Friends and family,
This Saturday our family will be walking to raise funds for SEPPA - an organization who is very dear to my heart and we really need your help!! Please donate any small amount if you can. It would mean the world to us!
This is our story.
I am sharing this super personal story in hopes that it will help another mama (or daddy) out there who is desperate for answers like I was.
As some of you know, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) is a disease that has literally stopped our family in it’s tracks. If I haven’t responded to an email or text in the past year(s), it’s because I have been completely consumed with finding out answers and healing my daughter Carson.
After years of battling every childhood illness that you can pick up from daycare, Carson slowly started to develop rages at age 3 that most would consider to be typical kid tantrums. Deep down I knew something wasn’t right, however I was continuously dismissed by our pediatrician. Over time her symptoms increased to extreme mood shifts and tantrums that would last for hours; extreme defiance, anxiety, sensory sensitivities to fabrics and sounds. She developed tics and could not sit still. Then came insomnia and diarrhea. By this time Carson had a baby sister (Mabry) and the pediatrician chalked it up to “sibling rivalry.” We then went to a psychologist who said that we needed to loosen up on our parenting style and gave us some calming technics and recommend that we read some parenting books.
By the time Carson started Kindergarten I was sure she was becoming autistic. But I also knew that wasn’t possible - to just become autistic for a few hours. I was grappling for answers. I knew we were losing her to something. She was riddled with anxiety and we could hardly leave the house without having a full on meltdown that would last hours. However, she was making decent grades and holding it together at school and in most public places. These episodes were waxing and waning.. I couldn’t make sense of it.
That spring break 2017 we retreated to a family river cabin to regroup with friends. It was a fun weekend and we camped outside by the river one night. Carson woke up that morning itching her hand.. a tick was attached to her middle knuckle. I yanked it off and secretly freaked out - so did my friend who found it. I took Carson to her pediatrician who looked at it and said “Don’t worry about it. Lyme Disease isn’t in Georgia.” I naively accepted this answer and walked away.
Carson’s symptoms increased dramatically.
Then I got serious about getting help for her behavior. I called the school counselor and got a list of recommended pediatric psychologists and called every single person on the list. I received 2 replies and made an appointment with the one that accepted our insurance. It took 5 visits with this psychologist for her to realize “play therapy” wasn’t going to help and she gave us an OCD questionnaire to complete. She read the results with a furrowed brow. Then she handed me a flyer for PANDAS and suggested we get Carson’s strep titers checked via blood test to rule-out PANDAS. I will never forget that moment.. I am so grateful for that psychologist and the flyer that put us on the right path.
I had heard of PANDAS from a good friend, but never considered it because I thought it had to be “acute onset” meaning your kid develops these symptoms overnight and Carson’s came on slowly over time. I called my friend. She has 3 boys who are battling PANDAS and is on the board with SEPPA. She was a beacon of information for me. She gave me the name of her PANDAS specialist- Dr. Dickerson - located 1.5 hours away in Newnan. She is 1 of 2 actual pediatricians that are specializing in PANDAS in Georgia. I immediately called and got on her 3-month wait list. Her office called back because they had an opening 3 weeks out. I jumped on it.
On November 7th 2018 we walked into Dr. Dickerson’s office for an office visit that took 3 hours. Dr. Dickerson explained that PANDAS is an autoimmune condition initially triggered by strep infections, which disrupts a child’s normal neurologic activity. PANDAS occurs when the immune system produces antibodies, intended to fight an infection, and instead mistakenly attacks healthy tissue in the child’s brain, resulting in inflammation of the brain (basal ganglia) and inducing an onset of movement disorders, neuropsychiatric symptoms and abnormal neurologic behaviors. While strep is the initial trigger, PANDAS patients can have recurrent symptom exacerbations (flares) later in the disease when exposed to other (non-strep) infections. Like Lyme Disease for instance. Which Carson tested positive for and many other PANDAS children do as well. I’m not sure why - I suspect it’s because they are more susceptible to it because they have no immunity.
We walked out of that appointment with a requisition form for 16 different labs and she started Carson on a regimen of antibiotics and supplements immediately. Carson’s behavior and health literally improved overnight. This was an answered prayer and proof that we are on the right path and battling something viral instead of a mental illness!
As Dr. Dickerson warned us, we are not out of the woods. Carson will often have flares or setbacks when she is exposed to an illness because she doesn’t have the immunity to fight it off. It may take years of tweaking antibiotics, gut health and possibly IVIG treatments to ultimately put her in remission. However we are so relieved to know what we are up against. We got this. And Carson is our little hero for being able to fight through this disease all while making it almost invisible to those around her. She just wants to be a normal kid and she is showing PANDAS who’s the boss. Kendall and I are so proud of our amazing little girl.
One year has brought so much heartache and healing it’s hard to even comprehend. I have so many emotions going into this weekend and I'm so excited to finally meet some of the ladies that have helped us get this far. You see SEPPA is the organization that put the flyer in our psychologists office that day. They are single-handedly spreading the word to the medical community and bringing attention to PANDAS all over the Southeast and I can’t wait to personally thank all of them for their hard work! And I’m so excited for Carson to see how many other children are dealing with the same thing. She needs to see that she isn’t alone and that she has a team of VERY passionate mamas out there that will not take no for an answer!
Come out and walk with us if you can or donate to SEPPA today!!
Thanks so much for reading this :) I hope it helps someone!
The Whites