Welcome. This is the 16th installment in an ongoing series: “Your Words: PANDAS Sucks Because….” In these posts we vent and bitch and tell the world why PANDAS Sucks sooooo much. There are so many reasons that we will never run out of them.
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.
Missed submitting your reasons PANDAS Sucks? That’s okay. PANDAS Sucks web site accepts submissions 24/7…just click here to be included next time. Or if you want to tell a more detailed version of your story, message me here, and I can help write a guest blog.
Thanks to everybody for participating and for reading. Know that you are NOT alone in all of this. Somebody somewhere is going through the same PANDAS struggles in their family.
PANDAS SUCKS Because…on this July 4th holiday, as well as others, we are stuck at home due to PANDAS. Tried to make a special meal/have special activities throughout the day and it made things worse. So now, stuck at home looking at all of my family and friend’s happy celebration pics on Facebook and praying someday we will be able to join. RW
PANDAS SUCKS Because…my DS 15yo “at the time” with Down syndrome was admitted to the psych unit 3x before a diagnosis. Karen
PANDAS SUCKS Because…it turned my perfectly normal child into an OCD, anxious, and ticcing like crazy child. It breaks my heart. BC
PANDAS SUCKS Because…it steals not only your child, but it severely impacts the lives of each member of the child’s family. As the symptoms wax and wane, the moments of your life are impacted by the highs and lows. The family is alway teetering on the edge waiting for things to take a turn for the worse. While you rejoice in the good moments, you are always on the edge. You have to fight to get appropriate medical, educational, and other services for your child. Your child and your parenting are always being judged. Your child’s behaviors are misunderstood and falsely judged. Your child is always mistaken for a spoiled brat when really he is struggling and fighting as his own body attacks his brain causing his inappropriate behavior. PANDAS Mom
PANDAS SUCKS Because…PANDAS affects everyone in a family. We will never know for sure what triggers the behaviors we deal with from day to day, we wonder did he eat something he’s allergic to, did he come in contact with someone sick, how long will it last, can we fight it, will he hurt us, get calls from school, break something, will the family fight again because of the frustration? Its the unknowns of each Pandas flair that hurts the most. Does my child really hate us, or will that feeling pass? Will he ever be able to be a positive member of society? Will he know how to recognize a flair and be able to get the help he needs as an adult? Will my son be the next big headline because his illness made him do something irrational or dangerous? I dream of a day that I never have to worry about these questions again. Carol
PANDAS SUCKS Because…during flares, my 5 year old son hits me, spits at me, bites me, tells me he hates me and wishes I was dead. AT
PANDAS Sucks At School Because…Pandas Sucks…I mean it really does. Why? Because it comes very unexpectedly like being very disrespectful and taking over my daughters life and changing our lives around because of it. I mean the behaviors are so stressful, & we as parents know our kids have no control in what they are doing & they don’t mean any harm. It just changes their speech. It’s a hot mess. It makes me cry all the time too see her go thru this, & I can’t help to make it go away & never come back. You begin to question your self & say why us?…just why? It’s too much for one person & let alone a family. It’s so controlling without asking to be, and you just can’t stand it. You look one minute amd your child is on the bed flopping uncontrollably. What can you do to stop it? You lay next too them to hold them, and they’re still moving sometimes. It makes them very aggressive. Like where this all of a sudden comes from? I just can’t take it sometimes. Then trying to explain it to other people is hard because most of the time they don’t get it. You also have not so many doctors that treat it or dont even know what it is. Some don’t believe in it, and they wanna look at you like they can’t even put a name on it. The treatment some of the meds cost so much that if you have medical insurance they don’t always pay for those treatments. Then finding a doctor in your area that knows how to help you is hard. This stuff is a total stress out to deal with and it takes some time for your kid’s life to get back too normal. SMH. YES, PANDAS DOES SUCK! Kizelly
PANDAS Sucks Because…it alienates you, it’s an invisible disorder, doctors have no idea how to treat it, it’s expensive, it destroys families, and it causes beautiful children to be robbed of their childhoods. KH
PANDAS Sucks Because…the only vacations we EVER get are all around medical trips…our son makes everything a nightmare. It’s really, really tough to be the parent that I always envisioned myself to be. Instead I’m mean mom…mom that is always correcting always, encouraging my son to make a good choice (90% of the time he doesn’t or can’t) and our 2 younger daughters are horribly impacted by him. On our current trip out east to see Dr. T and a couple other doctors, our son has gone from one meltdown to the next making it difficult to enjoy any of the trip. My daughters are afraid that he will have a huge meltdown in public and that mom and dad will go to jail because of their brother, and they will have to go live with my sister. My daughter actually said that yesterday in the midst of one of our son’s rages. (The girls are young, and they are afraid that their brother will try to hurt them or us and something horrible will happen.) Hard stuff to try to manage through with these precious little girls. And finally realizing that PANDAS has horribly impacted EVERYONE in your family. Anonymous
PANDAS Sucks Because…I don’t have a job anymore. CS
(NOTE: Many parents don’t work because they need to take care of their PANDAS/PANS child(ren). I am one of those non-working parents. I had planned to go back to work when Jesse started school in 2009…then PANDAS hit in early 2010. It’s 2016, and I am still not working…but I am currently taking steps to start my own business. I do a ton of volunteer work, which is fulfilling but does not pay the bills. 😉 ~Sarah)
PANDAS Sucks Because…I have gone from dr to dr for 3 years and still my son is suffering. KH
PANDAS Sucks Because…my son who is 14 now and has been going through this for 1 yr and 4 months, yelled at me and I lost what I had written here. There are holes in my wall, fits of rage at all hours of the morning. Julie F
PANDAS Sucks Because…I am bitchier as a Mom than I wanna be. I know that as a Mom that there are just times that you need to be a little bitchy. But even when I make deals with myself not to be bitchy, I am still bitchy. Ugh. I’m always wondering if my son is really having a good time when we’re doing fun stuff or if I’m being too protective or griping too much or if my expectations for him and his behavior are too high. I apologize and acknowledge when I’m wrong, and I hope he really does forgive me when he says he does and that he’s not just saying it. Sarah
Thanks again to everyone that shared their thoughts and feelings for this edition of “PANDAS Sucks Because….” Remember, you can always submit reasons on the PANDAS Sucks web site or message me 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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