Your Words is a PANDAS Sucks series gives you opportunities to tell your story or give commentary in YOUR WORDS. It’s good to see what others are going through so you can know that you are not alone. It can be cathartic to read the guest blogs and to write them. If you want to share your story, just click here. And if you don’t want to use your real name for privacy purposes, you can use a pseudonym. I’ll never tell anybody that your name isn’t really Lola. 😉
Today’s Your Words: Guest Blog is from Vicki. She tells us how PANDAS/PANS has affected her daughter Joy. Here’s Vicki Vossen’s story in Her Words:
Our 8 year old daughter, Joy, was diagnosed with PANDAS in July 2016.
She had tried jumping from a moving car and wanted to kill herself. After weeks of defiance, aggression, and combativeness I knew something was seriously wrong. I got her to the emergency room where she had to be restrained and guarded for 48 hours until we could find a bed in a psychiatric ward. She didn’t sleep for 96 hours straight. Her body wouldn’t stop moving. Constant motion. She couldn’t stop.
She had recently had strep throat. Antibiotics were started up again and her psychiatrist mentioned inflammation of the basal ganglia. She was hospitalized for a week. Once released, we met with her pediatrician to discuss PANDAS.
Her pediatrician ran tests and found elevated strep and mycoplasma titers. She was put on azithromycin and our daughter came back. She was nice, cheerful, and compliant. Once off of the antibiotics the defiance and aggressiveness would reappear. Not as bad as the July episode but it was hard.
She obsesses over her ears. She digs in them until they bleed. She wants me to “check them” all the time.
Joy was adopted from foster care. We’ve had her since birth. She was exposed to crack cocaine and alcohol daily for the first 6 months in-utero. We knew she’d have differences. We knew the likelihood of Fetal Alcohol Syndrome was high. She’s very smart, but quite impulsive and very stubborn. She’ll make a good salesperson someday because she’s very social, likable and won’t take “No” for an answer.
In hindsight, I always knew she was sick as a baby/toddler because her mood changed and she was usually angry and naughty. She was diagnosed with separation anxiety long before we’d heard of PANDAS. If I sent her to grandmas for a weekend she’d punish me for sending her away. She’d act out so much, that it’s not worth taking the break from her because she’d be even worse when she got back. She slept in our bed or room until age 7 and even now I’ll find her occasionally on the floor in my room.
Separation anxiety got worse with PANDAS. A babysitter called me home from the movies. She runs a preschool, she has a ton of experience with different kids. When I got home Joy was hanging by her feet out her bedroom window. The house was trashed. It was bad.
It’s now, 7 months post diagnosis. Some days are normal Joy. Others are full of aggression and a mean girl. She’s very manic today. She screams with painful headaches. And is throwing herself around because her nose hurts. I suspect a sinus infection. I will take her to the doctor tomorrow. She’s on a daily prophylactic dose of amoxicillin. She’ll need something stronger. I’m afraid she’s had PANDAS her whole life and I’m just now treating her. Friends and family refuse to watch her as it’s like playing Russian roulette. Will she be sweet and compliant or will the police have to be called to assist with a violent child?
PANDAS Sucks because we walk on eggshells every day.
::Update 8 months post diagnosis (March 2017):: I have removed Joy from all psychiatric meds except one. She is on her daily antibiotics and allergy meds. She takes meds to help with sleep and meds to help with impulsivity. We are in a smaller school setting (8 kids in her class) and she is getting lots of supports and learning to advocate for herself.
Thank you Vicki for sharing Your Words and your story with us (and thanks for your patience in getting your guest blog published). I also asked Vicki to also complete the sentence “PANDAS Sucks Because…”, and she said, “PANDAS Sucks because it’s robbing my daughter of a happy childhood.” PANDAS has certainly has robbed Joy of her joy that she deserves. Here’s hoping that the antibiotics and allergy medication and the increased support brings more and more healing for Joy and her entire family over the summer.
It’s so sad how much PANDAS/PANS takes from our kids. It’s sad how different and yet how similar all of our PANDAS/PANS stories are too. We’re not alone. Click here if you’re interested in telling your PANDAS/PANS Story in a PANDAS Sucks guest blog.
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings” and a volunteer and technical adviser for the PANDAS/PANS documentary “My Kid Is Not Crazy.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.