The 44-year-old mother of two shared how she is navigating life after her eldest son was diagnosed with ADEM in the upcoming Tuesday, May 12, episode of Amanda Hirsch’s Not Skinny But Not Fat podcast.
Acute disseminated encephalomyelitis (ADEM) is a rare inflammatory condition that affects the brain and spinal cord. Sigler described the condition as encephalitis.
“He got a random virus at camp and instead of his body,” the Sopranos star said of her 14-year-old in a preview clip shared exclusively with PEOPLE, adding that “lakes and camp” don’t seem to be the best mix.
“Instead of making antibodies to fight the virus, his body made dumb antibodies and attacked itself,” she explained.
Sigler shares Beau with her husband, Cutter Dykstra. The couple welcomed Beau in August 2013 and married in 2016. They are also mom and dad to his brother, Jack Adam Dykstra, who was born in January 2018.
The Mob Town actress recalled how it took approximately a week for doctors to find out what was wrong with Beau after he exhibited symptoms such as a high fever and loss of appetite. Before doctors revealed the diagnosis, Sigler said her “mother's intuition” knew all along that something wasn’t right.
“I remember when we were leaving the ER the day before we finally got admitted, they're sending us home again and my feet literally didn't want to move,” she said. “I was like, I know in my soul that there is something seriously wrong that they are missing.”
“But what finally got us admitted was when he lost the ability to urinate, and that's when they were able to really understand what was going on,” Sigler continued. “And that was the most painful and traumatic time of my life, but also a moment where I felt more love than I've ever felt and support... I kind of learned who I am and what I've become in that moment.”
The actress added that the situation helped her to become a better advocate for her son’s needs.
“Even when with the doctors, right? Like you're at their mercy,” she said. “They're saving your child's life, but also my opinion mattered. Like, I had a say in his care. I had a say in what they were doing. And he is a miracle.”
Looking back on the experience, Sigler told Hirsch, “There were times that we all thought we were going to lose him.”
She also called Beau “a fighter,” noting that the last couple of years haven't "been easy for him.”
“His recovery has been really hard,” she said, adding that it feels like he’s become a different kid since the incident.
“And that's been hard for me as a mom,” Sigler said. “It has, and I'm trying to give myself as much grace as I can through that because it's like you have this version of your kid for so long, for 10 years. Like I know who Beau is. I know him.”
During Beau’s recovery, “he was in a severe state of psychosis for a while,” before behaving as if he were “Buddy the Elf,” Sigler said.
The mother of two also said that while her eldest began seeing everything as “beautiful” and “great,” it was “a lot” and he was “bullied so much at school for it and it was really devastating.”
“But he's also my hero,” she said, adding that she placed him with a therapist who “helped us as a family remind Beau of who he is.”
Angel Saunders
https://people.com/jamie-lynn-sigler-details-life-since-son-beau-was-diagnosed-with-adem-11972014
Jamie-Lynn Sigler has learned to live with pain since being diagnosed with multiple sclerosis when she was 20 — but nothing prepared her for the kind of anguish she faced last summer when her 11-year-old son Beau was hospitalized with a rare, life-threatening autoimmune condition.
"Those were the hardest days I've ever had in my entire life," Sigler, 43, tells PEOPLE. "It was probably the most helpless I've ever been."
Their crisis began last July after her "healthy, active" son suffered a week of high fevers and headaches that culminated in his being unable to urinate. "He was screaming in pain," The Sopranos actress says.
Beau was admitted to Dell Children's Medical Center in their hometown of Austin, Texas, and diagnosed with a rare autoimmune condition known as acute disseminated encephalomyelitis, or ADEM, which causes inflammation of the central nervous system and can develop after a viral or bacterial infection.
Over the next two weeks in the hospital, "he got worse every day," Sigler says. "He lost his ability to walk, and then to talk. Then he couldn't eat or move his mouth." He lost 25 lbs. "There was nothing recognizable about my son."
Doctors put him on a 24-hour IV of epinephrine to keep him alive because the inflammation in his spine and brain prevented him from regulating his own blood pressure and heart rate. "My husband and I would look at each other like, "Is this really happening?'" Sigler says of her husband of nine years, Cutter Dykstra. "Truly, we thought he was going to die."
For more than a month, Sigler stayed at the hospital by Beau's side while Dykstra cared for their younger son, Jack, 7, and she drew upon her years of experience managing the challenges of MS.
"It was wild to watch my son have neurological issues that mirrored mine in very many ways," she says. "My experience understanding the body and inflammation and the brain helped. From 6 a.m. till 8 p.m., I was on it. I was a coach. I would speak to him and tell him he could do it." But, she says, "the nights were when I could fall apart and just be a mom and be completely heartbroken and terrified."
Sigler relied on family and friends for support, including her MeSsy podcast co-host Christina Applegate. "She was there for me in a really scary moment. We sat in prayer together."
Asking for help doesn't come easily to Sigler. "My friends joke that on my tombstone it's going to say in quotes, 'I'm fine.' But for the first time in my life I was actually able to accept help because it wasn't for me — or it didn't seem like it was for me in that moment — it was for Beau," she says. "To realize how loved and supported you are, it's something I'm going to take with me for the rest of my life."
And then, 33 days after he was admitted, Beau was able to walk out of the hospital. "The care that we received, the attention that every family receives, was unparalleled," Sigler says of Dell Children's.
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At first, "we were just in a constant state of gratitude." But, she says, "there's still a road of recovery." Beau is back in school, back on his baseball team and is working with a personal trainer to regain his strength. "There's some residual things physically we deal with, and because of what he sees me deal with, he knows I understand. I know it's hard to not be able to do something that you used to be able to do."
The psychological toll of the trauma can be an even greater challenge. Although Beau doesn't remember anything from his hospitalization, "mentally he went through something profound and he's trying to figure out how to integrate that back into life and still be the 11-year-old little boy he was," Sigler says. "When you have a near-death experience, there's an intense amount of gratitude you have for life, and he constantly wants to express it, which is beautiful. He wants to go up and tell everyone he loves them and how amazing they are. But for another 11-year-old, that's not how you do things."
She's had to adjust as well. "My son is different than the 10-year-old Beau that entered the hospital in July," says Sigler. "We joke, calling him Beau 2.0. The person that's really benefited from what happened this summer is my little one, Jack, because they don't fight anymore!"
Beau is also learning guitar and has developed a love for songwriting: "It's been how he channels his emotions."
Stress can exacerbate a disease like multiple sclerosis, but Sigler says helping Beau recover has actually given her strength. "Sometimes when you take the focus off yourself and make yourself a service, your body shows up for you," says Sigler, a spokesperson for Novartis who developed a guide with the drug company to help others manage life with the degenerative neurological disease. "There's been no big fallout. I am okay. I'm not struggling physically like I think a lot of people anticipated."
And, she says, she's been inspired by watching her son. "I saw the way a body can heal, and that was something I needed to see. And I saw Beau's commitment to his healing. That's added another layer of discipline I've had for myself and my health."
Sigler, who's in the process of writing a memoir, says that as traumatic as the experience was, it "slowed our family down in such a beautiful way. We are so present with each other. There's just not a lot more we need than being at home, just the four of us."
Eileen Finan
https://people.com/jamie-lynn-sigler-fell-apart-terrified-fearing-son-was-going-to-die-exclusive-11691337
Jamie-Lynn Sigler's son Beau has finally left the hospital.
The Sopranos actress, 43, shared a heartwarming video on Instagram over the weekend of her 10-year-old son Beau “busting out” of the hospital to cheers from medical staff after being diagnosed with the rare inflammatory autoimmune disorder, acute disseminated encephalomyelitis (ADEM).
“After 33 days, we are busting out of here! My brave boy, you are a walking miracle,” Sigler wrote alongside the clip shared on Aug. 16. “The rest of this story will be Beau’s to tell, if he chooses to one day.”
“Thank you to the INCREDIBLE staff at Dells Children’s Hospital. The way you take care of your patients and the way you guide their families through the process, I just don’t have enough words,” she continued. “I’m in awe of your patience, dedication, and expertise … But, no offense ... I hope we never see you again✌️.”
“Thank you all for the love and prayers. They worked. 🙏🏻🩷,” Sigler concluded.
The preview photo of the post showed Beau standing with his back to the camera in what appeared to be a waiting room pointing to himself as a caption above him read, “Heros this way,” with an arrow pointing to the left.
In the video shared, a smiling Beau walked down the hospital corridor to loud cheers from medical staff and patients, who lined each side of the corridor as they watched him leave. At one point, the 10-year-old skipped down the hallway as he high-fived some of those cheering him on.
Following Beau's hospital exit, Sigler also reshared a post on her Instagram Stories about having a “Lifequake,” defining it as, “A significant, sudden and unexpected shift in the trajectory of your life that initially feels devastating but has the beneficial outcome of catalyzing personal growth, transformation and rebirth."
Her latest hopeful post regarding Beau comes after revealing his “nightmare” diagnosis on Instagram on Aug. 6.
“4 weeks ago, what seemed like a normal virus for our son, turned into a nightmare,” she wrote alongside a photo of her and Beau smiling at the time. “Beau has what we believe to be, ADEM.”
ADEM is an acute, rapidly progressive autoimmune disease that affects the brain and spinal cord, which is typically caused by inflammation due to a prior infection or immunization, per the National Institute of Health.
“To say this has been hard, is an understatement, and I’ve never felt more broken,” Sigler continued, adding, however, that she has also never felt more love” from her supportive friends and family, including her husband Cutter Dykstra and son Jack, 6.
Sigler shared on her MeSsy podcast with Christina Applegate that ahead of Beau being admitted to the hospital, his symptoms included having a 105-degree fever, "screaming" that his head hurt, and being unable to eat and urinate.
“It was and has been like the darkest, hardest, most f---ed up thing I’ve ever been through,” Sigler said on the podcast on Aug. 6, adding that she thought her son was "dying."
Escher Walcott
https://people.com/jamie-lynn-sigler-son-beau-leaves-hospital-after-33-days-autoimmune-disorder-diagnosis-8697978
The psychological toll of the trauma can be an even greater challenge. Although Beau doesn't remember anything from his hospitalization, "mentally he went through something profound and he's trying to figure out how to integrate that back into life and still be the 11-year-old little boy he was," Sigler says. "When you have a near-death experience, there's an intense amount of gratitude you have for life, and he constantly wants to express it, which is beautiful. He wants to go up and tell everyone he loves them and how amazing they are. But for another 11-year-old, that's not how you do things."
She's had to adjust as well. "My son is different than the 10-year-old Beau that entered the hospital in July," says Sigler. "We joke, calling him Beau 2.0. The person that's really benefited from what happened this summer is my little one, Jack, because they don't fight anymore!"
Beau is also learning guitar and has developed a love for songwriting: "It's been how he channels his emotions."
Stress can exacerbate a disease like multiple sclerosis, but Sigler says helping Beau recover has actually given her strength. "Sometimes when you take the focus off yourself and make yourself a service, your body shows up for you," says Sigler, a spokesperson for Novartis who developed a guide with the drug company to help others manage life with the degenerative neurological disease. "There's been no big fallout. I am okay. I'm not struggling physically like I think a lot of people anticipated."
And, she says, she's been inspired by watching her son. "I saw the way a body can heal, and that was something I needed to see. And I saw Beau's commitment to his healing. That's added another layer of discipline I've had for myself and my health."
Sigler, who's in the process of writing a memoir, says that as traumatic as the experience was, it "slowed our family down in such a beautiful way. We are so present with each other. There's just not a lot more we need than being at home, just the four of us."
Eileen Finan
https://people.com/jamie-lynn-sigler-fell-apart-terrified-fearing-son-was-going-to-die-exclusive-11691337
Jamie-Lynn Sigler's son Beau has finally left the hospital.
The Sopranos actress, 43, shared a heartwarming video on Instagram over the weekend of her 10-year-old son Beau “busting out” of the hospital to cheers from medical staff after being diagnosed with the rare inflammatory autoimmune disorder, acute disseminated encephalomyelitis (ADEM).
“After 33 days, we are busting out of here! My brave boy, you are a walking miracle,” Sigler wrote alongside the clip shared on Aug. 16. “The rest of this story will be Beau’s to tell, if he chooses to one day.”
“Thank you to the INCREDIBLE staff at Dells Children’s Hospital. The way you take care of your patients and the way you guide their families through the process, I just don’t have enough words,” she continued. “I’m in awe of your patience, dedication, and expertise … But, no offense ... I hope we never see you again✌️.”
“Thank you all for the love and prayers. They worked. 🙏🏻🩷,” Sigler concluded.
The preview photo of the post showed Beau standing with his back to the camera in what appeared to be a waiting room pointing to himself as a caption above him read, “Heros this way,” with an arrow pointing to the left.
In the video shared, a smiling Beau walked down the hospital corridor to loud cheers from medical staff and patients, who lined each side of the corridor as they watched him leave. At one point, the 10-year-old skipped down the hallway as he high-fived some of those cheering him on.
Following Beau's hospital exit, Sigler also reshared a post on her Instagram Stories about having a “Lifequake,” defining it as, “A significant, sudden and unexpected shift in the trajectory of your life that initially feels devastating but has the beneficial outcome of catalyzing personal growth, transformation and rebirth."
Her latest hopeful post regarding Beau comes after revealing his “nightmare” diagnosis on Instagram on Aug. 6.
“4 weeks ago, what seemed like a normal virus for our son, turned into a nightmare,” she wrote alongside a photo of her and Beau smiling at the time. “Beau has what we believe to be, ADEM.”
ADEM is an acute, rapidly progressive autoimmune disease that affects the brain and spinal cord, which is typically caused by inflammation due to a prior infection or immunization, per the National Institute of Health.
“To say this has been hard, is an understatement, and I’ve never felt more broken,” Sigler continued, adding, however, that she has also never felt more love” from her supportive friends and family, including her husband Cutter Dykstra and son Jack, 6.
Sigler shared on her MeSsy podcast with Christina Applegate that ahead of Beau being admitted to the hospital, his symptoms included having a 105-degree fever, "screaming" that his head hurt, and being unable to eat and urinate.
“It was and has been like the darkest, hardest, most f---ed up thing I’ve ever been through,” Sigler said on the podcast on Aug. 6, adding that she thought her son was "dying."
Escher Walcott
https://people.com/jamie-lynn-sigler-son-beau-leaves-hospital-after-33-days-autoimmune-disorder-diagnosis-8697978
