Our Real Life PANDAS Story and How We Navigated This Unwanted New Normal

May 31st marks the end of Mental Health Awareness Month. I have made the decision that I no longer want to be made aware of anything anymore. 

I tried many times to write a thoughtful blog post highlighting some helpful tips including toys to use when your child is having a rough time emotionally,  but I could not find the words or the courage to lead you down a rabbit hole. I came to the conclusion that I did not want to be aware of mental health, instead, I wanted to share our story first— our PANDAS story.

Let me just preface our story with a simple disclaimer: I am not a medical professional. Please do not follow my medical advice. This is what we did for our son. Use my blog post as a guide to direct you. I have spoken to many PANDAS parents in three years, and we are all different. Our children are all different. You know your child best, and if your gut feeling is saying that there is something wrong, you're most likely right. I also am not posting this for clout or to exploit my child. Marcello and I both never want another child to experience this again. 

Back in 2020, our son Marcello (who is just awesome by the way!) was diagnosed with PANDAS, he was six years old at the time. P.A.N.D.A.S. is actually an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. PANDAS causes your normal, happy, loving, and playful child to turn into nothing short of a stranger. After three years it seemed like we all had a handle on this mess of a condition, but in early May 2023, Marcello had a bad flare-up, so the entire month had been a series of ups and downs. It was only last night as I got lost in my thoughts while burning the chicken and overcooking the potatoes that I realized that there are more parents out there in the same boat as us, and I have to speak up. 

In the hospital with Bluey and Waddles in August 2020. 

After three years of blocks of antibiotics to bring Marcello down from strep infection, and to subdue his Obsessive Compulsive Disorder (OCD is a symptom of PANDAS), we all learned the tools to help Marcello when he’s having these flare-ups. There are also great ways to help your child with books, games, and even toys that will help your child who needs extra emotional and mental support. 

In addition to working up the courage to share our story, I was also inspired by a new guide developed by The Genius of Play. The Genius of Play teamed up with Talia Filippelli, the founder of Starr Therapy in Hoboken, NJ, a leading mental health expert and winner of numerous ‘Top Kids Doc’ awards to create this guide, Emotional Wellness Playbook, that gently walks kids through their emotions. Sometimes Marcello found it hard to talk and express himself, and I have to add that he was able to express himself before he got PANDAS, so having a guide like the Emotional Wellness Playbook is very helpful. It's worth a look. There are fun games and puzzles, even coloring pages that will help your child navigate their feelings and emotional expression, especially children who are fighting PANDAS/PANS. The tools represented in this guidebook can work for all children who are in emotional and mental distress. They are also just fun and kid-friendly. 

PANDAS takes a sparkle from your child, but you do get your child back, you just need the right guidance. 

I also want to mention that there is also a great series of workbooks that we use together, and they really do make a difference. I found them on Amazon and like the good Amazon Associate that I am, I included them in my Emotional and Mental Health Awareness idea list on my Amazon shop page. 

I do receive a commission on items purchased through my link at no additional cost to you! Even if you just click, it helps me out! Thank you!

August 2020 - I didn't know what to do for my son who was constantly waking up from nightmares. I would try to keep the environment positive, but he had intrusive thoughts of clowns and hateful things. 

What happened to Marcello?

Marcello was sick a lot, and he always had strep-like symptoms. He very rarely tested positive via the strep throat culture. He was constantly diagnosed with tonsillitis, laryngitis, or a cold. The ENT never found strep. Blood work was never done to confirm the strep infection. We relied heavily on throat cultures, which was a huge mistake. After his tonsillectomy in 2020, about a week later, he was exhibiting very strange behavior. It was totally out of character for him to wake up from deep sleep to ask me if it was okay that he watched commercials on his iPad. He also developed a fear of the clown, IT. He was afraid of things he normally was not fearful of, and forgot many pivotal moments in his childhood (he did not know his name or age at one point). There were many things that showed me something was wrong. One instance that really stands out was his Funko collection -- Marcello has been collecting Funko Pop!s since he was three years old. He said he never liked them and wanted them all out of his room during his first PANDAS flare. Inconsequential things like that are little cries for help. 

It is what finding out what was causing this change led us down an emotionally draining journey of hell. I will share more of his story as we go on. 

I must share this disclaimer again!

Here are some tips I have for parents who think their child has PANDAS or PANS. I am not a doctor, I am just a parent who has been through it all. Please seek out medical advice from your child's doctor. I am not a doctor. I will say this again. 

What is PANDAS?

Simply put, PANDAS is a condition that stems from a bacterial infection, usually Strep-A. The infection attacks your child’s brain. The infection specifically targets the basal ganglia section of the brain. 

The “basal ganglia” refers to a group of subcortical nuclei responsible primarily for motor control, as well as other roles such as motor learning, executive functions and behaviors, and emotions. quoted from the National Library of Medicine, Functional Neuroanatomy of Basal Ganglia, by José L. Lanciego, Natasha Luquin, and José A. Obeso

 

The infection causes neuropsychiatric symptoms including OCD-like behaviors, intrusive thoughts, hallucinations, tics, anxiety, eating aversions, depression, incontinence, disinterest in school or their usual daily activities, and overall radical behavior changes. Marcello first had intrusive thoughts, OCD, anxiety, and his overall demeanor just dimmed. It was like his bright light faded. 

What is PANS?

PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome. PANS is a sudden overnight change in behavior. It is not associated with strep. I am not a parental expert in PANS. I would suggest heading to the Pandas Network for resources about PANS. 

How do I know if my child has PANDAS?

There are many levels of diagnosing PANDAS. 

First, you need to know if your child has strep or had strep recently. Strep is not just found in the throat—Strep A is associated with PANDAS—and can be found throughout the body. Once the infection hits the bloodstream, it can wreak havoc on your child. Healthy antibodies created to attack the strep infection will also start attacking healthy cells. Every time Marcello has strep symptoms his throat culture is always negative, so keep this in mind as well. 

Then, I suggest asking your child’s pediatrician for a series of blood tests as a jumping-off point. Get the strep culture from the throat, but do not rely on the results. You want to quantify your kid’s strep level, so lab tests are necessary. If your doctor does not agree, then see an Infectious Disease Specialist. Not every doctor “believes” in PANDAS. I learned this the hard way. Thankfully, my children’s pediatrician is the best and has been so helpful and supportive. 

Check out these resources that I use as a guide.

• National Insititute of Mental Health 
• Pandas Network 
• Aspire
• PANDAS Physicians Network

I also suggest joining a PANDAS support group on Facebook. I honestly had no one in my life that could relate to what I was going through as a parent. There are so many parents who are just as lost as you are, so don’t be afraid to seek out help, or just to vent! 

 

Are there tests for a PANDAS diagnosis?

Yes and no. 

I have listed tests that were done with the guidance of an infectious disease specialist, neurologist, and pediatrician. Please note that I am not a doctor and I am not eligible to give medical advice. Take my parental advice and seek out a doctor for guidance. 

Below you will find a collection of tests I recommend to get immediate answers for PANDAS. This may or may not diagnose your child, but it will put you in the right direction. The quicker you act, the better!

Here's a more in-depth and scientific look at what kind of tests are administered to help diagnoses PANDAS/PANS. 

• Anti Dnase B Antibody - increased levels of DNase B will confirm Strep A infection 
• Antistreptolysin O (ASO) - elevated ASO titers will confirm a recent strep infection
• C-Reactive Protein [crp] —cytokines— tests for inflammation 

Below is a list of recommended blood tests we have done to find any other infections. Marcello also had Rocky Mountain Spotted Fever during his first PANDAS flare.

• IgA, IgM, IgG, B12 and vitamin D
• Tests for Bartonella, Mycoplasma pneumoniae (bacterial lung infection), viruses including influenza and Epstein–Barr virus, and Borrelia burgdorferi (Lyme disease).

More words of encouragement. 

How did you know your son had PANDAS?

I did not know! I had no idea what PANDAS was. Originally Marcello had strep a lot and was scheduled for a tonsillectomy. The pandemic caused the first surgery to be delayed and he had a tough time with tonsillitis all summer—his tonsils were ready to burst. I reluctantly went through with the tonsillectomy in August 2020, and he was not himself two days later. He was miserable. 

PRE-PANDAS Marcello with Geppetto and Pinocchio. 

I first noticed that he wanted to watch PJ Masks. I know it’s silly, but he never liked that show. He was watching it and enjoying it; I knew at that moment something changed in him. Then he started to tell me somebody was telling him things to do and say. He told me he hated me and doesn’t love me anymore. He also was unsure and confused a lot—the new word that he often used was “maybe” or he would answer a question and whisper “maybe” at the end. He didn’t want to lie, and it was such a coincidence because his favorite movie is Pinocchio. I called it the Pinocchio complex. He refused to eat. He was barely sleeping. I thought it was the fentanyl that they gave him right after surgery. I thought he was poisoned. I thought it was so many things, but many people don't take you seriously when you’re just a mom and don’t have a medical degree. 

I reached out to his ENT and his pediatrician and everyone was dumbfounded. They all knew the personality of Marcello, and they agreed that this behavior was out of the ordinary. I took him to the children’s hospital where he had his surgery, and I was deemed as a joke. My son was just having a behavioral change and I needed to accept it. He was not even seven years old and was acting like a teenager having a fit all the time. It was not him, and I refused to believe it. I insisted that Marcello be put on antibiotics -- even if it didn't make sense, my gut feeling was that he needed something. He had fevers sporadically, and I felt like there was just something not right. Then after a month of not knowing what to do, a neurologist suggested PANDAS and confirmed his titers (antibodies) were elevated. It was about three months before we actually got more information about Rocky Mountain Spotted Fever and how he had COVID antibodies. The correlation between the other infections does not coincide with PANDAS, but I’m not ruling them out. All three infections were enough to make my son totally disappear from us. Fast forward to many rounds of antibiotics (Amoxicillin, Augmentin, and Cefdinir), and he was back to himself. 

What was himself though? Where was my son when he had flare-ups? 

Marcello is a very intelligent and intuitive child, a true definition of an old soul. When he told me he has no recollection of that first experience with PANDAS, I believe him. After the first four months of antibiotics, his strep levels were zero in April 2021. He had flare-ups many times from the summer of 2021 to the present. It was always a learning experience each time. He started CBT (cognitive behavioral therapy) in 2021 which treated anxiety and OCD, and we learned so much. It was truly a great experience.

How do you know your child is having a flare-up?

This is another “I don’t know,” it’s just a parental instinct. We can only medically confirm a flare-up with lab tests. What I know from my son is that he had aching joints, sometimes bad breath, mild to severe behavioral changes (you’ve got to learn the distinction between a kid being a kid to PANDAS behavior), high anxiety, questions the cleanliness of everything, and a few other small things related to school. Every kid is different though. 

Should I medicate my child with antipsychotic drugs?

For me, that is an absolute no, but it really depends! Every child is different. We do periodic check-ins with a psychiatrist, and because our pediatric mental health system is terrible at the moment, we get a new psychiatrist fellow every time. They all want to give Marcello Prozac, or other SSRIs to help quell his OCD. Imagine if I did that? Imagine if I just did that? That's like giving a hungry baby a pacifier instead of a bottle. It does not fix the problem, nor help the situation. There are holistic medicines that parents have done instead of treating with prescribed antibiotics. Some parents adjust a child's diet by removing dairy and gluten to help reduce inflammation in the brain and body. Some parents go the route of IVIG (I explain more about IVIG later), and the results are mixed. I have gone the route of antibiotics and psychological help, which has helped my son. There are parents who do all of the above, and the SSRIs are what would or could help their child live a productive life. You have to first find the root cause of the problem, treat it, and then go down the roads of PANDAS. There are many roads-- bumpy, windy, and twisty roads. 

Is PANDAS treatment covered by insurance?

Yes and no. 

It’s now 2023, and things have changed dramatically. New legislation has just been passed where eight states have passed that PANDAS patients' treatments are covered by insurance. The states are Arkansas, Delaware, Illinois, Indiana, Maryland, Minnesota, New Hampshire, and Oregon. Iowa is still pending as of the time of this writing. 

Intravenous Immunoglobulin or IVIG therapy is the collection of healthy antibodies infused into your child through IV. I have heard it is painful for your child, a long process, doesn’t always work, and is a long experience. IVIG can cost about $7000 in some states. Some parents choose to just treat the strep and mental issues separately, which is what we do. Every family is different. 

Hopefully, all states will recognize PANDAS/PANS as a real disease, and the medical community will follow suit. PANDAS/PANS is not just a mental disorder, it is very much associated with bacterial infection. I say this as a very aware parent, and not a doctor.

I live in New York, and there is supposedly something going to be passed soon. If you need help within the tri-state area, please E-mail me and I can make suggestions. 

How do we, as parents, prevent PANDAS? 

I have to list this out because I am frustrated. 

• Stop sending your child to school with strep symptoms. Stay home and treat the infection. 
• Don’t rely on strep throat cultures for answers. Get the bloodwork.
• If your child is scheduled for a tonsillectomy, you should not go through with the surgery unless there is bloodwork for their pre-surgical testing; a throat culture is not enough. Your child must be 100% strep-free/strep antibody free before going under any anesthesia. 
• The school boards need to be on board with notifying parents about strep infections in their classes. Parents need to know. 

How is Marcello now?

Marcello is a bright, funny, adorable, handsome, sweet, kind, talented, and happy almost-10-year-old boy. 

Marcello has flare-ups due to strep infections he catches (from a host of people). There is really no way to prevent it from happening, even with a mask, he has caught strep. He refuses to wear a mask, and I do not blame him. His flare-ups are pretty terrible, and the sad part is that his classmates do not know why he changes his personality. I do not know how to tell his classmates; you would just think that in this day and age, kids wouldn't be cruel, but they are. Marcello gets into strange moods, and his personality does change quite a bit, so I know his peers see it. He's more sensitive to things during a flare-up. When he is not positive for strep or has positive bloodwork, he's the same old Marcello!

Keep in mind that while Marcello suffers from this condition, life continues. I still had to be a present mother for our then three-year-old son (he's now a spunky five-year-old!). I still had to be a mom, wife, partner, friend, and all of the above. In 2021, Marcello won a storytelling contest with the toy company, Schleich. We had done so much press on his win, and I was too afraid to come out and say, he has PANDAS. It is so very hard to explain. I wish I did speak up then instead of focusing on him just having COVID. 

Then in 2022, my mom got diagnosed with stage 4 colorectal cancer. 

Life does not stop when you are experiencing your own personal tragedy. 

That’s the end of my spiel. There is more to our story, but this is all of the stress I can handle at this moment in time. I learned recently that I am very triggered by my son’s changes from PANDAS, but I am comforted in knowing he is in there somewhere — in that beautiful brain of his. When the flare-up is over, he’s better, brighter, and more himself again. 

No one wants to hear about a child with issues like this. No one can relate unless you’re living it. How could I write a post about it? I’m no expert. I’m just a parent desperately trying to make sense of everything and help guide my child. I hope this was helpful to you. I’m here if you need to talk! 

I understand and I am there for you, so do not feel like you can't talk to me. E-mail me or message me on social media. I’ve been there; the dark place no parent wants to go. I’m in it now, but I’m more aware and know what to look for in my son. I am here for you!

There is light at the end of the dark and dreary tunnel.