Actress Jamie-Lynn Sigler is finally getting some answers, after her 10-year-old son, Beau, spent the last four weeks hospitalized for what was initially thought to be simply a virus.
She wrote: “4 weeks ago, what seemed like a normal virus for our son, turned into a nightmare. Beau has what we believe to be, ADEM. To say this has been hard, is an understatement, and I’ve never felt more broken. But I have also never felt more love.”
ADEM is a rare and severe inflammatory autoimmune disorder affecting the central nervous system. It often follows a viral or bacterial infection.
According to the Cleveland Clinic, the inflammation from ADEM can lead to symptoms including headache, confusion, weakness, and numbness. The disease can cause damage to the brain’s myelin, the protective covering that surrounds nerve fibers.
During an Aug. 6 episode of the “MeSsy” podcast she co-hosts with Christina Applegate, the “Sopranos” star gave further details on the health update, noting how important it is to “trust your intuition.”
She recalled Beau’s pediatrician initially telling her husband, Cutter Dykstra, that their son had a virus before he spiked the high fever. Multiple hospital visits and unanswered diagnoses followed.
“Nobody could understand why he was getting worse and not getting better. It was and has been like the darkest, hardest, most [expletive] thing I’ve ever been through. Every time you would get, like, a little bit of good news, you would get slapped in the face with something else,” she wrote.
Sigler said she knew in her gut something was wrong. After multiple ER visits and tests, she made an appointment with an infectious disease specialist. En route to the appointment, Beau started “screaming in pain in a way that no mother should ever see her kid scream.”
Back at the hospital and “still screaming through morphine,” Beau had a brain scan, went through an MRI, and had a catheter put in before he was ultimately diagnosed with the rare disease. In the process, he also began losing the ability to use his legs and mouth.
“We got transferred out of the ICU because his vitals were stable, which is a win. We’re in a rehab floor now, where he will be for at least another month as we try to see what the trajectory of his recovery will be. My win yesterday and today is [that] he’s regained his ability to walk. It’s a miracle. It’s amazing. His body is strong. It’s an example of healing.”
Despite making physical improvements, Sigler says her son developed “severe psychosis” in the process, causing him to repeatedly discuss “different obsessions” or go on rants.
On social media, Sigler expressed gratitude and appreciation towards loved ones and the medical professionals who helped and continue to assist Beau throughout his health journey.
“The doctors, nurses, and [therapists] have been INCREDIBLE here, and we have the highest of hopes for our son that he makes a full recovery, but we also know that whatever life turns into, we have a [expletive] army around us, and we will be ok,” she wrote.
“The way our friends and family have come to our rescue during this terrible time has been one of the most incredible things to experience. Maybe I could receive it because it wasn’t for me, it was and always will be about Beau. The power of love, community and prayer is so real.”
She went on to ask her followers or others diagnosed with ADEM to share their experience, as her family has been left with many questions and a great deal of uncertainty.
“My son always used to write me little texts from his little Apple Watch being like, ‘I wish I could take your pain away from you mom. I wish I could take this away from you. I would die for you. I love you … The three things he has wrong are issues with his bladder and his hip flexors and his feet—and that’s me. I’m thinking, ‘My son’s taking away my pain.’”
