"I can't even describe how bad it was. It was literally like hell," Crystal Luce tells PEOPLE.
An 'outgoing' 9-year-old turns 'overnight' into an angry man his parents don't recognize.Then he gets a shocking diagnosis (exclusive).
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In 2023, Crystal Luce noticed that her daughter was behaving differently - the once bubbly child was withdrawn and angry, withdrawing from friends, school and the world.
“It was a huge nightmare, like she wasn’t there,” the mom told PEOPLE
After searching for answers, Loos' daughter finally received a diagnosis that changed everything
In the spring of 2023, Krystal Loos began to notice that her daughter was not behaving as usual.The formerly bubbly elementary school student appears distraught and withdrawn from school, friends, and the world.
Illinois's mother told the people his girlfriend, Laceay May, losing food he loved, and it's been a lot of food.
"Before that, she was the happiest, funniest, most outgoing kid ever. She never had any problems," Loos, 30, said.
Then, in July 2024, there was a "complete change overnight" and the 9-year-old was no longer "herself".
Although Lacy Mae was diagnosed with anxiety and depression, Luce knew deep down that it was something else.
"They tried to get him on an SSRI, they tried to get him a psychiatrist, a psychologist, etc.," he said."But I just think there's something deeper."
"The night in July came, and it was like she had a psycheted break the night, and she broken into my door. She asked to go to the hospital," Loss continue.
Loos described an incident in which her young daughter would not sleep, felt paranoid, and repeatedly begged to be taken to the hospital to find out what had happened to her.
"It was a big shock, like it wasn't him," says Loos.He had children with severe disabilities.
Although they "went to several hospitals," almost everyone agreed that it was just depression and anxiety.
At that time, Luce's daughter requested admission to the psych ward.
"She's 10 years old, so, but she just wanted to be fixed properly," says Loos.She was now, in the moment, suicidal.
"Sometimes we keep him because he tries to hurt himself or us. Sometimes we lock him in the room with us so that he doesn't do it. He is more of a danger to himself than to us," he said.
Loos, who recently went through childbirth when Lacey Mae's health worsened, says that's when her parents stepped in to help.
"Eventually, she ended up living with my parents because I had a newborn. And I also had a 5-year-old. And my 5-year-old was just scared of her," she says. "He was really scared because she was screaming. It's how I would describe it. She was furious. There was so much anger inside her."
Luce's daughter refused to eat, refused to go to school, and missed more than fourth grade.While many believed that the baby would cause a change in Laci Mae's personality, Luce suggested that it was deeper than that.
"I'm like, 'You guys don't get it.'He ran from home. He was trying to jump from moving cars, like a complete psycho. "I've never seen anything before. Especially as a child and in my childhood I never had any problems before this," he shares.
Lacy Mae was eventually referred to the Behavioral Health Unit.During that time, Loos turned to several Facebook groups for support, asking if anyone had had a similar experience.
"I went to the psychiatrist at the children's hospital, and I literally begged her. I was angry with her. I said, 'Something's wrong. I think it's PANS/Pandas. Can we do more?'They refused to do it."
According to the Stanford University School of Medicine, pediatric acute-onset neuropsychiatric syndrome (PANS) is a clinical diagnosis for children characterized by the sudden onset of neuropsychiatric symptoms, sometimes overnight.They may have symptoms of depression, behavioral regression, irritability, anxiety, sleep problems, and learning problems.
Meanwhile, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) is a subset of PANS, and has five distinct criteria for diagnosis, including "abrupt 'overnight' OCD or dramatic, disabling tics; a relapsing-remitting, episodic symptom course; young age at onset (average of 6–7 years); presence of neurologic abnormalities;" and a recent streptococcal infection, such as strep throat, peri-anal strep or scarlet fever, per the PANDAS Physicains Network.
There is no official test to diagnose PANS/PANDAS, making it difficult for healthcare professionals to determine the underlying cause of symptoms.
So Loos took her daughter out of the mental hospital and looked for a doctor specializing in PANS/PANDAS.Finally, they contacted a specialist in Indiana, Dr. Antoine, and in September 2024, after extensive blood work, Lacy Mae was officially diagnosed.
He was given antibiotics and IVIG (intravenous immunoglobulin) to help his immune system.
“She had multiple infections in her body that had mistakenly attacked her brain,” Loos said. “She had a tick-borne disease. She had mycoplasma, plasma pneumonia. That’s what Dr. Antoine confirmed. This is how we found out what was going on.”
"He put her on antibiotics to clear up these infections, then antibiotics to regulate her immune system, then IVIG to regulate her immune system, then different supplements to normalize her immune system so it attacks the infection and not her brain," Luce continued.
Slowly, the treatment began to take effect, and by December 2024, Roos said, they were "starting seeing each other again."
Loos admits that Tween "still has a lot of episodes after that," but those episodes are less intense.
"I felt so anxious through all of this because I thought I didn't know what to do," she shared."I can't even describe how bad it was. It was absolute hell."
Lacy Mae was also put on antipsychotic medication to help calm her down, and now, more than a year after her diagnosis, Loos said the 10-year-old is "99 percent" herself again.
"There are a few problems and anxieties here and there, but for the most part, since we found Dr. Antoine and got the right medication, he's improved and life is pretty much back to normal," says Loos.
Loos shared a TikTok video showing her daughter's differences to raise awareness for PANS/PANDAS.The video went viral, garnering over 45 million views.
She says parents have since shared their own stories of how their children changed for seemingly no reason.She was able to connect them with resources and explain what they were feeling.
“I want parents to get answers,” she tells PEOPLE.“I want them to know that this is a problem and that they should be seen if your child has similar symptoms.
"When we were going through it, I really struggled because I didn't feel like I could find other parents who were dealing with it," she continues.
Loos wants to educate people about PANS/PANDAS because it's a "widely unknown" diagnosis.
“I don't think it's a rare diagnosis.It's more common than we think,” he adds.“I think it's often misdiagnosed as something else.I just want people to be aware of what everyone goes through when they have PANS/PANDA."
If you or someone you know is struggling with mental health challenges, emotional distress, substance abuse issues or needs to talk to 988, call or text 988 or chat at 988lifeline.org 24/7.
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