I first met Lara Fleming three years ago at a local gym. Our boys had just signed on to do competitive gymnastics and the two of us were like two mama deer in headlights. We had ZERO clue what we were doing and felt like we were not cut out to be the aspiring Olympics moms that our boys wanted us to be. We spent our first away weekend meet together and knew instantly that we were soul sisters. Our approach to sports, parenting and life were very similar. Lara is one of the smartest, most stylish and most hilarious moms I’ve ever met. Her humor is dry and very sarcastic, I found it refreshingly familiar – umm, well exactly like mine. We would often complete each other’s late night text threads (probably after a glass or two of wine:-) with an even funnier one-liner. I absolutely adore this woman – she makes me laugh out loud every time I hang with her!
Lara’s son, Noah, fell right off his mama’s tree. He is super smart and witty and a fierce competitor. I had no idea that he was facing daily lifelong struggles. I did however, catch a glimpse of his super anxious mom at each stressful gym meet, and I couldn’t figure out why she was such a nervous wreck after each rotation. I chalked it up to just being a regular gymnastics mom – it’s a very frightening sport to watch your kid compete in.
Fast forward a year later. Noah had recently quit gymnastics and I really didn’t understand why. His previous year was huge for him and he had gotten so good at the sport. Lara said it was too stressful for Noah and his anxiety level was too high. I didn’t press for more information. A few weeks later, I ran into Lara at Flywheel. She said she wanted to chat and fill me in on Noah. It was that moment that I knew something was seriously wrong. She shared her journey that I’m about to share with you. But she also shared something very personal and very terrifying. She shared an audio of Noah having what I thought was a really exaggerated tantrum. Until I listened a few seconds longer. That audio still haunts me to this day, knowing Lara and other moms like her have to face that every single day. It brought me to my knees in prayer – for Noah, for Lara, and for every other family dealing with a very misunderstood disease called PANDAS/PANS.
Recently, Lara invited me to dinner with Traci Andrews, another mom with a child battling PANDAS. They shared their journeys with me as well as information about an upcoming race to raise awareness for the disease. I knew exactly what I needed to do to help them – share their stories with all of Smarty Charlotte in hopes that we can help them make great changes for this disease. We need to support these amazing Smarty mamas and attend their first ever PRAI Awareness Walk & Fun Run on September 16th and shout from the rooftops about PANDAS/PANS. They need our help, Smarty Charlotte. They need us to pay attention to the signs they outline below and create conversations – with educators, healthcare providers and other moms. You’ll be surprised that once you start talking about PANDAS, you’ll find that you know quite a few families who have been silently struggling with this disease. It’s time to end the silence.
Meet Lara & Traci – the biggest warriors in all of the QC. These women are strong and brave, and I couldn’t be more proud to introduce them to you today.
Lara Fleming’s Smarty Mom Stats:
Mom of: Noah (12) & Abby (9)
Years married: 16
Years in Charlotte: 20
Neighborhood: Myers Park
Occupation: I’ve been a stay at home mom since Noah was born. I have a masters degree in I/O Psychology and Human Resource Management and worked for 10 years in HR at Accenture and Bank of America before having kids.
Traci Andrews’ Smarty Mom Stats:
Mom of: Josie (10) & Henry (8)
Years married: 12
Years in Charlotte: 16
Hometown: Akron, Oh
Occupation: Speech-Language Pathologist
Tell us about PANDAS/PANS. What is the difference between the two?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is the large umbrella that PANDAS falls under as a subset. PANS is when a trigger of the immune system causes it to misfire and attack the brain rather than the foreign invader it should be attacking within the body. PANS triggers can includes strep, mycoplasma pneumonia, the flu, an allergen, staph, etc.
PANDAS is specific to strep. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) occurs when strep is the trigger that causes the immune system to misfire and attack the brain.
The hallmark trait for both is a sudden and debilitating onset of intense anxiety and mood lability accompanied by obsessive compulsive-like issues and/or tics. In some instances, the onset will be 4 to 6 months after an infection, because the infection was never fully eradicated and is still in the body.
Kids don’t always show symptoms of strep throat. Noah never even had classic strep throat. He had constant severe diaper rash as a baby and toddler, and that’s where his strep infection hid.
PANDAS can eventually turn into PANS and often does.
Both PANDAS and PANS cause the same symptoms. They include OCD, tics, anxiety, rage, aggression, inability to sleep, ADHD, paranoia, depression, food issues, frequent urination, extreme sensitivity to environment, water temperature, clothing, regression in math, reading and handwriting, and short term memory loss.
Not all kids with PANS/PANDAS will have all of these symptoms. But they will exhibit many of them. And some kids are affected much more than others. I describe it as a stage 1- stage 4 severity scale. Noah was stage 4 for many years, but I would describe him as stage 2 now because he can leave the house, go to camp and function in daily life. Some kids never get past stage 1.
Symptoms wax and wane depending on if the immune system has been triggered. Children can go days, weeks or months without a flare. But when the immune system is triggered, the PANS/PANDAS symptoms come back. Flares can last for a few hours, days or several years.
Instead of getting a sore throat, fever or feeling crummy like a kid with a properly functioning immune system, kids with PANS/PANDAS get psychiatric symptoms when they are sick or stressed.
Also, super important to share, any kid can get PANDAS at any time. A few kids at a local Elementary school got PANDAS this year because a specific strain of strep that easily crosses the blood brain barrier was going around. The kids had no sign of strep- just tics, anxiety and OCD behavior, and they tested positive for strep. This disease is very scary in that way.
How is STREP/STAPH/MRSA linked to PANDAS?
Strep can cause PANDAS. Strep, Staph and MRSA can cause PANS.
Not everyone who gets strep will get PANDAS. The prevalence is 1:200 kids. They aren’t exactly sure why some do and some do not.
Tell us about the upcoming PRAI Awareness Walk & Fun Run in September.
September 16, 2017 | 9am | Marvin Ridge High School | Waxhaw, NC
Our first annual PRAI for 100K is for anyone wanting to move one step closer to a cure for children suffering from PANDAS/PANS.
The PRAI 100K is our first large community fundraiser dedicated to raising money for research into Children’s Postinfectious AE and increasing awareness in the state of North Carolina for a childhood disorder that is estimated to effect as much as 1 in 200 of our children.
More details HERE.
Tell us about your child’s diagnosis.
Lara: Noah was officially diagnosed with PANDAS last July 2016 by Dr. Elizabeth Latimer, a pediatric neurologist in Washington DC who is an expert in PANS and PANDAS. Based on his medical history, Dr. Latimer believes he has had PANDAS since age 1, and it eventually turned into PANS. Around age 1, Noah began to be obsessed with electrical outlets, batteries, and anything that needed to plugged in. He wouldn’t eat in his high chair unless every fan, sound machine, baby monitor, remote control, etc was on the kitchen table with him. We didn’t worry too much about it. We just figured it was a quirk, and he was our first kid so we didn’t know any better. Between ages 1-2, he began to exhibit anxiety, sleep, sensory and food issues, aggression, frequent urination, and some minor tics. This is when things started to get really difficult.
For parents who are wondering if their child might have PANS or PANDAS, it’s important to note that Noah’s OCD and tics are not what you commonly think of. I didn’t think he had OCD until Dr. Latimer explained how OCD can manifest. Noah doesn’t need to do things like touch a door 10 times before he leaves a room. But his brain could not stop thinking about certain things, and these obsessive thoughts ran his life. He doesn’t have compulsions and his tics are very minor- things like twirling his hair a lot. Things you wouldn’t even notice. From age 8-12, Noah has improved a lot. He can go days at a time without symptoms now, and his symptoms are more manageable. Having said that, PANS is still the central issue our family deals with. And he missed 12 weeks of school this year because of flares. He actually had to be homebound for the last 10 weeks of 5th grade because his PANS was flaring so badly.
I took Noah to 16 doctors before we saw Dr. Latimer last summer. He had been diagnosed with sensory processing disorder, auditory processing disorder, ADHD, ODD, sleep issues, separation anxiety, generalized anxiety disorder, depression. He’s done OT, counseling, a sleep study, neurofeedback, acupuncture, chiropractic adjustments, tons of blood work, MRIs. He has seen countless neurologists in Charlotte and at Duke, psychologists, psychiatrists, ADHD specialists, chiropractors, naturopaths. He’s been on different meds for ADHD and anxiety. Nothing worked. He just kept getting worse. We just had an appointment with a highly recommended homeopath this week who is based in Seattle, so I am hopeful about that.
In May 2016 a friend posted on Facebook about her son having PANDAS. I had never heard of it, so I googled it and my stomach dropped. I knew immediately that this is what Noah had. I called her and she told me that only a few doctors in the country understand the disease well enough to properly diagnose it. And Dr. Latimer in Washington DC was the nearest one to us. She had a 3 month waiting list, but we were able to get in within a month because Noah was such a severe case. We brought his entire medical history from age 0-11, which was a lot because he has been to so many doctors. We brought videos we had taken of him flaring. She diagnosed him with PANS/PANDAS during that appointment.
Traci: Josie was diagnosed with PANDAS in December of 2015 which was about 6 months after her symptoms began. She began taking antibiotics in October 2015 (when we were pretty sure she had it but we couldn’t get in to see the specialist until December so our pediatrician started her on antibiotics). She had her tonsils removed in January 2016. Taking her tonsils out and taking antibiotics did not make her better so we did our first IVIG in February. Josie was 95% recovered by April and continued to do well until about August. She never went back to how bad it was in the beginning, but she did begin slipping back to about 60%. Her second IVIG was in September 2016, and it got her back up to about 80% but only for about 4 months and she began slipping again in February of 2017. She had her third IVIG in May 2017. This one did not seem to help as much until recently. We just started seeing a new specialist who is recommending some changes in our treatment plan so that we can get Josie better and keep her better.
In the early and hardest days before you had a diagnosis, what was a “normal” day like for your child?
Lara: The early days were extremely difficult. From age 2 until about age 8, Noah’s symptoms were severe all the time. His anxiety, rage, aggression, fear of leaving the house, sensory issues, depression, sleeping issues and OCD were constant. We rarely went anywhere together as a family because leaving the house caused him so much anxiety. The hardest part of this disease for us is the rage and severe anxiety.
Traci: It was terrifying, horrible and unimaginable. My child literally changed overnight and no one knew what was wrong with her. She repeated over and over again that something was wrong with her feet and she said she couldn’t stop moving them. She was crying and begging me to make “it” stop. She would roll around on the floor and cry, throw things and scream for up to three hours at times. Her pupils would dilate and it was difficult to believe she was the same Josie we always knew. She was gone, disconnected from us. She couldn’t feed herself, she couldn’t dress herself and she begged me not to make her go to school. She couldn’t sleep alone, and when she did sleep she would wake up having attacks throughout the night. The mere mention of bed time could send her into a full blown anxiety attack-sweating and having trouble breathing. She would cry and beg me to help her. Clothes started to bother her to the point that if the shirt didn’t feel right she would scream in rage for up to an hour. She couldn’t hold a pencil to do homework at home and she was afraid to read because when she tried “it” would start. She was obsessed that something was wrong with her feet. The second she got in the car from the carpool line she would unleash on me by kicking the back of the seat, hitting me and pulling my hair. She would tell me that her feet were starting at school and beg me not to make her go back the next day. The sight of food put her in a tailspin. If the food wasn’t just right she would throw it across the room. She couldn’t touch the food so I had to feed her. She would physically attack her brother to the point he was scared of her. She wanted to be with me at all times. When we were in public, she was afraid to leave my side as she thought something bad would happen. She was started becoming afraid that she was going to get lost and told us she was claustrophobic. She even begged us to take her home when we were at Disney World one year. She also became very set in her ways and became upset if things didn’t go her way. If she had a plan, she did not want to veer from it and would become very oppositional.
What is a typical “flare” like for your child?
Lara: A typical flare is when something causes Noah to be stressed (homework, having to take a shower, having to leave the house) and his anxiety begins to rise. If the stressor isn’t immediately removed, his anxiety quickly reaches a level of no return, where he is in a seizure like state of rage and severe anxiety for anywhere from 20 minutes to a few hours. If I can get him to take 400-800 mg of Motrin, he calms down as soon as the Motrin kicks in and reduces the brain inflammation. If I can’t get him to take Motrin, and I don’t remove the stressor, the episode can last for several hours. He has no control over it so discipline and rationalizing with him actually makes it worse. The best way to handle it is to contain him and stay calm until the flare is over.
Traci: Now she can just get irrational and irritable. I know that most pre-teens can, but this is different. You would have to see it to understand. She also has lots of anxiety. She worries we won’t pick her up from school, she worries that her brother will get lost, she worries that places aren’t safe, etc. Sleeping is still difficult for her. She thankfully no longer has the terrible episodes she did in the beginning.
What is the scariest thing your child has ever said to you?
Lara: That he can’t live like this anymore and wants to kill himself.
Traci: Josie hasn’t really said anything scary, but more sad. She has told me she doesn’t know why I work so hard to teach people about PANS/PANDAS because she isn’t ever going to get better. She would tell me I am wasting my time because no one was ever going to make her better. She became completely hopeless. This broke my heart. A child should never feel this way.
BUT the new doctor has given her new hope and she actually said she thinks he will make her better.
She has also been scared that she won’t be able to go to college because she has heard us say we had to dip into her college funds to pay for her treatments since insurance will not cover them.
How is your child today?
Lara: Noah is now 12 and he has improved a lot since age 8. He usually has daily flares, but they are much more manageable. The real Noah started to emerge around age 8 and he is a kind, compassionate, loving, smart, funny boy. The real Noah is a joy to be with. I could weep for days about how different the real Noah is from the flaring Noah. Thankfully, when he is at school, summer camp and friend’s houses, he is able to control his PANS, and he lets it out at home. This is pretty typical with PANS/PANDAS kids and I am grateful for it. He has always behaved beautifully at school, camp, and at friend’s houses. Teachers and friends are usually shocked when I tell them what we struggle with at home because he is so different with them. This is one reason that sharing our story is hard for me. I don’t want people to judge Noah. He hates having PANS and he is afraid people will think he is crazy or a bad kid when they hear about how it affects him. I asked his permission to share our story because it is so important for people to really understand how awful this disease is.
Traci: We are doing ok right now. Josie still has ups and downs. We try to cherish the “ups” but it is hard because you are constantly walking on eggshells waiting for the bottom to fall out. The start of school makes me nervous because school is filled with germs. If someone in her class gets sick I often know it without anyone telling me because her symptoms increase. The hope is that eventually this will no longer happen.
How has your journey been with support from the medical community? Insurance companies?
Lara: Good and bad. We saw 16 different doctors over 10 years before we got a correct diagnosis. That was incredibly frustrating. I kept pushing because I knew none of those diagnoses were right. They were all a piece of a larger puzzle, but they weren’t the whole puzzle.
Our insurance has been pretty good. A lot of what we’ve tried over the years isn’t covered (acupuncture, neurofeedback). But Noah’s 4 high dose IVIGs and 2 hospital stays have all been partially covered. I’m still communicating with insurance to get an IVIG from February partially covered, but compared to other families, we have been extremely fortunate.
Traci: We have had to travel to DC and most recently to NJ to find a specialist to help us. We were in the hospital for three days here in town having tests run and PANS/PANDAS was never mentioned or brought up. Our pediatrician is willing to help when he can but he admits he doesn’t know much about the disorder and how to treat it. We are thankful that he did research it in the beginning and started Josie on an antibiotic while we were waiting to get in with a specialist. We have recently found a local neurologist that has helped us, but he also admits he is still learning. He was able to help us get our third IVIG at home. We have been told by local doctors at a well known hospital that PANS/PANDAS doesn’t’ exist. I think it is just hard for people to change their way of thinking. This is a major paradigm shift when it comes to mental health and some doctors are not comfortable with that. This is a mental health problem that is caused by an infection that has caused an autoimmune response. My child has inflammation in her brain that is causing psychiatric symptoms.
My insurance company has denied everything. We pay for the doctor visits ($800-$1200) and phone calls to the doctor ($500). We have paid out of pocket for every IVIG treatment Josie has received 3 ($10-$12k a piece plus the cost of travel, hotels and meals while we were away). The insurance companies say it is “experimental”; however, there has been recent publication of the standards of care for PANS/PANDAS in the Journal of Child and Adolescent Pharmacology. Still, BCBS of NC state plan denies any coverage.
How can we help educate our community, especially teachers, help us get to a faster diagnosis?
Lara: This is so important. Early diagnosis and treatment is key to recovery. We need them to understand that PANS/PANDAS is a very nuanced disease. It can look very different from one kid to the next. Some kids have serious OCD and tics, and others have serious anxiety and rage. Some kids have raised strep titers, and others have perfect blood work. Many kids are perfect in school and then fall apart at home. It’s not a one size fits all disease. It takes a partnership between the parents and the doctors/educators to figure out if a child has PANS. Not every kid with severe anxiety and obsessions or tics has PANS, but doctors and educators should always look at PANS as a possible diagnosis if a child is exhibiting any of the behaviors that fall under it. Also, when kids are diagnosed, finding the right antibiotic and dosage is critical. Not all antibiotics work well against this disease. And newly diagnosed kids need to be on a minimum of 30 days of high dose antibiotics, if not longer. Noah just started taking Bactrim 2 months ago and it was a game changer for us. He had been on Cefdinir for a year, and I can’t say it was making a huge difference. Bactrim made a difference within a day. He also takes high doses of probiotics everyday to protect his gut health, and that makes a big difference.
Traci: I encourage anyone who works with children to learn about the disease. There was a recent documentary called My Kid is Not Crazy (trailer at end of this interview) that you can watch. We have started a local chapter of PANS Research and Advocacy Initiative (PRAI) and we are on a mission to increase awareness, provide support and raise funds for research. Reach out and we can help.
How has PANS/PANDAS affected your family?
Lara: It runs our family and has for the past 11 years or so. It is the central issue our family deals with everyday, and it is the number one factor in every decision we make. It’s the first thing I think about when I wake up and the last thing I think about when I go to bed. Usually because I’m setting an intention as I fall asleep that Noah will heal and be his highest and best self, free from the grips of PANS.
Traci: It has tested our relationships with one another. The resiliency of this disease is intense and shows no mercy. It doesn’t care if it is dinner time, bed time or time to go somewhere. But we are all stronger now, and we have learned not to sweat the small stuff because it really doesn’t matter, I mean really…it doesn’t!
How has it changed you as a mom?
Lara: I am a better person and mom because of this disease. It has broken me open. I found my voice and I’m no longer scared to speak up. I set an intention to be my best self everyday. I don’t always succeed but it’s always my intention. I have had to dig deep and work on my own stuff so that I can be my best for Noah and Abby everyday. The siblings of PANS kids are the forgotten ones in this disease, so I spend as much 1 on 1 time with my daughter as I can. I hold zero judgement in my heart about other parents. I always assume they are dealing with something that I know nothing about. I think God knew that the best way for me to become the person I was meant to be was to give my child a disease like this.
I love to laugh. I love to spend time with my amazing, supportive husband and friends. I couldn’t do this without all of them. I love to dance and sing at the top of my lungs, and I do those things whenever I can. I try not to take myself too seriously or hold grudges. Ain’t nobody got time for that. I am grateful for the small things. A good day with no flares is a gift.
Jen Plym will laugh when she reads this, because she has experienced it first hand at gymnastics meets we’ve sat through together. But I definitely take on Noah’s anxiety at times. I have to remind myself daily to take deep breaths, trust God and let go. I am so proud of Noah for trying new things and my expectations for him are so pure. I couldn’t care less about honors classes or being the best athlete on the sports team. I just want him to be content and joyful in his heart. I want him to be his best self, whatever that is. I also want others to see the beautiful boy I see when I look into his eyes.
Traci: It has changed me as a mom in so many ways. I would say that this is the one positive that has come of this disease.
I do not judge other moms for anything anymore because you never know what the story is. Even when you do know the story you can’t possibly imagine what it is like unless you have walked in the exact same shoes.
I also have learned to accept help. I am surrounded by an army of amazing women who want to help. It makes them feel good, and I’ve learned accepting it feels good too.
The biggest change is that I have turned into an advocate for my daughter and all children fighting this disease. I will talk to whoever will listen. For those who won’t listen right now, I will continue to provide with research and published journals because they will come around some day. I’m not afraid to stand up for what I know is right. I don’t care if you have “Dr, Senator or President” in front of your name. These children deserve better than what they are getting.
What tips do you have for a mom reading this and thinks “maybe my child has this?”
Lara: Trust your gut. You know your child better than anyone and you know when something isn’t right. Research the heck out of it, and find another mom who is dealing with the disease. Ask her questions. PANS/PANDAS moms are the most knowledgeable group of people about this disease. Other PANS moms will point you in the right direction and support you every step of the way. We are there for each other no matter what because we know what it’s like to live with this disease.
Traci: My first tip is to ALWAYS trust your gut. You know your child like no one else. Keep going, and don’t give up.
What resources are available to families with PANDAS/PANS?
Lara: The Stone Center for Counseling in Dilworth has amazing therapists who can help you, your PANS kid and any siblings work through grief, anxiety, fear, etc. They have been a great resource for our family.
For my personal growth, I have to give a shout out to Matt and Lynn Lyon, who own the Network Wellness Center of Charlotte. I’ve been a patient there for the last 5 years and they have been instrumental in helping me become the best version of myself throughout this experience.
There are also some private support groups on Facebook where you can ask questions and find answers. These have been really helpful for me.
Moving on to lighter questions…
What is your favorite thing to do with your family in the fall?
Lara: Snuggle together on the couch with our dog and watch the new season of Speechless and Blackish. It’s the small things for us.
Traci: Watch football.
What is the last meal you cooked?
Lara: It was from Pasta and Provisions– their homemade egg pasta and grilled shrimp with kerrygold butter and sea salt.
Traci: Chicken stir fry
What is your favorite take-out family meal?
Favorite kids movie?
Lara: My kids enjoy watching all the Marvel movies at home so I have embraced them too.
Traci: Stand by Me
Lara: Amazon because Amazon primes rocks.
Fall trend you are crushing on?
Lara: I love high waisted skinny jeans and pray they never go out of style.
Traci: I’m not so trendy, haha!
Best date night restaurant?
Lara: Summit Room
Traci: Ilios Noche
I wish someone told me this sooner…
Lara: I wish a doctor had told me about PANDAS sooner so that Noah didn’t have to suffer for so long.
Traci: You just don’t know what you don’t know, and there is nothing you can do about that. BUT, when you do know you use that gift to teach others so they know too. (and you don’t judge along the way).