After many years of Gracie being too embarrassed to have her story told, she has agreed that if her story helps one child not suffer what she has endured, it is worth it. So...here is her PANDAS story...
As I tell her story, I will place in when she had an infection, but note that I only discovered the connection many years later by placing her medical records on a time line with photos and other memorabilia.
Started with a Stutter
Gracie was the perfect baby and toddler. I mean perfect! She never cried, always smiled, and took in everything around her with joy. She talked at 6 months, walked right on time, learned her letters by 1 years old, spoke 10 word sentences by 1 years old, and seemed to learn anything that came her way easily. She was an independent kid who never hesitated to go into new situations without me by her side. At 18 months old, she got a strep throat. She soon began to stutter, repeating sounds, words, and parts of sentences over and over. It was exhausting to try and wait for her to get a thought out. She began speech therapy. It did little to help, but her stuttering would just disappear almost over night. We would joke and call it her 'bumpies'. We later realized that Gracie's bumpies correlated with her getting sick. Her bumpies would start, and I would say, "Ut'O, your bumpies are back. You will be sick within 2 days." And sure enough...she was. This went on for years.
Sudden Separation Anxiety
At 3 1/2 years old, she all of a sudden did not want me to leave her at preschool or gymnastics. She clung to me where she was once her happiest and most excited to go. I chalked it up to normal toddler stuff. It did not last that long, but would come and go after a period of sickness. Life was pretty normal for a few years with small bouts of red-flag issues.
Strep at 7 and Sudden Onset OCD and more
At 7 years old in 2008, she got strep in mid-November, took 10 days of antibiotics and believed we were done with that infection. I remember on December 8th she refused to sleep over at my mom's house, which was her favorite place in the whole world. She said she would miss me. She clung to me night and day. Then she asked if she could be home schooled when she went back to school after Christmas Break because she missed me when she was gone. I chalked it up to me having a new baby, which she loved more than life itself. I also chalked it up to her being home so long for break and getting use to being home with me. In February she got another strep infection. A week later, she had a dream about tornadoes, which terrified her. She no longer wanted to go to bed, play outside, and the sound of the wind terrified her. I chalked it up to normal kid stuff. She suffered silently because she was an obedient child. She then began asking me all the time if the baby, Gianni was OK and if babies ever just die in their sleep. As much as I tried to reassure her, she was obsessed with the thought of Gianna dying in her sleep. She once told me that she waited every second of the school day for someone to walk in the classroom to tell her that something horrible had happen to Gianna. I chalked it up to her being totally in-love with her new baby sister...motherly love without the maturity to handle such intense love. At Gianna's 5th month, I had her share a bedroom with Gracie. Quickly Gracie seemed worn down with dark circles around her eyes and so unhealthy. I came to realize that Gracie was staring at Gianna all night making sure she was still breathing...she was obsessed and anxiety ridden!
In March, Gracie got another strep infection. She also now had a constant swollen lymph node in her neck with huge tonsils. The separation anxiety got bad within a week of the infection. She began having very slight pee accidents during the day. She went from having the most perfect handwriting to chicken scratch. I would tell her over and over, "Take your time writing. I think you can spell so much better now that your hand can not keep-up." Wishful thinking! Learning math facts became impossible to her ...the girl which every thing came easy was no longer. Her anxiety about Gianna would come and go. Her request to be home schooled would come and go. In April, May and June, I took her back to the doctors for possible strep, but instead the doctor diagnosed her with viral pharyngitis and laryngitis and left it untreated. She began to restrict what she ate complaining about textures, smells, and taste.... and her belly... how her belly always hurt. Some of these foods had been her favorites. She began to drop in weight quickly. The school would send me BMI index warnings as she dropped lower and lower.
After those rapid onset changes, her decline was slow and steady from that point on. I could not correlate it with anything. We tried gluten and dairy free diets and supplements of every kind to make her look healthier. She just looked so unhealthy. I knew something was wrong, but nothing was solid enough to put my finger on.
Sudden Onset of Tics
The summer of 2009 she began blinking...A LOT. I kept asking her what was wrong with her eyes. Was there something irritating them? Was she playing on the iPad too much and straining them? She would say, "I don't know. It just feels like I have to blink. Like when you have an itch. You can ignore it for so long, but eventually, you know it will feel better if you just scratched it. SO, I blink." Mind you, my son Skyler had started with a mouth opening and deep eye-blinking tic just a week before her. I brought them both to the doctors. I was told, "Skyler has tics which go along with OCD and Asperger's. Gracie is just faking it to get the attention Skyler is getting." (This was one of the cruelest and dumbest statements any doctor has ever told me on this long road.) Skyler went on antibiotics a month later for an infection and his tics went away. (Yes, we now know he has PANDAS, too.) However, Gracie's tics remained and got worse. Her teacher would ask me what was wrong with her eyes since she was always blinking and wrinkling her nose. These tics soon became breathing tics, which made her quietly breathe out quickly and hold her breath. By 3rd grade, she was getting remedial math help and was diagnosed dyslexic. She was falling off the academic ladder, my Gracie Girl who was once the brightest in the class.
She declined through out that year. That lymph node just kept getting bigger, and I was told kids can have swollen nodes for months. She dropped to 0% BMI. Every meal was torture to me as I sat and watched my daughter not eat knowing how much she needed to. I was told I needed to feed her more. (Gee, Thanks for the advice!) She had constant sties in her eyes, so I brought her to the top eye doctor and surgeon in our area. He said, "Tics are normal for some kids." Her teeth were crumbling apart, so I brought her to the dentist. He told me she just had soft teeth. I now know the lingering strep in her mouth was eating her teeth away. She totally dropped out of wanting or needing friends. She found almost all environments too sensory overloading and bothersome. She begged me daily to home school her. She could no longer finish a simple task like empty the dishwasher or clean her room, something she had always done. She could not keep the math problems from 'swimming' on the page. She could no longer finish a sentence without repeating and restarting it countless times. She would watch TV or talk while spinning and spinning and kicking her legs out. She began to hold her fingers in a strange position and pick up pieces of food by holding it with her thumb and middle finger and twirling her wrist as she placed it in her mouth. She was never still. She was rarely the happy, creative, carefree kid she had always been. She had begun hoarding everything. Her room looked like a hurricane had ripped through it because she could not throw anything away. She believed that everything had feelings and a personality...everything...stuffed animals which were piled high in her bed, bugs hit by the car window which made her sad to ride in a car, the tags you rip off your new clothes, bottle caps which looked to be smiling...EVERYTHING...and it was debilitating and irrational. Her fear of germs made her turn her cup to a new mouth spot so she did not “drink her own germs". She could not touch a dirty dish to fill the dishwasher without a severe panic attack. She looked like a deer caught in headlights most days with hugely dilated eyes. By the nighttime, she would crawl around the house because her joints hurt her so badly. All of these weird behaviors irritated and frustrated me because the doctors repeatedly told me that nothing was wrong with her.
She went to a sleepover party in June of 2010. Within a day, she began having full-blown body tics that fatigued her body so much by the end of the day, she was crying. We sat in my bed a few days later talking about how sad she was and all the things that were bothering her. She stopped talking and had a panicked look on her face...terrifying fear really. I said, "What just happened?" She said, "I see things sometimes." As a mother, my heart dropped. My kid was seeing things. I was loosing her. She was going insane. I asked what she saw. She said, "Shadows. Demons. Behind furniture or out the corner of my eyes." She is very religious and believed these demons were real. I collected myself trying not to look too freaked out and said, "Sweetie, there is something really wrong. Tomorrow we will take you to the doctors. Those shadows are not demons. You are hallucinating."
Maybe this is PANDAS
In the morning, I brought her to her pediatrician who had made me feel for years that Gracie was faking it, I was an overly worried mom, and that all of Gracie's problems were stress which Gracie herself knew was not true. I refused to take "no further tests were needed". I was a Momma Bear protecting her cub. We had an MRI, EEG, and blood work done. Everything came out negative except that Gracie had high strep titers, which indicated she had a strep infection, but the swab was negative and she did not feel sick. My pediatrician said, "Maybe this is PANDAS, but there is no treatment." I wanted to choke this doctor. For 4 years, I kept bringing Gracie in saying she was unhealthy, had these tics, and I was loosing her. And now, she tells me there is this thing called PANDAS that can cause facial tics and other mental issues which is triggered by strep. It was incredibly frustrating that her doctor, who knew her history of repeated strep infections and about PANDAS, never even considered this as something to test or tell me about.
I went home and read more on PANDAS. Gracie had 20 out of 21 PANDAS symptom. The only one she did not have was rage and for this I am eternally grateful. I remember the list stating choreiform movements with an explanation that if a child holds their hands palm-down and fingers out, they will begin to move their fingers like they are playing the piano and be unable to keep the fingers outstretched and still. I ask Gracie to hold her hands out and perfectly still. She immediately started the piano playing movements. I asked her again to keep her hands totally still. She said, "I can't. I have not been able to do that for a very long time." I knew it was PANDAS! I sat at my table and cried for almost an hour. Four years of bringing her to doctors. Four years of being blown off. Four years of watching my sweet Gracie Girl disappear. I was grateful we knew what it was, but so angry that the doctors had failed us.
I will not go into details of how we healed Gracie other than to say that it took 4 years of intensive antibiotic therapy with combinations of 3 different antibiotics at a time. Every PANDAS/PANS kids' journey to healing is different because each child's infectious trigger is different as well as their immune system. She is whole, happy, and now an honors student who loves volleyball, hanging out with her friends, and living life to the full. Her facial and breathing tics will flare when she gets a cold or is exposed to strep. She remembers very few details of her PANDAS journey. Us PANDAS moms call that PANDAS amnesia, and we are grateful our kids do not remember the hell they experienced.
My Hope for the Future
My dream is for a child to have a doctor recognize the symptoms early. Treat it immediately! My prayer is that when a parent suspects PANDAS, they will be met with doctors who entertain the possibility. My prayer is that when someone suspects their child has PANDAS and asked me where they can see a specialist, I do not have to reply, "Good luck as there really are none. And those that do, rarely take insurance."
PANDAS parents are exhausted from just dealing with our kids. To then have to fight the entire medical community to have our kid healed is inhumane. PANDAS AWARENESS IS KEY! Research is needed!
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