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.
I’d like to thank everyone that sent in their personal reasons for why they believe PANDAS Sucks. No matter how many of these blogs we publish, there will still be thousands of more reasons why PANDAS Sucks. Want to add your own words to the list? Just click here to be in the next installment. Or if you want to write a longer guest blog, send me a note here.
PANDAS Sucks because…my child has lived with a SEVERE headache now for 9 years. People also don’t understand his moods and think he is just rude when in fact he is…well rude but unintentionally so. His friends laugh at him for still carrying a teddy bear around 100% of the time. Lientjie
PANDAS Sucks because…half the time I’m guessing at what to do to help my son with his PANDAS. HE
PANDAS Sucks because…life’s on this roller coaster of ups and downs lets you see a glimmer of your child before taking them away again. Pandas is hell. Desiree Martyniuk
PANDAS SUCKS Because…it stole my son’s childhood. Melissa
PANDAS SUCKS Because…there are things that happen with your PANDAS child that you never want to talk about. Rages. Odd quirks. Things they say to you. The mean things you say sometimes even though you know your child is sick. Nobody can ever know what PANDAS is like unless they’re going through it too. PANDAS Mommy
PANDAS Sucks Because…new friendships end because Jake can be “out of his mind” for six to nine months. He is on the spectrum so friendships are hard to come by. Stacy Fox
PANDAS Sucks At School Because…it has robbed my son’s childhood during a very crucial time of learning, playing, interacting and just growing. The time he is missing with his classmates and friends, will never be recovered. Time that he is missing with family will be gone forever. His memories will be clouded with this awful time of doctor visits, blood work, tonsillectomy, IVIG treatment and just sitting in the house playing on his tablet. LR
PANDAS Sucks Because…some doctors just don’t know what to do. No thank you to psych meds. Augmentin, yes please. Kate G
PANDAS Sucks Because…it has taken a great amount of my kids’ spirit. It cause incredible heartbreak and pain; mental and physical. It steals time, energy, and strength. PANDAS sucks because it leaves parents in constant fear. Fear of a flare that could land their child back in crisis. Fear of the unknown and of the future. Fear to leave their child, or their child leaving them, because parents know it can come back angrier and uglier than the time before. Jackie Martin-Sebell
PANDAS Sucks Because…when you take your kid to the doctor for a strep test, you are kind of hoping it is positive because then you have an explanation for any behaviors you’re seeing. Sarah
PANDAS Sucks Because…I am tired of justifying my sons behavior with a long-winded medical explanation to judgmental people who don’t care anyway. Cookie
PANDAS Sucks Because…not enough doctors are aware of PANS/PANDAS or how varied and different the symptoms can be! My daughter was not diagnosed for years because none of her doctors knew enough to check for it. Years of suffering as many of you already have experienced! I finally found a doctor that knew and was educated enough to recognize and do tests. Mama bears and Papa bears unite! Grrrrrr! CH
PANDAS Sucks because…it is a real family wrecker. I have witnessed my children, two boys, being completely transformed into monsters that I never knew was lurking somewhere within them. Our family has been going through this dangerous roller coaster ride for almost 4 years now. My younger one is 11 years old and is a lower functioning autistic child and my older son who is 14 and has Aspergers. Autism seemed terrible enough before we knew what hell would really seem like and it’s truly an understatement. Both boys had different symptom manifestations, and it took a little while for me to understand what was happening to my kids. It took even longer for me to convince my husband and their pediatrician who still thinks it’s a myth. It’s almost pathetic. We are not out of the woods yet and always looking for ways to deal with it. It’s also very hard to explain to others, especially teachers at school about the condition itself, let alone its weird expressions. It’s as debilitating as it is life wrecking for the whole family. So, YES, PANDAS SUCKS BIG TIME! 🙁 Roopa Subramani
Thanks to everybody that submitted their reasons PANDAS Sucks is open 24/7 for you to vent. You can tell us why YOU think PANDAS Sucks OR you can share a PANDAS Silver Lining you’ve found. Good things happen too. <3
*Initials/Alias at end of quote indicate the comment’s author. Names will not be used unless indicated on submissions.
Click here for other installments of “PANDAS Sucks Because…” and other Your Word series.
Tell us why YOU think PANDAS Sucks. Click here.
Have YOU found a PANDAS Silver Lining? Click here.
We post these reasons in a blog series.
Want to send a message to Sarah? Click here.
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. 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.
Have something you want to say? Send a message Click here.