Welcome to the 15th installment in an ongoing series: “Your Words: PANDAS Sucks Because….” This is when we list out all the reasons that PANDAS Sucks so the world can read about them. For this edition, some folks completed the sentence: “PANDAS Sucks At School Because….” So we have a mix of reasons that PANDAS Sucks…SUCKS, I say!!!!!!!!
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.
Wish you’d sent in all of YOUR reasons PANDAS Sucks? Sent them now. Just click here to be included in the next installment. Or if you want to tell more of your story, contact me here, and I can help you do that.
This installment is full of great reasons why PANDAS Sucks. Please consider sharing this blog post. I know we in the PANDAS/PANS Community relate to all of this. The purpose is to vent about how much PANDAS/PANS Sucks AND also spread Awareness and Education about what we go through. It can help others be more understanding about why our kids do what they do…us too. I’m a Mama Bear sometimes…we all are, eh? (Well, some of you are Papa Bears! 🙂 )
Thank you for participating and for reading. I appreciate the support, and I also offer you my support. PANDAS/PANS ain’t easy. Keep Going!
PANDAS Sucks Because…My 15 year old daughter cannot just be a happy teenager! She turns 16 tomorrow, today has been rough, meltdown after meltdown, coming home from a “vacation,” which she felt sick, moody and tics are outta control! Prayers for My Jodie!!!!!! This is the hardest illness ever! No relief, everyday is a battle! ACW
PANDAS SUCKS At School Because…every nine weeks when I see her report card, I also see the number of days and 1/2 days she’s missed. Even if we are in a good place with PANS, once I see those numbers in black and white I lose my hope and realize the gravity of what we are fighting. The number of days she’s missed suddenly translate to scenes from the days she wasn’t able to go to school. And then I’m reminded of how she couldn’t get out of bed, do anything asked of her, how anxious she felt, how we walked on egg shells trying to prevent an 8 hour meltdown, how our lives and the lives of our other five children are put on hold, how we have to drop everything and tend to her needs, how she tried to jump out of a vehicle moving at 75 MPH, and worst of all hearing that she–my 7 year old baby girl–wanted to die. She confessed she’d rather die than have her friends see her like this. I’m sick of feeling helpless. I’m sick of feeling like I have to choose my mortgage or the health of my child. It’s maddening and I’m pissed. And then I’m pissed at myself for being pissed. Lara
PANDAS SUCKS At School Because…even on good days, when good things happen, he sees the negative and beats himself up because of it. School becomes an increasingly difficult place to go to, and he’s overwhelmed more and more. He’s not LAZY – he just can’t remember – even if you tell him five times over. Transitioning from one activity to another is difficult, especially if it is from a pleasant activity to a not so pleasant one, like having to start homework. It is never easy to fall asleep, and never easy to wake up. Teachers don’t always follow the accommodations, and sometimes I feel guilty for asking to use them. I’m always being told ‘all the children do that, not just him.’ But they don’t realize the extent of the frustrations it builds in him, or his fight every day just to do the normal things kids do. I sometimes run out of patience, and that is the most awful thing, because sometimes I say things I know I shouldn’t. LK
PANDAS SUCKS Because…it’s like being on a roller coaster through your worst nightmare with characters from Poltergeist, Scream, and Nightmare on Elm Street. Throw in some random rabid animals and I guarantee you’ll never sleep again. Jolie
PANDAS SUCKS At School Because…it took so long to break through to the administration. Sympathy and understanding were always overpowered by “the rules.” Until my child started running away from school. After being chased around the baseball field by a police officer and me for half an hour, then explaining to the officer that “throwing him in the back of the squad car and putting the fear into him” or “calling the ambulance and committing him” were not options and finally stopping the officer when he was telling my son that he didn’t love his mom because he was going to get mom arrested for not sending him to school, and then the next day chasing him a quarter mile down the road before catching him by the highway…after all that, the school agreed to homebound tutoring. We were grateful, but tutoring was its own kind of torture. So glad 4th grade is OVER! MicheleJ
PANDAS SUCKS Because…it ruined his 6th birthday, and he will NEVER get that day back! PANDAS sucks because he’s missing the fun of of kindergarten; fieldtrips, end of year picnic, kindergarten graduation. PANDAS sucks because school really isn’t even an option unless it’s homebound. Homebound requires someone to always be home, and you NEVER get a break! He’s missing friend’s and birthday parties and life in general. PANDAS just plain sucks! Jolie
PANDAS SUCKS At School Because…when you tell the school or other members of the community about the treatment that is available but that it’s too expensive for your family and not covered by insurance, you get blank looks or sympathetic nods. But if you told these same people your child had cancer, ALS or diabetes and you couldn’t afford treatment they’d be falling all over themselves to set up funding pages, dinners and raffles to raise money. Anonymous
PANDAS SUCKS Because…One of the best pediatric hospitals in the country told us to ” find someone in your area”, when we brought our child in with acute onset of OCD and tics. If they had done simple blood tests they would have caught the infections and my child wouldn’t have had to suffer with this for years before we could find medical help. Anonymous
PANDAS SUCKS At School Because…schools and others don’t understand that you can’t “therapy away” brain inflammation. Anonymous
PANDAS Sucks At School Because…When your almost 17 year old son has to come home from boarding school that you have already paid for and insists on the only way he could finish the school year was at Sylvan Learning Center. There is no way he would work with me his mother. So I worked all day, rushed home to get him, sit in traffic an hour to get to Sylvan. Waited for him for 2 hours and then sit in traffic another hour to get home. Hired a sitter to take my other two younger to their team practices. But…after going to Sylvan over 30 times he has passed the 10th grade. Yay! Except for PANDAS is getting us at the moment, tonsils will be removed on Monday, if he will go ahead with it and then possibly another IVIG. Joan
PANDAS SUCKS At School Because…My child with genius IQ in some areas refuses to attend school 🙁 …and his health (mental and physical) is simply more important! Mary Nelson
PANDAS Sucks At School Because…kids are just mean, no she’s not cuckoo and no she’s not trying to get attention, and yes, she does want friends. This doesn’t fit into the nice little box that administration has learned about, so it must be behavioral?!?! Everyday…just waiting for a call from school. REK
PANDAS Sucks At School Because…you can only do so much to advocate for your child while keeping them IN school. As much as possible, you need to keep it together and try to stay calm during the endless meetings you have to attend. There were times when every fiber of my being wanted to scream obscenities at the teachers and administrators during those stupid meetings, but I knew I couldn’t do that. I also couldn’t just stand up in the middle of a meeting, grab my kid and storm out and never, ever return. Well, I could have done all of these things, but it would have defeated the purpose of trying to advocate and educate the school about PANDAS/PANS. Oh but I daydreamed about telling everybody where to go all the time. Every meeting was the same, and it was always a waste of time because they never followed my suggestions. School is the definition of insanity the way they do things the same way every time. Anon
PANDAS Sucks At School Because…I found that the school was pretty good at getting the gist of PANDAS/PANS and what it entailed…until it happens. When your child is flaring and in distress because of an illness or an exposure to an illness, it looks like behavior issues and they want those to just stop now. That’s why my son missed so much school. It was easier to keep him home than to deal with worrying about how the school would handle any issues or how they might even escalate things versus helping him calm down. PANDAS/PANS kids do not fit into the boxes schools want them to fill. Not at all. It always sounds like you are making excuses for your child…BUT WHEN YOUR CHILD SUFFERS FROM BRAIN INFLAMMATION, THAT IS ONE HELLUVA “EXCUSE.” Especially when you go to a meeting about whatever it was that happened, and then almost like clockwork, you get a message the next day that strep is present in the classroom. OMG! Sarah
PANDAS Sucks At School Because…medical issues are seen as behavioral issues. RW
PANDAS Sucks At School Because…the school wants a new doctors note every time there’s a change in attendance. Christine
PANDAS Sucks Because…every time I get sick and run down my kids have a flare and I don’t have the energy to deal with their behaviors on top of everything else. MD
PANDAS Sucks At School Because…school is yet another fight we didn’t win. Alina
PANDAS Sucks Because…it makes my son not know what to expect. It has taken away things my son loved. It changed our son from confident to doubting every decision. KR
PANDAS Sucks At School Because…I have had to leave my job as a special ed teacher (where I might be hit, kicked, or spit on) to go pick up my daughter at school because those special ed teachers can’t help her. PANDAS sucks because I walked in to help them calm her to see her playing with an outlet and the assistant principal standing over her watching. That look in her eyes was a look of fear and desperation. PANDAS sucks because 2 of the 14 other people at that IEP meeting have actually put their own feelings aside to see that this is a 5 year old begging for help. PANDAS sucks because my daughter has been out of school on homebound for 3 months of kindergarten. VB
PANDAS Sucks Because…my son with OCD now sees me as a contaminant. He has trouble even being in the same room with me. I am heart broken and know it is much harder on him than me, but this is really, really hard! PK
PANDAS Sucks At School Because…Within days your child who fit into the main crowd has now stopped talking, playing, reading, doing homework, schoolwork or interacting at all. Pastimes are sitting fetal position on the couch or staring at the wall only inches away, caught in a world of his own. You hear labels like catatonic, psychotic, dementia, epileptic. You are told be several professionals to consider a mental institution. You cry as you look at a shell of a child void of life and wonder if things will ever change. Within 6 months the child who was ahead of the class is now put into a special needs class if they can attend school at all. Family, friends, doctors and teachers won’t believe you. The only ones who believe in helping, charge out of pocket and appointments are made months to a year out. Other PANDAS parents tell you more than any medical professional could. Life is turned upside down and you gasp for air just trying to survive; mentally, physically, and emotionally. TA
PANDAS Sucks At School Because…because the school district will NOT accommodate our kid’s placement for a small school setting in order to keep him healthy and away from 2500 kids worth of pathogens. Terri
PANDAS Sucks At School Because…of that moment when you realize your Dd’s school binder (meaning all the 504/IEP, HHT, appeal BS and documents from this school year–not her actual school binder of school work) is bigger than the medical binder. ATW Thanks again to everyone that submitted the reasons they think PANDAS Sucks. Remember, you can always submit reasons on the PANDAS Sucks web site or send me a message anytime. <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…“
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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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