PANDAS Sucks exists to tell our collective story about PANDAS/PANS. How it affects our children. How it affects our families. How it affects us personally and changes us. How it affects everything. How we ALL can heal and recover. Let’s tell the world together why PANDAS Sucks.
Thank you to everybody that took a moment to send in a reason. Telling your story, even in just a few words, lets others know that they’re not alone. We’re also creating a record to show that we exist and PANDAS/PANS exists and nobody can take away our truth. We know what we know…and we know that PANDAS Sucks.
PANDAS Sucks Because…it has made my normal sons not be able to enjoy life because of their irrational fears that “someone” might hurt them. Yes, I said sons. One with PANDAS and one with PANS. KR
PANDAS Sucks Because…My child wants to run away from her intrusive thoughts and I am lost at how to help her. Ann O
PANDAS Sucks Because…I’m tired of trying being on edge all the time wondering if or when PANDAS is going to come back and take my child. PANDAS Mom
PANDAS SUCKS Because…the people who don’t want to believe you don’t have to because they get the privilege of not living with PANS. LKSC
PANDAS SUCKS Because…while I was attempting to handle a temper tantrum/flare publicly, a bystander called the police and lied and said that I slapped my child across her face. Social services are certain to arrive soon. Every cell in my body is committed to keeping my baby safe. And then a stranger accuses me of hurting her. Then, while speaking to the police, my very sick baby accuses me of assault. Anonymous
PANDAS Sucks Because…I never thought suicidal thoughts occurred in 7-year-old children until my daughter screamed “I want to die” in the middle of a PANS-induced rage. LKSC
PANDAS Sucks Because…I’ve never been sh*t on more than when I try to speak out against what caused my daughter’s condition and try to prevent it from happening to others. LKSC
PANDAS Sucks Because…you have no control over your life and can’t fix this for your child. You have to rely on doctors that seem to be guessing themselves, and some don’t even accept that PANDAS is even real. J
PANDAS Sucks Because…it changes everyone’s life, and public schools don’t recognize any thing wrong. Diana
PANDAS Sucks Because…my 6-year-old daughter had her birthday party the other day, had the best day ever and the next day went into a horrible flare of symptoms. She has reversed back into every horrible symptom (extreme mood swings, bed wetting, nightmares, extreme separation anxiety, insomnia, tics, OCD, Irrational fears) all because she had a birthday party with friends and family. It breaks my heart to see her go through all of these horrible things just from being around people she loves. PANDAS SUCKS because she deserves to have a normal happy life and this disease is taking that from her. Kimberly R
PANDAS Sucks Because…my happy, healthy, active, outgoing son has turned into a fearful, panicky child, who feels like this food, clothes, the water his hands, etc… are
all contaminated. Our doctor did just diagnose him. LM
PANDAS Sucks Because…I will live with PTSD forever now. My daughters IQ is so low she will need to be supported for the rest of her life. This disease killed my marriage of 23 years. Teresa G
PANDAS Sucks Because…there is so much pain in the lives of the PANDAS/PANS Community as they scramble around trying to do what’s best for their child. There’s very little time for anything else except thinking about this medical conditions. And even if you are lucky to remove your focus for a little while because your PANDAS child is doing okay at the moment, your child sneezes or coughs or sniffs, and you remember everything all over again. Sarah
Thank you very much to those that participated in this blog post. You can send in as many reasons you think PANDAS Sucks as you wish by clicking here, and there thousands of reasons to list. Having a good day? Try to remember to send in whatever PANDAS Silver Lining you’ve found and offer some hope to a PANDAS/PANS Family.
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Have YOU found a PANDAS Silver Lining? Click here.
Want to send a message to Sarah? Click here.
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.” 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.