How We Arrived At Theo's Diagnoses Part 1
We give a detailed history of Theo's background before autism and lead up to his diagnosis of Autism and PANDAS.
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Listen to the podcast here. Transcript below.
Shawn:
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Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva, my little brother's Theo, and my mom and dad are Shawn and Angela.
Angela:
Okay, today we're going to talk about Theo's history, and how all these diagnoses came about.
Shawn:
So last night I put together some notes. We took a couple hours, and we looked back at Angela's Instagram. If you have looked at Angela's Instagram, @AngelaBlymiller, I encourage you to do that, because it has a full record of our whole story.
Angela:
Our journey. It started back to before I was pregnant with Eva, so if you want to dive in deep, you really can.
Shawn:
But we went back, and looked at all of the significant dates of everything that happened in Theo's life. So today we're just going to tell that story of how it all transpired. Theo was born June 24th, 2015.
Angela:
He was born premature at 35 weeks, stress station. He weighed four pounds, six ounces. He was on oxygen for the first four months, but he was healthy, only spent one week in the NICU. He actually spent less time in the NICU than Eva. She is our oldest, she is eight years old, and she was born with a blood infection. But Theo, only being 35 weeks old, the doctors just said he came out so stinking hungry. And most babies that are born premature are in the NICU learning how to eat, but Theo had that nailed down from the very beginning, so we didn't have to stay very long.
Shawn:
But the other thing is, so it was an emergency C-section, so kind of talking through that, we were seeing a midwife prior to the birth, and then the baby was breach, and Angela's water broke at 35 weeks, and she was kind of in shock. But prior to that, we had been referred to a specialist, because Theo had stopped growing at 32 weeks.
Angela:
Yeah, we were seeing the nurse midwives at a local large hospital. They were monitoring him pretty closely, just because there were a few things later on in pregnancy that started happening, like he stopped growing. Anyways, he was born 35 weeks, he was healthy though. Got to bring him home. I guess they call it lazy weeny white boy syndrome, because he just could not get off oxygen for a while. He used it at night for... For the first two months he needed quite a bit of oxygen, but then after that, he was really only needing it at night. He would desat at night if he didn't have it.
Shawn:
And he'll have to look back at some of the pictures on Angela's Instagram, it was kind of an ordeal to get him out of the house, because we had a portable oxygen tank that you carried, like kind of a backpack, and then he had his O2 sensor that was attached to his little toes. So whenever we had to go to the doctor's appointments, trying to get out of the house was kind of a hassle. At the time we lived in a condo, three-bedroom apartment on the second floor, and we had this huge oxygen tank delivered to us, and we had this little oxygen cord that ran through, what was it? A 1,500 square foot.
Angela:
Yeah, but basically, from the beginning, Theo boy has just kind of taken us on a wild ride. And I remember, he was probably, he had started smiling, so maybe close to two months old, and I was smiling at him, and he was smiling back at me, and I picked him up, and I had this intense, overwhelming feeling that he was here to teach me something huge. And at that time, he was a pretty healthy baby. There were no major red flags of any special needs, and not to say that my relationship with Eva isn't just as special, because it is, but I just had this intense feeling that he was going to teach me so much. And just thinking about it makes me want to cry, and I get choked up, but it was something that I back on regularly. Because I know that he came to this life, I am his mom, and he is here to teach us all something huge.
Shawn:
I feel like as the dad, my connection with Theo came later on. I feel like with newborns, babies cling to mom for the first six plus months. For Theo, he breastfed for a year plus. And so Angie's bond to Theo was really great in the beginning, in the first bit. But my bond to Theo really took off later on, and I felt similar feelings, but just to go back to the history, so he was on oxygen for the first month, but he was progressing really normally, eating really well, growing normally. And he was-
Angela:
Yeah, our doctor, a pediatrician at the time, was super, just proactive on all premature babies being placed in early intervention with our state, which is Utah. So right from the beginning, about six months old, he started occupational therapy, and he a little bit delayed based on his gestational age, but he was growing, developing typically according to his gestational age.
Shawn:
And we had an awesome occupational therapist that was with Theo for the first 18 months. But about 18 months he was-
Angela:
He aged out.
Shawn:
He aged out.
Angela:
Well, no, he didn't age out, he-
Shawn:
Tested out.
Angela:
Yeah, he tested out. Because early intervention goes up to age three, and he tested out, even though... Katie, we love you, hopefully she listens to this someday. She was so great, and just wanted to hold onto him, because Theo's such a special kid, but she's like, "I can't justify seeing him anymore, because he's doing so well." And at that time, we also just did a qualification to see if he qualified for speech therapy. And at that time, he did not qualify for speech therapy, because he was doing so well. So we just kind of crossed our T's, dotted our I's, made sure he didn't need any intervention at that time, and he didn't, he truly was doing super well.
Shawn:
So this is about December of 2016 that he tested out of speech therapy, which would've put him about 18 months. And we have a video right about that time of him at one of my indoor soccer games, I'm a big soccer guy if you don't know, but at my indoor soccer game, Theo says, "Go daddy." We have a video of it. We have other videos of him signing, please, more, thank you, and oh no, with our nanny, Trinity, who we also love. Shout out to her.
Angela:
She's the best. I wish I could just replicate her, and have her in all areas of my life. But he even was going potty, on the toilet, he went to pee and poop a few times for her on the potty. And we were just like, "Oh my gosh, we're on such a great trajectory." As far as him progressing and developing. He would mimic, like most kids at that age, appropriately would mimic anything we would like, "Cat, dog." Small words, he would mimic, and he really did have words. I think people don't believe us, because he's non-verbal now, but he had several words, and would mimic what we would say.
Shawn:
Just from my memory, "Milk, more, ball, please." Obviously we have the video of, "Go daddy." So those are just a couple examples that he did use at around 18 months. Soon after that, a month or two after the test for speech therapy, he regressed significantly.
Angela:
But it was kind of a gradual... I don't want people to think it was an overnight thing. I know for some kids it is, but for Theo it wasn't. We have our own suspicions, and we've talked to doctors, and for us, we know what has caused Theo's regression. I believe it's different for every child out there. It could be toxins, I believe that genetic factors play a part in it, there's different mutations that your body can have that inhibit your body from being able to detox. I mean, vaccines can play a part, there's a lot of things that can play a part.
Angela:
And we'll probably dig into that later, in depth, but we're not going to do that on this episode. Just know that we know what caused Theo's regress, and for us, it wasn't an overnight thing. It was very gradual, and it was over a few months time period, where Shawn and I were like, "Oh my gosh, he is not..." We got to the point where we were catering to him more, he was having more meltdowns. He used to be an easy-going kid, he got to the point where all of a sudden, one day, I'm like, "Oh my gosh, he's living off of Carnation, and some breakfast drink. He is not eating the foods that he used to eat. He used to eat anything we put in front of him."
Shawn:
Well, and then he stopped talking, stopped responding to his name, stopped making eye contact. You'll see fricking posters, billboards of, eye contact is a sign of autism. And prior to that, I kind of had said it in passing to Angela, and Katie, our occupational therapist.
Angela:
Well, he had asked her a whole bunch of times, because, I mean, just the statistics, boys with autism, it's much higher. And so he had that kind of on his radar, and obviously it was a concern of his. And so he had asked Katie a few different times like, "Hey, do you think Theo could have autism?" And she had worked in the ABA world and she was like, "No, I really don't think he has autism." And up until that point, truly, he did not have any signs.
Angela:
So for us there was a big intervention, or something that happened that led Theo to regress. And I had talked to our pediatrician multiple times during this regression time, because he was having lots of ear infections, he was on antibiotics multiple times. And his pediatrician at the time, we've changed since then, he kept saying, "Regression is normal, regression is normal." Okay, that is not true. Do not believe that from anyone, or any doctor. Regression is not normal. Yes, a little bit of regression here and there, kids learn something, they forget it, they get it back. But the type of regression we were seeing was not normal.
Shawn:
So 18 months he tested out of speech therapy, at two years old, so six months later, he actually qualifies for speech therapy, because we retest him.
Angela:
Yeah, we ended up having our occupational therapy come back again, and she's like, "Yeah, I do think he does need some intervention again, and let's also get the speech therapist back for another test." And he qualified for both OT and speech at that time.
Shawn:
So that is June of 2017, when Theo turned two. And then after that, we kept pressing Theo's pediatrician, like, "Something's going on, something's going on." He kept saying, "Nothing's wrong with Theo, he's fine." Between that and-
Angela:
Well, he didn't say nothing's wrong with Theo, he kind of was like, "Well, I do have Theo on my radar. I have him flagged. I'm paying close attention to him." But he's like, "Maybe it's congenital hearing loss, because sometimes babies born with C-section are more likely to have this condition." So we started doing hearing tests, and we'd sit in that little sound booth, and they have those stupid little monkey up in the different corners of the little sound, four square, booth, and they would wait for Theo to respond to certain things, like the chirping, or the clapping of this monkey. And I believe it was like three times I took him, and he failed, every single time he failed. And so we're like, "Oh maybe this is all due to him not having good hearing." And he kept having lots of ear infections. So at that time, the doctor was like, "Well, how about we do tubes in his ears? I bet it has to do with his ear infections."
Shawn:
Well, and at this time, so we had your grandma, Joy, and your mom, watch Theo on separate occasions, and they both commented that they would call Theo's name, and Theo would never respond, he wouldn't even acknowledge that anyone was speaking to him, like going for a toy, or going for the street, and they'd yell at him, and he wouldn't even acknowledge that they had said his name. So that was another reason why we thought-
Angela:
Wouldn't yell at him.
Shawn:
Well, not yell, yell his name, like call for him, not-
Angela:
Right, yeah. So all of this is on our radar. We get tubes, when was that?
Shawn:
March-
Angela:
February, 2018. So he's two and a half at this time. He gets tubes placed in his ears, and we're like, "Okay, let's wait. Let's see if things start progressing again." If he starts developing. And he didn't. So then we did a sedated ABR test. So he's sedated, and I'm not exactly sure what they do, but they're able to find out if he truly does have any hearing loss.
Shawn:
Well, there's three parts of the ear, inner, outer, and then internal, brain chemistry. So they check out all of the physiological parts of the brain to make sure everything is functioning properly from the test, and everything checked out.
Angela:
So at this point, I'm so done. I know that something's going on with my son. I know that he could probably get an autism diagnosis at this time, but we were on a wait list, basically. And so I was like, "I have to do something now, before I get him into therapies, before we get the diagnosis, so that he can qualify for therapies." I just had this innate feeling, I need to change his diet. And I would say, we considered ourselves to be healthy, don't you think, babe? We thought we were healthy.
Shawn:
Yeah.
Angela:
But, man, we have learned so much since then, we were definitely not healthy.
Shawn:
Well, and I think it's important to note that at the time, so our pediatrician was putting referrals in, but the process of getting a referral to a specialist, like you said, you were on a waiting list, so then here we are just waiting of, "Okay, what are our next steps? What are we supposed to do for our son to help him to progress, to develop, so that we don't impede him from reaching his potential?" And Angela, at this time, started connecting with more and more moms on social media, and she had come up with the idea of gluten free, dairy free, sugar free.
Angela:
Yeah.
Shawn:
And for me, I was like, "You're crazy. This is hippy logic. This is not going to work." I've got a sweet tooth, I'm addicted to sugar, I'll freely admit it. I'm trying to lessen it, it's very difficult for me. But growing up, I was always eating Gushers, and Starburst, and Skittles, and-
Angela:
Doritos. The typical American-
Shawn:
My best friend, Ray, he jokes all the time, that I always had candy in my pocket. He would always ask me for candy, because I always had it. And I grew up with it, going to lakes, going on vacations, for roll-ups, I loved having sugar. So when Angela came to me with this idea of-
Angela:
I said no dyes too. So no gluten, no dairy, no sugar, and no dyes. And when I say no sugar, obviously natural sugars, in-
Shawn:
Fruits.
Angela:
Fruits and stuff. But he was not a part of it, but he respected me, I think... [crosstalk 00:18:29] you respected my-
Shawn:
Well, I think the biggest moment was when Eva came to us and said... I was at work, you told me this story, and is that Eva came to you crying, saying, "Why doesn't my brother love me? He doesn't play with me, all my friends' brothers play with them, why doesn't Theo play with us?" And so I came home from work when that one day you told me that story. I think you presented it like, "Let's just do two weeks."
Angela:
Yeah, two weeks.
Shawn:
"Let's just try it for two weeks." And I said, "Fine. I will commit, it's for two weeks, and then after two weeks, if we do it, and it doesn't work, then we're done with it. I don't want to hear any more of this hippie logic."
Angela:
So we are hardcore stuck with it, after one week, he started making eye contact again, and he started responding to his name again.
Shawn:
Well, and let's just be clear here, as a disclaimer, those first couple days was hell, because there was a bar, it was a protein bar that we had. There was a chocolate protein bar that-
Angela:
Oh yeah-
Shawn:
He lived off of-
Angela:
I forgot about that.
Shawn:
He would have one every single day. Because at the time he was only-
Angela:
He would have multiple a day. [crosstalk 00:19:36] He was living off of Carnation and some breakfast drink, and those protein bars, I forgot about those protein bars.
Shawn:
So I thought, "Oh." I thought I was being creative, and innovative, like, "Okay, Theo, here's a protein bar that we had." I think you had them from you working out or something. I'm going to just give this Theo, and see if he eats it, he ate it, he loved it. And then we found out how it had a bunch of dairy, and a bunch of processed stuff in it, so we took those away, and we hid them above the fridge at the time.
Angela:
Oh yeah.
Shawn:
And he would tweak out, he would be so obsessive, compulsive about getting it. And he's what? Two, two and a half?
Angela:
Yeah.
Shawn:
And he kept trying to climb on stools, climb on everything, climb on the fridge, to get to the protein bars. So those first couple of days were super hard, because you could tell he was hungry, he wanted his staple foods, we denied those staple foods. He finally ate healthy, organic foods that we put in front of him, and then that's where you saw...
Angela:
Yeah, we saw huge changes, and there was no denying it. Shawn saw it, I saw it, our family members saw it, his therapist saw it. And so at this point, we're like, "Okay, there's no turning back. I'm all in." So I researched the crap out of everything at this point. I was diving deep into toxins, foods, I mean, just so many different things, and I was just in the rabbit hole, on Instagram. And that's really when I started opening up and sharing our journey with all of this. Then a few months later, we were able to get into the University of Utah, and get that diagnosis, which opened the door for more therapies. And at that time Shawn witnessed him having a seizure.
Shawn:
Yeah, we were in the front room of our house, I was just watching TV, and his whole body just tensed up, and he kind of fell forward, face first. And I didn't know what it was, and I told Angela about everything that had happened that particular day.
Angela:
Because he came out of it really quickly.
Shawn:
It was seconds, it wasn't very long at all. I'd say 10, 15 seconds, but still that's kind of long.
Angela:
A little backstory, poor Shawn, he's been scarred, because when Eva was 18 months old, she had a febrile seizure. So he witnessed that, and it was pretty traumatic, because it happened while he was driving, and it was like...
Shawn:
It was awful. I was stopped at a red light, I had gone to a soccer game, my parents came to watch the game, and watch Eva while it happened. And they said she was just being really cuddly, and she felt pretty warm. And on my drive home, while I stopped at a red light to turn left, and I turned around, and Eva was seizing. I thought she was choking because she was just convulsing in her car seat. And being a new dad, she was my first kid, she was maybe two at the time-
Angela:
She was 18 months.
Shawn:
She was convulsing. So then I thought she was choking, so I jump out of the car-
Angela:
Maybe she was two.
Shawn:
Throw the car, obviously in park. And I go back, and I tried to do the infant Heimlich, because I think she's choking. I reach my finger in her mouth, she actually bites down on my finger, breaks the skin, I'm bleeding, and I'm just screaming at the top of my lungs, people call 911.
Angela:
Anyway, she's rushed to the hospital in an ambulance. I mean it fine, she was perfectly fine, kids get fever seizures, they're super scary. I just wanted to give a backstory, Shawn-
Shawn:
I know what seizures look like.
Angela:
Yeah, and he was super paranoid, and were on top of it. So he tells me, I call the pediatrician, we get an order put in for him to have an EEG, just to make sure that everything's going okay. That comes back normal.
Shawn:
The neurologist did say-
Angela:
I mean, you have to remember-
Shawn:
That Theo is just a really tough puzzle at the time.
Angela:
Yes, and that's all we ever hear. No one can ever connect the dots for us, all these specialists... And you have to remember, obviously things don't happen rapidly, you have to wait, and like Sean said, there's specialists that have to be referred to, and all of this... I feel like were in limbo for a good, I don't know, almost a year, going through all these tests, don't you think? Yeah, it had to have been like a year.
Shawn:
Well, I feel like every specialist we referred to, it was minimum two months waiting period. And so then you get referred to a specialist, you get that test done, no answer. So then you go back to the doctor, get a referral to another specialist. So 2017 and '18 was basically just test after test, after test-
Angela:
Yeah.
Shawn:
Trying to figure out what was going on with Theo. We actually did an MRI in November of 2018, everything checks out. We do a geneticist...
Angela:
Oh yeah, we see a geneticist at Primary Children's Hospital. And this was a turning point with me. I had been researching all of these things, and I felt, with my whole being, I knew that Theo was not born with autism. It was shocking, I remember calling Shawn after, I was like, "Oh my gosh, a specialist, a doctor, finally is validating what I've been feeling." And I remember that appointment, at the end, we were just kind of reviewing all the tests that we had done, and he was like, "Everything has come back normal." And I was just like, "Okay, but my son was typical. He was developing, something has changed, what has changed that?" And he said to me, he's like, "There is something causing autism, whether it be genetics, or environmental factors, or both. Autism is a symptom, it is not a diagnosis." So at that point, I just knew with everything inside of me, that I was on the right path with all this research.
Shawn:
Well, and so we met with the geneticist, we ruled out Fragile X, and we ran an autism gene panel. In November of 2018, we did a three-day a EEG now, to get a visual, again, go to Angela's Instagram, Theo had these sensors glued to his head, and then they just wrapped a bandana around it. And then the sensors were attached to a backpack, and he wore that for three days straight, because the one seizure we saw, we witnessed, we want to make sure that he wasn't having absent seizures in the middle of the night, which would cause brain-
Angela:
Developmental issues.
Shawn:
Yeah.
Angela:
So that's the end of 2018. So 2019, we finally get ABA involved. We start ABA therapy. We start more occupational therapy... Wait, did we start more occupation... He was still in speech and occupational therapy through Kids On The Move. He was in a sensory kids' class with Jordan valley, he was doing a whole bunch of different things. We were doing music therapy. We were just doing as much therapy as we could get, and ABA was a whole new space for us, we were super lucky. Well, actually, our first BCBA, we had kind of mentioned these things, our feelings with how Theo was developing typically, and how we felt like autism was not something he was born with. And our BCBA at that time... I'm sorry, if you don't know the lingo, what does BCBA stand for, Shawn? Behavioral... Some type of behavioral consultant. And at that time, the behavioral consultant that we had, he's like, "Actually, there's not really any studies out there to support what you're saying about your son."
Shawn:
Board certified behavior analyst.
Angela:
And at that point, I was so fed up and done with people who had education and felt like they could tell me what was going on with our own son. So at this time, I'm looking for a new pediatrician, I even asked the ABA company, like, "I would like a new BCBA." And Shawn kind of just rolled with it. He just kind of let me take the lead, wouldn't you say?
Shawn:
Yeah, at the end of 2018, I felt this internal calling that I had to do more, because at this time, Angela had kind of just taken controls, and was guiding everything. All of the referrals, to specialists, and all the tests that we were running-
Angela:
Diet, everything, I was doing.
Shawn:
And you were consulting with the moms on social media, and your own research. So you were driving everything, from the very beginning, and I started in the end-
Angela:
I don't want people to think there wasn't a struggle. There was some pushback from him on some things, and we had to compromise on certain things.
Shawn:
Well, I think there was a couple fights we had even-
Angela:
Oh, for sure.
Shawn:
One night I can remember, I came home from work, before I said anything else, I said, "I just want one night where we don't talk about autism at all. I don't want to talk about studies, or tests, or anything."
Angela:
Research that I've been doing. He was over it.
Shawn:
"I don't anything."
Angela:
And I mean, to be honest, I needed that too, because I was so in the rabbit hole. It consumed me, it consumed my entire life. I'd wake up, I'd work out, I'd do my self-care, but during the day, I was just researching, trying to get answers for how this had happened.
Angela:
All right, this episode is getting a little long, so I'm going to stop it right here, and we are going to continue. You can follow us on the next episode for part two.
Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva, my little brother's Theo, and my mom and dad are Shawn and Angela.