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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Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva, my little brother is Theo and my mom and dad are Shawn and Angela.
Shawn:
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All right, welcome back to the podcast. This is part two. We were talking about how we arrived at Theo's diagnosis. We left off on where I would come home from work and Angela would want me to download all the information that she had studied. We had a couple of fights where at night I had come home and say, "I just don't want to talk about autism right now," that I just want a night just to relax and unwind.
Well, about this time, so in the end of 2018, Angela had done all this research and all this work, and I was just following her lead and I felt it was now my responsibility to contribute some more. I made it a personal goal to read two books a month, every month. I've done that since late 2018 so it's been over 80 books that I've read so far. Just in 2021 I've read nine books this year. It's become a passion for me, but the first book that I read was called The Spark by Kristine Barnett, who is a mom with a kid with autism.
And she tells her story of how she entered his world and did the quirky, unique things that he did with him, and met him where he was. And then she opened up a daycare for kids with special needs, with autism diagnosis, and did the same thing with those kids. So highly recommend this book if you are just beginning the autism diagnosis. And that launched me into my research.
Now my research isn't solely on autism, my research has become everything. I feel like the universe now guides me to stuff to research. And so 2019, 2020, I read two books a month, every month, and now in 2021. In 2020, I did a functional medicine course. It's a Functional Medicine Coaching Academy is what it's called, fmca.org online, where it's all encompassing functional medicine. And that's what we had learned with Theo and she'd found him a new doctor. We had gone with a MAPS doctor and then we landed on a functional medicine doctor.
But part of my contribution was I felt like I needed to study and learn as much as I could, because Angela already had all this research knowledge from all the studying she had done.
Angela:
So 2019, this is when Theo's going to therapy through ABA. And I just also want to make a note that if you're not jiving with certain therapists or certain doctors, it's ... I mean, essentially they work for you.
And I think we'll make a whole episode just on that part of advocating for your child, because so many people think they get it stuck with this doctor or stuck with this therapist. And we've had multiple changes of different providers because they weren't a good fit for us. Where they weren't accepting all of the research that we had done, or weren't willing to be open-minded to see that diet plays a part. Or to see that other interventions than their actual therapy that they're providing, has value to Theo.
Shawn:
Well, and the other book I'll recommend is called Son Rise: The Miracle Continues by Barry Kaufman. This is one of the first books I dove into as well from my own research, trying to be the dad in the autism diagnosis and contributing, other than just following Angela's lead.
And again tells a story of ... This was in the seventies, eighties that his son was diagnosed with autism and his whole journey, and really cool part is his son graduating from college. So those are a couple of books I would recommend to give hope and inspiration and just light as you get going.
Angela:
Back to the timeline of Theo, because we want to lead up to where we're at today. 2019, we're going to ABA, he's still in the Early Intervention Program. And I felt like we were on a path, we're doing what we feel like we're supposed to be doing. We're checking everything off the list as far as therapies go. We're finding different doctors that are open-minded and helping us. We were doing a lot of detoxing at this time, and we probably need to have a whole episode just on that alone.
But that's basically where we were at 2019. Theo turns three June, 2019, and that's where you lose services with Early Intervention. So then at that time we had to change therapy or therapists. We got our own speech therapist, we got our own occupational therapist. And still, we're just chugging along with all the therapies. And then summer 2019, Shawn, do you want to say what happened?
Shawn:
Summer 2019, we went on a trip to the Pacific Northwest. Angela's family is from Seattle, the Bellevue area, and she had some family still up in that area. And August is a perfect time to go to Seattle if you haven't gone. Maybe now, with everything going on, but Seattle in August is absolutely gorgeous.
Anyway, we went up there and I'll let you read it, the post. I don't know if you want to read it verbatim, word-for-word, of what happened when we went there in August, 2019.
Angela:
Oh yeah. This is the post that I had wrote to my followers on Instagram. And okay, "Recently the boy had become ..." We refer to our kids as the boy and the girl. We have a daughter and we have a son, so the boy and the girl. "Recently the boy had become obsessive compulsive with tapping on hard objects, like DVD cases and books, et cetera. His eating has gotten even worse, so bad that he's even denying blueberries the last 10 days, one of his four staples. I have been racking my brain trying to figure out how to help him and all of his therapists have been trying to address it by hitting it at all sensory angles. We have been stumped."
"All of a sudden it came to me when we were on vacation, PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. He had a doctor's appointment ..." Side note, I had come up with PANDAS during my research, but back to our amazing first occupational therapist, Katie, she had told me about PANDAS at some continuing education that she had went to. So it was kind of on my radar, the universe had been presenting this to me.
Okay, back to my post. "He had a doctor's appointment the day we got home from vacation and I talked to his doctor about my concerns. He agreed to run some labs for it to confirm my unofficial diagnosis. He called me the next day and said that the two main antibodies, ASO and DNase-B, were through the roof high, which confirmed that he definitely had ANDAS. He told me a few different ideas on how he would treat it, but said that I should do some research, talk to my network and get back to him on the best way to attack it for our Theo boy. If you have any experience in treating PANDAS, please direct message me." I guess I don't really need to read that part.
"I'm just at the beginning of my research, although it breaks our hearts to know that Theo's little body is experiencing this, we are eager to attack it and see what this can do for Theo and his healing journey. Also praying it will open up his world back to eating food again. I have never felt so good about Theo's little team. We are in such a good place with ABA, speech and occupational therapy. Theo has made so many improvements in the last few months in so many areas. I can't wait to see what the future will bring when we have this PANDAS flare behind us."
"As always, we are so grateful for our Instagram friends who are always cheering us on. PANDAS is and autoimmune disorder in which certain strep infections cause a person to create antibodies which attack the brain, causing encephalitis in the basal ganglia region."
That was the post that I had made, just telling our followers about the diagnosis.
Shawn:
Well, and autoimmune illnesses are where your body starts attacking itself. The cells within your body can mutate or something might be dysfunctional with your cells, and your body, your immune system, recognizes those cells as a foreign invader as maybe disease or illness. And so your immune system starts attacking your own cells. And that's what PANDAS is, and within the brain so causing brain inflammation. That was-
Angela:
On our vacation it just really came to a head. His OCD and his mellow, easy, even-going temper was gone on that vacation. He just was not him himself. And that was a PANDAS flare.
Shawn:
And I think here's a great point to talk about mother's intuition, because the diagnosis was confirmed after Angela had already had suspicions of the illness being what it was. And we have an awesome pediatrician in Utah, Dr. VanDenBerghe, amazing doctor, that listened to the mother's intuition.
And it's rare to find this. And he's towards the end of his practice, so he's older and I think the years have taught him. Because our previous pediatrician, there were times that we came in and we asked questions and we were almost shamed for asking questions.
Angela:
Oh, for sure. 100% we were shamed. Dr. VanDenBerghe, he was so ... And he was humble enough and he didn't live in this space of ... Or doesn't live in the space of ego, where he is just like, "You know what? I don't know a lot about PANDAS. I trust you and I trust you're going to do your research." He knew me and he knew that I would be on top of it.
So he told me at that appointment, "Go home, research. Connect with me in a few days and I'll do whatever you decide you want to have done for your son," whether that be antibiotic treatments or anything else. And he encouraged me to do my own research.
Shawn:
Which I think that alone, if you find a doctor that is allowing you to do the research, I think you found a winner. And I've seen posts a lot recently that is a little bit of sarcasm that talks about, "Oh, I'm sorry, doctor. You've talked to me for about 15 minutes about my symptoms. And now you act like you know everything about my illness or my situation, when I've lived so many years with these symptoms or with this happening within my body."
I feel like modern society needs to take it upon themselves that your health is your health. And a lot of times you have to tell doctors, "No, I don't agree with you. Yeah, you might have been taught something, this particular theory or hypothesis," but science is never fixed. Science is never concrete. Science continues to evolve over time and you need to have the courage and strength to challenge some of the questions.
Angela:
Yeah, so that was the beginning of our PANDAS diagnosis. At that time, I felt like we needed another doctor on our team to help encourage us and support us through this new diagnosis. So that's when we connected with Dr. Armen Nikogosian.
He's in Los Vegas, he's an amazing functional medicine doctor. I don't want to tell his story, maybe we'll have him on some day, but he has a son that also has autism. And finding someone at that time that knew what we were going through was really important to me. And he's been an amazing key player on Theo's team, wouldn't you agree?
Shawn:
Oh, we both love Dr. Nik. And Theo's team, between his pediatrician in Utah, Dr. VanDenBerghe, and then Dr. Nik in Henderson, Nevada, who is a functional medicine doctor, our team is excellent. And we've searched long and hard to put this team together.
Angela:
Yeah. It was not an easy thing. We're making it sound like everything just fell into place, which it did to a certain point, but there were multiple doctors in between there that. I won't discredit them because they were a part of our journey and led us to where we're at today, but it took us a while to find the doctors that we have now.
Shawn:
And the other thing is with doctors, is getting a collaborative team together.
Angela:
Oh yeah.
Shawn:
Because that's one of the things, that we've worked with different therapists, and some therapists or some practitioners have made it difficult to collaborate with other healthcare professionals. And when we found that, we're like, "Okay, you're cut. You're not part of the team if you're not going to collaborate."
Angela:
We try to make it work. But there was, yeah, a certain OT center in Salt Lake that was not willing to do that when we got the PANDAS diagnosis.
Anyway, leading on PANDAS, we got Dr. Nik and we set into certain protocols with him. We did a gentle gut reset with him. And also at this time I had been hearing from my autism moms ... You'll hear me refer to my autism moms throughout this podcast. They are a group of women that ... I made this group. I have this small Instagram platform. When I started sharing my journey openly, whenever a mom would message me with something, like really great content or great research, I would flag them. And throughout these ... Because I would get a lot of messages here and there. Throughout everything, I would flag these people that had great research to send to me.
And through those flagged accounts, I created this autism mom support group. And it's a group of, I don't know, eight to 10 of us. And we chat every single day on Instagram and now we're all real life friends. But I have the support group and I highly encourage you finding your own. I connected with them, and where was I going with this?
Shawn:
Well, just where the PANADS diagnosis and next steps. Like that's how you found Dr. Nik, through them or-
Angela:
Oh, no, no. Oh yeah, that's what I was saying. Yeah. In this group, we had been talking a lot about FMT, and I brought it up to Shawn. FMT stands for what?
Shawn:
Fecal microbiota transplant.
Angela:
And that was on our radar. I had a few friends that had gone to do it for their children and at this time, Theo is in and out of flares. Our life was, I don't want to say hell, but it was rough. We had some rough, rough months. End of summer 2019 to summer of 2020, it was constant in and out of flares. We'd have a few weeks of a happy, easy-going boy, and then a few weeks of just him being in pain, screaming, crying, self-harming.
Shawn:
Well, and the go-to therapy or treat for PANDAS is antibiotics.
Angela:
Cyclical. So you just do it over and over and over again.
Shawn:
From summer of 2019, when we got the diagnosis, of August of 2019, to summer of 2020, we were-
Angela:
On and off.
Shawn:
... on and off of a whole bunch of different antibiotics.
Angela:
Yeah. And we tried to avoid antibiotics, but his flares were becoming worse and worse each time. And I got to the point where I threw my hands up and I'm like, "Okay, let's try antibiotics." Because everything else we've tried. All of the natural supplements, all of the gut reset, all the things we had done, they were helping, but they weren't helping his pain.
Shawn:
Well, and let's talk about the pain and what that looks like for a PANDAS flare. You had talked about these meltdowns, these flares, and for kids that are verbal that have PANDAS, they talk about how they have things under their skin crawling and kids will bang their heads against walls and self-harm. Theo would scratch himself. He would even scratch his actual-
Angela:
Genitals. I mean, if you talk to a teenager who is verbal and can communicate what they're feeling, they are suicidal. It is so bad, the pain that they're feeling, it has led to suicide cases.
And as a mom, I just ... Well, the way I describe it is, imagine you have this newborn baby who doesn't know how to communicate. And they're on this other side, like a glass window separates you and you can't get through to them. That's what it felt like for Theo to be in a flare. He's in pain. This poor little boy, he's screaming in pain and we can't help him. It was so awful.
Shawn:
We have videos of him just laying on the ground, curled up in a ball. And his little toes and fingers would curl up and he would just scream for hours on end. And just in pain, and nothing we could do to console him, to make him feel better.
And that's why we kept with the antibiotics, because it did add some relief for periods of time, but then his body would become antibiotic resistant and we'd have to change the antibiotic. And we did that for a year. We'd have two weeks of where he was not having many flares because the antibiotic was working, but then they would fade. And so then we'd start another one. And every couple weeks we'd have these horrible flares where he wasn't sleeping, he'd be in pain so much, where his therapy would basically be non-existent because-
Angela:
Yeah, I mean, we would have to cancel speech and OT and all the other therapies. And basically, it would just be his ABA therapist, just trying to provide sensory input to help him be comfortable, to just to be able to function, to be able to eat. And we weren't leaving the house much at that time.
Fast forward a few months. Spring of 2020, we had an incident where ... We'll dive into this on a different episode because I feel like our whole journey with FMT needs to be its own episode. But he had escaped from our house, climbed a few fences. We had the entire neighborhood looking for him, and it was a very traumatic experience. And the cops were called because he had been missing for several minutes and we obviously eventually found him safe.
But we came in our house, after everything had calmed down, and I was just sobbing. I was a mess. And Shawn just looked at me and he's like, "We have to do FMT. We have to." So at that point we came together and we had friends help us and we had a fundraiser. We got the money together. And we did a fecal microbiota transplant scheduled in July. July of 2020 we went and did that in Mexico, and it was life-changing for Theo.
Shawn:
But I think that, like you said, that's a whole other episode, so we'll leave that. But just to sum up where we are currently. We've done a full history of Theo from birth of June of 2015, to now we're up to summer of 2019, so he's four-years-old where he's diagnosed with PANDAS, PANDAS is ... One in 200 kids is diagnosed today with this autoimmune illness. You can find more on the pandasnetwork.org website to learn more about this.
Angela:
Age five, he turns five and we go to Mexico for FMT. He's doing so well. We had basically a flare-free six months. And then in July ... Or not July, sorry, December, 2020, Shawn and Theo were in a car accident.
Shawn:
I was stopped at a red light. We drive a Subaru Ascent SUV, and I was on the phone with my best friend. And I looked in my rear view mirror and saw this truck just coming at us. And it's coming down a hill.
Angela:
He was stopped at red light at the bottom of a huge hill.
Shawn:
And the truck just crushed us. He ended up totaling the Subaru Ascent, which Subaru is one of the best safety tested vehicles on the market. But he totaled that car. If we were in a sedan, he would've killed Theo. Theo was directly behind me.
Angela:
The truck went into our third row.
Shawn:
And so that took all the progress we had made through FMT, which again, next episode we'll talk about FMT and our full experience and the lead up to it and everything. But it took all the progress we had made, where from July to December there were zero flares for Theo. He had none.
Angela:
We had our happy, healthy boy back.
Shawn:
But from December to February, we were even worse than what we had prior to FMT.
Angela:
Worst flare we've ever had, and it was constant, constant, constant. It was very dark times for us. And it was the holidays. I mean, I don't want to say our Christmas was ruined because you can find the joy and we tried so hard to find the joy in every day.
But just to give a brief example. Christmas day Theo kept himself in his room, did not want to come out. Eva literally would carry his present to him. She would open his present and carry it to his door and he would slam the door in her face, he did not care. He was just in so much pain and going through so much inflammation in his little body that he could not function. And that was our holidays. And that was a good three or four months, and we're just barely coming out of that.
Shawn:
Ended up he was clogged up in his small intestine after the accident, and that was what was causing a lot of the pain. Basically, your nervous system has your parasympathetic and sympathetic. Parasympathetic and sympathetic are your fight or flight or your rest and restore.
The accident sent him back into fight or flight mode. And so when you're in fight or flight mode, your digestive system stops working. And so that's what had happened with Theo. When we were in the ER, we got him all cleared out and then we were referred to a naturopathic.
Angela:
Yeah, we started doing some homeopathy treatments and he's been in extensive chiropractic care the last few months since the car accident. We just have a whole team of great people, but right now he's in such a great place. Let's see, what's the date? May 1st, 2021 now. I think that's a good little recap of where we're at and Theo's whole history. Was there anything major that we missed? Obviously we'll dive in deep into more episodes onto each treatment that we've done for Theo.
Shawn:
Well, and not only that, but our personal experience of how we came to decide on treatments and our own personal journey of finding answers for ourselves in our own personal growth and self-development and self-actualization. So tho that will be stuff that we cover.
In the next episode we talk about, will be about the fecal microbiota transplant and how we came to decide on that and our whole experience in doing that. Going to Mexico and why it's not approved in the US. But that is where we are today, Theo's history from birth until modern day. And we hope that you will join us for the next episode.
Angela:
Thanks for being here.
Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva, my little brother is Theo and my mom and dad are Shawn and Angela.