The newest member of the TSC Talks team, Amora Correa, wrote this blog expanding on issues discussed during the podcast, “Parenting and Healthcare” featuring Jill Woodworth and Brooke Alisha. We are grateful for Amora’s help and her writing talent!
Brooke Alisha and Jill Woodworth co-host TSC Talks Facebook Live event on 6/18/2020
Our Facebook Live event was a successful one where Brooke and Jill got to share details of their own experiences where they got up close and personal. Many of us can relate to the hardships that life can bring when dealing with health issues ourselves and with our loved ones.
Jill and Brooke discussed parenting children and adolescents with challenges related to neuropsychiatric conditions like Tuberous Sclerosis Complex, autism or other developmental disorders where there’s a large component of mental health issues that are combined with other physical health issues, which tend to make things really complicated. They also talked a little bit about alternative medicine and some of the things that they’ve found to be useful.
First and foremost Jill stated, “We’re not doctors. We’re not here to treat, cure, or medicate. We are here to share our personal lived experiences. I’ve been a caregiver for 24 years. I have five children, three of them are affected by Tuberous sclerosis complex. So I do, and I think Brooke also has a wealth of experience as well. We’ve got a lot going on and we want to share it so we can both give you awareness as well as some validation, support, and hope!”
Brooke is a TSC advocate, the parent of a teen with TSC, as well as being an adult living with TSC herself. Here, she introduced herself and gave a little bit of her background.
“I was diagnosed at 18 with Tuberous Sclerosis Complex, and so at that point, I was told I’d be in the wheelchair with the age of 30, my body would fight off any fetus if I would get pregnant, it was just pretty much like “your life’s over, have dogs and travel. See ya.” Then as things went on, I did get pregnant. I went to hair school. I barely finished, I had to take a medical leave because my kidneys were so bad. I was declining extremely quickly. As time went on I also had a son, I kept doing hairstyling, but you know, I was definitely on autopilot a lot. At some point in my life I had three jobs. I’m still a hairstylist and I’ve been one for 17 years.”
“As Jill said, a couple of years ago I found something that has helped my quality of life. It does not care, medicate, it does not treat. However, that’s what we’re here to talk about.
You’re put in situations you’re not prepared for. You’re put in situations that you could never imagine that you would have to choose some of the choices that we’ve had to make as parents, as caregivers.”
“I really look up to Jill because I look at what she’s done with her children and I always asked her questions. I think I met you at an event and then we just kind of like started communicating a little bit more. it’s an ongoing thing but never ends. So we wanted to share with you things that we’ve been through And things that have worked for us and things that have not worked for us. And I’m not saying it won’t work for you. However, this is where we’re at, and we’re here to share it.”
Tuberous Sclerosis Complex is a genetic condition that causes benign tumors to grow in all the major organs of the body and it can wreak havoc at any moment. There’s a range of effects. So, some people are very mildly affected and might not even know they have it until they have a child with it. There could be a range of effects within families. There is a mental health component called TAND, which is Tuberous Sclerosis Associated Neuropsychiatric Disorder. And it’s been said that about 80 to 90% of people that have TSC have some component of TAND that can many times be the most challenging aspect of Tuberous Sclerosis over time. And if you think about it, it’s a condition that causes benign tumors to grow. Think about the brain, you know, we’re talking about a systemic effect. So if one part is affected, the other parts are going to be affected, whether it is shown, you know, you can see it visibly, or it’s an internal thing, and that’s really challenging because a lot of our loved ones are people affected. We don’t know what’s going on inside it, we can’t see it. That’s hard because there’s a lot of interpretation by people that don’t have a lot of information.
Jill shared a little bit of her impactful personal experiences:
“I ended up getting divorced. I ended up moving out, my son who was 13, he really struggled with a lot of behavior to the point where he was really unable to progress academically. We tried pretty much everything, different classrooms, medications, different specialists. And he was just very aggressive. And so it became a situation where it was volatile. He would come after me and he would be threatening towards the sisters. There were several occasions where I had to call emergency mental health and I had to have him placed in psych hospitalizations. And I had been through it with my older daughter and when I saw, I knew what I was getting into.”
“And we kind of had to draw a line in the sand with his behavior and worked with a counselor and some in-home services. And what we ended up doing was kind of saying, “if you do this one more time, we’re going to follow through.” To make a long story short, he went through three psych hospitalizations. The first one was in a hospital and that one was really just a holding place. I didn’t feel like it had much effect and he wasn’t given follow up services. And then after that, he went to an acute behavioral inpatient treatment center. It was in a home type setting and there is a lot more peer to peer connections. And his therapist was kind of integrated into the program and we came in as well.”
“He was able to connect the dots. And from there on out, kind of a light bulb went on. And he became aware of how he was treating people. We filmed him, he was shown the films of himself being aggressive. And that kind of helped him turn a corner. We’re talking about a kid that’s got a cognitive disability as well. So for him to be able to make that realization, and start to change his behavior from the inside out instead of being talked at you know.”
“He had many reasons to be mad. You know, I kind of try to look at the whole situation and everybody’s role in it and understand that we’re all just trying to do the best we can and figuring it out and not assigning blame. That’s really painful because you’re watching your kid attack you, but also you know why. So it was brutal putting them in those placements, but I will say that it helped him turn a corner. We’ve had a lot of challenges past that, but after that point he started to own his own behavior. So that’s been a success story.”
“I know that many of you out there, I’ve talked to you, I’ve heard, seen your post, I’ve read them. I know that some situations are so complicated. I’d say mine still is in many ways. So I’m not going to go into more stories than that, but I know that what we did might not work for you, but that’s kind of where we got to the psych hospitalization point. So I’m gonna let Brooke share a little bit about what she’s been through recently. “
Brooke also shared some experiences of her own and her daughter, and where she stands right now:
“It’s not nice to hear, but it’s nice to hear you’re not alone. And it’s nice to hear that you did get to that point where you can not always breathe because there’s always something coming up. That’s where I’m at right now. To be honest, we’re trying to figure out how to keep her alive, how to keep her quality of life amazing, how to keep her healthy, and thriving in life for her, like what’s going to make her flourish and have a purpose.”
“I wasn’t really aware of TAND, having TSC my whole life I’ve never dealt with that. I was starting to recognize what was happening and as I was getting better, she was definitely declining. And so then when puberty hit is kind of when it hit for us. the TAND really came out and I was like, “What is this?” You know, it just kind of hits you like a bus. When the behaviors had happened, they were extreme. And I didn’t know what to do.”
“So here’s an example. We have like the most perfect day as a family and then all of a sudden, we’re on the way home. She wants her laptop charger which I don’t want her to have internet very much because she is overstimulated. And we’re like, “no, someone else needs to use a charger,” and that’s all I said. All of a sudden my stuff gets thrown out of my car, off the side of the highway, down in the ditch. She’s trying to choke me from behind. We get out of the car. We grab all my stuff. And we’re an hour and a half away from home. I’m like, “how are we supposed to get home?” You know, “what are we supposed to do?” It was such a traumatic scene. I ended up sitting in the backseat with her and videotaping her the whole ride home. Because I said, “You’re not going to just act like this and think that this doesn’t happen.” She was punching my car. She did everything she could to just avoid me saying that someone else needed the charger and she was at 100%.”
“I can talk a little bit about this recent behavior that kind of brought us to where we’re at. I know that she might watch some of these sometimes, so I just watch what I say because I know that she has brain trauma. She had brain surgery at three, she also has TAND, but she has the behaviors from not having that right frontal lobe making executive decisions, impulsivity. As a normal teenager, you don’t make the best decisions, but hers is just so random.”
“Nothing was warning signs. So for us, it’s just kind of like I said, it hits you like a bus. So all of a sudden like a few weeks ago I was ready to go to bed. I was laying in bed and I hear her, “if you don’t wake up now I’m gonna bug you all night till you can’t sleep,” and I’m like, “Why is she even mad like what is happening?” She wouldn’t go to sleep. Then I hear something thrown in the kitchen. I have big high top chairs and she was throwing those. She got out an object and tried to hurt herself, and threatened all of us. And so I decided I’m going to take you to my dad’s for a couple of days just so you can calm down. I don’t want to take you there because you’re being bad. It’s not like a privilege. But I don’t feel safe with you here at this moment.”
“So as we’re headed there, things escalated. She got more fearful. We call a couple of different people. She admitted to them what she had done, out of her safety, we were removing her. And then they’re like, “we have to report this,” and they’re right. She will say, “I’m going to hurt myself,” just like she would say, “I want chocolate milk.” That’s how I would explain it to somebody. She throws around that threat a lot. And so, um, I don’t know where this comes from, because we don’t talk like that. I couldn’t not take it seriously anymore.”
“We pulled over, sheriffs came, she was running from them and she ran through my passenger side to my driver’s seat. Luckily the car was off. But we had to regretfully admit her that night to a place three hours away. With COVID going on, I couldn’t see her.”
“I was hopeful like, they would keep her for a week, get her stabilized, get some group therapy, have a plan. And that’s not what we were given. We were given a new med that they didn’t look into that could have made her manic within a week, they took her off four other prescriptions that they didn’t even really look at, immediately that needs to be weaned off of and I told them, you know, if she comes home and something happens, this is on you. I don’t feel safe with her right now in my home.”
“I can tell you right now, I know the hardest thing before that was to have to put her through brain surgery, because I didn’t know if I was making the right decision to stop all those seizures and then be left with the regression, the social regression and all the regression from that that it causes. However, at that point, we had nothing to lose. I was kind of back there but you know differently and watching her go away, you know, when I couldn’t be with her, I was literally like, I don’t know how I function. it was the hardest thing I ever had to see. And it was nothing I wanted for her. But I knew that he had to do something because I didn’t know what else.”
“It’s hard to not be able to help your own child. And time and time again, I’m reminded that I can’t fix this. I’m fighting a brain. I am not in control. And that’s been really hard for me because I definitely was a control type person. But as I realized as life goes on, and TSC gets worse, I’m throwing my hands up, like, I will fight to the nail for that girl all every day.”
“I was angry for the first couple of days. And then I was like, “No, she needs to be there. This is good.” And they’re like, “Nope, she’s coming home. We put her on a new med,” and I’m like, “What? Is that safe? Is that okay?” And then you see worse things when you’re there. So it’s not really good and I’m not trying to ramble, but to me putting people that have a mental Illness and have that mental health issue that you can’t see, like we said, it’s not physical, you just throw them with the people that are in trouble. And it’s different. They’re not bad people, you know, they’re not bad kids that are looking and seeking to steal or to destroy. This just happens to them and there’s no control over it. And so I feel like they really get lost in the cracks.”
Anybody that’s in a psych hospital has probably had unbelievable amounts of trauma and you never know the story that led there. Jill acknowledges that there isn’t an efficient plan in the healthcare world to deal with individuals suffering from TSC, and sometimes other neuropsychiatric conditions.
“Brooke and I are sharing the ongoing trauma that can occur and living on the edge and the fact that the systems that are in place for this type of situation, they’re not adequate for an individual that has a situation like this. Cognitively they might be functioning at the level of an eight or nine-year-old, but they’re older kids or kids that are at the same age, but their intellects a little higher. And so that’s one piece of it.”
“And then there’s the other piece that often the history of tuberous sclerosis and the connection with the clinic, or the caregiver, the team that provides the close supervision of the neurological component is often not included in the loop, nor is the school. In some cases social workers are therapists but in a lot of situations, that part is on the parent to integrate that and to make sure that everybody’s communicating. Like Brooke shared, her daughter was taken off a medication with probably no communication with her. This happened to my daughter. There wasn’t communication with her neurology team to know the history to know about the types of seizures she had, the vulnerability she had with a medication that could be a pro convulsive. I saw that happen repeatedly.”
“When my older daughter was going through a mental health crisis, she was bouncing from program to program and each time the meds might get changed, or even dropped, so It was like watching a slow car crash. You’re running and you’re trying to catch up with it, but it’s out of your hands. By talking about it, we are illustrating some of the holes we’re up against. We’re forced to make decisions between a rock and a hard place.”
They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Jill states, “Long term polypharmacy issues are incredibly concerning and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities.”
Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC, recently launched a product that, while not designed to treat or cure, is made with hemp components and terpenes and early reviews are phenomenal. It is called Forest Bathing and brings the benefits of the forest, to you! Get information about Forest Bathing at https://tsctalks.com/
“I ended up on a bunch of meds and still “sober” but I felt really numb and disconnected. And so I started coming down off the medication slowly. And I had always been really curious about cannabis. It was a tool for me to really get kind of up and above and over the trauma and be able to process some of it. But there was a stigma with that because I was still involved in recovery programs. And you know, there’s a lot of black and white thought about that type, looking at it as more of a recreational substance that can be dangerous. And I think there is a component of that if you’re not understanding how to use it properly. There’s a huge learning curve, but I was just like, wow, you know, I started to feel like a whole new person. I was really able to do some work. I hate to say it, sounds so corny, but I did a deep work!”
“Through my own process with the medications, I started to really look at what my kids are taking and really knowing that probably all these medications at the same time were going to have a toll on their system. And that’s been part of the reason that I’ve kind of ventured more into the cannabinoid medicine area with the podcast, if anybody’s wondering, and I’ve crossed paths with the cannabis advocate/pioneer Mike Robinson. I remember the first podcast he was on he educated me about cannabinoid medicine. I never even heard the term. I think I probably almost laughed when he first said it. He’d been able to have some success with many, many patients in the compassion program with epilepsy and autism, and using cannabis oils and quite a learning curve.”
“I’ve made some small changes with my son and noticed pretty quickly a difference implementing some cannabinoid medicine and I will do a little evangelism. We have an endocannabinoid system which is a major physiological system in the body and it is responsible for homeostasis, keeping all the other organs going. I really feel like there needs to be a lot more research. Again I’m not a doctor, but if by making a small change or supplementing with cannabinoid medicine you can improve quality of life, then it is worth it.”
Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels.
“I’ve been on it for two years. I’ve not stopped a day. On the first day I didn’t yawn and I was like, ‘Alright, Rayne, what are we doing today?’ And I have a son too. I was just like ready to go! I wasn’t filling my body with caffeine liquid all day just to make myself still and still be tired.”
“And I knew that I had to take care of myself because at some point, when I had gotten those kidney tumors, I definitely was not taking care of myself again. They said, “Brooke, you either have to do this, do chemo or radiation and your tumors will go back or you have to do dialysis.” So I was at that point again, where I had to do something that was going to fill my nutritional gap and fill my body with great things. So then I could in hopes just sleep one night or feel like I had a cleaner energy. My life has transformed. I don’t know where I would have been honestly without my three steps. It’s 100 minerals and vitamins, vitamins at 98% absorption that I take every day. My body’s changed as far as just my mindset. So even just like for me, I didn’t do that for the weight, everybody has a different reason for why they want to do something. For me, it was I needed to be present. I needed to be ready for these aggravated times. I needed to be ready.”
You can find the entire podcast featuring Jill and Brooke here: https://tsctalks.com/podcast/show-notes/tsc-talks-parenting-and-healthcare/
If you have any questions or suggestions or you would like to learn more about Forest Bathing or Thrive, contact us: https://tsctalks.com/contact-us/
Jill Woodworth:
Facebook- https://www.facebook.com/JillWoodworth66
https://www.facebook.com/tsctalks/
Linked In- https://www.linkedin.com/in/jillwoodworth/
https://www.linkedin.com/company/tsc-talks-the-podcast/
Instagram- https://www.instagram.com/tsctalks/
Buy Forest Bathing- https://www.indiegogo.com/projects/time-for-a-walk-in-the-woods#/
Brooke Alisha:
Facebook- https://www.facebook.com/brookey21
Instagram- https://www.instagram.com/_thrivin2light_/?fbclid=IwAR3kyXbWWY2kp_Pzh5lBF7fCKQbx9arJgu7lM-PiCfJj8ZVyu7TQm2FmvJA
Thanks, again, to Amora Correa for writing this blog.