Welcome to the 22nd installment of the Your Words series: PANDAS Sucks Because…. Will we ever run out of reasons to list? Ummm…my guess is NOPE!
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.
Thank you to everyone that participated in this series! Want to send in YOUR reasons that PANDAS Sucks for next time?…just click here. Now, here are this time’s reasons YOU said PANDAS Sucks Because….:
PANDAS Sucks Because…My son didn’t ask for this, neither did we as his parents and we feel so alone on our journey. It breaks my heart to see him struggle in school and trying to have friends!! ~M.G.
PANDAS Sucks Because…It is a constant confusion as a parent. Go to school, get accommodations, and our school is great, then try to get your teenager who is beyond smart to do just the minimum to pass. He seems not to be able to start assignments, then get frustrated. Try to help. He wants us to stop micromanaging him, we do and then he has several zeros in every class and cannot manage it at all himself. Arguing ensues, then we take away phone or TV but still no change so then it feels like he is lazy or doesn’t care. Then he tells us we have no idea how much energy he is using just to make it thru the day. Then we are heartbroken and wonder do you just let them fail, take a year off, or keep pushing them in hopes they will move up to the next grade and hopefully their brains will be better next year and this all won’t be such a struggle. And then… start again tomorrow thru the roller coaster of emotions. What part is Pandas, what part is hormonal teenage gifted boy who sees no use for homework in subjects he isn’t interested in, and what part is maybe a lazy, unmotivated teen – and you sit there in your thoughts of confusion on how to parent this kid. NO one can help, because there are no answers… it really sucks! ~Christine Swick
PANDAS Sucks Because…The whole journey has been so crazy that if I hadn’t lived it, I wouldn’t believe it. ~Perl
PANDAS Sucks Because…It’s not a simple fix. It’s constant monitoring and tweaking things. It’s walking on eggshells. ~Anon
PANDAS Sucks Because…Lives are completely destroyed overnight. Parents have to put together the pieces of this horrific puzzle for there extremely sick kids. Sleepless nights go on for months, no help from our pediatrician, traveling across the country to desperately get help, paying cash for any real help, no support from friends (no one can possibly get this unless they, too, are going through it. ~Kristi Blee
PANDAS Sucks Because…It is hard to diagnose and hard to find the right treatment. It makes my child a different kid and although I know it is real. I have to fight to find treatment and research like a doctor, which I am not qualified for. ~PANDAS Parent
PANDAS Sucks Because…It robs your child and entire family of a “normal” existence. OCD, anxiety, rage, learning challenges and so many other obstacles create a blockade to family unity. So challenging and sad to just want someone to feel your love and truly feel life ~Meg
PANDAS Sucks Because…Most things are a guess and a hope it will work. Particularly supplements, so much money and most have caused side effects. Took so long and so much research to find an expert to truly start to heal our son, and that was thousands of $, many miles – looking back we should have started there. Financial strain, family strain, big strain on siblings, etc…. ~Anonymous
PANDAS Sucks Because…It is life altering. ~RR
PANDAS Sucks Because…It’s like watching a train wreck you can do nothing to stop. ~Rhiannon
PANDAS Sucks Because…It robs your children of their childhood!!! ~PANDAS Parent
PANDAS Sucks Because…Being told by someone you trust with your child’s life, that they don’t believe in PANS, is the biggest punch In the gut possible. ~Anonymous
PANDAS Sucks Because…I’ve lost my children to PANDAS and they’ve lost their childhood. ~TB
PANDAS Sucks Because…It often feels as if the child I know has disappeared, and we don’t have any concrete way to get him back. It is like searching for a glimmer of light in a long, dark tunnel. Frustrating. Never ending. Exhausting. ~ES
PANDAS Sucks Because…You are never sure when things will go awry, so you are always planning for disasters that may or may not happen. ~Sarah
A HUGE THANK YOU to everybody that helped with this blog and all the other blogs. I know it’s not easy to dig deep and share. I appreciate your honesty and vulnerability. I hear you! You are definitely NOT alone in all of this. If you read this blog regularly, you’ll see how many more of us are on the PANDAS/PANS journey with you. PANDAS Sucks for sure, and we talk about it all the time. Sometimes good things happen, and PANDAS Sucks readers share those PANDAS Silver Linings with us. Sometimes PANDAS Sucks readers want to share more and write guest blogs. PANDAS Sucks is open 24/7 for you.
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 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.