HAPPY BIRTHDAY PANDAS SUCKS! The PANDAS Sucks Blog is 4 years old today. It was born on 10/9/13…the very first PANDAS/PANS Awareness Day. 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. We work together to tell the world how much PANDAS (and PANS!) Sucks, and we get to know that we’re not alone in all of this.
For Awareness Day, I usually write a blog post that is full of self-reflection and plans for the coming year. On this FIFTH PANDAS PANS Awareness Day, I’m letting YOUR WORDS do the talking instead with a jumbo blog post of 50 reasons y’all have sent in for the Your Words series: PANDAS Sucks Because….” I could come up with about a million reasons PANDAS Sucks on my own…maybe we all could. I also find that PANDAS has a way of sucker punching you and creating new ways to suck on a daily basis. Miss your chance and want to send in YOUR reasons that PANDAS Sucks for the next blog post?…just click here.
Thank you to everyone that has ever participated in this series and other facets of the PANDAS Sucks Blog! I appreciate your readership! Now, here are the reasons YOU said PANDAS Sucks Because…:
PANDAS Sucks Because…Our child could spend years showing us how sweet, thoughtful and caring he is. He generously shared his last candy, repeatedly gave up his own needs to help his younger siblings, showed genuine concern for others, showered us with love, forgave our mistakes, swallowed his frustration, accepted our explanations why we didn’t follow through, patently waited and innocently trusted for the next time, apologized more than we have, openly expressed affection for us, and showed us a million ways that he wants to please us, do what’s right and be good. But after a couple of weeks of PANDAS robbing his brain, we begin to forget. Others convince us that we are fantasizing about who he was and the very worst of all we begin to accept it. We forget the real child. The kind, sweet, the trying oh- so-hard to please child. We forget that he is there, trapped and crying that we remember him. We betray his ultimate trust and let his actions of a couple of weeks that were beyond his control overtake the years he labored to show us the beautiful boy he truly is. I’m so sorry, sweetie. I believe in you and am so proud. PANDAS sucks horribly for both of us. ~MD
PANDAS Sucks Because…My son was the most happy and loving baby boy I’ve ever known, and PANDAS took him from me. ~Felicia L
PANDAS Sucks Because…It kills the hopes, dreams, and aspirations you have for your child and family, and then robs you of the chance to mourn that loss. ~SLG
PANDAS Sucks Because…It has stolen my children from me. It has stolen childhood from my children. School, activities, friendships,opportunities…all of those things are lost for my children because of PANDAS. ~PANDAS Mom
PANDAS Sucks Because…It is robbing my family of our son’s happy-go-lucky childhood. ~Ann
PANDAS Sucks Because…It steals your child and is difficult to cure. ~PANDAS Parent
PANDAS Sucks Because…Watching old videos of your child talking, being happy and now they are completely changed and you wonder if you’ll ever get that back. ~Anon
PANDAS Sucks Because…I want my child to be the person and have the life that “could have been. “~L.S.
PANDAS Sucks Because…You, as a parent, are torn up on the inside ALL the time as you watch your child struggling and suffering. The patient and the family are exhausted physically and emotionally. Doctor’s ,friends, family , church, and community do not really understand the magnitude of the of the suffering and stress on the ill person and their families. Some folks think they know better and judge both you and your child and try to give ignorant and unwarranted advice. ~CJH
PANDAS Sucks Because…PANDAS parents have to be managers of care, without prior training or qualifications. The hyper-vigilance required is exhausting. ~GW
PANDAS Sucks Because…At this point in our journey, we never know when “the other shoe will drop”. In the past before we got a true diagnosis and in the beginning, when they would put my daughter on trial doses of antibiotics and then wait for 5-9 days for the symptoms to come back until finally our docs agreed to keep her on all the time, there was so much disruption and turmoil. Our whole family was torn apart over and over. Lengthy hospital stays, induced comas meaning that someone had to be at my daughters bedside 24 hours every day. She is non-verbal and autistic so the hospitals will not watch her (not that I would have left my typical daughter alone in a hospital either), so my husband would have to take off work, and my healthy daughter would have to live with friends even our dogs had to go to the kennel! Now that my daughter is on antibiotics daily, she is definitely a million times better than those days but she still has flares when her immune system “turns on”. When this happens, our whole family holds their breath waiting to see if it passes within 24-48 hours or if we are headed into hell one more time. ~Jacky
PANDAS Sucks Because…My children lost their childhood. Including our third “healthy” child. We know our PANDAS/PANS kids suffer, but so do their siblings. ~Mom to 3
PANDAS Sucks Because…My children have lost a huge part of their childhood. ~MJ
PANDAS Sucks Because…I want my boys to be normal and well and happy. To be anxiety and worry free. To not feel like they are different! ~Anon
PANDAS Sucks Because…It took away my happy child and replaced him with someone I don’t know. We have come to know this new child and love him dearly and every once in a while we get a glimpse of the real Lucas behind the damage that PANDAS has caused. ~PANDAS Parent
PANDAS Sucks Because…My child is forever changed from the trauma and suffering. ~Donna
PANDAS Sucks Because…It robs my intelligent, inquisitive child of her ability to use her strengths and function in the world around her. ~TM
PANDAS Sucks Because…It has torn our family apart. ~Anonymous
PANDAS Sucks Because…It is ruining my sons childhood. ~PANDAS Mom
PANDAS Sucks Because…My son was asked to leave a school he had been at since he was five years old because they refused to even try to accommodate his illness. ~Anon
PANDAS Sucks Because…It stole so many precious years away from our daughter and family. ~LH
PANDAS Sucks Because…It robs children of their peace of mind, joy and their childhood, it’s heartbreaking and layer on the added dimension of lack of awareness, diagnosis and treatment it’s incredibly isolating and increases the hopelessness and terror even more. ~PANDAS Parent
PANDAS Sucks Because…Everyone else is uniformed. I am trying to balance everything else in life with my son and his PANDAS. But I also have to be the one who defines, explains, and informs everyone; family and friends, teachers, etc. And I am still new to all of his myself! ~JM
PANDAS Sucks Because…I don’t even know how to be a good parent anymore. I’m yelling at my kid about things he can’t control even though I know he can’t control them. I’m so sad because I had such big dreams for my child, and he had dreams about what he wanted to be when he was a grown up. It feels like absolutely none of those dreams will ever come true now. ~PANDAS Mom
PANDAS Sucks Because…It makes me do things I regret all the time”. ~A.C.T.M
PANDAS Sucks Because…It’s robbing my son of time, confidence and normality. It causes tremendous stress and fear for the entire family. ~DH
PANDAS Sucks Because…my 7-year-old has told me she wants to die. Despite her being in a much better place now, I am left scarred and scared for her. ~SR
PANDAS Sucks Because…It’s an up and down roller coaster. When things are better and you think you can relax, BAM another flare occurs. ~Anon
PANDAS Sucks Because…It steals kids and holds families hostage. ~PANDAS Mama
PANDAS Sucks Because…Not so much even for what it is, sucky as it is, but for the fact that it is not well-known or understood so it’s a battle to get treatment for our kids. You really need to be made strong stuff. ~Warrior Mom
PANDAS Sucks Because…It robs my intelligent, inquisitive child of her ability to use her strengths and function in the world around her. ~TM
PANDAS Sucks Because…It took us 7 years to get proper treatment even though she was diagnosed by a neurologist in 2008. However the neurologist said to treat with SSRI and CBT Pandas sucks because the school doesn’t understand PANDAS Sucks Because most of your friends and family don’t understand. PANDAS Sucks Because our kids don’t understand and there is no support groups for them to talk to other kids with this disorder PANDAS Sucks Because it has robbed my daughter of her entire school experience from preschool till now…16 years old. ~A Mom
PANDAS Sucks Because…Nobody can tell you what the true prognosis is…..I could live in this quagmire a lot easier if someone told me that he would be well and have a meaningful, fulfilling, and HAPPY life after “x” date or period of time. The worry is relentless…..RELENTLESS. ~Anon
PANDAS Sucks Because…It changes your entire life. Nothing is easy or normal anymore. Everything is so stressful. Watching your child suffer and feeling so helpless is the worst feeling in the world. No one understands what it feels like to go through this unless you have lived it yourself. It is truly heartbreaking on a daily basis! ~Kimberly
PANDAS Sucks Because…It took away my son’s childhood. ~PANDAS Mom
PANDAS Sucks Because…It depletes you emotionally, spiritually, financially, physically and mentally. When there is nowhere left to go, no money left to do it and no one who will help, the journey just seems insurmountable. ~Anonymous
PANDAS Sucks Because…Even though things are good right now, I live with the constant fear of my child getting sucked back into a PANDAS flare. Overnight, our world can be turned upside down. ~Leighanne
PANDAS Sucks Because…It has trapped my son into world where he has gone mute, and is on a feeding tube. He has missed out on so much-middle school graduation, getting his driver’s permit, attending school with his friends. My heart breaks for him, and I just want our lives to be normal and boring! ~Leigh Ann
PANDAS Sucks Because…It destroys the lives of children and their families. ~SB
PANDAS Sucks Because…Most people don’t get it. This makes you feel very alone. You have to pick and choose who you tell. Most people think we just need to discipline. ~Anonymous
PANDAS Sucks Because…I feel like I can’t help my child when he is so upset. ~PANDAS Mommy
PANDAS Sucks Because…We’ve lost years of our daughter’s childhood. Instead of meeting up with friends and chatting about clothes and boys, our daughter was planning to jump off our roof. Our entire family life has revolved around our “mentally ill” daughter for years. Pissed and sad beyond words. ~Anon
PANDAS Sucks Because…We don’t know if we will ever have our child back or if he will ever be independent. We worry upon our passing who will care for our child. ~RW
PANDAS Sucks Because…My happy, healthy, smart child has been taken from his family and he may never have a normal life again. ~Jennie
PANDAS Sucks Because…It destroys everything about having a normal childhood. It takes away a child’s confidence, innocence and the beauty of seeing life through the eyes of a child. ~PANDAS Parent
PANDAS Sucks Because…It takes your child away, and they have no way of expressing what is going on until later. ~Anonymous
PANDAS Sucks Because…My sweet boy, the boy I fought through the system to adopt, who is so attached to me its ridiculous, is the same boy who will, during a flare, describe in detail about how he’s going to hurt me. ~MT
PANDAS Sucks Because…Too much of the medical community refuses to connect the dots between physical illness and mental health. ~Caroline H.
PANDAS Sucks Because…It turned my daughter, who was the envy of other parents–sweet, obedient, kind, funny, outgoing, ambitious, determined, a good friend–into a child that we did not recognize. PANDAS Sucks Because, as a mom, I feel so alone in this battle. Friends do not understand, and some do not care to learn. ~TLH
PANDAS Sucks Because…Even though we have an Awareness Day on October 9th and there are countless articles about PANDAS/PANS (and some books) and some states have legislative activity, it all still boils down to the parents having to take action. It’s exhausting and tiring and frustrating to have to not only take care of your child’s health but to feel like you need to educate the entire world about PANDAS/PANS. You as the parent never get a break, or you feel guilty when you take a break, even if you know you have to take care of yourself too. And even if things seem like they are okay with your child, the underlying damage is still there causing issues that you may or may not be able to see. It could also all change overnight, and you could be right back in the middle of the nightmare of PANDAS just like that! ~Sarah
Thank you very much for sharing things that TOTALLY SUCK about PANDAS. Sometimes it feels like we’re preaching to the choir since so many PANDAS/PANS Parents and Caregivers read the PANDAS Sucks blog. But when you share PANDAS/PANS articles and posts, other folks do get a glimpse into our lives. It’s also nice to nod along and know that you are NOT alone in any of this when it comes to PANDAS/PANS…especially on PANDAS/PANS Awareness Day.
Did you miss sending in your reasons PANDAS Sucks? Just click here for the next blog post. If you want to share the good things that happen (because good things DO happen too), you can send in those PANDAS Silver Linings. And if you want to write more about your story, I also offer space for Your Words as guest blog posts.
OH! And for PANDAS/PANS Awareness Day, I’m doing a Book Giveaway on the PANDAS Sucks Facebook Page. Just click here to Like and Comment on the Book Giveaway post for a chance to WIN a copy of “PANDAS and PANS in School Settings: A Handbook for Educators”. One winner will be drawn at random at 9am on 10/10/17. Good Luck! It’s a great book to have a resource for your PANDAS/PANS child’s education. And check out the PANDAS Sucks School Daze series for more help with schooling. Happy PANDAS/PANS Awareness Day! Happy Healing too!
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 write a guest blog? 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.