1 00:00:00,000 --> 00:00:13,280 Hi everybody and welcome back to Airway First, the podcast from the Children's Airway First 2 00:00:13,280 --> 00:00:19,440 Foundation. I'm your host Rebecca Downing. My guest today is Katherine Anderson, researcher 3 00:00:19,440 --> 00:00:25,200 and Airways Stenosis advocate specializing in using the power of communities to drive insights. 4 00:00:25,200 --> 00:00:30,720 For the past 18 years, Katherine has also lived with an incredibly rare airway disease known as 5 00:00:30,720 --> 00:00:37,680 idiopathic subclotic stenosis. In 2009, Katherine set up the Facebook group Living with Idiopathic 6 00:00:37,680 --> 00:00:42,960 Subclotic Stenosis. The group has now become the world's largest support group for this condition. 7 00:00:43,680 --> 00:00:47,840 She speaks at conferences around the world, has written numerous articles and papers for 8 00:00:47,840 --> 00:00:53,120 international peer-reviewed laryngology journals, and has involved in helping doctors with medical 9 00:00:53,120 --> 00:00:58,880 studies and at helping patients with this disease. You can discover more about Katherine and her story 10 00:00:58,880 --> 00:01:04,800 at winthecatsaway.net and more about the condition of airway stenosis via the Facebook group Living 11 00:01:04,800 --> 00:01:11,280 with Idiopathic Subclotic Stenosis. And now here's my interview with Katherine Anderson. 12 00:01:11,280 --> 00:01:14,480 Thanks so much for joining us today Katherine. I really appreciate it. 13 00:01:15,280 --> 00:01:21,600 Yeah, thank you for inviting me. Absolutely. So today's discussion is a little different and I 14 00:01:21,600 --> 00:01:28,960 want to make sure we level set that especially with parents that listen to our show. The, 15 00:01:30,560 --> 00:01:34,560 I'm never really sure if I'm supposed to call this a disease or not, the condition that we're 16 00:01:34,560 --> 00:01:40,640 going to talk about specifically today. It is airway related. However, since it relates mostly 17 00:01:40,640 --> 00:01:46,640 to adults, however, there is kind of a correlation that we wanted to make sure that parents of younger 18 00:01:46,640 --> 00:01:53,840 children heard and especially, you know, those that are teenage and up. So the organization that you're 19 00:01:53,840 --> 00:02:00,640 with is Living with Idiopathic Subclotic Stenosis and it is a group on Facebook that anyone can 20 00:02:00,640 --> 00:02:06,080 find, correct? Yes, that's correct. Awesome. And I also want to make sure the listeners know just to 21 00:02:06,080 --> 00:02:12,000 be transparent. This one, this conversation may be a little emotional for me today because I am a 22 00:02:12,000 --> 00:02:18,160 member of this group. I have suffered from this disease since 2004 myself. So it's a 23 00:02:19,040 --> 00:02:24,960 little personal today. Yes. So let's go ahead and tell everybody a little bit about what is 24 00:02:24,960 --> 00:02:32,960 Idiopathic Subclotic Stenosis. Okay, so it sounds like a really fancy name. Really complicated, 25 00:02:32,960 --> 00:02:38,320 but when you break it down, it's not as fancy as it sounds. Idiopathic means we don't know what 26 00:02:38,320 --> 00:02:47,040 cause is this. Subclotic is just the area just beneath your vocal cords. So if you touch your 27 00:02:47,040 --> 00:02:53,680 neck and you feel it vibrate, just believe there will be your subclotic. So this is the location 28 00:02:53,680 --> 00:03:00,080 of the next word, stenosis, which means narrowing. And you may well hear stenosis in relation to 29 00:03:00,080 --> 00:03:05,200 hearts and spines and all sorts of places in your body where you can have stenosis. 30 00:03:05,200 --> 00:03:12,640 But this is a narrowing just below your vocal cords with no known cause. 31 00:03:13,840 --> 00:03:20,080 So, but there are several causes that it could be. So they often start with Idiopathic because 32 00:03:21,120 --> 00:03:26,160 investigations need to be done in order to find out a bit more information. So. 33 00:03:26,800 --> 00:03:31,520 Right. And I think that's what makes everyone in our group with this condition. So 34 00:03:31,520 --> 00:03:38,400 I don't know, unique, I guess, because you hear the stories over and over. We were all 35 00:03:39,600 --> 00:03:44,800 very healthy for the most part. We were athletes, we were active in our community, 36 00:03:44,800 --> 00:03:53,760 acted with our families, and then boom, we have an airway disorder. Exactly. It does seem to come. 37 00:03:53,760 --> 00:04:02,400 So for adults, it sort of appears generally 31, between 30 and 50, that's generally most 38 00:04:02,960 --> 00:04:08,400 patients and myself, I was 29. So it's at the lower end of that when I first had my symptoms. 39 00:04:10,560 --> 00:04:16,800 But yeah, that's kind of the age group for adults. And yeah, it's very hard. I mean, 40 00:04:16,800 --> 00:04:22,400 one way your airway can be damaged is if you've been intubated. And there's a bit of debates 41 00:04:22,400 --> 00:04:29,520 amongst doctors about how long it is before scout issue will turn up in your airway if you've been 42 00:04:29,520 --> 00:04:38,240 intubated. But generally, it's accepted that it's within two years of that operation. And 43 00:04:38,240 --> 00:04:47,760 it often will start growing quite slowly but build up over time. At the moment, there's almost a 44 00:04:47,760 --> 00:04:58,240 pandemic of this condition from airway intubation from COVID patients. Doctors around the world who 45 00:04:58,240 --> 00:05:04,320 are treating our disease are treating many, many more patients and they're people who've been 46 00:05:05,200 --> 00:05:11,440 in intensive care with COVID and been intubated during that period. And now the airway is damaged. 47 00:05:11,440 --> 00:05:17,680 And they're coming back later with this trouble with breathing. So yeah. 48 00:05:18,480 --> 00:05:26,080 And those that are not idiopathic that we can tie it to some kind of intubation. 49 00:05:27,520 --> 00:05:33,840 There's, does there's, pardon, I'm going from my perception here in the group. There's not 50 00:05:33,840 --> 00:05:42,080 seem to come back quite as frequently as ours does though, does it? No. So from intubation, often 51 00:05:42,080 --> 00:05:50,000 when, so the treatment for it is generally a surgery called a dilation and the doctor, 52 00:05:50,000 --> 00:05:55,600 that it will be done under general anesthetic, it's often quite a quick operation, you know, 53 00:05:55,600 --> 00:06:01,280 less than an hour. So the doctor anyway, patient obviously a lot more hangover. Right. 54 00:06:01,280 --> 00:06:07,440 But the doctor, yeah, the doctor might think it's half an hour actually. But 55 00:06:08,320 --> 00:06:12,480 if they do, especially if you're going to a centre that does a lot of these, it might be 20 56 00:06:12,480 --> 00:06:17,360 minutes in a doctor. They can cut them out and it's really easy for them. And they move on. 57 00:06:18,400 --> 00:06:24,480 Yeah, it's all done through the through the mouth. So endoscopically. So there's no cutting. 58 00:06:24,480 --> 00:06:30,800 Once they're down in the airway, they will maybe use a laser to cut the scar and open it up and 59 00:06:30,800 --> 00:06:37,600 then a balloon or sometimes just the balloon. So that's done. And the same surgery is done if 60 00:06:37,600 --> 00:06:45,040 the airway is damaged through intubation for those patients. But often it doesn't come back 61 00:06:45,040 --> 00:06:52,080 quite so frequently. So it might come back once a year for those patients. Then there's other 62 00:06:52,080 --> 00:06:58,880 patients which haven't been intubated ever. There's quite a few of those. And their airways often 63 00:06:59,600 --> 00:07:05,440 are closing up more frequently. So they will have a surgery feel fantastic. And within a few months, 64 00:07:06,560 --> 00:07:12,960 it's their back to square one again, and needing another surgery. And those are the mystery patients. 65 00:07:12,960 --> 00:07:22,800 There's there is these days now that all of those are somehow once you're having surgery, 66 00:07:23,920 --> 00:07:31,200 I guess, more than twice a year, then your airway is it's a some form of vasculitis, 67 00:07:31,200 --> 00:07:36,640 which is attacking your airway. But it's still a little bit, you're calling it the 68 00:07:36,640 --> 00:07:42,640 apopic because there's no tests to prove that. And there's no, you know, they can't just say, 69 00:07:43,280 --> 00:07:48,640 take a blood test and say, oh, yes, that's what you've got. Because nothing shows up in any of us. 70 00:07:49,680 --> 00:07:56,320 They can't find it yet anyway. So there's lots of investigations that that's that's a theory. It is 71 00:07:56,320 --> 00:08:05,280 related to vasculitis, which can be a nasty disease. Yeah. Yeah. And, you know, that's one of the 72 00:08:05,280 --> 00:08:12,160 things that I kind of wanted to lead into as far as what we're doing with children's airway is 73 00:08:13,200 --> 00:08:20,800 for the majority of us, I think we have had to be our own advocates with this disease. I remember 74 00:08:22,240 --> 00:08:30,080 back in 2003, I believe is when it started for me, you know, the process of going to doctors and 75 00:08:30,080 --> 00:08:35,120 talking to them and saying, listen, I've been an athlete my whole life. I'm very active person. 76 00:08:36,000 --> 00:08:41,120 I have a young infant that, you know, I chase after and do things with her. I guess she was a 77 00:08:41,120 --> 00:08:48,000 toddler by then. Never had allergies. Something's going on. And I kept saying, no, no, it's allergies. 78 00:08:48,000 --> 00:08:52,320 No, you don't understand. I don't have these kind of allergies. This could not be impacting me. I 79 00:08:52,320 --> 00:08:59,440 can't go up a flight of stairs without gasping for air. And I had to be my own advocate and push 80 00:08:59,440 --> 00:09:06,640 and push and push. And that's one of the things that we tell parents all the time, you know your 81 00:09:06,640 --> 00:09:15,280 child, you know, something's wrong. And some of the symptoms that we have, you do see in children, 82 00:09:15,280 --> 00:09:20,880 but you know, as you and I have, have chatted offline, children don't know how to identify them. 83 00:09:20,880 --> 00:09:25,200 You know, they don't understand that snoring, they first of all, they don't know they snore, 84 00:09:25,200 --> 00:09:30,400 but they don't understand that snoring is not normal. That it's not normal for a young child 85 00:09:30,400 --> 00:09:36,960 to weaves and gas as they go up the stairs or to have as we call it the Darth Vader breathing 86 00:09:36,960 --> 00:09:42,880 that we do, you know, that these things aren't normal. So I think advocacy is 87 00:09:44,400 --> 00:09:52,160 something that's very important. Don't you think? And don't take no for an answer. I mean, when you 88 00:09:52,160 --> 00:09:59,280 feel like your doctor is fobbing you off with something that's doesn't feel quite right. And 89 00:09:59,280 --> 00:10:04,400 and probably most of your life, you've been super healthy, maybe your child's been healthy. 90 00:10:05,280 --> 00:10:11,200 And you always trust your doctor. The doctor knows best, even they're an expert, they trained at this. 91 00:10:11,920 --> 00:10:18,960 But in the reality, once you get that gut feel that this isn't right, you have to keep pushing 92 00:10:18,960 --> 00:10:24,400 and push for a second opinion. It's certainly within your right to get second, third, fourth 93 00:10:24,400 --> 00:10:32,640 opinions. And, you know, do your research and read. I mean, everyone always tell you doctors 94 00:10:32,640 --> 00:10:39,200 always tell you don't keep off Google, don't read Google. Right. You know, sometimes it is the right 95 00:10:39,200 --> 00:10:44,480 thing to do to actually question what they're saying to you. And if you don't feel like it's 96 00:10:44,480 --> 00:10:49,680 right, I think you have to keep this doing another answer. I would agree. And I think groups like 97 00:10:49,680 --> 00:10:54,800 you know, the one that you've created on Facebook, these types of groups really help parents as far 98 00:10:54,800 --> 00:11:00,640 as you know, you've already done the due diligence, you know, the documentation is there, the research 99 00:11:00,640 --> 00:11:06,320 is there. There's a community that's built up. And I think that helps quite a bit, especially 100 00:11:06,320 --> 00:11:11,120 when you're dealing with the unknown, such as any kind of airway issue, because they're just so hard 101 00:11:11,120 --> 00:11:19,120 to pin down. Absolutely. And it's, it's, you just cannot explain how valuable it is to be able to 102 00:11:19,120 --> 00:11:23,920 talk to another person who's going through the same things you. So whether you're the patient 103 00:11:25,520 --> 00:11:31,680 that we have been or whether you're a parent with a child trying to understand is this normal 104 00:11:31,680 --> 00:11:38,240 for my child, should I expect this and who should I see. I mean, you can get an endless amount of 105 00:11:38,240 --> 00:11:45,600 just emotional support. And I know that lives have been saved just by having this group, you know, 106 00:11:45,600 --> 00:11:51,760 just through somebody will be holding off going to the hospital, because they don't want to bother 107 00:11:51,760 --> 00:11:57,840 them. And maybe I'm not as bad as I think. And other patients in the group will say, yes, just 108 00:11:57,840 --> 00:12:05,920 get there, get yourself there ASAP and, you know, giving them advice on what steps to take to try 109 00:12:05,920 --> 00:12:11,840 and protect themselves. Because also when you have an airway issue, the last thing you want is a 110 00:12:12,560 --> 00:12:19,760 over enthusiastic junior emergency doctor damaging your airway or putting a tracheostomy 111 00:12:19,760 --> 00:12:26,160 in and that's, again, I've been told by some of the world's top surgeons is one of the biggest 112 00:12:26,160 --> 00:12:33,600 problems they say weekends are horrendous for people just responding with the wrong treatment. 113 00:12:33,600 --> 00:12:39,200 And then they have to try and spend years sometimes undoing the damage from one night. 114 00:12:40,240 --> 00:12:44,560 And that's caused by doctors who are, you know, trying to do the right thing, but are not. 115 00:12:45,280 --> 00:12:50,000 Right, because they don't understand it, right. And I do think that's also one of the 116 00:12:51,840 --> 00:12:55,440 issues that we're finding that parents are running into when they're trying to deal with 117 00:12:55,440 --> 00:13:02,640 I guess, deal with another right word, find help for and, you know, support 118 00:13:04,000 --> 00:13:10,720 children with airway disorders. You know, it's a lack of knowledge. They just, 119 00:13:11,520 --> 00:13:16,640 the medical professionals weren't taught this. So it's an unknown so they don't know. 120 00:13:17,520 --> 00:13:24,640 You know, I know firsthand, I have my, my ID brace on, which is on at all times to warn somebody 121 00:13:24,640 --> 00:13:29,280 hi, you have to use this particular tube on me if I were to be intubated because you could kill them. 122 00:13:30,080 --> 00:13:35,760 Yes, exactly. And I have the same. Yeah, I just hope they would look at it. I look at what 123 00:13:35,760 --> 00:13:38,560 sure these medical programs know and say we're looking for a bracelet. 124 00:13:38,560 --> 00:13:39,440 Oh, no. 125 00:13:41,440 --> 00:13:46,240 Nightmare we all have. Please check the ID. Please look on the phone on the medical. Go check it out. 126 00:13:49,280 --> 00:13:52,480 And with regard specifically just to kind of give people a little more 127 00:13:52,480 --> 00:14:00,560 information about the idiopathic side of subclavic stenosis. I always get this, this figure wrong. 128 00:14:00,560 --> 00:14:03,600 Is it 93% women or is it higher? Is it 98? 129 00:14:03,600 --> 00:14:11,120 It's 98. Some doctors believe it's exclusively women, but there are men who are being diagnosed. 130 00:14:11,840 --> 00:14:18,720 And it could be that they're the ones, those men have the vasculitis and or it's, 131 00:14:18,720 --> 00:14:24,320 there's a disease. I can't even pronounce it, but the initials are GPA. It used to be called 132 00:14:24,320 --> 00:14:34,720 Wegener's brand new. Anyway, and a lot of doctors say, yeah, no, there's no, there are, there are no men. 133 00:14:34,720 --> 00:14:40,720 But I know for all the research that I've done that it's probably about 2% men. 134 00:14:41,280 --> 00:14:45,440 And whether they've slipped into the wrong group or not, who knows, it doesn't matter at the end of the day. 135 00:14:45,440 --> 00:14:51,040 They're still rolling with the same boat. Exactly. I don't, I don't mind that there's men 136 00:14:51,600 --> 00:14:56,880 popping up because maybe we all have vasculitis at the end of the day. We don't know. 137 00:14:57,520 --> 00:15:03,200 Right. We just, you know, we're called idiopathic at the moment. Exactly. Because no one knows what 138 00:15:03,200 --> 00:15:07,680 to do with us. So, and in the research, I mean, as, as they're trying to determine 139 00:15:09,520 --> 00:15:13,920 where this is, I mean, maybe one day we'll be able to not only identify it, but be able to say, 140 00:15:13,920 --> 00:15:19,520 okay, these are the signs to look forward in children. Yes, exactly. Or it could be a, you know, 141 00:15:19,520 --> 00:15:26,160 a little genetic test to say whether you've got something. I mean, I believe it, it kicks off with, 142 00:15:27,520 --> 00:15:32,800 I think it must be a perfect storm of things. We don't know what that perfect storm is, but 143 00:15:32,800 --> 00:15:35,760 maybe one, one of those things is a hormonal change. 144 00:15:35,760 --> 00:15:43,920 And your body having children. There's a lot of clues that that's involved. What else? I don't know. 145 00:15:43,920 --> 00:15:49,200 A lot of people seem to be triggered by stress or something really major. I mean, there's a huge 146 00:15:49,200 --> 00:15:55,920 proportion of people who first experienced their breathing difficulties around a divorce or a 147 00:15:56,640 --> 00:16:03,760 marriage or a major house move or a death in the family. But then 148 00:16:03,760 --> 00:16:08,160 that could be that it was already there. And they just noticed it because of that they're being a 149 00:16:08,160 --> 00:16:13,680 little bit tighter around the airway and more emotional. So you don't know, there's no, 150 00:16:13,680 --> 00:16:20,320 it's very hard to prove anything. For true. Really, most of the research is not focused on 151 00:16:20,960 --> 00:16:27,280 what it's caused by, but more about, let's try and treat it and make it go away. And that's, 152 00:16:27,280 --> 00:16:32,400 that's the primary focus at the moment, which is understandable. And I could, you know, one, 153 00:16:32,400 --> 00:16:38,080 I'm quite curious where it came from. I'd like also don't want it to come back. So, exactly. 154 00:16:38,080 --> 00:16:43,520 Right. Same boat. And I think another thing that, that we go through that, I think parents, 155 00:16:44,240 --> 00:16:48,960 it's something to keep in mind because kids don't really know or they don't know how to verbalize 156 00:16:48,960 --> 00:16:54,960 it, but environment can absolutely impact your breathing. If you have any sort of an airway 157 00:16:54,960 --> 00:17:02,000 issue, I know for me personally, that's why I had to leave the state of Texas because the air quality, 158 00:17:03,600 --> 00:17:08,160 between the air quality and the heat, I was one of those people that had just exacerbated 159 00:17:08,160 --> 00:17:16,240 and made things infinitely worse for me. So I had to get to where it was cooler and the air was, 160 00:17:16,240 --> 00:17:18,320 you know, had that natural moisture in it. And 161 00:17:18,320 --> 00:17:25,920 then is that something that to see a lot in the group that other people, you know, 162 00:17:25,920 --> 00:17:32,160 that that tends to impact airways as well? Absolutely. Yes. I mean, I know we have, 163 00:17:32,960 --> 00:17:39,440 in California and, you know, different parts of the world in Australia, they have huge fires over 164 00:17:39,440 --> 00:17:46,480 the last few years. And those patients who have been in the smoky air have really, really struggled. 165 00:17:46,480 --> 00:17:55,360 Right. And yet, you know, we have, I think in, you know, some patients live in an amazingly 166 00:17:55,360 --> 00:18:01,200 clean air. We have one person in the group who's in Yosemite National Park. And she's, 167 00:18:02,160 --> 00:18:07,840 her breathing is amazing. I mean, she's like super athlete, lives up on top of a mountain. So 168 00:18:08,720 --> 00:18:13,360 she really is, but she does still struggle, you know, she still has this disease, but 169 00:18:13,360 --> 00:18:20,880 she's incomparable to anybody else. So when she struggles, like, I think anybody else who had to 170 00:18:20,880 --> 00:18:25,680 her same peak flow levels would be going, well, I'm the superwoman. Right. 171 00:18:37,440 --> 00:18:41,120 You were listening to Airway First with today's guest, Catherine Anderson. 172 00:18:41,120 --> 00:18:46,480 You can find out more about the Children's Airway First Foundation and our mission to ensure that 173 00:18:46,480 --> 00:18:51,600 every child has access to screening, evaluation and treatment of all children's airway disorders 174 00:18:51,600 --> 00:18:58,160 before the age of six on our website at children'sairwayfirst.org. You can also find a ton of 175 00:18:58,160 --> 00:19:03,200 great resources for parents on our website, including videos, blogs, recommended books, 176 00:19:03,200 --> 00:19:07,520 comprehensive medical research, and more. And don't forget to check out our new Facebook 177 00:19:07,520 --> 00:19:13,040 support group for parents, the Airway Huddle. As a reminder, this podcast and the opinions 178 00:19:13,040 --> 00:19:18,400 expressed here are not a medical diagnosis. If you suspect your child might have an airway issue, 179 00:19:18,400 --> 00:19:25,440 contact your pediatric airway dentist or pediatrician. And now back to my conversation with Catherine Anderson. 180 00:19:25,440 --> 00:19:41,760 And well, and peak flow levels, that's something that I think parents with children with airway, 181 00:19:41,760 --> 00:19:46,320 that's something that most of them, maybe not even just them, most people don't really understand 182 00:19:46,320 --> 00:19:50,240 what that is. So let's talk a little bit about that. I know there's some information if people 183 00:19:50,240 --> 00:19:58,240 are looking for it on the Facebook group that you've got. What is peak flow? How do you measure it? 184 00:19:58,240 --> 00:20:04,560 Why is this important? Yeah, so traditionally, a peak flow meter has been used for asthma. 185 00:20:05,520 --> 00:20:12,000 So if, basically, it's a very simple little device with a sort of a little spring in it, 186 00:20:12,000 --> 00:20:16,960 little piece of plastic that you just put your mouth over the mouthpiece, 187 00:20:16,960 --> 00:20:24,400 and you blow as hard as you possibly can. And then you take a deep breath, you blow again, 188 00:20:24,960 --> 00:20:28,960 you do three good heart blows. I sometimes do one for luck, you know, because I can't 189 00:20:28,960 --> 00:20:35,840 don't like where the third spot is, but I don't intend to move any further. And you write down 190 00:20:35,840 --> 00:20:44,240 that number. And there is a well documented guidance on where people should be for their age 191 00:20:44,240 --> 00:20:50,240 and their height and their gender. So women and men's peak flow are very, very different. 192 00:20:50,880 --> 00:20:56,720 So never compare yourself with your husband. Yeah, he's never he's going to be way better, 193 00:20:56,720 --> 00:21:04,720 even if he's struggling to breathe, he will be way better. So, and don't compare against a much 194 00:21:04,720 --> 00:21:09,600 younger person or a much taller person, you know, it's, it's, there's all sorts of things. But 195 00:21:09,600 --> 00:21:17,360 really, it's a very simple guidance of how you sit compared to a normal person. If you had a 196 00:21:17,360 --> 00:21:23,600 normal airway and you were breathing normally, how bad are you? And if you crack it over time, 197 00:21:24,240 --> 00:21:33,600 you're able to plot trends. So if the breathing starts getting worse, you're able to sort of 198 00:21:33,600 --> 00:21:41,760 right recognize that. So there's some great apps, which are free. In the US, it's asthma MD, there's 199 00:21:41,760 --> 00:21:49,840 a an app there, which you can you put all the information in about age, gender, etc. And it 200 00:21:49,840 --> 00:21:57,120 plots a chart for you. So what expected levels are. And then you can buy, I think it's about 201 00:21:57,120 --> 00:22:05,760 $10 or something like that, same $10 and $20 for a peak flow meter. And buy them online or in 202 00:22:05,760 --> 00:22:12,080 pharmacy. And yeah, that's you just plot that number from that into the app, each, you know, 203 00:22:12,080 --> 00:22:17,920 I do buy them daily, but when a couple of times a week, if you can only do that, that's fine. 204 00:22:18,640 --> 00:22:22,720 And you'll gradually plot a little trend and be able to understand whether you're stable, 205 00:22:22,720 --> 00:22:29,200 or whether you're improving or generally, you know, in our season gradually going down. 206 00:22:29,920 --> 00:22:33,520 Yep. Yep. You're on the clock to see when you have to go back in. 207 00:22:34,080 --> 00:22:40,640 That's right. At least you can recognize trends and you can contact your doctor quickly with real 208 00:22:40,640 --> 00:22:48,080 information. I think often people fly off the handle just saying, Oh, I feel bad. And, you know, 209 00:22:48,080 --> 00:22:56,320 it's very hard for a doctor without having a number or how, yeah, how are you when you feel 210 00:22:56,320 --> 00:23:03,120 good? And how are you now? And what's the trend being? Because you could have a temporary drop. 211 00:23:04,000 --> 00:23:09,280 Maybe you have a cold, but it gets better and your peak flow gets better as well. So 212 00:23:10,640 --> 00:23:15,040 there's all sorts of things that will impact it. But if you follow it over a long time, 213 00:23:15,040 --> 00:23:18,880 you'll get to understand what's a real drop as opposed to a temporary drop. 214 00:23:19,680 --> 00:23:26,720 Right. Right. And you're much better than I am. I apologize to listeners now. I don't actually 215 00:23:26,720 --> 00:23:33,200 take my own advice. I don't do it every day just because I did the pressing. I do it twice or once 216 00:23:33,200 --> 00:23:40,800 a week so that I got four good numbers every month to show. Yeah. Yeah. Because that's a 217 00:23:40,800 --> 00:23:48,160 that's a personal psychological thing. But 100% agree because as parents, if you can do this with 218 00:23:48,160 --> 00:23:53,760 your child, that's great because you have something quantitative to take in to say, you know, 219 00:23:53,760 --> 00:24:00,080 something's going on or I see this mostly in the morning or certain things happen in the air or 220 00:24:00,080 --> 00:24:06,080 you can start to see these patterns like you mentioned, which is huge. That's huge. And I'll 221 00:24:06,080 --> 00:24:13,120 put links to all of that in the show notes for our guests. So one of the other things that I know 222 00:24:14,480 --> 00:24:20,960 people with airways struggle with specifically our group, but I know others too as well, 223 00:24:21,920 --> 00:24:27,600 phlegm and mucous. And you hear a lot of coughing. I mean, that's another 224 00:24:28,640 --> 00:24:34,400 another sign aside from snoring or some of the other things that we mentioned on our website 225 00:24:34,400 --> 00:24:43,200 are signs and symptoms, but this perpetual cough. Yes. And mucus. So that's yeah, that's that's 226 00:24:44,640 --> 00:24:49,360 it's an interesting one because it's it will be consistent and it will and generally 227 00:24:50,640 --> 00:24:59,920 in airway stenosis, it's because there is a an area within the within the neck, which is not normal. 228 00:24:59,920 --> 00:25:08,800 So stenosis is caused by start scar tissue, which is very unlike normal neck tissue, which 229 00:25:08,800 --> 00:25:14,320 interior of your neck will be have something called cilia. So a little bit like the inside of 230 00:25:14,320 --> 00:25:19,440 your cheeks. So if you put your tongue around your cheek, you can feel nice and smooth. That's 231 00:25:20,080 --> 00:25:25,360 pretty much exactly what your neck should be like. But when there's scar tissue blocking that, 232 00:25:25,360 --> 00:25:35,040 that's that's gone. And that stops the cilia moving the the mucous up and down nice and easily, 233 00:25:35,040 --> 00:25:41,440 like it should do. So the only way to get it past is the cough. The other thing that's going on is 234 00:25:41,440 --> 00:25:49,360 that whenever there is a narrowing of any sort of a normal so a tube that suddenly has a narrowing 235 00:25:49,360 --> 00:25:57,200 in the middle, the airflow through that narrow bench increases. And because it's going faster 236 00:25:57,200 --> 00:26:04,080 through that bit of your neck, the mucous is drying and becoming a bit more glue like and a bit 237 00:26:04,080 --> 00:26:10,160 stickier. And so that becomes harder to cough as well. So you really do have to kind of cough that 238 00:26:10,160 --> 00:26:16,400 out. And as a patient or a parent with a child, you might be noticing that they're coughing out 239 00:26:16,400 --> 00:26:22,400 sort of lumps of mucous every so often if they can get a really good cough. Or they're struggling, 240 00:26:22,400 --> 00:26:28,560 you can hear it almost growling in their neck. Yeah, it's still stuck. And that's why you need to use 241 00:26:28,560 --> 00:26:37,120 a nebulizer to help put more moisture into the neck and help loosen up that sticky mucous. 242 00:26:38,240 --> 00:26:44,560 It is pretty much magic when one good nebulizing treatment. It's amazing what it does. Exactly. 243 00:26:44,560 --> 00:26:51,360 But there's some other things that I've seen in conversation. And I don't know if 244 00:26:52,400 --> 00:26:58,080 because you work so closely with the thoracic society and some of these other groups, things that 245 00:26:59,760 --> 00:27:06,080 we can do to kind of help regulate the mucous aside from and coughing aside from the nebulizer. 246 00:27:07,280 --> 00:27:12,320 I've heard things about dairy brought up, you know, regulating dairy or any of these other 247 00:27:12,320 --> 00:27:16,160 things that we can do, we could try, you know, kind of its home remedies to help. 248 00:27:17,120 --> 00:27:22,160 You could. I mean, dairy doesn't work for everybody. Some people find it hard to 249 00:27:23,120 --> 00:27:28,400 not have it in their diet. And it doesn't always affect everybody the same way. So 250 00:27:29,120 --> 00:27:34,880 if you do recognize a pattern that you feel that you're getting more particularly sticky mucous 251 00:27:34,880 --> 00:27:39,200 around when you're eating dairy, then that's definitely advisable to cut back. But 252 00:27:39,200 --> 00:27:46,080 not everybody does notice that. So I wouldn't just cut it out of your diet if you're doing fine. 253 00:27:47,760 --> 00:27:54,160 There are particular things which are famous for helping the mucous. So things like pineapple juice. 254 00:27:55,040 --> 00:28:03,920 It's got brumelain in it. You can get tablets with brumelain, which they help to thin the mucous. 255 00:28:03,920 --> 00:28:12,640 So it's a so fresh pineapple juice and unsweetened. Should be sweet enough as it is. It will help. 256 00:28:13,520 --> 00:28:20,160 Yeah. But again, you know, it's like anything that trade off is it's you're getting a lot of a 257 00:28:20,160 --> 00:28:26,880 big hit of sugar and it's not very healthy for you. And so it's a bit of a, you know, 258 00:28:26,880 --> 00:28:31,680 it's a bit of a challenge. I think one of the best things you can do is remain hydrated and 259 00:28:31,680 --> 00:28:37,760 make sure you drink lots of water or herbal teas or sometimes just warm water with lemon in. 260 00:28:38,560 --> 00:28:45,920 Just all of that, just getting moisture or steam even, just a steam that can help as well, 261 00:28:45,920 --> 00:28:52,720 just breathing in warm steam. So all of those sorts of things are great ways of, you know, 262 00:28:52,720 --> 00:28:59,120 doing it at home without any fancy equipment. I know from personal experience, at least for me, 263 00:28:59,120 --> 00:29:04,960 another thing is soft drinks, which I'm sure that something parents have to contend with soft drink 264 00:29:04,960 --> 00:29:12,480 soda, I guess you would call it. I'm not sure what it is in that outside of the sugar, but 265 00:29:12,480 --> 00:29:18,960 there's something in there that I do see a consistent pattern. And I've tested this on both 266 00:29:18,960 --> 00:29:23,840 of my culture and when they've had allergies, you know, nobody gets the dark pepper for a 267 00:29:23,840 --> 00:29:29,680 couple of days. Let's just see what happens. And, you know, it does seem to help a little bit. So 268 00:29:30,880 --> 00:29:33,920 it is kind of a trial by fire, which I'm sure most parents are. 269 00:29:34,640 --> 00:29:39,120 Definitely. And I don't think, yeah, I don't think a huge amount of research has been done on that. 270 00:29:39,120 --> 00:29:45,120 You really just have to follow your gut feel and say, yeah, we know, well, we know that soft drinks 271 00:29:45,120 --> 00:29:51,360 aren't good, you know, even diet ones and everything. They're not going to go for you. 272 00:29:51,360 --> 00:29:56,560 They're an occasional treat as opposed to a everyday thing. And I think, 273 00:29:57,360 --> 00:30:02,000 and it's too easy as an adult to just get in habits of things, especially when they've got caffeine. 274 00:30:03,600 --> 00:30:11,600 It is. I know. So I mentioned earlier, you do work closely with the thoracic society and some of 275 00:30:11,600 --> 00:30:19,280 these other larger ANT groups throughout the world. What kinds of things are in the forefront 276 00:30:19,280 --> 00:30:23,200 right now or that are being talked about or that you can share? 277 00:30:24,960 --> 00:30:30,800 So, I mean, there's been some exciting things over the last few years in terms of a lot of 278 00:30:30,800 --> 00:30:35,120 research. We were still waiting for a lot of things to be published, which is, you know, 279 00:30:35,120 --> 00:30:38,560 just really looking at some of the treatments, because a lot of treatments, 280 00:30:40,080 --> 00:30:44,560 doctors in the ANT and thoracic field, when they're dealing with something rare, 281 00:30:44,560 --> 00:30:51,920 they do, the doctors do tend to be quite creative. As other fields, they tend to develop, you know, 282 00:30:51,920 --> 00:30:59,120 be very careful about developing exact protocols and everybody follows them. Whereas in this field, 283 00:31:00,080 --> 00:31:06,480 things sort of emerge and nobody sort of tends to test them. And one example is steroid injections. 284 00:31:07,360 --> 00:31:10,560 And a lot of patients started getting steroid injections into their neck. 285 00:31:10,560 --> 00:31:17,200 And doctors would, you know, chat to each other at conferences and say, oh, well, I'll take that up. 286 00:31:17,200 --> 00:31:24,720 And that's how they got to do it. And each doctor was doing a different amount and different 287 00:31:26,720 --> 00:31:34,000 frequencies, their patients, nobody was looking at side effects. And so there's a lot of research, 288 00:31:34,000 --> 00:31:40,080 you know, it was particularly over the last two years and this year to really, okay, let's try and 289 00:31:40,080 --> 00:31:44,480 nail some of these things down and really understand what this is doing. Is it actually a helping 290 00:31:44,480 --> 00:31:51,920 patients? And if so, then what are the trade offs? Because generally, there's a trade off somewhere 291 00:31:52,720 --> 00:31:59,680 with treatment is not very often that it's, it doesn't harm in any way. The doctors don't intend 292 00:31:59,680 --> 00:32:05,520 that. But it right, you know, especially when you're talking with steroids, that you can end up with 293 00:32:05,520 --> 00:32:11,600 all sorts of side effects, but you know, the good side is breathing better. So it's hard. So there's 294 00:32:11,600 --> 00:32:18,960 a lot of research in that type of thing. There's been some genetic research. Looking at, we've had 295 00:32:18,960 --> 00:32:26,160 certainly in our group, quite a few mothers and daughters and grandma has been grandmother daughters 296 00:32:26,160 --> 00:32:33,280 and grandchildren, you know, the whole families or twins who've all ended up with this airway disease. 297 00:32:33,280 --> 00:32:40,160 So there's been a bit of work with them to try and understand and pinpoint, okay, maybe there's a 298 00:32:40,160 --> 00:32:45,120 genetic link that all these people have. I haven't heard anything about the results and maybe there's 299 00:32:45,120 --> 00:32:51,440 nothing to see. It would be really sad, but you know, every time you're looking into that side 300 00:32:51,440 --> 00:32:58,960 of the thing, you hope. There's also quite a few sort of different drug trials going on. So there's 301 00:32:58,960 --> 00:33:06,560 been this one going at the moment. I can't tell you what the drug is because we don't want people 302 00:33:06,560 --> 00:33:13,360 to leave it out and go and buy it. But right, it's a double blind trial. So some patients are 303 00:33:13,360 --> 00:33:19,120 getting a placebo and some people are getting the treatments. And so that's got to go on for a 304 00:33:19,120 --> 00:33:23,280 couple of years to see whether there's any real difference between the two groups. So 305 00:33:23,280 --> 00:33:31,760 yeah, so there's quite a few exciting things going on. There's another doctor who I'm aware of, 306 00:33:32,320 --> 00:33:40,160 and he's kind of in the early stages with animal trials, I think with mice, but he's coming up with 307 00:33:41,600 --> 00:33:48,240 a new skin which could go into your airway to replace the scalp tissue and it would blend 308 00:33:48,240 --> 00:33:53,920 nicely with everything else and it would have the mucosa. Like a grafted. Which would be perfect. 309 00:33:53,920 --> 00:34:00,960 Yeah, it's very hard to achieve. And yes, but he's feeling very hopeful. So exciting. 310 00:34:01,760 --> 00:34:07,280 I mean, it really is exciting. There is some exciting things happening which could potentially 311 00:34:07,280 --> 00:34:12,320 have a really big difference to our lives. If you know, once they get to that stage, it's just 312 00:34:12,320 --> 00:34:19,680 medical research is not fast. Everybody wants quick results and every single paper that happens 313 00:34:20,640 --> 00:34:26,400 does take us to the next step and it's something that people can learn from and refer back to. 314 00:34:26,400 --> 00:34:32,560 Right, we build on it. And while as a patient, I want it to be fast, I also 315 00:34:33,280 --> 00:34:37,600 please take your time because I know we've tried some things like transplants, which people always 316 00:34:37,600 --> 00:34:42,960 ask me why you just get a trachea transplant. Well, because it doesn't work. They've tried, 317 00:34:42,960 --> 00:34:49,360 it doesn't work. So please take your time with the research and we'll wait. It's all good. 318 00:34:49,360 --> 00:34:55,520 Yeah. The other thing that people often talk about, these helpful friends that we have, 319 00:34:55,520 --> 00:35:01,200 who really want to fix it for us. They really do. Yeah, they say, oh, why don't they just put us, 320 00:35:01,200 --> 00:35:08,720 you know, I've just been your neck and that is horrendous. You know, it really doesn't work. 321 00:35:08,720 --> 00:35:16,080 It works on a temporary basis. So up to a month, I think, you know, with being watched very carefully, 322 00:35:16,080 --> 00:35:22,720 but not as a long-term solution. I've heard so many horrendous stories over the last 12 years. 323 00:35:23,600 --> 00:35:27,840 You know, infections being happened or the stem moves creates more scar tissue, 324 00:35:27,840 --> 00:35:36,080 damaging airways, creating more problems. And it's, yeah. So yeah, to be here, a doctor 325 00:35:36,080 --> 00:35:41,680 suggesting is then just saying no, I would like to send a opinion. Yeah, I was actually, I was in 326 00:35:41,680 --> 00:35:49,440 that, that, that latter group that you mentioned. You know, we did the first one and they actually 327 00:35:49,440 --> 00:35:52,800 attached it to my throat, which was interesting because every time I swallowed my throat would 328 00:35:52,800 --> 00:35:57,840 kind of collapse. You could see it and that kept getting clogged. So then they put in another one 329 00:35:57,840 --> 00:36:06,320 that had these little prongs on it and it decided to start sliding down my throat one morning. So 330 00:36:06,320 --> 00:36:14,000 yeah, the EMTs were called or the EMTs, the EMTs and, you know, rushed to the hospital to remove it. 331 00:36:14,000 --> 00:36:19,280 But like you said, it leaves damage. So it's a learning process. They were trying. So I agree. 332 00:36:19,280 --> 00:36:25,440 I'm in the no stent camp myself. Definitely. And yeah, every, every top doctor I spoke to 333 00:36:25,440 --> 00:36:32,320 said no, they block, they move, they create infection, they damage the rest of the airway 334 00:36:32,320 --> 00:36:38,000 and sometimes irreparably. And yes, it's, and the tissue can come. I've even heard somewhere they, 335 00:36:38,000 --> 00:36:42,800 they, it's supposed to stifle the tissue, right? Cause it goes right on top of it. The tissue has 336 00:36:42,800 --> 00:36:49,680 grown around it. Yes, exactly. So it's, it's not a good thing. It's not a good thing and definitely, 337 00:36:49,680 --> 00:36:54,320 you know, don't go down that route to that day. Yeah. Yeah. It's not worth, not worth the damage. 338 00:36:54,320 --> 00:37:02,640 Yeah. It's not worth the damage. So and on, on the website within the group, you do mention some other, 339 00:37:03,440 --> 00:37:06,560 which I'll make sure we have links to everything in the show notes, but 340 00:37:06,560 --> 00:37:13,200 there's an airway defects group that you mentioned that we'll put on here. And 341 00:37:14,880 --> 00:37:19,840 Children's Airway First does have a parent forum on the site. And this week we're launching the 342 00:37:19,840 --> 00:37:27,520 Facebook version of that group, the airway huddle. So we'll be something else that parents can 343 00:37:27,520 --> 00:37:33,920 reference. What other, you know, over, over the past 12 years, what are the resources have you 344 00:37:33,920 --> 00:37:38,960 found to be really good go to resources? You know, when you're trying to research signs and 345 00:37:38,960 --> 00:37:46,160 symptoms specifically around airway disorders or airway issues? I guess some of them, I mean, I'm 346 00:37:47,120 --> 00:37:53,360 a member of research gate and you can find that on Google. And that's a great way of 347 00:37:54,000 --> 00:37:59,680 finding papers. But often papers are very hard to understand for the average person they are. 348 00:37:59,680 --> 00:38:06,240 Yeah. I mean, some of them, I, you know, over time, I've learned a lot of medical language, 349 00:38:06,240 --> 00:38:10,960 but some of them I just, you know, I'm looking up every other word trying to work out what they're 350 00:38:10,960 --> 00:38:16,960 trying to say. And that's in the abstract, let alone the actual paper itself. So I mean, that's, 351 00:38:16,960 --> 00:38:24,160 that's a good stuff. If you have an academic mind and are willing to read things, that's a good area 352 00:38:24,160 --> 00:38:28,640 to look. I mean, in the resource that we provide on the group, which is called the rough guide, 353 00:38:28,640 --> 00:38:36,320 we've got a great bibliography of papers to look at in the back of that guide. So it's got a huge 354 00:38:36,320 --> 00:38:41,840 reading list of some of the things that we've referred to to create the guide and the guide 355 00:38:41,840 --> 00:38:48,720 itself has been rewritten into patient language just to make it easier. It doesn't look doesn't 356 00:38:48,720 --> 00:38:55,760 read like a medical paper, but it's all been approved by doctors who often give it to their 357 00:38:55,760 --> 00:39:02,240 trainees and their, you know, anybody in their team to say, this is what some prosyx stenosis is 358 00:39:02,240 --> 00:39:10,240 about or aero stenosis and the symptoms and the myths. And, you know, it's a great summary for 359 00:39:10,240 --> 00:39:15,440 anybody to learn about it really. So yeah, it's incredible help because all the medical terminology, 360 00:39:15,440 --> 00:39:20,160 especially when you're first finding out about any airway disorder, it's overwhelming. 361 00:39:20,160 --> 00:39:28,560 It's like learning a new language. It is. It really, really is. It is. So one of the things I do 362 00:39:29,280 --> 00:39:37,200 for all our guests at the end of every episode is just open up the floor to our expert guests. 363 00:39:39,040 --> 00:39:43,600 What kind of message or what would you like to say to parents to leave them with with regard to 364 00:39:43,600 --> 00:39:53,760 the state of airway disorders or having to come to terms with and find help for 365 00:39:55,200 --> 00:40:02,320 their child with an undiagnosed condition? I think do your research and try and find out 366 00:40:02,320 --> 00:40:11,040 who the best doctors are for children's airways. You know, there will be documents out there. If 367 00:40:11,040 --> 00:40:15,520 you're looking at papers, if you do know what's wrong with your child's airway, you've got a name 368 00:40:15,520 --> 00:40:22,160 for it, I would say go through those, go to research gate and find out who are writing the papers 369 00:40:22,800 --> 00:40:27,840 and what names are coming up in the author list. They might not be the first name, but 370 00:40:28,800 --> 00:40:34,720 you know, often the professors and the top people in the field will be maybe three or four names down 371 00:40:34,720 --> 00:40:40,400 on the on the document. But if you're seeing consistent name coming back in again, you think, 372 00:40:40,400 --> 00:40:47,760 well, okay, they seem to be an expert in this field. So collect information like that, do research 373 00:40:47,760 --> 00:40:56,640 on that doctor. If you have to travel and not go to your local doctors, you know, then do so if you 374 00:40:56,640 --> 00:41:02,800 can. I mean, it's hard. I know it's prohibitive, right? Cost sense, but if you're able to do that 375 00:41:02,800 --> 00:41:10,720 and find the best person, then you'll get rewards in terms of the health and the of the airway and 376 00:41:11,440 --> 00:41:17,760 being looked after and probably skipping a few steps. And be tenacious. Don't 377 00:41:18,800 --> 00:41:25,280 say, no, if you know something's wrong, trust your gut bill. There's a reason that, you know, it's there. 378 00:41:25,280 --> 00:41:33,760 It's dates back to our cave woman days. Yeah, exactly. It's there to tell you when things don't 379 00:41:33,760 --> 00:41:40,320 feel right or, you know, it's not to be believed. So if someone keeps turning you away and saying 380 00:41:40,320 --> 00:41:46,160 it's just a cold or it's a group or whatever, it's and you don't feel like it is, you feel like 381 00:41:46,160 --> 00:41:51,840 it's different and there's something different there, then keep chasing an answer. So don't just 382 00:41:51,840 --> 00:41:58,080 let it go. Yeah, I love that. And I would also just add to that, find a support group, you know, 383 00:41:58,080 --> 00:42:03,440 from personal experience, finding a support group that is dealing with the same thing you are. 384 00:42:04,880 --> 00:42:10,240 I can't even put into words the blessing that that is just the peace of mind that provides. 385 00:42:10,240 --> 00:42:18,960 And it really does open the doorway to knowledge. It certainly does. Yes. And it's a as a collective, 386 00:42:18,960 --> 00:42:24,640 you can move forward. I mean, my career has been in research, but not traditionally medical research, 387 00:42:24,640 --> 00:42:34,000 but the last 10, 12 years, I've been a part of 11 or 12 medical mappers, including two where I was 388 00:42:34,000 --> 00:42:41,440 supposed to offer. So, you know, my market research career, which is all about making banks and 389 00:42:41,440 --> 00:42:47,760 telcos, well, money has now been turned to good. And where it's about progressing knowledge in the 390 00:42:47,760 --> 00:42:55,120 in the airways, the nurses field. So, which is a good thing to be involved in and help me learn a 391 00:42:55,120 --> 00:43:02,080 lot and get to know some good people. And I for want to appreciate your dedication to it. So thank 392 00:43:02,080 --> 00:43:08,480 you for everything that you do. And I appreciate you being on our podcast today. Thank you so much. 393 00:43:08,480 --> 00:43:15,600 Yeah, thank you for inviting me. Thanks again to today's guest, Catherine Anderson for sharing her 394 00:43:15,600 --> 00:43:20,800 story and each of you for listening to today's episode. If you're new to our podcast, please 395 00:43:20,800 --> 00:43:25,520 don't forget to subscribe. And if you enjoyed today's episode, please remember to leave us a 396 00:43:25,520 --> 00:43:30,480 review or comment about what you enjoyed the most. You can stay connected to the Children's Airway 397 00:43:30,480 --> 00:43:36,240 First Foundation by following us on Instagram, Facebook, Twitter and LinkedIn. If you'd like to 398 00:43:36,240 --> 00:43:41,840 be a guest on an upcoming episode, shoot us a note via the contacts page on our website or send us 399 00:43:41,840 --> 00:43:48,640 an email directly at info at childrensairwayfirst.org. And finally, thanks to all the parents and 400 00:43:48,640 --> 00:43:52,880 medical professionals out there that are working hard to help make the lives of kids around the 401 00:43:52,880 --> 00:44:13,120 globe just a little bit better. Take care, stay safe and happy breathing, everyone.