What is PANDAS? with Mara Myers, R.N. | EDB 277
Mara Myers shares her son’s journey with the autoimmune neuropsychiatric disorder known as PANDAS.
Mara Myers is a registered nurse, and the mom of a young son with PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. According to the NIMH: “a child may be diagnosed with PANDAS when: obsessive-compulsive disorder (OCD), tic disorder, or both suddenly appear following a streptococcal (strep) infection, such as strep throat or scarlet fever; or, the symptoms of OCD or tic symptoms suddenly become worse following a strep infection. The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor or vocal tics or both and obsessions, compulsions, or both. In addition to these symptoms, children may become moody or irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones.”
Mara can be contacted through her family’s practice: www.spinesolutionsfl.com
For more on PANDAS: www.nimh.nih.gov/health/publications/pandas
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FULL TRANSCRIPTION
DR HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. Today we are excited to be speaking with Mara Myers. We are going to discuss a lesser known diagnosis of which Mara is an expert, and it’s called PANDAS. Welcome, Mara.
MARA MYERS (MM): Thank you.
HR: Mara, introduce yourself properly so our audience will know who you are.
MM: My name is Mara Myers. I am a mom of three. I was a nurse for 20 years, not in pediatrics. I did trauma at Ryder Trauma down at Jackson.
HR: And tell us about your son.
MM: So my son back in the summer of 2021, had a febrile seizure and had some kind of infection that we weren’t sure of, and was sick for about seven days. And doctor went to the doctor a couple times, and she they said it was a viral infection. So we left it at that and we moved on. And all of a sudden, I would say a month later started developing all these kind of bizarre neurologic symptoms. He’s seven years old. He was six years old at the time, which happens to be the normal onset for this. So going back, he started developing an eye blinking. Then he started with twitching of his head. So I called the doctor and they said, Well, he probably just developed. He has Tourette’s. Then some other weird symptoms happen. They said he has probably ADD in autism. I said, Well, why did this come about all of a sudden? And they said, you know, he’s fine. I kept reading and I said something’s not right. He’s developing all these neurologic, he went from being a perfectly healthy, normal boy, to then having an infection, and then now developing crazy tics and twitches and movements.
HR: So I’ll interrupt you here because I wanted to set the stage for our audience is a devoted mother. The doctors can’t help her, her child’s developing these strange neurological things. And you become a pioneer and an expert in what is now known as…
MM: PANDAS.
HR: PANDAS. Tell our audience what that is, now that you know more.
MM: It’s a sudden onset of neurologic symptoms coming from post strep infection, or also microplasm, can also cause it, which is one of the very high toxic levels that he had in his body. So it’s an auto immune, that the body is reacting to causing these neurologic tics and OCD and behavior changes. I had no idea.
HR: Wow, what a journey what a journey I had. Who did you find to be your greatest allies during this time?
MM: So the funny story is that I — my oldest son is 13 is 12 was 12. At the time, he plays baseball with another mom and she saw my son and she said, what’s going on with him? She happens to be a pediatric ER doctor. And she did her thesis paper on PANDAS. She’s like, I think he has PANDAS. I said, what is that? So I started researching and my pediatrician everybody blew it off. So I my husband is a surgeon at Broward health. So I contacted one of the pediatric neurologist at Broward health and he said, Alright, let’s work up an EEG. Let’s do an MRI by brain, let’s sedate him and do all these tests. And this is, this is how we came about by her her idea of thinking I did a research paper back in medical school and I think it’s PANDAS.
HR: Wow, wow. What advice would you have for parents who might be going through this with a mystery disease?
MM: Never stop. I had pediatricians tell me, Well, he’s autistic. And I said, Well, you know, he’s made it six years without any autism symptoms. And then he gets sick. I said, you know, maybe it’s not autism. Maybe he has something else. Maybe I just felt in my mom heart that something else was wrong. It didn’t seem right.
HR: What a tough what a tough goal it is. It’s a tough go when you don’t know what it is. I remember when my own daughter had some we didn’t know what it was many, many years ago. And they threw up the CAT scan and they were all just said, I have no idea what this is. And when you become a pioneer in something, it’s tough stuff. Where can people go to learn more about PANDAS?
MM: I mean, so I wound up getting finding a doctor at Cedar Sinai in LA that took my case took our case on because I wanted her once I got all the levels back and the pediatrician, that pediatric neurologist here was like, Oh, why I didn’t think it was and it’s pandas look at all these high levels that he has. I just started researching and, you know, she, I just been doing it through doctors. But I’ve also gone on to Facebook sites, where I just like, shared my story with other moms. I’m not really part of any big organization. But there’s a lot of research out there that if you type it in, you could find it on the internet.
HR: And how is the young man doing today?
MM: He’s good. He actually after we gave him a heavy dose of — the cure is antibiotics. So after we gave him the first time, antibiotics, all the ticks miraculously went away. As crazy and fast as they started. They went away. It was the weirdest thing. So over this summer, he actually got sick again. And I was paranoid. I called the neurologist I have his cell phone and he said No, he’ll be okay. He’ll be okay. We were out in Hawaii. And sure enough, the tick started again. And so I hurry I got the pediatrician to call and antibiotics. We did it again. And the tics are gone again. Wow. So that was the second flare up, we knew exactly what it was.
HR: I think maybe you want to write a little book.
MM: I know it’s it’s crazy as fast as the be symptoms. I mean, he went from these look like he was having seizures with these motions and it breaks your heart. I was hysterically crying. My poor baby, you know, can’t control the jerking in his head. And I you know, I broke down at a birthday party thinking that you know, they’re going to make fun of him because he’s constantly moving and twitching. And then a simple antibiotic and he’s fine.
HR: And what did the EEG show? Did they show anything when they nothing?
MM: He was not having seizures.
HR: Well, is there anything we haven’t covered that you’d like to cover for our audience out there?
MM: Now just be persistent with you know your child. If there’s something you feel is not right, just keep pushing. If it’s not one, listen, my husband’s a doctor. I come from a medical background. But not everybody knows everything.
HR: Its been a pleasure to talk to you. And thanks for sharing with our audience all about pandas. If a parent out there wants to get in touch with you and how might they do it?
MM: I’ll give you my my I’ll put up our website. My husband’s a spine surgeon you can reach out I run the practice. I would be happy to help anyone it’s honestly become my passion. I would love to share I’d say listen, research do your research figure it out. It’s my my son had every single symptom, every single symptom everything that you could see on the website that describes pandas he was fit it to a T. So I would love love to share and help and
HR: Mara what is the one thing you’d like all parents to know about PANDAS.
MM: PANDAS doesn’t discriminate against any kid, it happens to just be an auto immune response your body produces so it could happen to anyone. If you start to notice your child is acting different after getting sick. You should give the PANDAS a consideration for being a possibility.
HR: Mara been a pleasure to see you today. Thanks for sharing all about PANDAS with our audience. And we hope to have you back again at different brains sometime.
MM: Thank you
