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.
A BIG THANK YOU to everyone that participated in this series today, and thanks to everyone that has participated in the past. We’ll never run out of reasons why PANDAS Sucks. (I did start a new series called PANDAS Silver Linings where you can share the good stuff that happens…good stuff DOES happen sometimes. It really does! I already have a few PSLs that have been sent into me, and I will post the first blog in that series soon. <3 )
Did seeing this post make you remember something you wanted to submit? Just click here to be included in #18. Or if you wish to go more in-depth with your story, send me a note here, and we can work together on your guest blog.
PANDAS SUCKS Because…I cant have my friends over with their kids without my son starting a fight it them all while being completely defiant with me. Cookie
PANDAS Sucks Because…the constant fear of a flare. Having to over observe your child, constantly watching for signs of regression. The fear sometimes robs you of the good days. SD
PANDAS SUCKS Because…it’s like walking on a minefield. You never know when it will explode. Ann
PANDAS SUCKS Because…there doesn’t seem to be enough physicians and medical practitioners that specialize in ‘treating’ PANDAS, and it’s been difficult for my son and his wife to find help for my precious Granddaughter. I pray more people will specialize in this field and there won’t be such a long wait to find help!! Camilla Smith
PANDAS SUCKS Because…my son is missing out on regular childhood rites of passage. I’m not sure he realizes it, but I do…and it breaks my heart for him. SJ
PANDAS SUCKS Because…I cannot stay at home in a bear hug with my daughter all day long. Kolbri
PANDAS Sucks Because…I am drenched in sweat and tears every morning before 6:30 am. My car ride to work is my only time I have to convince myself that I am a good mom, and we will make it through. Kolbri
PANDAS Sucks At School Because…my 7 year old, who has PANDAS, also tore her ACL. It’s a dreaded injury, but for her, I would take the torn ACL over her being terrorized by PANDAS any day. SR
PANDAS Sucks Because…just when I think I have gotten things figured out I realize I don’t; and its back to square one. CEB
PANDAS Sucks Because…it absolutely ran my family’s life for 10 years. My son got it at age 1 and went misdiagnosed until he was 11 1/2. Until his diagnosis and IVIG treatment last month, he was angry, depressed, rage-filled, obsessed, and wouldn’t leave the house for years without huge meltdowns. He refused to go to restaurants, church, the grocery store, Home Depot…anywhere outside our home was off limits and it was a huge rage filled battle everything we left the house. He was paranoid, sad, hated himself, and told me on a weekly basis that he hated me. He repeatedly said he wanted to die and couldn’t live like this anymore. Grandparents and friends cannot possibly understand what it’s like to have a PANDAS child. It’s awful, terrifying, scary, all consuming and exhausting. When people asked me how we were doing, I was never honest. They wouldn’t have believed me if I told them our reality. Hours and hours EVERY DAY of rage filled meltdowns, not being able to leave the house and feeling completely helpless as a parent–all while trying to protect my other child, who was scared for her life many times and has endured 8 1/2 years of an older brother with this awful disease. LF
PANDAS Sucks Because…no matter how much I’m doing for my son’s health or for the PANDAS/PANS cause, it never feels like I’m doing enough. Sarah
PANDAS Sucks Because…this disease made me a contaminant for my son, and I can’t help him set up his dorm or hug him goodbye when I leave him at college for the first time. PK
Again, thank you to all that submitted reasons for this post. PANDAS Sucks Because of so many reasons. Sigh. You can always vent on the PANDAS Sucks site. <3
*Initials/Alias at end of quote indicate the comment’s author. Names will not be used unless indicated on submissions.
Read the other installments in this series: “Your Words: PANDAS Sucks Because…“
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
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Sarah 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 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. See also 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.
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