18.760 --> 0:21:23.399 the doubt from doctors and like what I intuited was 0:21:24.400 --> 0:21:29.640 that they felt like this family needs help and they 0:21:29.680 --> 0:21:31.119 need some mental health support. 0:21:32.640 --> 0:21:35.960 Though Phoebe's physical symptoms went far beyond the boundaries of 0:21:36.000 --> 0:21:39.479 mental health and should not have been minimized, doctor Jade 0:21:39.600 --> 0:21:43.240 recognizes the emotional impact of what their family was going through. 0:21:43.640 --> 0:21:45.800 Well, it impacts the entire family system. 0:21:46.200 --> 0:21:48.879 We're not taught how to be parents, let alone parents 0:21:48.880 --> 0:21:50.480 of children with chronic illness. 0:21:51.280 --> 0:21:52.720 How do we help kids. 0:21:52.440 --> 0:21:56.720 Be independent even if we're having to give them IVS right, 0:21:56.880 --> 0:21:59.080 or how do we help kids go back to school 0:21:59.160 --> 0:22:02.520 even if they're a new system is compromised. For me, 0:22:02.600 --> 0:22:06.639 I see it all as health and I wish and 0:22:06.760 --> 0:22:10.439 dream that all kids could get mental health care. But 0:22:10.520 --> 0:22:13.639 then when you add on all of the levels of 0:22:13.720 --> 0:22:18.360 chronic illness, it impacts and changes how children and their 0:22:18.359 --> 0:22:22.120 families develop, and that I think is really a key 0:22:22.720 --> 0:22:24.760 component of some of the work that I do. 0:22:26.400 --> 0:22:30.240 Now ten years old, Phoebe has undergone an adhesion surgery 0:22:30.359 --> 0:22:32.880 every six to eight months for the last four years. 0:22:33.320 --> 0:22:37.440 These surgeries are invasive, painful, and leave her with extended 0:22:37.440 --> 0:22:41.400 post operative weakness, unable to roll over or even hold 0:22:41.480 --> 0:22:44.480