Welcome to the 13th installment in an ongoing series: “Your Words: PANDAS Sucks because….”
As you know by now, 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.
This blog is here anytime you need assurance that YOU ARE NOT ALONE. It’s also here so you can assure others that they are not alone. By telling our stories…the good ones and the bad ones…we can heal ourselves and that will help heal our kids. Venting about why PANDAS Sucks is cathartic and helps A LOT! Want to go a step beyond why you think PANDAS Sucks? Contact me about telling your story in more detail.
Thank you to everyone that shared their reasons why PANDAS Sucks. Did you miss sending in a reason for this edition? No problem. Simply click here and send your reason(s) for the next one. You can also submit reasons via PANDAS Sucks Facebook Page…just look for the special button at the left side of the page.
PANDAS SUCKS because…My son attacked me in front of the entire school at pickup. He was upset that he didn’t have enough keychains on her backpack, and he fell to the ground in the parking lot, hit me, bit me, strangled me, attacked me with everyone staring and not understanding. The school barrages us, and the camp wouldn’t allow him when I mentioned Pandas, so we don’t tell the school. The camp hid from us and showed up at the bus stop to make sure he didn’t come. The school won’t understand, everyone says, it will just make him look worse, as they call us into meetings thinking we are at fault. Everyone tells us they like him and really care about him. I want to shout it from the rooftop, “My son has Pandas”, but I know it doesn’t help and may actually hurt and it was a meant-to-be lesson this summer. A mood disorder or ADHD or both, but then all of sudden for weeks or months, he’s perfectly fine and happy and adorable and I always love him more than anything in the world and understand him more than anyone. SS
PANDAS SUCKS because…our child has a crisis (medical or emotional) almost everyday and not even the most skilled of doctors has been able to help him yet. RW
PANDAS SUCKS because…it makes my make-up run down my face. Often. It’s such a waste of good make-up. (We are in a flare, can you tell?) Molly O’Shea
PANDAS SUCKS because…I hate hearing my 9 year old complain every day that no one believes him that he doesn’t feel good. That we take him to all these doctors but no one makes him better. That his body does things he can’t control. That I don’t know what to do to help him. Meegan
PANDAS SUCKS because…if we would have known about PANDAS six years ago our lives would be different. When my son had a sudden onset of OCD and then became aneroxia the peditrician sent us to a psychiatrist and on and on trying strong drugs that had awful side effects, in hospitals for panic attacks and NO ever mentioned PANDAS, I had never even heard of PANDAS until someone recommended Dr. Latimer and we saw her in the summer of 2015. Within 45 minutes she said “I am 99% sure he has PANDAS.” Now the fight begins to get my son back. Joan
PANDAS SUCKS because…Uncontrollable mood swings, severe bouts of anger, morbid fears arising from petty causes. VI
PANDAS SUCKS because…we have to face life-altering fears and big disappointments repeatedly. It’s exhausting. We keep the proverbial boxing gloves with us all the time; at the ready for the fight. Be sure to take breathers from that, but push through self-doubt. Know that there is no giving in. When I see that happen, my heart aches even more. Wendy (Spotlight: PANDAS/PANS Advocacy & Support)
PANDAS SUCKS because…It is heartwrenching to watch pandas children suffering. They are fully aware their symptoms are not normal and my son begged me to make it stop. Worst part is its hard to get this illness treated or even acknowledged. Its scary. I hate pandas! Caitlyn Shaw
PANDAS SUCKS because…you have to get lots of blood tests and IVIGs and doctors don’t understand. Most doctors are stupid because they don’t understand it or believe that it exists. M Davis
PANDAS SUCKS because…my otherwise “normal” daughter is gone. Barely a trace of her sweet personality. I am mothering a stranger. Someone that I find hard to understand, hard to relate to. It is exhausting. SK
PANDAS SUCKS because…it robbed my children of their ability to be happy, healthy and just BE children. It crippled them with OCD, anxiety, and aggression. It changed them from sweet gentle souls into angry and often frighteningly violent children. It robbed them of precious learning and growing time. Heather (Your Words: Heather’s Story–Hope With Homeopathy)
PANDAS SUCKS because…I get a sick feeling everytime my phone rings when my son is at school…I cannot relax until I pick him up from school. JV
PANDAS SUCKS because…it’s a cash business. Doctors who treat and diagnose PANDAS are cash only. It’s insane and unprofessional. So those without economic resources go untreated and undiagnosed. Melissa (via Instagram)
PANDAS SUCKS because…there is no black and white! Parents are left wondering through a gray area that is so scary in the beginning. There are no stragight forward answers! We have to stay up night after night reading, researching, and fighting for answers! We won’t stop! We want our children back!!! Krissy (via Instagram)
PANDAS SUCKS because…just when you think it is going good… Wham… It’s baaaaccccckkkkk! Jeanne (Your Words: Jeanne’s Story–One of Hope)
PANDAS SUCKS because…there are so many freakin’ unknowns. No matter how long you have been inside of the belly of the PANDAS beast (going on 6 years now), it’s always a surprise when an exacerbation or flare happens. And you never know what to do exactly because each exacerbation and flare is different. There’s so much guesswork while TRYING TO HEAL YOUR CHILD FROM BRAIN INFLAMMATION! I have a supportive local doctor, but I still have to know what to do, what to add, which tests to get, and all of that. You also need to be able to know when it’s time to contact your PANDAS Specialist…how long do you give your child to try to snap out of it? And if you’re like me, you start with tough love thinking that you might be able to jar your child out of it, even though that never works…but you think this time it might…then nope, you just feel like a bitch because you’re child really can’t help it. And zero amount of positive thinking can keep PANDAS at bay when the auto-antibodies start doing their dance in your child’s brain. It can start gradually, and you try to tell yourself it is just a blip and minor…until you realize you are in the middle of it again. And pieces of every January and February have been stolen from my child for the past SIX YEARS…not to mention all of the other exacerbations and flares throughout different seasons over the years. I’m so sick of PANDAS and how when it hits, I’m unable to make any plans. Even when I do make plans, I try not to get too excited, just in case the monster hits us. I did everything I could possibly do to protect my child this time…and he was STILL exposed to strep at close range, which sent him into a tailspin in the next weeks. And it’s not THE worst he’s been by any means, but it always feels like the end of the world until it’s over. When will it be over?…it’s anybody’s guess. It might be over now and what I’m seeing could just be the smell of pre-teen spirit (he turned 12 this month). I hate PANDAS. I hate PANS too. I hate that any families suffer from these conditions, while the debate still rages on about them among non-PANDAS/PANS doctors that seem to be okay with the high level of suffering our children experience. IT IS NOT OKAY!!!!!!!!!!!! Withholding appropriate PANDAS/PANS treatments from children is cruel and unusual and definitely does the harm that physicians say they will not do. ~Sarah Jane Alleman
Thanks to all the folks that sent in their reasons for this ongoing series. PANDAS Sucks is always online if you ever need to scream about PANDAS/PANS. Just visit our web site here to shout out your own reasons why PANDAS Sucks because it really, really, really DOES suck!
Love,
*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…“
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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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PANDAS Sucks 
My heart goes out to all the children who deal with PANDAS. To our grandson, Jesse, we love you and pray there will be a cure, SOON !!!!!! Love Bumm
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