WEBVTT 1 00:00:04.719 --> 00:00:09.240 Hi, I'm your host, Doctor Lorie, and welcome to Universally Unique, 2 00:00:09.400 --> 00:00:13.800 Exploring the neurodiverse world of the extraordinary. This podcast foster's 3 00:00:13.880 --> 00:00:20.079 curiosity and understanding about neurodiversity while empowering individuals with tools 4 00:00:20.120 --> 00:00:24.800 for acceptance and inclusion in classrooms, the workplace, and communities. 5 00:00:25.160 --> 00:00:29.640 Featuring shared stories of neurodiverse life experiences, it sheds light 6 00:00:29.760 --> 00:00:34.240 on navigating a world not designed for diversity. Universally Unique 7 00:00:34.359 --> 00:00:43.840 starts now. Hi, this is doctor Lorie. Welcome to Universally Unique. 8 00:00:43.840 --> 00:00:48.479 My guest today is Jessica Papp. Jessica is the mom 9 00:00:48.759 --> 00:00:52.039 of a twelve year old named Juliana who was hoping 10 00:00:52.119 --> 00:00:55.240 to join us today but was not able to do so, 11 00:00:55.240 --> 00:00:57.880 so hopefully we'll get to talk to Juliana in the future. 12 00:00:58.640 --> 00:01:03.719 Before we get started, we're going to do three box breaths. 13 00:01:04.000 --> 00:01:07.359 I will count us through that. We're going to breathe 14 00:01:07.400 --> 00:01:10.680 in for four, hold for four, breathe out for four, 15 00:01:11.040 --> 00:01:16.319 hold for four, and start again. So we'll start with 16 00:01:17.319 --> 00:01:26.480 one breath breathe in two three four, hold two three four, 17 00:01:27.200 --> 00:01:38.280 breathe out two three four, hold two three four, breathe 18 00:01:38.319 --> 00:01:49.400 in two three four, hold two three four breathe out 19 00:01:50.359 --> 00:02:00.920 two three four, hold two three four, breathe in two 20 00:02:02.000 --> 00:02:13.520 three four, hold two three four, read out two three four, 21 00:02:14.400 --> 00:02:22.280 hold two three four, finished with a nice sigh. All right, 22 00:02:23.360 --> 00:02:26.919 always good to take a few a few breaths. So, Jess, 23 00:02:26.960 --> 00:02:32.000 thank you for joining us today. And I would like 24 00:02:32.159 --> 00:02:35.240 basically to start if you would tell us about the 25 00:02:35.360 --> 00:02:38.479 journey that that you and your family and Juliana have 26 00:02:38.639 --> 00:02:39.080 been on. 27 00:02:39.919 --> 00:02:40.800 Thank you for having me. 28 00:02:41.520 --> 00:02:41.919 Welcome. 29 00:02:43.439 --> 00:02:46.520 So my daughter is twelve now, but our journey with 30 00:02:47.599 --> 00:02:52.039 her kind of medical issues started when she was about 31 00:02:52.400 --> 00:02:56.960 three to four years old. Before that point, she was 32 00:02:57.080 --> 00:03:00.680 just a very typical, happy, bubbly three four year old, 33 00:03:01.759 --> 00:03:05.639 and we noticed a really like sudden acute onset of 34 00:03:06.000 --> 00:03:12.240 very severe OCD symptoms. And to see that in a 35 00:03:12.240 --> 00:03:16.080 four year old was very like jarring. So some of 36 00:03:16.080 --> 00:03:18.960 the things we saw were like excessive handwashing and just 37 00:03:19.080 --> 00:03:22.800 never felt clean. She would tap, she would tap out 38 00:03:23.000 --> 00:03:29.719 different patterns on her fingers and again, this little sweet girl, 39 00:03:29.800 --> 00:03:32.400 and she would just cry because she never felt like 40 00:03:32.560 --> 00:03:35.879 she was clean enough or doing things enough, or maybe 41 00:03:35.879 --> 00:03:39.120 there were bugs somewhere. So after about maybe three or 42 00:03:39.159 --> 00:03:44.199 four days of this, we brought her into the pediatrician, 43 00:03:44.919 --> 00:03:48.879 just her regular pediatrician. Before this point we had we 44 00:03:48.919 --> 00:03:51.400 really hadn't had any big health issues other than we 45 00:03:51.400 --> 00:03:54.520 had had a few like rashes, diaper rashes and things 46 00:03:54.560 --> 00:03:57.199 like that that were long term, but other than that, 47 00:03:57.240 --> 00:04:01.280 she had been very healthy. When we got in there, 48 00:04:02.120 --> 00:04:05.960 the doctor was concerned. She saw some of the symptoms 49 00:04:05.960 --> 00:04:10.240 we were talking about, and at that point she said, 50 00:04:10.360 --> 00:04:14.439 there's two options that she thought and one was a 51 00:04:14.439 --> 00:04:18.839 brain tumor, which would have been very troubling obviously, and 52 00:04:18.879 --> 00:04:22.959 she said the other thing is called pandas and pandas 53 00:04:23.519 --> 00:04:30.560 she immediately told me most doctors won't recognize this diagnosis yet. 54 00:04:31.519 --> 00:04:36.160 It's still pretty controversial, but basically she told me it 55 00:04:36.199 --> 00:04:40.839 has to do a strip, and so she at that 56 00:04:40.959 --> 00:04:43.480 point I asked her to do a strep test to 57 00:04:43.560 --> 00:04:47.079 see She said we could start there, and it immediately 58 00:04:47.160 --> 00:04:50.319 came back positive. So it was a relief right away 59 00:04:50.839 --> 00:04:55.040 in that it wasn't something like a brain tumor, and 60 00:04:55.079 --> 00:04:57.519 we had kind of hoped that as soon as that 61 00:04:57.560 --> 00:05:02.319 strip was treated it would go away. So for a 62 00:05:02.439 --> 00:05:05.160 standard strep case, typically the kids will have a sore 63 00:05:05.199 --> 00:05:08.040 throat and they'll go or maybe a fever they'll go 64 00:05:08.079 --> 00:05:12.519 to the doctor get five to seven days antibiotics. So 65 00:05:12.600 --> 00:05:17.680 they gave Juliana five days antibiotics and we saw like 66 00:05:17.720 --> 00:05:21.360 a sudden turnaround, like day two three amazing, and we 67 00:05:21.360 --> 00:05:27.439 were like thrilled. But after the antibiotics ran out, we 68 00:05:27.519 --> 00:05:33.279 saw this sudden uptick again in those OCD symptoms. So 69 00:05:33.319 --> 00:05:35.920 we went back and the doctors said, you know, we 70 00:05:36.079 --> 00:05:38.639 understand that this is frustrating, but there's nothing we can 71 00:05:38.680 --> 00:05:41.279 do because at that point they would swab and it 72 00:05:41.279 --> 00:05:44.360 would be negative because of the antibiotics. It had treated 73 00:05:44.399 --> 00:05:52.279 it enough. PANDAS stands for Pediatric autoimmune neurological disorder associated 74 00:05:52.319 --> 00:05:57.040 with STREP. And so I'll be honest, I don't love 75 00:05:57.079 --> 00:05:59.480 the name PANDAS because people think it's like this cutesy 76 00:05:59.560 --> 00:06:03.800 little thing, and if you say it, it even has 77 00:06:03.879 --> 00:06:08.000 a little bit of like a misunderstanding by people because 78 00:06:08.000 --> 00:06:12.959 it had been a controversial thing. So a couple people 79 00:06:13.000 --> 00:06:15.360 I know that their children have it, they just refer 80 00:06:15.439 --> 00:06:18.600 to it as autoimmune encephalitis, which is basically exactly what 81 00:06:18.639 --> 00:06:22.720 it is. So so you say PANDAS and people are like, oh, 82 00:06:22.839 --> 00:06:23.680 what's that you know? 83 00:06:24.240 --> 00:06:29.240 Yeah, yeah, it's like a fairy tale, Oh it's so cute. Yeah, lovely, No. 84 00:06:30.360 --> 00:06:33.879 And so we started this path where the doctor basically said, 85 00:06:33.920 --> 00:06:37.000 we can't do anything for you, so what do we 86 00:06:37.040 --> 00:06:39.360 do next? They said, you can head over to the 87 00:06:39.480 --> 00:06:43.160 children's hospital and go to the er and wait and 88 00:06:43.240 --> 00:06:45.759 see if you can find somebody to see you. And 89 00:06:45.800 --> 00:06:50.279 so we started. We started that path. First visitor where 90 00:06:50.279 --> 00:06:54.800 they really didn't go anywhere. They said she's testing negative. 91 00:06:54.839 --> 00:06:57.639 They didn't really obviously didn't know her, so they didn't 92 00:06:57.639 --> 00:07:02.079 notice any of the symptoms that much. So we said, okay, 93 00:07:02.120 --> 00:07:04.079 we went home. They said kind of like give her 94 00:07:04.120 --> 00:07:06.040 tile on all and wait it out and see how 95 00:07:06.079 --> 00:07:10.560 she feels right, and that didn't do anything. And the 96 00:07:10.600 --> 00:07:15.480 autoimmune side of Panda's basically the strip in her body 97 00:07:16.160 --> 00:07:19.480 wherever it is. It's hiding basically from her body, but 98 00:07:19.560 --> 00:07:22.439 her body thinks it's in her brain, so her whole 99 00:07:22.480 --> 00:07:27.800 body ramps up all of its immune fighting response and 100 00:07:27.839 --> 00:07:32.600 it goes up to her brain. So some people even say, 101 00:07:32.639 --> 00:07:34.720 like it's like a brain on fire thing where your 102 00:07:34.720 --> 00:07:38.279 brain is just being attacked, attacked, attacked, and obviously the 103 00:07:38.279 --> 00:07:43.319 strip's not there, so it's the immune systems not accomplishing anything. 104 00:07:43.920 --> 00:07:48.160 And so it's just swelling her brain, stressing her brain 105 00:07:50.920 --> 00:07:54.120 to the point of her we could even see her 106 00:07:54.120 --> 00:07:59.439 pupils would dilate so big that it was like jarring. Oh, 107 00:07:59.480 --> 00:08:02.560 it's rible. So you see again, this four year old, 108 00:08:02.600 --> 00:08:05.600 little sweet girl. We tried to let it go for 109 00:08:05.680 --> 00:08:08.240 a little bit, see if it got better. Her preschool 110 00:08:08.240 --> 00:08:10.639 teachers called home and said that she spent thirty minutes 111 00:08:10.720 --> 00:08:14.720 washing her hands and when it stop, which is just 112 00:08:14.720 --> 00:08:15.879 like absolutely heartbreaking. 113 00:08:16.560 --> 00:08:21.600 Yeah, at that age, you don't usually see that. I'm 114 00:08:21.639 --> 00:08:24.279 actually a little bit surprised that no one thought that 115 00:08:24.319 --> 00:08:26.160 maybe she had autism. 116 00:08:27.319 --> 00:08:31.199 You know, It's it's interesting because I think if it 117 00:08:31.199 --> 00:08:34.159 had been maybe even my son or some other kid, 118 00:08:34.200 --> 00:08:38.000 they might have gone down that path. But Juliana was 119 00:08:38.080 --> 00:08:45.639 exceptionally vocal, and she was very articulate and very emotional 120 00:08:45.840 --> 00:08:50.240 and happy and bubbly and loving. So they did kind 121 00:08:50.240 --> 00:08:52.879 of say, you know, this could possibly be some other 122 00:08:52.960 --> 00:08:58.120 things too, but with the really acute change in her, 123 00:09:00.360 --> 00:09:03.559 but then seeing that little bounce back with the antibiotics, 124 00:09:04.279 --> 00:09:06.759 we kind of we were pretty confident it was this. 125 00:09:07.240 --> 00:09:10.879 I had. I'm a teacher, so in my town where 126 00:09:10.919 --> 00:09:12.960 I teach, I knew there was a mom who had 127 00:09:13.240 --> 00:09:16.120 had a child with PANDAS, and I really didn't know 128 00:09:16.200 --> 00:09:18.600 much about it, but I remembered that he for him, 129 00:09:18.639 --> 00:09:22.879 it was he couldn't wear any clothes on his leg, 130 00:09:23.159 --> 00:09:24.960 one of his legs and feet and if he if 131 00:09:25.000 --> 00:09:28.840 anybody touched it at all, it was horrible pain. And 132 00:09:28.879 --> 00:09:32.960 so I called this mom and didn't know her that well, 133 00:09:33.000 --> 00:09:34.919 and she spent hours on the phone with me and 134 00:09:35.039 --> 00:09:38.440 was just lovely. And that's I think one of the 135 00:09:38.480 --> 00:09:42.960 takeaways from all this is to see the support I've 136 00:09:43.000 --> 00:09:45.840 had just with people around me, just for no reason 137 00:09:45.879 --> 00:09:48.360 other than to help me and help my kid so 138 00:09:48.399 --> 00:09:50.360 that I can go help other people and their kid 139 00:09:51.039 --> 00:09:54.279 has been really cool. Especially when you go to the 140 00:09:54.320 --> 00:09:56.639 doctors and you're hoping that they're going to help you 141 00:09:56.720 --> 00:09:58.000 right away and they just don't. 142 00:09:58.799 --> 00:10:04.039 Well, it sounds it's such an elusive situation, and there's 143 00:10:04.120 --> 00:10:07.240 not there's not there's not a blood test, there's not 144 00:10:07.519 --> 00:10:13.200 like some kind of scan that definitively just defines anything. 145 00:10:13.320 --> 00:10:16.000 It sounds like in a way, it's a process of elimination. 146 00:10:16.120 --> 00:10:19.240 Because she said the fact that when she had the 147 00:10:19.279 --> 00:10:22.120 antibiotics in her system and they were actually working it 148 00:10:22.200 --> 00:10:24.799 was like the light switch went down and turned the 149 00:10:24.840 --> 00:10:27.480 power off of all this stuff that was going on, 150 00:10:27.840 --> 00:10:30.399 and then as it wore off, it went back on. 151 00:10:30.559 --> 00:10:33.600 So there's like it's like putting together a puzzle. 152 00:10:33.919 --> 00:10:37.120 It is, it is, And I think now, so this 153 00:10:37.360 --> 00:10:41.600 was eight years ago, maybe, I think, so I've done 154 00:10:41.639 --> 00:10:47.720 some kind of they're doing like this very massive questionnaires 155 00:10:47.759 --> 00:10:51.159 and stuff for parents and especially parents with one child 156 00:10:51.200 --> 00:10:53.360 with it with panas and one without, and they ask 157 00:10:53.879 --> 00:10:56.519 a million questions even like what foods they ate and 158 00:10:56.559 --> 00:10:58.879 all this other to try to figure out things. So 159 00:10:58.919 --> 00:11:01.399 I think hopefully it's going to get better. And I 160 00:11:01.440 --> 00:11:08.320 know some doctors. Unfortunately, most doctors that will go down 161 00:11:08.360 --> 00:11:10.960 this path with you do not take insurance, so most 162 00:11:11.000 --> 00:11:14.320 of those doctors are out of pocket, probably because they 163 00:11:14.320 --> 00:11:18.840 can't officially do some of these things under their own 164 00:11:19.120 --> 00:11:23.320 whatever umbrellas. So but they'll do like a tighter to 165 00:11:23.399 --> 00:11:26.080 see how much strap has been in the body and 166 00:11:26.120 --> 00:11:28.360 if it's been in their long term. But a lot 167 00:11:28.360 --> 00:11:30.879 of people have strap too, so yeah, so there's no 168 00:11:31.159 --> 00:11:36.440 like one test some people say it's OCD, but at 169 00:11:36.519 --> 00:11:40.320 four that's pretty rare to see such a you know, 170 00:11:40.480 --> 00:11:44.120 significant amount of OCD symptoms and ticks. 171 00:11:44.399 --> 00:11:48.919 And those usually are woven in with other diagnoses that 172 00:11:49.039 --> 00:11:51.200 can be made more clearly. 173 00:11:52.559 --> 00:11:56.879 And so this was it was frustrating because we knew 174 00:11:56.879 --> 00:12:01.840 what it was. We knew we knew with the it's 175 00:12:01.960 --> 00:12:05.000 very difficult to get antibiotics period for anyone, and then 176 00:12:05.120 --> 00:12:08.360 for a child, especially if they've already tried it once, 177 00:12:08.480 --> 00:12:12.279 they're very hesitant to give more. I think we maybe 178 00:12:12.320 --> 00:12:14.679 ruined that in the eighties and nineties would just she. 179 00:12:14.679 --> 00:12:18.840 Would give you an antibiotic for like a little anything, 180 00:12:18.879 --> 00:12:20.000 and you've got an antibiotic. 181 00:12:20.639 --> 00:12:23.919 So we've kind of overcorrected now where doctors are like, Nope, 182 00:12:23.919 --> 00:12:26.440 we're not doing that until unless we know for certain 183 00:12:26.519 --> 00:12:30.519 we have a positive strap test. I'm like, okay. So 184 00:12:31.440 --> 00:12:34.279 after we waited and she was still struggling really bad, 185 00:12:36.039 --> 00:12:37.519 and it was just heart Like I said, Lauria, it 186 00:12:37.559 --> 00:12:40.759 was just heartbreaking. Yeah, we were just sick to sick 187 00:12:40.799 --> 00:12:44.279 to our stomachs. My son was a baby at this point, 188 00:12:44.840 --> 00:12:47.440 so a lot of people said, well, she's probably just 189 00:12:47.480 --> 00:12:51.279 acting out for attention and things, and we knew that 190 00:12:51.399 --> 00:12:54.919 wasn't it. But we brought her back to the children's 191 00:12:54.960 --> 00:12:57.440 hospital and we were like, we're not going to leave 192 00:12:57.440 --> 00:13:01.679 here without some answers. That day we had I had 193 00:13:01.759 --> 00:13:04.559 gone in to get her out of her crib and 194 00:13:04.960 --> 00:13:06.960 she wouldn't let me touch her. She wouldn't let anybody 195 00:13:07.000 --> 00:13:10.320 touch her, and she said, everybody's dirty, everybody's bugs on them. 196 00:13:10.440 --> 00:13:14.879 So it was like this very significant, like almost break 197 00:13:14.879 --> 00:13:17.159 and I couldn't get her to let me touch her. 198 00:13:17.200 --> 00:13:20.440 She's screaming, and I finally like got a blanket out 199 00:13:20.720 --> 00:13:22.639 and I said, can I hold you in the blanket? 200 00:13:22.639 --> 00:13:24.159 And she let me wrap her and that's how I 201 00:13:24.200 --> 00:13:29.120 got her into the car over to children's. So we 202 00:13:29.200 --> 00:13:31.879 call that like a flare for sure, Like sometimes it's 203 00:13:31.960 --> 00:13:36.799 way worse. Sometimes that'll drop an hour or two later, 204 00:13:36.879 --> 00:13:39.879 and it kind of the swelling might go down a bit. 205 00:13:40.240 --> 00:13:42.399 So by the time we were seeing she was doing better. 206 00:13:42.480 --> 00:13:47.919 She wasn't hysterical, but she was still stressed out and anxious. 207 00:13:49.039 --> 00:13:53.879 But they thought she was manipulative. They thought she was 208 00:13:53.919 --> 00:13:58.840 the one doing it. So she and again she was 209 00:13:58.879 --> 00:13:59.799 just this happy. 210 00:13:59.519 --> 00:14:03.279 Sweet Yeah, that's kind I have to say, that's kind 211 00:14:03.279 --> 00:14:05.960 of making me angry. Even though we're well past her 212 00:14:06.000 --> 00:14:09.200 being four, she's four years old. She didn't throw herself 213 00:14:09.240 --> 00:14:12.360 down in the aisle at the grocery store for cookies. Right, 214 00:14:12.600 --> 00:14:15.879 there's something different about somebody's going to Yeah. 215 00:14:15.919 --> 00:14:20.440 Their advice to me was so they said, you probably 216 00:14:20.480 --> 00:14:22.480 don't have a lot of experience with little kids, which 217 00:14:22.519 --> 00:14:24.879 at that point, I've been teaching kindergarten for fifteen years, 218 00:14:24.879 --> 00:14:28.480 which they didn't know. And they said, you know, sometimes 219 00:14:28.600 --> 00:14:31.639 kids will do this to get their way. And they 220 00:14:31.679 --> 00:14:33.320 gave me the number for like two to one one 221 00:14:33.519 --> 00:14:36.720 and said call and they'll help you find some parenting classes. 222 00:14:37.360 --> 00:14:38.000 And that was it. 223 00:14:38.159 --> 00:14:41.039 And that was all they did. And I was so 224 00:14:42.039 --> 00:14:44.720 disheartened and frustrated at this point. They gave her a 225 00:14:44.759 --> 00:14:46.919 teddy bear and we left Well. 226 00:14:46.960 --> 00:14:50.720 And this is the main children's hospital in the state 227 00:14:50.720 --> 00:14:54.120 of Connecticut. This is where, especially in the northern part 228 00:14:54.159 --> 00:14:57.000 of Connecticut, everyone goes when they have a kid who 229 00:14:57.080 --> 00:15:01.240 has any kind of like major illness situation. So there's 230 00:15:01.279 --> 00:15:04.679 other people who use it for more like routine stuff. 231 00:15:04.440 --> 00:15:07.919 If you don't live right near it, that's the spot 232 00:15:08.000 --> 00:15:09.159 people go to Well. 233 00:15:09.159 --> 00:15:10.600 And that's kind of what we were, like, we know, 234 00:15:10.639 --> 00:15:12.720 we weren't going to drive an hour here for no reason, 235 00:15:13.120 --> 00:15:16.960 you know, so and it was it was very difficult. 236 00:15:17.279 --> 00:15:20.799 I think, what in hindsight, I do appreciate our pedatrition 237 00:15:20.879 --> 00:15:23.960 at least recognizing it could be this thing. But it 238 00:15:24.039 --> 00:15:26.559 is disappointing. If they had just been able to then 239 00:15:26.600 --> 00:15:29.919 and there diagnose her with that or something, maybe we 240 00:15:29.960 --> 00:15:32.039 could have gotten helped faster. I mean, strep is a 241 00:15:32.159 --> 00:15:37.879 very tricky illness for thousands of years, scarlet fevers caused 242 00:15:37.879 --> 00:15:40.360 by strap. I mean, this is nothing new. I think 243 00:15:40.480 --> 00:15:45.639 just this one label for it is new. But basically 244 00:15:45.679 --> 00:15:48.519 her brain was just so swollen. So we went and 245 00:15:49.039 --> 00:15:52.000 we went down the naturopathic route for a while and 246 00:15:52.080 --> 00:15:55.759 things were okay, but because she was a naturopath, she 247 00:15:55.799 --> 00:15:58.080 didn't want to do antibiotics. I don't know, so we 248 00:15:58.240 --> 00:16:02.759 ended up again four year old five year old. At 249 00:16:02.799 --> 00:16:05.080 this point, she'd been sick for a couple of months. 250 00:16:05.399 --> 00:16:10.039 She's just very tired, miserable. Antibiotics had she had been 251 00:16:10.039 --> 00:16:12.799 on that off that, and so then they wanted her 252 00:16:12.879 --> 00:16:17.200 to do like fish oil and a and a CBD 253 00:16:17.360 --> 00:16:23.840 tincture and you know, probiotics twice a day and vitamins, 254 00:16:24.080 --> 00:16:25.879 and it was just too much. 255 00:16:26.080 --> 00:16:28.240 She was so sick when we get all that stuff 256 00:16:28.279 --> 00:16:32.159 into her and many of those things have a tendency 257 00:16:32.200 --> 00:16:34.320 to make your stomach a little bit upset. So if 258 00:16:34.320 --> 00:16:36.320 you can't get enough food in her to put those 259 00:16:36.320 --> 00:16:39.200 things into her, that's not going to help. 260 00:16:39.320 --> 00:16:41.879 Right, And she would just she's going to take it, 261 00:16:42.440 --> 00:16:44.960 right she I think she almost felt like she was 262 00:16:45.000 --> 00:16:47.039 being punished or something too. At that age, you don't 263 00:16:47.080 --> 00:16:49.039 understand why do I have to do all these things? 264 00:16:49.120 --> 00:16:53.120 You know, I don't want to. So I kind of 265 00:16:53.200 --> 00:16:55.879 joined some of those, like Facebook mom groups, and I 266 00:16:55.919 --> 00:16:58.360 also reached out to a few other friends had reached 267 00:16:58.360 --> 00:17:00.279 out to me to say, hey, I know some he's 268 00:17:00.320 --> 00:17:03.240 gone through this or went through this. So at that point, 269 00:17:03.279 --> 00:17:05.559 a woman named Susan I talked to her. Her son 270 00:17:06.839 --> 00:17:10.519 had been struggling with it for years and so she 271 00:17:10.519 --> 00:17:13.160 she hadn't even heard of what it was at the beginning. 272 00:17:13.640 --> 00:17:15.519 So at least with that with us, we knew right 273 00:17:15.559 --> 00:17:19.160 away it could be this pandace thing. She was really 274 00:17:19.160 --> 00:17:23.640 good about saying like, don't don't give up, keep pushing 275 00:17:24.359 --> 00:17:26.359 and in the meantime, here's what you can do. And 276 00:17:26.400 --> 00:17:30.240 so there was a few things that were would help us. 277 00:17:30.279 --> 00:17:33.119 So some sort of anti inflammatory like an I'm profen 278 00:17:33.319 --> 00:17:36.680 would help during these flares. It would take her brain 279 00:17:36.720 --> 00:17:41.440 swelling down a little bit, ice, chewing ice, as much 280 00:17:41.480 --> 00:17:45.640 ice on her palette as possible, like ice, ice cream, 281 00:17:46.480 --> 00:17:49.920 ice pops, any of that stuff, and just. 282 00:17:49.839 --> 00:17:51.960 A little easier to get a four year old ice 283 00:17:52.000 --> 00:17:53.759 pod just to take a fish. 284 00:17:53.559 --> 00:17:57.279 Oil, so I don't even want to take fish oil, 285 00:17:57.799 --> 00:18:01.799 you know, and so so ice and then also putting 286 00:18:01.839 --> 00:18:04.440 her in like a tepe or cool bath kind of 287 00:18:04.480 --> 00:18:08.000 would help sometimes reset. And it wasn't perfect, but it 288 00:18:08.000 --> 00:18:10.039 would at least get us to the point of like 289 00:18:10.079 --> 00:18:13.240 we could kind of reason with her. And she was 290 00:18:13.359 --> 00:18:16.240 very smart, so she understood something was wrong, but she 291 00:18:16.279 --> 00:18:20.759 didn't understand why. And so this went on for a 292 00:18:20.880 --> 00:18:24.839 very long time. It took us another six months or 293 00:18:24.839 --> 00:18:28.640 so to get in finally to see someone at Children's 294 00:18:28.640 --> 00:18:30.960 hospital who was a specialist in this, and we saw 295 00:18:31.039 --> 00:18:33.920 him once and he was wonderful and we left there 296 00:18:33.960 --> 00:18:38.319 feeling like it was a miracle. The best thing he 297 00:18:38.440 --> 00:18:43.200 prescribed was antibiotics with like four refills, which was to me, 298 00:18:44.200 --> 00:18:46.240 you know, someone who you know, my husband and I 299 00:18:46.279 --> 00:18:50.319 are both like rule followers and and everything, and at 300 00:18:50.359 --> 00:18:52.839 that point we were so desperate. I was like telling 301 00:18:52.839 --> 00:18:55.559 my brother to save his kids antibiotic if they don't 302 00:18:55.640 --> 00:18:58.240 use it, just in case, you know. And then we 303 00:18:58.359 --> 00:19:00.839 knew that wasn't right, but we also saw her suffering. 304 00:19:00.960 --> 00:19:03.839 So at this point, this doctor doing that was just wonderful. 305 00:19:04.880 --> 00:19:08.720 He told us to avoid yogurt, which was interesting. We 306 00:19:08.799 --> 00:19:12.039 had never thought of that. But one of the one 307 00:19:12.079 --> 00:19:16.440 of the strains in yogurt to make it yogurt is strap. 308 00:19:16.599 --> 00:19:19.559 It'll say s dot like and then a word. 309 00:19:19.519 --> 00:19:24.359 Oh yeah, I wonder if that's why though they in 310 00:19:24.440 --> 00:19:29.319 like typical situations, they tell you to eat yogurt when 311 00:19:29.319 --> 00:19:32.640 you're on antibiotics to stop used infections. But it obviously 312 00:19:32.680 --> 00:19:36.000 has the wrong effect on her right, so that wasn't 313 00:19:36.000 --> 00:19:38.000 her favorite food you. 314 00:19:37.960 --> 00:19:41.960 Want to buy. I never thought i'd have to punish 315 00:19:42.000 --> 00:19:44.680 my kid free and yogurt. She loves yogurt still to 316 00:19:44.759 --> 00:19:47.359 this day. She'll beg us, beg us and beg us, 317 00:19:47.359 --> 00:19:49.720 and so we'll let her have it once in a 318 00:19:49.720 --> 00:19:52.920 while and and but we would. It's funny because like 319 00:19:52.960 --> 00:19:55.200 at school, they would have it sometimes with the lune 320 00:19:55.279 --> 00:19:58.079 that you gogurt things. Or she'd go to my mother 321 00:19:58.119 --> 00:20:01.599 in law's or my mom's and she'd come home and 322 00:20:01.640 --> 00:20:06.599 be a mess like another, like a total like meltdown tantrum, 323 00:20:06.640 --> 00:20:08.319 and I'm like, how much yogurt did you have? 324 00:20:08.480 --> 00:20:08.680 You know? 325 00:20:08.759 --> 00:20:11.920 And we would realize like she'd eat four yogurts in 326 00:20:12.160 --> 00:20:14.519 you know, two days, and she'd be a mess again. 327 00:20:14.559 --> 00:20:16.559 So I'm like, oh no, so. 328 00:20:16.480 --> 00:20:19.400 She yeah, well, and you would have never known because 329 00:20:19.400 --> 00:20:21.000 that wouldn't have been a thing that you would have 330 00:20:21.400 --> 00:20:23.440 never you wouldn't have eliminated. 331 00:20:23.119 --> 00:20:26.880 Never in a million years. Something else they showed us, 332 00:20:26.920 --> 00:20:30.160 which I thought was super interesting and you'd be interested 333 00:20:30.200 --> 00:20:35.000 in this for sure. They have done now some studies 334 00:20:35.000 --> 00:20:38.000 with kids who are a little older, and they would 335 00:20:38.720 --> 00:20:40.599 have they take a kid who was like an art 336 00:20:40.640 --> 00:20:43.200 a good artist, and they had a beautiful picture drawn. 337 00:20:44.480 --> 00:20:47.039 I remember this girl drew like a wedding, like a bride, 338 00:20:47.279 --> 00:20:50.359 you know, this beautiful picture. And then during a flare 339 00:20:50.480 --> 00:20:54.319 they had her draw, and then after the flare and 340 00:20:54.400 --> 00:20:58.000 he after healing, they'd have her draw again. The first 341 00:20:58.000 --> 00:21:02.599 picture was beautiful, like very clear and you could see 342 00:21:02.680 --> 00:21:05.920 all the details. The one in the flare was almost 343 00:21:06.279 --> 00:21:09.480 just random shapes. It was siggles and random shapes. And 344 00:21:09.519 --> 00:21:12.960 this is about a ten year old. I believe the 345 00:21:13.000 --> 00:21:17.400 third drawing was way better than the one in the flare, 346 00:21:17.680 --> 00:21:20.440 but it wasn't nearly as good as that first one. 347 00:21:21.480 --> 00:21:25.000 And that kind of hit me that this is going 348 00:21:25.079 --> 00:21:29.960 to cause this could cause some major lasting effects. And 349 00:21:30.039 --> 00:21:33.960 I don't think people maybe think about that. They think 350 00:21:34.279 --> 00:21:37.799 strap antibiotics and you're done. But in this case, it's 351 00:21:37.839 --> 00:21:39.720 basically your body's just fighting you. 352 00:21:40.079 --> 00:21:44.640 So when you use the word encephalitis, I think even 353 00:21:44.720 --> 00:21:48.119 lay people recognized that that's something bad going on in 354 00:21:48.160 --> 00:21:54.680 your head. Yeah, they yeah, brain swelling is yeah. You know, 355 00:21:54.839 --> 00:21:58.759 even if you're not a medical professional, you would go, huh, 356 00:21:58.799 --> 00:21:59.519 that can't be good. 357 00:22:00.279 --> 00:22:02.359 It is night and day when you say that. When 358 00:22:02.400 --> 00:22:06.279 you start with my daughter as autoimmune encephalitis, you get 359 00:22:06.279 --> 00:22:12.559 a much different reaction than my daughter has PANDAS, and 360 00:22:12.680 --> 00:22:17.440 she gets treated very differently depending on what you say. 361 00:22:18.160 --> 00:22:22.119 And my best friend is a BCBA, so she's been 362 00:22:22.160 --> 00:22:25.960 working with student children for twenty years with needs. Her 363 00:22:26.039 --> 00:22:30.279 youngest actually ended up getting PANDAS too. She came to me, 364 00:22:30.720 --> 00:22:33.200 it was about five years later and she said, and 365 00:22:33.240 --> 00:22:36.119 this is my best friend for twenty years. She said, 366 00:22:36.119 --> 00:22:38.599 I'm sorry, She said, I thought you were losing your 367 00:22:38.640 --> 00:22:41.599 mind trying telling people to save their antibiotics. She said, 368 00:22:41.599 --> 00:22:44.759 I thought you've lost it completely. I get it now, 369 00:22:44.839 --> 00:22:47.319 like I get this feeling of helplessness. 370 00:22:48.319 --> 00:22:52.839 You can see how parents who have children too that 371 00:22:53.759 --> 00:22:56.400 we know what the treatment is and maybe for some 372 00:22:56.480 --> 00:22:59.000 reason the treatment isn't available. I just I read something 373 00:22:59.039 --> 00:23:02.160 that that long ago about parents of children who had 374 00:23:02.160 --> 00:23:05.359 cistic fibrosis going, I want to say, to South Africa 375 00:23:05.880 --> 00:23:11.079 because they had reverse engineered this fairly new medication that 376 00:23:11.240 --> 00:23:16.720 is incredibly expensive changing and life changing, but a lot 377 00:23:16.720 --> 00:23:18.720 of people can't afford it, and a lot of insurance 378 00:23:18.720 --> 00:23:21.119 companies won't pay for it. So people are like going 379 00:23:21.240 --> 00:23:25.920 to like foreign countries and buying things and we I mean, 380 00:23:25.920 --> 00:23:28.079 hopefully that's working out for them, but we know, like 381 00:23:28.240 --> 00:23:32.359 you know, people were buying medications from Canada and finding 382 00:23:32.359 --> 00:23:35.759 out that they were made out of cheat rock, you know, 383 00:23:36.440 --> 00:23:40.240 which is really quite frightening. I did do actually an 384 00:23:40.319 --> 00:23:44.960 episode probably maybe about four or five months ago with 385 00:23:45.160 --> 00:23:48.960 keras at Alino, who is someone who has a daughter 386 00:23:49.279 --> 00:23:53.440 with cistic fibrosis and her daughter actually has what was 387 00:23:53.799 --> 00:23:56.960 I guess that seems strange to say this the right 388 00:23:57.079 --> 00:23:59.880 kind of cystic fibrosis to gain access to this medical 389 00:24:00.400 --> 00:24:03.079 to this I believe it's the same medication. And I thought, 390 00:24:03.640 --> 00:24:07.920 you know, I mean parents, parents will do anything anything, 391 00:24:08.079 --> 00:24:09.200 their children. 392 00:24:09.119 --> 00:24:13.559 Anything, thousands of dollars of debt. And these mom groups 393 00:24:13.559 --> 00:24:16.119 were great on Facebook. But that was another kind of 394 00:24:16.160 --> 00:24:18.200 sad thing, as you'd see these parents who flew their 395 00:24:18.279 --> 00:24:21.279 kids all over the world and did these big you know, 396 00:24:21.359 --> 00:24:24.680 blood transfusions and all these tests and everything, and really 397 00:24:24.720 --> 00:24:26.240 what they needed was antibiotics. 398 00:24:26.359 --> 00:24:30.599 And yeah, and it's frightening to think too when people 399 00:24:30.799 --> 00:24:34.000 are you know, and I understand, I mean I don't 400 00:24:34.000 --> 00:24:36.039 personally understand, but I understand as well as I can 401 00:24:36.119 --> 00:24:38.720