Welcome to the Epic Life podcast episode number 15. Today. We are going to tell you what pandas syndrome is and how it almost destroyed our family. We dive deep into the devastating details. We have never shared before and tell you how it started and what we're doing now stick around to hear if ebi still needs his tonsils taken out. Welcome everyone to another edition of the Epic Life podcast episode 15. Is it 15? I was gonna say what episode are we on? I know by the time we get to episode like 80 we're going to be like a 85 85 85. I think it's 85 think we can make it that far something like that. Yes, just so everybody knows really quickly. There's probably going to be some really funny bloopers at the end of the podcast. I don't think Any action, I hope that you put all except for that one. Don't put that one. And if that one is in there than you're welcome everybody, but don't put the 1 in there. Just put the other ones here so crazy. We're sitting here trying to figure out how to to like start our podcast. So we're like, okay. What are we at? What should we talk about first and we have all these funny things about our kids and all these different things, but we can we check her phone you go. Blank, he just goes like but then Jesus I just kept coming up with these really stupid things and night. It just proves that we've been married for way too long way too. That's how when you get that comfortable with each other that comfortable with each other. So, you're welcome at the end. We have all these topics that we have to Hash through but we're always trying to think of something else to rely quite segue into the episode and whatnot. But so funny I mean today, honestly. So, okay. So today it was a pretty good day. So for the listeners, it's like my it was like - 10 today. No, it was more than that. I know it was minus 17 when I woke up. Yeah into work is negative 18. Oh gosh, and then I had to walk I was outside for like 20 minutes by the time. Oh my God the office. My body was numb it hurt so cold it hurt. Yeah, it's pain her well, and actually there's when to to yeah, it was saying is like negative for yeah. Well, I woke up in the room here with Cosette. We woke up at like 7:00 and I woke up because I thought there was like are like a window open because it was so cold in here and usually it's not like usually it's cold in here but not like that called that cold like man. So I got it stairs and the house was only 54 degrees because a heater something's wrong with our furnace. It's not working probably pop. Yeah, so and so name is it is 54 degrees. He's 54 degrees. And so the all we have writing is like the fireplace. Yeah, and then the little space heater. No, seriously it is and but see here's what the boys did today though. They thought this would be really funny and I didn't know they were doing I did not just for the record. Tell them to do this or advocate for some to do this, but I came down from Cosette. I was putting close that down for nap and I downstairs And a be Shiloh as Iran Debbie were running outside onto the Snow Hill out the front door and back in Barefoot mind you doing snow challenges like the dudes too cold for that. They always a way too cold. They were running out there. Barefoot all the days to do that. They didn't wash I know I don't know why they thought it but they were like running up the hill. So we have this Snow Hill in the front of our houses play like three feet high and everyone that it might be more than that and they just they would like run down the There's and run up the Snow Hill and stay there as long as they could possibly handle and see who could do it the most which was like my second. What time was this? This was that like 12 o'clock p.m. It was cold and I was like you guys so cold you can't do like really get like frostbite on your feet, but then they'd run back in and run to the fireplace. Yeah warm up and then do it again and but they thought it was great. They're like one the channel fine. I don't I think they agreed that no one won. It was like a mutual we can't do it for a Longer than we could run out and run back. Yeah, there's search The Sting your feet. Yeah, really funny to see them try to challenge each other. Like that's so boys. That's so our boys. Yeah want to challenge. Let's challenge challenge. I love their little challenges you they're always doing really fun challenges are so cute. So, how was your day today Jason? Did you have any more good conversations with your office mate? I don't want to go there now if you guys listen to some of our other podcasts Jason has an office mate who likes to talk to him a lot and Jason's always like I'm brain-dead. I'm brain-dead. Well I have work to do. I'm just one of those people who when you it is hard because the work that I do is hard to break concentration. Yeah, because it takes you longer to get back into it. Hmm. So if you're interrupted, I think there's like a data points to say it takes like 15 minutes to get back on track. Yeah anytime you have an interruption takes you that long to get back on track something like that. I mean, obviously it varies depending on what it is. No, I've heard that and but what I'm doing is it requires a lot of just technical hmm analyzing and stuff. So and every time To get interrupted you like. Oh shoot and I don't have the gift of completely blocking out ignoring people. So some people they can literally just tuned you out. Got it be around our kids more. Well, no either with it is it's like it's I don't know something with my brain the way that it works is hmm, you know, you see and you here, it's like everything here it and I can't not yeah pick up something going on set besides. So I even wear headphones when this guy's still he's It's almost I Envision Jace when you tell me about this I Envision that your back turned to him and you're at your computer and he comes over and like lifts up. The ear thing is like hey, Jase. Hey, hey, he lifts up your earphones. Well, it looks like you're not responding. So yeah, then it's like they go over and get bigger. You're not busy. Are you I tell you my life story. So you're not really doing anything from there. That's how I always see it's like this comic in my head. It's so funny hilarious, but know it's funny because her Well finding that funny because you know, how when you you maybe you do that to somebody else. Yeah wrap them. Yeah, but then you see that you can see, you know, when tell that they're like, okay, I shouldn't bother you anymore. Yeah, he'll do that to me but not Vice Versa. Oh, oh, yeah. Yeah. Well, that's funny because some people just don't have that. They don't get it. They don't see it. Yeah, or maybe they do but they're just like whatever if they really didn't want to talk to me, they would just tell me know some people just all about stop. Stop. No, you should know you should get like a little sign and hang it on your back or on your head or just hang someone's like do not disturb. Ya know. It's like yeah, there's like there's another comic strip of the sign and then it's like just ignoring it or taking it down or you should you should have the no button on your desk. They come in and ask, you know, now I said no see buddy had those. Yes and no buttons we have yes, and yes in the know you had a high dose because they're getting yeah. The kids will sit there walk around all day and they'll be like ask me a question. Yeah, that's me a question. Yes. No. No I said no. Well, I like it when they when you ask him a question like no, it has to be a yes or a no. I know it has to be a yes or no answer. Okay, so funny. I love those. Mmm. So we should start talking about the topic because it could get a little Hefty or a little long. I'm not sure we've been so many mostly. Yeah, you're you know the most fat aside. Don't have a lot. Yeah II went through this heavily with Debbie. I mean when we were going through this stuff with Ebby Jason worked like sometimes 80 hours a week. It was crazy except for the time Hawaii. Yeah, except for the time in Hawaii. But I so today we're going to talk about Ebenezer's Panda syndrome and Jace you can pull that you want to tell them what it stands for. Well, it will tell you what it stands for will tell you everything it's but yeah, we're going to tell you about that so we get this question a lot about However, he's doing now and what exactly everything he went through we shared on our Vlogs a lot about his Panda syndrome in his journey, but there was a lot of details that just simply couldn't be shared details that I didn't want to share and details that especially as we're going through it it yeah, I only talked so much about it. It's different now because Abby's in remission and he's doing really well and so it's a lot easier to talk about obviously, but I feel longer form to yeah. It's You can't really do as well and you can't really do that on a flock and so there's a lot of I think missing pieces and a lot of assumptions that people have made whether good or bad just about the situation and kind of where we are now. So we're going to talk about that but Panda stands for and Jason has in front of him because it's long. It's pediatric autoimmune Neuropsychiatric disorder and its associated with streptococcal infection. Yes, and most of you probably know a structure streptococcus its Guess I think streptococcal something like that. The co-infection one of us is mr. Right strap and so strep. Basically you can get through strep throat or some people get strep and they never have strep throat. It's another just strap it can yeah, you could just be a host it can live in your gut but usually for kids it's a result of having strep throat. How do they get strep throat? And well anywhere strep throat is extremely extremely considering the winter winter. You put them in a shopping cart. Yeah, they touch something in a store the library or something. I mean, it's so contagious. You just get it you're going to get it anywhere. I mean, it doesn't it's just rapidly spread. So but the thing is if they get it and you don't immediately is that how it works that you don't immediately get get it taken care of ya. If you don't immediately get it taken care of it can the strep can move to the gut of the person even if you immediately take Care of it. There is a chance of it moving to the gut. It's more rare that way but the longer you have strep in your body the more likely it is that it's going to get into your gut and just mess you up. So Abby's case what happened because so he had to go to the emergency room. But yeah, we didn't know. Yeah, so I wanted to kind of start from the beginning with you guys and lead you through a series of events and then we'll kind of get to when we were in Hawaii than when he was diagnosed and so stick stick with it because Especially if you've wondered about his story this is going to answer a lot of questions for you. We'll just so you know, yeah, you're missing the bachelor. All right. I want to watch The Bachelor so bad, even though I watched it for the first time my gosh. Okay. I'm just gonna say real quick. I watch it for the first time last week and I'm totes loving it. Wait. Wait, wait, are you being absolutely serious? I think she's joking people. I'm being I think she's so interested now. Okay for real though. It actually was actually Kind of interesting to watch I'm not going to lie. I'm not in I don't typically like that was my fault everybody. So I don't typically like shows like that and I've never watched The Bachelor but not because it looks like only dumb it's kind of good. I just I like to make fun of them. I really like to sit there and be like, oh my gosh, they like each other because mostly strew scripted, right? Yeah, probably okay back on topic, but that was funny Bachelor. I'm so gonna watch it on like wow or something killing me. Well, maybe it's not on till 9:00. Oh, I I don't know. Okay. Okay. So here's a be story it started back when he was about 14 15 months old and he got he got really sick. And I remember the day exactly it was the day that we found out Shepherd was a boy. And I thought didn't you wake up feeling like you're like a horse or something on a lump on his. Yeah, right. That was the same day. That was same day. Okay, so well, so the night that he started to get sick. So we had this big like gender thing and I had went and got an ultrasound with Shepherd and met Jason for lunch and everything. We found out that he was a boy. This was the last time we lived in Montana and we were just had a really exciting day. We took pictures. I had dressed up the kids and I had dressed up ebi in this really cute little vintage white outfit. And as we were taking pictures, I noticed that he just suddenly felt like he had a fever and you know, he went from just like he was happy and playing to he had a fever and which was really quick. And so I you know, I was like, okay. Well that sucks. He's probably getting sick and we went to bed that night and all through the night. He had a high fever and he just sounded like he was breathing funny through the night. But you know, sometimes when kids are sick, they're congested and I didn't really think honestly tons of it and so the next morning Jason had already gone off to work and I woke up and he was making these gargling sounds and I looked over at him and his whole neck was this huge golf ball, I belong. I mean it was it was it was I was bigger is hey, they said it was like a navel orange because what the doctor described it as I totally freaked out like I'm not gonna lie. I Kind of almost lost my mind and I thought I got it did not look it didn't look good. Anyway, what shape or form do you follow our Instagram account? You've seen the picture of okay. I have I've posted a couple times and put it in some of our Vlogs and so I immediately got up and just took him to a walk-in clinic. I didn't want to take him to the emergency room because I know there's a lot of germs there and I didn't want to expose them to anything else unless the walk-in clinic thought he needed so we went there. Air and at at at when we were there, they tested him for strep throat and a bunch of other stuff and heat the strep throat came back positive for him. But I and I asked the doctor I said, okay, so if it's strep throat, we just put him on antibiotics and he'll be fine and the doctor said yeah, that should be that should do it. So I got the prescription came home and I had given him a dose of it and then I let him take a nap and I had laid him up on my bed. And so Abby at the time was a We're good sleeper and he always slept really well. But this day he had woke up after like 20 minutes and I had heard him on the baby Mars making some weird sounds so I went up there and he was like turning blue like his lips had already like lost color and I picked him up and I thought oh my gosh, like what the heck I didn't know what to do. So I just grabbed him and I ran to our neighbor's house. And I said I have to take him into the emergency room now. Can you please watch the kids and she was like, yeah, and then you called me and yeah I met you there. Yeah, I Almost like you have to meet us there. And so when I got to the emergency room, I was so scared the whole way. I am not going to lie. I did not Buckle him into his car seat. I was scared. He was going to like stop breathing while I was driving there. So I had him on the front seat with me not ashamed of it whatsoever because when you're like a mom who your kids could die in the backseat and you can't help them and they're turning blue. You have to have them right there next to you and you have to know what's going on. So all I could do was pray the Away there and nothing's gonna happen. Yeah, you know because it would it's better for me to keep him alive, you know next to me. Well, yeah and you couldn't just easily turn around I couldn't easily turn around he's not breathing or do something. I mean a mind you, you know, we were on 25-mile our roads not that it makes a difference in general. But so it was that far away. Um, anyways, I just I was terrified and so I got there and I took him in and I mean obviously they took one look at him and was like, oh my gosh, we're rushing. No, like they the the nurse at the front desk came out and took him from me and Debbie just started screaming because he was not the type of kid that was comfortable with other people. He only really loved being with me. He was very attached to me. He hadn't really been in the arms of other people up until then he even he was even with me. Yeah, not super for whatever reason. Yeah, not even Superman. - to me or any of the kids. Yeah, it was kind of like he was very very attached to these kind of what was sucked for a lot of us. Yeah as you'll hear later on. Yeah, he his symptoms got worse it like that that was even exasperated quite a bit totally. So well, they took and he was freaking out. Yeah, he was freaking out but he was kind of choking himself to because he was having a such a hard time breathing. Yeah, because that lump was it was taking yeah. I was taking over his throat and so So I you know when they took him from me, I it's kind of like one of those moments where you feel like like you knew it was bad, but then when they just like come and grab em from me like you really know K. It's really bad. So they took him from me and then another nurse came out because their doors are locked, right? You can't just walk back there and I had a daily unless you follow. No, they just like I was shocked like the lady just like came out and she was just like, oh my gosh, he needs help now because his lips were were not by well, I wouldn't say like bright blue, but they were Like gray, you know, he had no color. And anyways, another lady came out almost immediately was like, oh my gosh, come back here. And then the doctor said, okay, I'm gonna We're going to give him steroids working give him all this stuff. If it doesn't help within two minutes, I we might have to intubate him. I'm just letting you know are you okay with that that would and I was like do whatever you have to do. I mean, obviously, you know, but I was so scared and they gave him, you know, they got an iv in him and all the stuff like as quick as I could blink. It was so fast and they gave him steroids. So they give him steroids through the IV and then they gave they put him on a breathing machine. And she I didn't even see all this. Yeah and within a couple minutes, he was starting to breathe more normal and so they didn't have to do anything extreme, you know intubation or anything like that and then they let me hold them. So they let me climb up in the bed to calm him down because he was like still freaking he was far from okay. It makes me shake thinking about because I was just a horrible experience. And so I'm sitting up there with him, you know, and just like how's the breathing machine on him and everything and then of course the doctors like well You know has he been sick and I was like, no, he hasn't been sick. You never had. It was like he's never been sick before he had a fever last night. It was like one of the first fevers he's ever had. I have no clue then they were asking like, what is he to been exposed to who has he been around on what end at the time our truck was being maintenanced and fixed in another city, so I hadn't left the house and weeks. That's when we had that rat in our oh, yeah, and so which is that we just got it back though, right? No, we didn't have it. We still didn't have it back. Wait. How did you get there? Oh, no, you're right. We had just got it back. Yeah. No, you're right. I was like, how would I get there? No. No, that was Fourth of July that that happened. That was Fourth of July that it happened. And we it was gone for like a couple weeks, right? It was the first time I had left the house. Yeah taking him to the hospital is I guess what I should have said, but we hadn't had the truck for like two weeks. So we didn't. Yeah, so you didn't go anywhere. I hadn't gone anywhere and I told him. We just went out to the park that day. Yeah, do the video and pictures and stuff. Yeah. That was the only know we did those at our house. No, we did the remember the that you know, that was that was the thinking about a video announcement when I was pregnant with Abby now, we did it. Yeah, so you did the video that was different that is every time of time. Yeah, so but wasn't there a birthday party to the kids have that birthday party? No, the only thing I could link it to because the doctor was like, well, you need to tell me what he's been around and why? He was exposed to and he was even asking me like has anyone that, you know been out of the country out of the state. Oh jeez, and I was like not that I know of. I mean, I've only been in my neighborhood and our neighborhood kids all play together, you know, that's the only thing I think of is that our neighborhood kids all play together, they share bikes and I had them outside and they were all in their wiggle bike Summertime Summertime you kids the kids are sick, right like you're not, you know keeping your kids shelter. So they never get sick. And so anyways how some of those questions are just like, I don't know. I don't know. I mean, I have no clue. And anyway, she started to stabilize but he has white blood cell count was so high that the doctor had said to us his white blood cell count is so high. It's high like in a kid who has leukemia and I was like, oh my gosh, what the heck and so they ran a test and but he was negative for everything. He was negative for real thing and he was admitted to hospital for like three days that they tested everything but nothing he came back negative for everything except for he has his white blood cell count was so high and so in the end after everything they the doctor was like we can either Continue to test and see what the cause of this is and put him through more testing or you know, the antibiotics are working because they had him on high doses of antibiotics Through The Eyes by the time I got there. He was already kind of walking around. Yeah. He was yeah, so like and this was like six hours later. Yeah. Well, yeah, I mean I came I came there earlier, but maybe it was later. I don't know. I think it was like six hours later because you couldn't leave that was like, oh it was like you couldn't I mean regardless I mean he was pretty quickly. Mhm. He got back up on his feet and he was moving around and and once his blight white blood cell count was going back to normal and that was about the third day. That's when the doctor was like, you know, let's just send him home also his lump though. They had no idea. Yeah. Yeah. Yeah that way they said maybe something in the affection something we should stay with the lump is because well they don't they did so they did an ultrasound. On the lump to find out what it was and it was his lymph node, right that was swollen to that site, but they have no idea why it is they had no idea why it did that. He's getting infected in it or back that like something that was a weird thing that they've ever seen. Yeah, they had never seen that with strep. They said strep doesn't well, they were stinking there was two separate things. Yeah, that maybe weren't just coincidentally had strep. Yeah, but something else is going on, but the antibiotics helped both well between the steroid and antibody so well, that's why I the doctor was like you need to ask your neighbors if they've all been out of the country at some point because if that's the only exposure that your kids had he's negative for everything that we would test for like United States and that kind of stuff and and I did I ask the neighbors and no one had been anywhere that there was somebody that I know that one point I kind of they weren't sick or I can't remember I kind of felt like that was a whole other thing than right neighbors. Thought I was blaming them for Abby cygnus which was really sad. I don't know why they thought that I mean kids get sick. It's not their fault. Yeah, it was more of us like trying to track something down. Yeah, somebody got offended because we're just like literally like it's like hey, you know, does anybody know anything just so we can kind of close get some closure on this and then ya know for future. Yeah because you want to know well in the dark a potentially guy said for some reason find out yeah, so because we didn't know if in one year because he did say that if it Again, or if something comes up make sure you come back. Yeah, I would you send us home. He's like, let's just leave it at that and if he gets sick again in this happens will continue to test but after that he continued to get better. He never did get sick, but we brought him home and it was like we brought one child into the hospital and at we broad totally her child home up until this point in his life. He was a happy-go-lucky kid. He slept through the night. He ate well super easygoing super easygoing. I mean, he's the one that made me be like I could do another kid. He's so easy, but we brought him home after his sickness. Oh my gosh. He he started to not tolerate everything and we assume we assumed it was the hospital the yeah, you know them to the nurses taking him from you. Yeah. Our first assumption was that just like okay, he's has like yeah like Intermatic. Yeah, you know like a post-traumatic stress syndrome, but and that's what we are told. That's it. Yeah, that's what we were told but it was like, okay, this is Going a little too far now because he started having he started out first when we got home just having fits about weird random things, like maybe his toy would fall and he would go ballistic about it. Sorry, excuse me. How old was he at that he was he was like 16 17 months. Yeah, and it was just really weird. He had never done anything like that airport using. Yeah, but he stopped eating. Well, he would refuse to eat anything that was good for him. Which was strange because up to that point. He was like pretty much would eat anything and he stopped sleeping through the night which was so crazy because he was one of our kids that always has still under the net. He always moved around but he slept well he slept. Well. Yeah, but he's totally saw and he would wake up almost in a panic a lot of times he would wake up like catching his breath is really scary. Yeah, it was and so we didn't really know and as time went on over the course of the next Year his fits went from maybe it's a tantrum to wow. This is like crazy a totally not just a tantrum to this extreme aggression and he started because we moved to Washington State shortly after this happened and he started hitting his head on the floor. So he would get angry and his aggression first started where he would take out on himself and he started hitting his head on the floor on the walls and We actually got nervous that he was going to hurt himself like really hurt himself because he was making him self have bruises on his head and it's around that time. You were getting pretty pretty pregnant pretty pregnant. We are trying to prepare for that. Yeah, so we're like, okay we need that we need to get this because at that point he was the sleeping in his own bed early and he wasn't sleeping through the night. So we were like, okay we gotta came to try to sleep in his own bed because you're getting big and try and struggling and there's no way. That he would stay in his own bed. No and it was happy hour and he's having like panic attack. So that's what I was going to say. Is that night time? I mean he did this through the throughout the day. It wasn't like a he would have these attacks like once in a while. He was doing this maybe at a minimum of three times a day. I mean minimum. Yes, so he be a normal happy kid, but then out of nowhere, he would you said it would just be he would drop a toy or he just spill his milk or whatever one would say Something that he just completely yeah flip out he would go completely ballistic as far as aggression and anger. He could not control his mood or his emotions. So so because yeah because at that time it was starting to progressively get worse and worse worse and worse yet. But we were really starting to get productive pot preoccupied with having another child. Yeah, like if you veteran Shepherd came along. Yeah, that was when we really got kind of scared. Yeah with okay. We have a newborn Yeah, I was scared for Shepherd because Ebenezer was not gentle ever after I mean in his aggression was getting so bad. He would have times where you know, if you've ever had a kid or witnessed a kid have a night terror where they wake up in the middle of the night and they're not there. They're their eyes are closed and they're screaming and they're going ballistic that is how heavy was but wide awake and his eyes would be glazed over multiple multiple times. Times a day. It's almost like something took over in him because his eyes would be really fun hazy and you could tell it wasn't him and that little the episodes would leave just as quickly as they came and when they were gone, it was like you could tell he didn't like it. He knew that something was wrong, but he could didn't know what to do or that was especially true as he got older. Yeah, and he was able to express that. Yeah, and I especially when he was able to almost control it more. Yeah, so he was able to learn to in a sense, you know, especially when he was more upset. Yeah, and he had like.he was able to put himself in a corner hide. He freaked out he do this crazy thing, but then he learned him. He didn't run away have his time and then he come back and he was like apologetic. Yeah, and you can I say, oh my gosh, there's my Eddie. You can see him back normal in his eyes. It was such a weird flip and he says but it was scary. I mean our family lived in so Anxiety. Yeah, it was always walking on eggshells because everyone was scared of whatever you would do next week. I couldn't take him to grocery stores. We couldn't take him in public. I mean I had times where I would take him to the grocery store and he would say, you know, can I get this and you know, a lot of kids will like oh, I really want it and they kind of have a little fit whatever but he would go ballistic and he would pull I like one specific time. He asked for some cake or something that was on the shelf and I had said not Not today, and he just ballistically started pulling all of the bread off the shelves and it's not. and I say this with with all my heart that if you haven't had a kid do this you really won't understand because there's bystanders right there looking like why isn't that Mom just discipline her kid because it appears that you have this child that is acting out and this is so heavily weighted when I say don't just judge a mom by what you see because you really don't know what's going on and I was right there in the middle of it and with ebi his Because of what was going on with his brain. The more that I would try to help him the more he would reject it and get angry. So worse if I well he's having this episode. He's pulling all this bread off the shelf if I go to him and say, it's okay Abby were just we need we can't do this. It would make it escalate so much were so you literally have to wait for this to end and it's just horrifying so I never wanted to take him in public and I meant to say the very beginning of when we started. That what pandas does is it changes your brain? So the strep is in your gut and it crosses the blood-brain barrier. Once it does that it starts to create these antibodies in your brain. And once your brain starts creating these antibodies it never stops your brain thinks it needs these but these antibodies that it creates attacks the brain cells of your own brain and so it affects mood it can affect like a Kids get OCD and they get tix and they get anxiety and they have aggression and they they are not doing it. They cannot control it. It's because these antibodies are literally attacking your own their own brain and they can't control this and so there's different flare up sometimes some days are better and some days are worse and we and we saw pretty much all of those SUVs. So like some of the first ones we were like, you know the OCD thing. Oh, yeah. It really see his end. And I remember you telling me this quite a few times to where he would have to he would do something with like very his toys or he would like you're trying to you growing out in public you're trying to do something and then he has to do these systemic Yang's with his toys. Oh, yeah, and if you try to stop interrupt, he would go ballistic. Well, if he didn't go ballistic, he would really like start to have that Panic he would like the true like OCD like not the not the like I have to get the house. And otherwise, I just mecan't I'll have a bad day. It was what he could it was. Okay. So yes, yeah a true like to the definition of OCD and it was it was that was another bizarre like started out that way with his toys and I started noticing it with his toys, but then I started noticing then you start adding the because it because again it was like he was at that terrible to stage of like kids where they just have their normal Tantrums. Yeah, but it was nice were a step up is LCD was like, okay. This is kind of weird for a little. Child and then hit the Tantrums were going a little bit more. Well, and I had doctors I mean even even our Midwife because she you know pandas is not a widely recognized disease and and because of that law doctors don't know what it is. So he had seen several different doctors and some doctors even are even our favorite doctor in the world had said, I'm pretty sure he he I think he has autism ADHD. I mean you might need to go get him tested. But I knew in my heart like he doesn't he doesn't have ADHD and autism because I had done a lot of research on those and ADHD and autism do not just suddenly occur in a completely healthy child and although he did fit the symptoms. So if you're looking at just the Spectrum, right and you're looking at the symptoms, she has such a wide spectrum though to ADHD is a wide spectrum. But like I took an evaluation for ADHD test for him. And he was like severe. Hmm if that's what you were going on. It was very severe but just because he had the symptoms didn't mean that's what he had and I knew that and so but we just didn't know what he had like nobody knew and so we went we had planned this trip. Okay, so we were we were going to Hawaii and we had already been dealing with this for like a full year and a half. Yeah, because we were in Washington. We're there for eight months or so and we went to North Dakota. We were there for a whole year year. Yeah, and then we're and we were just pretty much learning to deal with it. Yeah, it was then we plan that Hawaiian trip. Yeah. We're in Hawaii. Hawaii was the Tipping Point for that. I thought because Jason I up to this point. We were scared. We never left Shepherd never be alone because Abby's aggression was so bad Shepherd was so small and yeah sensitive and we just didn't trust Abby. We never know when trusted. Him so sad he could be in the best mood, but you leave to go to the bathroom. And while you were gone something's flipped on him and he's throwing rocks across the room. Yeah, I mean his aggression was becoming severe and when we went to Hawaii, it was like I thought you know, you keep thinking as a mom. Maybe this will help maybe this will help this is maybe what he needs and I thought well our family will relax and go to the beach and hook it better but I was just with him did not it was the same. It just wasn't improving and there are some things that the one thing that we did notice with him though was At least in the sand because he was always a touchy area sensory sensory. He so very sensory since he near the water the calm this and you held it but once we went like into the house or once they're just kind of playing in the backyard. Yeah or again, like doing something you can't change his environment quickly. So you'd have to kind of prepare him if we were going to go to the beach. We had to let him know like way ahead of time. Yes sure. If are you know, you couldn't because most At least our kids anyways where I was like, let's go to this grocery store. We just want to spot any was ours like awesome for them there. Yeah, but Abby you couldn't be so it was like his OCD couldn't handle it hits like she had a prepare. He had to prepare and mind you to he was also having major sleep apnea. And I knew he had sleep apnea but doctors wouldn't the doctors that he had been seeing they wouldn't do a sleep test on him because they said he was too young for a sleep study unless they Did it in this certain other way after Graham and environment were like that's not really gonna work. Yeah. I was like that wouldn't work. We have two more do it this other type of one. I don't remember the names of them, but he wasn't sleeping through the night and it was contrary to his lack of sleep. Yeah wasn't really sure also to his he was constantly tired. He constantly had baggy saggy under his eyes and it just everything together was making him a very angry. A depressed kid and the defining moment for me was definitely what I think, you know, we're getting at yeah the Hawaii incident and we're in Hawaii and we never left Abby and Shepard alone. And so I had them both outside and they were playing and then I had to come in because I had to go to the bathroom and I had asked Hani to stand outside and watch them and she had went out there, but I guess she decided to To pass it on to Kai. And so she had told Chi to go out and watches. Yeah, and then both of them saw each other was doing and not no one was outside and and bear in mind. This is only like a few minutes. This is like in the amount of time for me to go to the bathroom and number one mind you I'm not like see on the positive paper number. Yeah, exactly newspaper. Well, I came downstairs and I saw Hani & Kai and Jason inside and I said who's outside with Debbie and Shepherd? And as I said that I heard Shepherd scream and I literally almost I like sunk to the ground. Well that it was like the loud curdling. It was real loud hurtling cry and it still makes daughter. It makes me want to cry right now because I couldn't go out there was like you're stuck. Like I was so nervous of what I was going to see because I had Thought that if Abby was along with Shepherd for too long a bee could have the possibility of such a really hurting him severely hurting him to a point where he may not survive. I because that was how his aggression was and not that he was meaning to do it, but he can't control himself and this is what pandas does to kids you hear over and over from parents and they're terrified some of these parents don't get a diagnosis and their kids end up in homes because they can't don't know how they can't do it. And so handy ran out there first and then Mom there's blood there's blood. Yeah Jason and I'm like stuck. I feel like a frozen person was like everything moving slow around me because I this was my worst nightmare. This was the worst thing I could have dreamed of and Jason picked him up and brought him and he's just has blood all over his face. It's like all over where you don't know even what happened because you can't see it. And I was like, oh my gosh, and I just like crying and bawling and I'm looking over and then a because I see a be hiding outside and I just I lost it. We ran Shepherd upstairs bathroom the bathroom to get a good look and we're like why pasta? Yeah because and so there's a big gash in his forehead. Yeah. And like I said, Abby was outside. Well, he walked upstairs at that point. He walked upstairs and I couldn't handle it. I was like, I can't look at him like I couldn't look at that point. He started freaking out because obviously he he he well, he don't know but here's the thing is like we still don't have a full. Yeah, like we don't know. We don't really know what happened. Well, we don't know what happened but kind of yeah, well I was so we went back outside after we clean it up after we you know, he ended up being okay. It was worse than it is. Look, it looks worse than it was right. He did he yeah it you know how sometimes you can get like a small cup at it's just like gushing blood. So that's what happened in this instance. It looked so bad. So I thought oh my gosh, but it was it was a cut on his forehead that didn't need a stitch or anything like that it maybe it could have used his but we use a butterfly bandage and you can't even see it now so we went outside because you're trying to get we're trying to get like a bee what happened, but he was still younger so it's like yeah. I couldn't lie and sometimes I felt like when he was having these episodes he didn't necessarily blacked out or something. Yeah, sometimes it felt like he didn't remember exactly what had happened because he almost seemed confused at what we were even asking exactly and that wasn't his nature his nature and his age was always like to tell you everything that happened and so but we did find a Shell we found like a seashell Rock right? It was like, yeah, we call it a I forget what those are called, but it's like a hard rock. And it had blood on it. And so would we assume so we assume like either he threw it at Shepherd or they're throwing it up in the air and it hit him in the head. Yeah. So again, we start our assumption was that every got angry had an episode through it because they always were fighting about something but my but that was like that point where you said that it was just like at that point. I told Jason I was like we have to put him on medication because up till this point. We know the damaging effects of putting your kid on medicine for ADHD or Autism that it literally don't need it. It will mess with your brain chemistry. It's not a secret. It's not a hidden thing. You will mess with a child's brain chemistry with their brain that's developing once you put them on specially at that early age that early age if you don't really fully yeah work through it. Yeah, so but I told you Jace I told you Jason was like whee. I'm desperate. Like I don't know what to do. And I just I think I cried like the rest of the night because it was so emotional to me. The worst thing for me is that my child could hurt my child. All right, and I I just it was devastating to me. I was so devastated. And so we this was shortly after that. We left for Utah and I think and I think this is obviously one of those this was God. Yeah because we were planning to stay in Hawaii. Yeah. That was our whole goal was we're going to stay there. Yeah, but I was being you know recruited to go to Utah and it was so ran it was like a random thing. It's like well Utah I We kind of thought about going there one point and they kept like pushing it pushing in like, okay. Well, maybe we'll make it a little bit of experience, you know, and then because after being on that island where like if we wanted to live in Hawaii, we wanted to go somewhere else. So we're like well, maybe we will kind of come back and then make little bit more money reconvene and then go back so it just happened that way that we went to Utah. Yeah you from a fan I think right somebody he said hey, have you ever looked into pandas? Yeah, because you were saying you're asking if I had expressed on one of our viewers who are really like, I don't know. I don't know you I did I made a vlog and I just said if anybody out there knows because I'm going to have to put him on medication. I don't want to because I don't I know in my heart of hearts. This is not autism's my ADHD is not PTSD and someone had said it sounds like he has Syndrome just look into it and you did and I did I Googled it and I was like, holy you said there's some specialist. Yeah. So your first I looked at the symptoms and I thought this could have been written about ebi right exactly. Yeah, and then I looked at their the national system and saw that there was a doctor like 10 minutes from us a specialist and the special are not all over I was going to say and that was the other crazy thing is you're like where you're like, it needs a specialist kind of doctor to diagnose it. Yeah, and you're like, oh my Oh, gosh. I hope there's one in our area and their way home. It was like right down the road and be like what I have to give this doctor high price. He's a man was he was awesome. Yeah, he was the type of doctor that every mom dreams of having that they he listens to you and I called their office like this all happen the same day. I got the comment I Googled it. I found that there was a doctor I called them and this was like at 11:00 in the morning. Yeah, and they booked you and I called and I said hey. I am pretty sure my son has pandas and I'm desperate to get an appointment and they were like doctor can see you at two o'clock. And I was like, are you serious? Yeah usually were a month out but someone canceled today and I was like are you kidding me? So I was like, okay, I'm will go in there and this is this is to me what is mind blowing about panda syndrome? Is how bad your child can be as far as symptoms and how horrible the effects are on your entire family and yet to diagnose it is to do a strep test. That's it and to fix it is antibiotics and I went into the office. thinking well, he's going to be negative because the negative for everything else and it couldn't be that easy because I had already Googled it right and like retinol they couldn't be that easy, but he said he's like well, we'll do a strep test will do it in the throat will do it from the bee-hind if it's if he has Panda syndrome the strep is going to be living in his gut and if it's bad enough we can it'll show up in his from his behind right now in the office and I was like Go for it, you know go for it. You know, I wasn't expecting anything. So did it, you know, they walk out of the office to go do the, you know, wait for the color to change and he comes back in and he says it all nonchalantly like it was a regular strep test, you know, and I'm this mom's gone to his for two years, right? And he's just like, well, it's positive and I I'm I'm needed like a sit-down like preparing yourself for these rules and he just non-client. Like well deposit and I was like, oh my gosh, like I I lost it because I'm like this is this is something positive. This is an answer like what you're like now what it was that he was just like well, it's something tested positive for that. I can get you on antibiotics right now and I was like, what does that mean? Like tell me everything and he's like well for six weeks he'll be on a high dose of antibiotics and within a week, you should see his symptoms reverse and I was like, At 10 o'clock this morning. I had no idea who you were and at ten o'clock this morning. I had no idea what Panda syndrome was and here I am going to Target to get a prescription at 5 p.m. And with this hope right? Yes, I like this. Hope after all that Something's Gonna Change. Well, we start him on antibiotics. He was taking high doses of it twice a day everyday and and you everyone listening like, you know, I'm not for antibiotics, but there is a time and there is a place and I am so thankful and so grateful that they exist for something like this and so he did that and a couple days in I started noticing that he wasn't having as many fits but I was kind of holding my breath. I wasn't getting excited just didn't he say that I can have a flare. Yeah, right, but a weekend just like just like doctor said he wasn't having his aggression fits. They had gone from having up to 10 a day to maybe one if that but he it was almost like he would kind of start to have it but he could control it he could turn it off which he had not been able to do that before and I was like walking on eggshells. I was so nervous and I and I was so happy and I just didn't know how to feel because What did this mean for him long term, so he was on the antibiotics for six weeks and he was still on them. We went back for another appointment and I literally hugged the doctor and I was like you have no idea of like maybe you do maybe you don't I don't know how many parents you see, but you literally changed my life. You literally changed my son's life. I mean he's doing he hasn't had one of those aggression fits in issues in like five weeks. Like you don't understand what this means. You know, it's funny about this. Hmm. Is that doctor is not that kind of emotional doctor. He was not at all. He's a very calculated Harry like not very humorous doctor. So nice is like, you know a nice is the complete opposite of that. I'm like, I think I wasn't I didn't get to I wasn't there to experience that but I met him and I was just like that's funny to think about, you know, how he's reacting to you. Yes ice totally more like awesome monotone. Tone is very much. Unlike. Okay, let's do you and he's like, well, I trust what you what you feel because you're the mom but he's yeah, he's very yeah, he's very very good. Very good been totally not emotional, right? You know, he's like, I don't understand why that's mine. I was just so happy and at that point he had said so typically with kids who have pandas after six weeks we go to a low dose of antibiotics and they'll stay on a low dose of antibiotics through puberty when the brain changes. Is and stops where we'll stop creating those antibodies on their own because with pandas if you just stop antibiotics the brain instantly starts to create the bad antibodies that attack the brain tissue and I mean that can happen within just a day of missing like it he was a doctor there to that said like he wasn't for he didn't antibiotics. Hi there like but he said obviously he was like, this is what you have to do. This is a case where you need it, but he was talking like was that I can't remember the so the long-term goal. He didn't he say he didn't want to do that. So the long so he was so this is what happened. I know what you're getting 2 but you're missing a step. But just because you you were working so much. You probably don't remember this he was so we went to the low dose and because typically you can do that. You can go load us but we really he was like will go to low dose for six weeks and we'll see what happens most kids do And it just controls the symptoms and but sometimes if the strap was really really bad the low dose not work. And so what happened is we went home and within a couple days his aggression was coming back his symptoms were coming back and buy a week I called and I said no I don't do the low doses working because he's reversing and so they put him back on the high dose and it took twice as long to get him back to where he was the first time and but once he got there, you know the doctor and I had a long discussion about what the options were because he said I do not Advocate keeping them on high dose of antibiotics for until adolescence that would could destroy his gut that's going to destroy his health. He we can't do that. And it's there's like ethic issues with that too for like the medical industry well and then long-term he wouldn't even react to it anymore. Yeah or something happened and later in life. They can kind of overtime kids can get used to like the dosing and you can't just keep upping the dose but his pandas was so severe that he had to stay on this high dose antibiotic. So at that time he had said the alternative is that we get IVIG treatments, which is a Blood plasma transfusions. They're very expensive one transfusion, which is a two-day back to bag is $17,000. And at the time we didn't have medical insurance because so we need a three of them probably right? He's got he said we probably need a minimum of three and it was super ironic because we usually have we usually always have insurance for our family through Jason's where we just return positioning but we had just money. Yeah, we had just moved we had just got to a new company and they didn't have any open enrollments and so we were not on insurance and that was crushing because I was like, well, we can't do it. We can't like we can't afford to do three four rounds of IVIG at seventeen thousand dollars a pop times for And So, I was devastated and the doctor agreed. Well, let's keep him on high dose antibiotics until you guys. Save the money, you know, we'll do one treatment at a time. So we're like, okay, we'll do that. And so we were just kind of waiting and at this point I was pregnant with Cosette and we were about halfway through pregnancy with her and I were I was in the office one day and one of the male nurses was like Hey, you know, I just had this thought for your insurance because my wife and I are pregnant right now and she can actually get on My insurance as soon as the baby's born because it's considered a life-changing event and so insurance if you have a life-changing event insurance is required to pick you up even if it's not open enrollment and so I went home and like look that up and was like, is that a real thing? And so we got excited because that meant that when Cosette was born we'd be able to get on his Works medical insurance right away. And so that's what we were holding out for so he was on high dose antibiotics for Or about eight months as well. It was a while. Yeah would have been about eight months because I was her whole pregnancy. So it's about eight months. And once we got on insurance, he we decided to do the IVIG treatments, which I now today regret doing I regret doing that because he was doing really well and when we started IVIG the doctor had warned me and said Oftentimes IVIG can make kids worse before they get better that was definitely the case for us. He had his first treatment and his symptoms flared up quite a bit and I just when you go through so much with a kid and you go through so much emotionally and physically with your child is yours exhausted. I was I just couldn't fathom dealing with that again or bringing that into our family again. You just had a newborn and yeah, I just Had a newborn and I just couldn't mentally and physically see myself dealing with this and I talked to dr. About it. And I said I just don't know if I can deal with his symptoms coming back. I just I honestly don't know if I'm like strong enough to do that and he encouraged me to just hang in there and do some more treatments. We ended up doing two more IVIG treatments with him. So I was too full treatments. All right, we did three full treatments all together. No, but is too dangerous. Is equals one treatment two days equals one treatment you did so we did six days which was three treatments. I thought you only did two now we did three. Oh, yeah, we did three full ones and we were supposed to do a fourth, but what we ended up doing so when he had his third treatment, he was doing okay, but I had talked to his doctor and I said, you know, I'm really fearful because And I should have said this at the beginning that the strap oftentimes most of the time we'll live in the tonsils of the child and we had already so whenever you was on the antibiotics his he would no longer was having sleeping problems because it was controlling the flare-ups of the the strap and so his tonsils were not stolen anymore which is why he had has sleep apnea so much because his tonsils were constantly swimming. But I had read doing IVIG and I was a part of you know, I was reading all this and talking to other moms who had done and I was on a bunch of boards with pandas parents and there was Mom's saying if you're doing IVIG treatments, you're doing them in vain if your child still has their tonsils in because IVIG treatments antibiotics no matter what you do will not take care of the strip in the throat in the tonsils because it Harbors there and you can't get rid of it. And so whatever you do once Stop it, the strep gets released from the tonsils and into the body. And so I had a very serious conversation with our doctor about that and said I don't want to do this anymore with ebi. I don't want to do that IVIG treatments. Well, I might be jumping in the head. But yeah, go ahead when I wasn't at some point he was talking about and like I said, I know you're going to get into it but like building the gut health. Yeah, he mentioned that at some point because I know like the antibiotics antibiotics kills it. He did do you need to re but wasn't that a part of that plan at some point? Yeah, I guess I should have said that I mean at the very when he for when he started or when he ended up staying on the high dose antibiotics. He said well, this is going to destroy his gut and he we did so we did Whole 30 Grant and kept him off sugar. And yes that was important. Yeah thing to that was important. We also were giving him probiotics and other supplements and stuff. The problem was As high dose of antibiotics that he was taking it was the it was just counteracting with the probiotics we're trying to do they just could not you can't heal a cut while you're constantly destroying it. And that was one thing I had I talked to him about when I was talking about the IVIG. We I can't heal the kids gut because it's just we're just destroying it constantly and I can't keep doing these IVIG treatments that cost crazy amounts of money, and it's Lll not getting rid of this this and he was like, I agree with you. He needs to have his tonsils out and I wanted to do a couple treatments and see how he did first because he this doctor didn't want to just jump in and say hey we'll get his tonsils. Yeah, if he doesn't need them ripped out, but after the third treatment he agreed he said yes, and so I took him to ear nose and throat doctor which completely agree that he needed his tonsils taken out. And so we were this was when we were moving so we were about to move here where we are now to Montana and we were going to be moving in about three weeks or something close to this schedule that appointment I scheduled the appointment from his tonsils taken out. I was nervous but I was excited because once those tonsils were gone. The strap was going to be out of his body because that's where it harbors and I mean besides the gut but we can heal the gut right you can't take care of the tonsils. Um, I mean, at least I didn't think at the time he could but it was horrible. So and now I look at it as a blessing but I didn't at the time. Yeah, I woke up and stress. I gotta be up at 5:00 a.m. To get his tonsils taken out. And I gave him because he was hungry he was begging for and I hadn't fed him the night before because he wasn't supposed to eat right and so I gave him because he could only have clear liquids and so I gave him an 8-ounce sippy cup of water, but he was so upset and wouldn't do anything and was crying and wanted milk. So I put a like a tablespoon or a teaspoon of oat milk into the water. So He would think it was milk, but it was still see through wasn't like solid or a pretty clear. Yeah, I let him drink it and I didn't think anything of it because I could still see through it. It was still a clear liquid and it was like hardly anything right? And and when we got there she they, you know, were there between us and stuff. She was like has he had anything to eat in the last eight hours and I was like, no he hasn't had anything to eat. I did give him some water with like a teaspoon of milk in it. I was just being honest them because I didn't think you're not supposed that he could have seven up so I know it's not funny. Yeah, whatever 7 apples sugars, but they long story short they refuse to do the surgery and I can understand to a certain extent. Yeah, maybe I could have been a mom that gave him more than that and I'm not being honest, you know, what was horribles you worse devastated and then you're trying to reschedule it and there was nothing available and we're saying we're leaving and it was like well, so he was supposed to have 14 days to recover. Before we move. Yeah, and the the surgeon would not do the surgery unless he had called me told him that we had to move. Like if I don't do this now, he's can't get it done. And I think you said didn't you say oh, yeah because we're moving within like the 14 days. Yeah, and then that was the point where he's like, well, I'm not going to do it unless he has yeah the minimum Fort so even then at that point you're being honest and he was just like no I'm not going to do it. Yeah. He's like I'm not going to we're not doing any more like you got to be kidding me. Yeah. I was like, how is this even happening? Opening right now because the problem for us was is this Panda specialist doctor is is only here in Utah. Yeah are there in Utah there is no Panic specialist in Montana. And so once we move we have to see different doctors and the insurance company is going to make us go see that go Gabby doctor refers to an ear nose and throat first. Yeah. It was going to be this whole event and I was so stressed. I mean Was just a horrible. I just felt like everything was just closing in around me and like what the heck am I going to new baby? We're moving. Yeah, your son's going through the stuff. It was a it was horrible. So at that point, I called my sister and I because I just I was like needed to vent. I was like, I don't like what what is my problem for putting in a tablespoon of oat milk in his water? Like this is my fault. I just felt so guilty and and you know, she had already been talking to me about using Supple different supplements and essential oils and stuff like that. And I just at the time I just wasn't really a believer in that I guess not not that I love I've always loved essential oils, but I didn't really give it a chance or think that it could actually help Debbie with a syndrome like pandas and she said, you know, he said just you have this stuff at your house. Why don't you just Try it. Why don't you put him on a strong probiotic like a really good one and start using these oils that will get rid of this in his body. And at that point I said, I don't know what else to do. I mean, I guess I need to do this and so at that point right before we left. I had a our last doctor appointment with our doctor and I I I I talked to him about it and I said, you know, there is no Panda Specialist or doctor that We're going to be able to see in Montana. We can drive back and forth to Utah. But I said hear me out. I kind of want to try this. I want to try taking him off antibiotics, which I said very heavily because I was so scared to try to take him off antibiotics. I just see with how well they were working. Yes. I was terrified and it's not that he liked the doctor. We could have still got all the antibiotics here in Montana. That wasn't an issue. Wasn't like moving was making it so that he wasn't having medical care because that's not the case at all. He I was doing like phone consultations and like appointments over FaceTime with his doctor. So that that wasn't the issue. I just really felt that with everything going on that they're probably there had to be a purpose and that I had to try something different. I really do believe in our bodies and I believe that our bodies do have the ability to heal themselves because oftentimes when you're using Pharmaceutical medications they are masking the symptoms and not really taking care of the underlying issue. Well then diet to and diet because you have this horrible diet and you're taking medications. Yeah. Well and we already knew that Abby couldn't have food coloring Friday. So we were now we are very strict with his diet. Yeah sugars food coloring food coloring was begging mean even now they might sound stupid. It does sounds like I said to me I'm like really food coloring. Yeah, but you can't Yeah, the chemicals are coloring do do mess with kids brains and that has actually it's not a theory. It's been proven over and over again to exasperate symptoms of like ADHD autism and all kinds of different things. But you know, I I talked to him and I said I want to try taking him off antibiotics and putting him on a strong probiotic and I want to try these oils and I want to try these supplements and you know, the great doctor that he is. Is he's always told me I'm a Believer in Mom's intuitions, and if you want to try this, I'll back you up with it. I can't say it's going to work for you, you know, but if you need antibiotics again, call me up and I'll prescribe them and we had plenty of prescriptions in case we wanted to fall back on that again. But once we got here to Montana the first couple weeks, you know, cause I don't want to do while we were moving and unpacking I wanted to be a bit more subtle so I can handle any repercussions. You might have at that point. I stopped sharing his Panda story on social media. And so this is going to be all new news to you if you followed his story because I stopped sharing not because I didn't want to I stopped sharing because I wanted to be sure what we were doing was going to put his The syndrome into remission, which was my whole goal is through this whole process and I feel like it's it's been how many months have we been here Jace? We've been here like she's 10 8 7 8 months 7 months who know it whether we're in March an army. Yes. We've been here for like 7 so eight months. Yeah. Okay. That sounds right. We have like eight months and I feel like we're at a really good place with ebi and I'll what we did with him is we took him off antibiotics and replaced the same dosing that we were given of antibiotics like the Quant not the quantity, but the quality of it. I'm not sure sure. Yeah, you just gave him a high dose of them their high doses a couple times a day of probiotics and not just probiotics. Like I wouldn't walk into Walmart or Target probiotics off-the-shelf your specialty these are specialty Probiotics you can get what's the important thing? There's a portent that doesn't feed the strap. Yes. This is very important. She very important you do not I repeat do not want to give your child a probiotic that has the streptococcal strain in it. If you do you are asking for a lot of trouble so because it is The probiotics do some a lot of them do or most of them rather do have most probiotics of the street as the straps trained in it because yeah in healthy guts and healthy people normal some they need that bacteria to help them guard away from it. But when you already have strep in your body putting a probiotic that with the streptococcal in it is like the worst thing you could do. It makes it worse and so The never do that always look at what strains are in there. There's a company say the majority of them do have it the men to specifically look for the majority. Yeah, you're right the majority do have it in there. And so I can only like I recommend because we did start out using a plexus probiotic and I'm not an advocate of plexus. I don't like a lot of their products that they have. However, even even like we use Young Living products and their soup plant-based and super Amazing, but even my sister says, you know and the probiotic that plexus has is actually a very good probiotic but above that higher than that getting a custom probiotic is even better. And so there's a company called custom probiotics and you could just Google them custom probiotics and you can call them up and say hey my kid has these symptoms and this is what he's going through and they'll make a custom. Probiotic there come very high potency. That was the word. I was looking for that so high potency probiotic is what you want with no strain of streptococcal in it whatsoever. And so we did that we were doing that and then I was constantly I had made a roller an oil roller bottle for a be that had oregano and oregano oil has been known for centuries. To be an anti-fungal antiviral it takes care of but different types of bacteria inflammation nervous system all kinds of things that and Wintergreen and Cyprus and Valor and Bergamot and vetiver are there was a bunch of these oils that are antiviral antifungal and anti-inflammatory and I mixed them together. Whether with fractionated coconut oil and I would rub it on his spine just throughout the day all the time and I did this for about 30 days and he was also taking some other supplements. He was taking the sulfur's I'm I started giving him which sulfur's I'm if you're not a Young Living member you wouldn't know it is but it it helps rebuild gut health and it helps keep out bad bacteria, which is what he needed and it also helps clear out a lot of yeast like yeast overgrowth That is in the body which you don't want when you have yeast overgrowth in your body. You're just inviting negative bad stuff to happen in the body your brain and your body is connected to your gut your gut health so that plus the diet that plus the diet. So for I think I did it for like 45 days. We were super strict on diet high probiotics and the supplements and we were just doing it constantly. And I will be perfectly honest because when I started this journey and wanted to share openly about what the effects were of taking them off antibiotics and what the effects were of doing the probiotics in the oils. I want to be really transparent because I honestly I was going for it and I was very hopeful but I didn't think it was going to work. I thought we would be back on antibiotics and I honestly expected that's where we would be. But it we didn't know I actually uh, hey he's a different kid now. He's a different kid now and he's doing better on probiotics and the oils then he ever did on the antibiotics and that's that's like from the heart of a mother. I like the way that you can really tell ya is when he gives me a hug. I know we're always like oh my gosh, he wouldn't do this been like really Coming towards me more and and you know, just especially as a dad who has that with his kids all of his kids. Yeah, they're always loving I mean but he for whatever reason, you know, even when he was especially when he was going through his he wouldn't he wouldn't let Jason die for him. I couldn't touch him. I couldn't it was it just it broke my heart. Yeah, and so as it's weird for me now to have him jumping on my back and wanting to play But he's super sweet to his baby sister to his little brother. Obviously, he still fights with his with Shepherd, but it's normal but as a normal child can't play fighting and stuff. Oh I have rarely has unless he's eating like food ice if he has food, I still have a flare but it's still he can control you can control it. And that's what's is. So amazing to see is how far he's come. Yeah and how like you were saying you're just trying to follow your intuition. Work through get answers prayers and advocate for your child. And a lot of people are probably asking because they I get messages. I feel like almost every day about his tonsils. And yeah, we were going to get his tonsils taken out. So why why didn't we hear and this is why I said earlier I look at the situation that happened with his tonsils now as a blessing because I can now say, you know, it's been about eight months that he's not going to need his tonsils taken out his cigarette. Right now he sleeps Like a Rock. He's doing really well. His tonsils are not inflamed. The last time I took him in for a check-up his tonsils were totally fine and I am so grateful for that that that happened because you know, we could he could have gone through procedure that he didn't need. Yeah and looking back. I just I wonder like why was I so upset? I mean, I know at the time what it felt like but looking back. I'm just so grateful for everything that happened the way that it happened and I feel like when we move to Utah we moved there for Abby and when we moved to Montana we moved here for Abby because if we wouldn't have moved to Utah he wouldn't have got his diagnosis if we wouldn't have to Montana we wouldn't have tried the probiotics. I don't think because at that point we probably would have just didn't get his tonsils taken out because of that whole thing that was going on. We probably would have kept him on antibiotics. And so there's just all these things. that happened in these these events that take place and it just makes me so grateful. Like I don't even know how to explain it. He he's doing so well and he his eyes are Abby. He never has those moments. I mean, they're they're very few and very very far in between that you see that the heavy glaze over his eyes and usually like you said, it's if he's had food coloring and food poor diet, or he's eating a lot of sugar one day because I mean, we're human Sometimes we give our kids a GT night or something. Yeah, and sometimes he has things he shouldn't and he'll get a little flare up but they're not bad right there completely controllable and I'm never worried about him. I have zero fear of a be doing like he is. Oh my gosh like you seen with Cosette and it is a it's dreamy him and Shepherd are like best friends and they constantly play and get in trouble together and he still he still the rough little Evie, but he He rough like that's his like no, that's just like he's always been like just as big gigantic Beast Boy. Yeah, but it's out of love not out of yeah, you know just can't control himself. Yeah, and he's super sensitive. He is really sensitive. Like he has he it's like he wants to be like this big Brave. I can see him as an adult being like, I'm this big tough Brave guy, but he's really this melting sweet there that has this really sensitive nature and He's like the like Cosette is like wrapped around his finger. She he will do anything for her and he will bow down to her and if she even thinks about like, you know, if she like makes an item like please don't leave me he's like all there I will give you anything you want. He's a sweet kid. Yeah. He is sweet. So I hope that answers some questions for a lot of people I am going to do a video about kind of what we've been doing and share the products that we've used with him. I know that we said that we use Young Living and I can only advocate for that company. It's the only one that we've used that we really believe in and that we know that there's them all but we know the difference we know the difference. Yeah, there's I mean honestly, I think people really have to do their own research you to decide because I know one could tell me this is the best so comedians I would have been like who says it's the best, you know, it was when we did our research and we Do young living there a hundred percent plant based company and so after Hawaiian. Yeah lavender incident. Oh, I know wait seriously like we did. We've always used Young Living lavender and we would use it for the kids sunburns in Hawaii, but we ran out once yeah, we went to Whole Foods and got one that said hundred percent but I remember thinking oh, it's so cheap. Wow. Yeah, but you get what you wish for hurry up because we use that laughter and it burned his skin and eye. I felt so horrible. So anyways, I can only advocate for that company. So if you use other essential oils, don't come to me and tell me that's not working. I don't think you have time for your burning questions. Oh we went over. That's okay Everett. This was goodbye. Okay, should we just do a couple burning question if you wanted it will do them. If you don't want to hear the skip it but burning nobody's gonna stick around for questions because I'm actually getting tired too. I am getting tired. These are going to be well. Do we okay. I kind of want to answer these questions in a fun time. So let's do but this Burning questions next time let's just answer this one. That's not as fun because somebody asked so these two questions, let's save it for the next podcast but it says where has been your favorite place to live and where has been your worst place to live. I want to go and we can go into that lingo inside ya next time. Okay, but we can't answer 10 15 minute. Yeah. Someone else had said though. When is your merch coming out and I did want to mention that he added. Chewing that we mind blown now my blow mine, but I'm so excited about our model. We spent some time. Yeah developing some shirts and some really cute merch I'm I'm ordering them for us first because I want to check the quality. Yeah scraps. Yeah, I wanna be like you sent me. This is totally a pixelated. So you should see it in the next couple of weeks coming out, but I did post our new logo. Instagram if you haven't said yes to that sauce is super cute, but that's not the only thing going on in shirt guys. We have a shirt that's going to say like like like like like like cute we have one as a cute little car that says vroom vroom. We have one that says literally just coffee and brownies brownies. There's some good ones going to be really funny. All right guys, we're going to sign off for tonight. But seriously, thank you for listening. Thank you for routing a Beyond right Jason. Oh my gosh. Yeah like Yeah, those are so we can use who's stuck with us through it. And yes, I did it no updates. Yes, there's are many of you who followed our YouTube Journey on eby's diagnosis and you routed us on the whole time. Even when we didn't have the insurance I had and we never did this but I had so many people say do a GoFundMe. Yeah will contribute but you know II never really wanted to do that because I that you know would have liked is insurance that sucking we had a lot of It did suck. We do still have a lot of medical bills to be honest from him. But you know it is what it is and everyone is obviously worth it a triple that for but I just wanted to say thank you for that. Thank you. Got thank you for seeing prayers. Yes. Yeah, Justin's help. Yeah. Yeah, because if it wasn't for you guys, I don't even know if I would know what pan I don't know exactly. So honestly you guys play a huge role in helping our family so as much as we say Inspire some with your story you guys Inspire us every day. Through your comments and what you say, so thank you for that, and we appreciate you. Thank you. Yes, absolutely. So don't forget go live the Epic life and Inspire someone with your story and stick around for the after show the Epic life after show. I don't think so. Sorry an hour. Plus it just stick around. It's gonna be great. Bye. Okay, so you said something funny? I don't know. I said I made good soup today. Yummy. Do you have any? Oh, yeah for other SIM plug. Is there any any stories though? Anything to start us off. I always forget that we what we should start off with. Hmm. Maybe we should talk about I shoveled the driveway. Maybe we should have a monotone start. I like yeah, so it's shovel the driveway today. You did that's good. You went to work to and I can just be like, yep. Yep. This is the most entertaining podcast on the planet now. I'll be really excited babe. How was your day today? And you're like it was fine. No, good. Hmm. Yep.
Today we share our emotional journey with our son, who has PANDAS syndrome. We talk about how it started, his diagnosis, the trials, and our emotional rollercoaster. We share things we never have before and update you on where he is now, and what we are doing for his current treatment. PANDAS Syndrome is not rare but is not widely recognized We urge you to have your child evaluated by a specialist if your normal child suddenly has a dramatic change in behavior. The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody or irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones. What is PANDAS? PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when:   Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or   The symptoms of OCD or tic symptoms suddenly become worse following a strep infection. The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody or irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones. What causes PANDAS? The strep bacteria are very ancient organisms that survive in the human host by hiding from the immune system as long as possible. It hides itself by putting molecules on its cell wall so that it looks  nearly identical to molecules found on the child’s heart, joints, skin, and brain tissues. This hiding is called “molecular mimicry” and allows the strep bacteria to evade detection for a long time. However, the molecules on the strep bacteria are eventually recognized as foreign to the body and the child’s immune system reacts to them by producing antibodies. Because of the molecular mimicry by the bacteria, the immune system reacts not only to the strep molecules, but also to the human host molecules that were mimicked; antibodies system “attack” the mimicked molecules in the child’s own tissues. Studies at the NIMH and elsewhere have shown that some cross-reactive “anti-brain” antibodies target the brain—causing OCD, tics, and the other neuropsychiatric symptoms of PANDAS. 