Everlie’s PANDAS Treatment Fund

PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections

I’m writing this on 3 hours of sleep so please forgive my typo errors if found.

The writing prompt for this section is called “Tell a story”… Everlie’s story is a scary one but unfortunately it’s all too real. The only ghost in this scary story is the memory I have of my daughter and how she used to be before PANDAS. This is a story of parents living a nightmare but most importantly a story about a little 8 year old girl who desperately needs our help.

Everlie has always been my fiery red head with the purest heart. She’s a giver and wants to make people happy with her constant homemade gifts and her sweet hugs. She’s so witty and has never met a stranger. She’s a very special child with an adventurous spirit.

Over the last couple years, I started noticing my Everlie disappearing behind extreme hyperactivity, rage and crazy compulsions. She would cartwheel over and over until she got sore, run out into traffic on purpose, started refusing wearing certain clothing because of sensory issues, couldn’t slow her mind down to stay on a task and eventually started raging, screaming and hitting in anger.

By mid 1st grade, I realized that it was time to seek help. Ev was diagnosed with OCD/ADHD and for over a year, she was treated psychologically and psychiatrically. Her doctors prescribed countless psych meds that never helped and she also saw a behavioral therapist who specialized in CBT OCD/ADHD. I thought I was doing everything right by getting her help but I couldn’t understand why she wasn’t getting better. She was experiencing the horrible side effects of the drugs but no relief. Week over week more extreme behavior would occur and we were trying to understand this new child who was suddenly so so angry and out of control. Her anger was met with our confusion most days and we didn’t know what was happening to our sweet Ev or why she had disappeared.

2nd grade comes and her symptoms get worse. We are not able to go out to eat/shop peacefully at this point. Vacations are full of rage and violence. She isn’t sleeping at night and then sleeps all day at school. She starts raging/destructing at school and is developing intense compulsions that have to be completed, sometimes in the form of self harm. It’s a horrible cycle and nothing is helping.

In November 2023, Everlie gets strep. She’s definitely been a frequent flyer with strep, so much so that we had her tonsils removed in 2021. Little did we know that strep can live in your nose, skin, tummy and even your bottom. A couple weeks post strep diagnosis, she nose dives down further than before. She developed vocal tics and her pupils are becoming huge. She’s argumentative, defiant, destructive and very violent, especially towards me. I’m constantly being hit, slapped, kicked and yelled at. I had a sick gut feeling that something was severely wrong here. Children don’t just act like this for no reason and the psych meds are not helping.

During this time, Ev’s new therapist asked me if I had ever heard of PANDAS. I had not but once I looked it up, it changed my life. Everything clicked and she had almost every symptom. I created a spreadsheet and called her pediatrician to receive every instance she’s had strep. I lined it up on the timeline with every traumatic event that had happened due to Ev’s behavior. I dug through emails from teacher's, texts, etc and It all lined up perfectly. I was gutted. After that, I didn’t sleep for days because I was up researching, reading books and trying to find answers for my tortured baby. I found out that PANDAS is an autoimmune disorder with no cure but can go into remission with the right treatment. 1-200 kids have this and most go untreated. I also found out that children with untreated PANDAS end up with these permanent neurological symptoms for life. Over my dead body.

For almost two years, Ev was treated like a psychiatric patient when she really was suffering from an inflammatory brain injury. Her brain has lesions on the Basal Ganglia (part of brain that affect your impulsiveness, mood, emotions and behavior) that swell and multiply with every new illness. Through my reading, I was able to find the best PANDAS functional specialist in Austin. She’s helped hundreds of PANDAS kids and even had co-written a book on it. I called her office and she miraculously had an opening. She had a closed patient book for 2 years prior. It’s a God thing that she had availability but she’s extremely expensive. $500 consult and then $500 an hour with a 4 hour min package. I swiped the card immediately and I said I would figure it out later. After meeting with her in January, I finally had hope for the first time in a long time. She has a specific plan for Ev’s healing and we are on the journey now.

Ev’s labs show that her immune system is almost nothing, it’s basically negative. She’s been recently hallucinating and her eyes can often look glazed over from the sheer inflammation in her brain. :( Her uncontrollable rage and compulsions due to her little inflamed body has now caused her to have to stay home from school while we work fully on healing her. Per her labs, she has super high strep levels in her gut that we are actively trying to kill with long term antibiotics. She also has an active stomach infection mixed with an active parasite and super high levels of bacterial gut overgrowth. Her dr prescribed medication and supplements for all these things but they come at a high price. These things are all on top of her PANDAS from the strep.

We have swiped that original card and more cards several more times since then for expensive labs, many medications, more $500 per hour packages and more testing. Our cards are not able to swipe anymore and our savings account is nearing empty but Everlie still needs help. It's a terrible place for a parent to be.

Once her active infections are healed, she will need IVIG. This is basically a plasma/antibody replacement IV therapy that will completely reset her immune system and possibly help put her into remission with PANDAS. Her body and brain keep attacking itself so we have to get it to stop.

It’s $10K per treatment and her doctor thinks several treatments are going to be necessary due to the severity of Ev’s condition. Another shock: Insurance companies rarely cover IVIG for PANDAS because it’s considered experimental. PANDAS in general is a newly discovered disorder and most conventional doctors still have no clue about it. IVIG is covered for other autoimmune illnesses but they give pushback on PANDAS. I am going to try to work with a neurologist who can help me here but it’s not guaranteed.

Ev is so strong even when I can tell her body is tired. She wakes up optimistic that she will feel better and everyday she is proven wrong and sabotaged by her own body. She is mentally tortured daily by her inflamed and sick brain. PANDAS has stolen my 8 year old, beautiful, red headed, loving and kind daughter. I’m fighting like hell to get her back.

Everlie still needs extensive help and I am running out of financial resources to provide within the timeline she needs. It’s very humbling to have to ask for help but when it comes to my children, I would do anything.

Thank you for reading and for your prayers and support. Please only give what you can spare, even $1 or $3 would be so incredibly amazing as we work hard to raise money for Everlie’s extended continuous care. Its a long road ahead. ($2,000 per 4 hours of care by her PANDAS specialist) more labs to make sure we are headed in the right direction of healing ($1,000 to re test stool + Lyme) monthly medications + supplements ($500a month), her monthly therapist bill to help her through this ($200 +/- a month), a tutor while she is having to miss school for the rest of the year ($1,000??) and for the IVIG fund just in case insurance denies us and we lose the appeal. ($10,000 per treatment)