You slide into the supermarket, push the cart through as you search for organic vegetables (or not, because you haven’t money left for organic), when an acquaintance stops you and asks how everything is. You smile, skate by the question by saying fine, but they persist and ask, how is your child?
You go to a family BBQ and someone asks, in the midst of company, about your child. How do you respond when your child is not well?
PANSLife surveyed a bunch of parents of kids with PANS AND Lyme and came up with the following answers. How many of these resonate with you? How many of you are able to be truthful? To not shield yourself and your family from the world? And to venture receiving either compassion…or criticism?
Sometimes, families are the worst culprits when it comes to belittling parents’ attempts of solving the problem of PANDAS. Or PANS or Lyme. Sometimes, acquaintances and colleagues would rather not know. Yet occasionally, our sharing can lead to another child being correctly diagnosed and treated before the infections cause irreparable damage.
Here are your words:
“He’s had a rough year fighting…”
“They don’t ask.”
“She’s struggling right now. Keep us in your prayers.”
“He is struggling, better than he was a few years ago, but has no life outside of the house. Thank you for asking since everyone seems to have forgotten about him.”
“We do not talk with distant family. I have posted articles about PANS online for general reference. My teenager is triggered by me oversharing. We talk about it with close friends. Otherwise, we just make small talk.”
“Most don’t ask. When they do, it’s such a vague question and I don’t know how to answer it. I don’t think they are prepared for the reality.”
“I cannot go into details with most unless I know they have a background knowledge to understand. You can’t just say he hit a teacher, then smashed his head into a wall…it’s unfathomable to most. And many people would judge you and your child harshly.”
“When she was spiraling in PANDAS in the past, everyone went silent. No one asked about her or our family. I still don’t think some family members every acknowledged her diagnosis.”
“My mother-in-law is an MD. She told us PANDAS was not real.”
(PANSLIFE note: PANDAS/PANS is recognized by the National Institute of Mental Health, by the American Pediatric Association and has been written about extensively in the Journal of Child and Adolescent Psychopharmacology.)
“It’s a long story.”
“I used to share more, but people don’t understand; how could they? I can’t believe how hard it is, and I live it every day. Too much information can bring unwanted attention from do-gooders who report your family to children’s protective services or advise us what we are doing wrong and how we should get help. As if we haven’t exhausted every resource we can find.”
“We have a reunion coming up and my family didn’t go last year. This year, I don’t want to go either because no one gets it!!! My husband will stay home with my child. I will get questions like where she is, isn’t she don’t better? I try to explain what’s going on but I just get confused looks. My sisters just ask how she is; I just say better and they accept that and walk away. The whole situation is sad. I have no idea what to say to my aunts this year. Sometimes I wish no one asked, then I get upset when no one asked!? Vicious cycle!!!!”
“I say ‘fine’.”
“’I can share some literature with you that explains his medical issues if you are up to reading it, but if not, it’s too complicated.’ Sad thing is no one except one jewel of a family member has even showed interest in reading or understanding anything.”
"I call it Autoimmune Encephalitis now because PANDAS sounds too cutesy. AE gets more respect."
“We have our good days and our bad days.”
“Distant family doesn’t ask, close family doesn’t understand, so they get a general “OK” response. Only few understand and care to really hear the true answer.”
“In the past, my sister was honest in communicating her thoughts about my lack of parenting skills. However, she gets it now and is one of my greatest long distance supporters. She calls just about every day and lets me tell her what is really going on. I am so thankful for her.”
“We are still working on his health and learning about his immune system. He is not where we would like him to be, but we are continuing to move forward.”
“I say up and down. We’re hanging in there.”
“I tell them he’s struggling, but we’ll get through it. I’m really honest about everything.”
“I’m honest but don’t do a lot of details.”
"Not everyone believes in chronic Lyme. Not everyone believes that chronic Lyme or Bartonella can cause this much destruction in a small person. I've gotten pretty good at reading facial expressions of disbelief and I've learned when to stop talking."
“Not well at the moment. He is struggling. We are hanging on with hope but thanks for asking.” Then—move to another topic. I don’t over-share. I’ve learned not to after all this time.”
“I say, ‘up and down, as always.”
“She’s doing ok.”
“We say it ebbs and flows and that we just keep going….”
“I answer honestly, depending on how she is at the time.”
“I say fine. But no one really wants to know, unfortunately. In fact, I think they specifically don’t ask about him for that very reason. If I do open up, I often get advice that just makes me angry. But that’s just me.”
“Depends on how they ask. If it’s just small talk, I say ‘fine’ and redirect the conversation. If they want more, they will press on for it. They usually just follow up with ‘Is she still…’ and that’s the cue to go into more detail.”
“One day at a time. I’ve also just recently decided that if someone tries to give me their ‘advice’, I’m going to whip out my phone and read excerpts from this [closed support] group and then ask, ‘What would you do?’”
“People asked how school went this year. My response was, ‘Well, it’s the first year he didn’t get suspended, so better.’”
“My answer depends on the person. If it’s someone that I know cares, I’ll spill the beans. If it's a family member that cares but gets too involved, I halfway spill. If it’s someone making small talk, I say, ‘He’s hanging in there.’”
“I was having a conversation with a friend the other day and said, ‘It’s been a rough road recently.’ At the end of the call, he said, ‘Post an update on Facebook.’ He doesn’t even realize that I left Facebook. I am not posting updates anymore! If you care and want to know, you can call! I don’t have time to look at all the happy posts.”
“It’s complicated but overall, things are going OK.”
“I have always been very honest and factual. I try to educate as to what we are dealing with at the moment. Awareness goes a long way. If they don’t want to know, they won’t ask or will stop asking.”
“I also answer honestly, depending upon how she is at the time they ask. My family makes suggestions but it doesn’t anger me. It comes from love and wanting to help. And they want to understand. I am blessed.”
“I like to think of it as where he was on the road to recovery in terms of percentage. Like 50% better, then 65% and so on. I think that is meaningful to people, so they can understand where your child is in the healing process, and shows there is progress. I also rated each day 0-4 and recorded that so I could see looking back how severe his symptoms were and look for any pattern. 4 was for severe symptoms, and 0 was none, but of course he never got a rating of 0 while healing. I remember towards the end, he was getting many 1's. If someone was interested enough I shared this rating system with them. I think speaking of "symptoms" helps distinguish what is the illness and what is your child.”
“Terrible. Thanks for asking.”
“Great question.”
“He’s coming along. Hoping to see the day that I can say, ‘He’s great!’”
“She goes up and down and she’s down right now but we’re hoping that changes soon.”
"He's being so brave! This is such a challenge for him. We celebrated _____ this week but he really had a tough time with ___"
“I've stopped being truthful. They don't understand and don't truly want to know. I instead say "she struggles with some health issues, but we'll get there" and then I change the subject to something I know they want to talk about - their own kids, themselves, or anything other than my own family.”
“I usually said "this is a good week" or "this is a rough week" and follow up with a sentence that includes the word PANDAS. I find that people are really interested. Ironically, it's actually our immediate family who seems not to get it or be interested in how/why/what we are doing. So it's nice to teach someone about it who seems interested.”
“Better, but he still has a long way to go.”
“Most people really just want to hear a happy ending. There is little understanding for “chronic” or relapsing.”
PANS/PANDAS takes its toll on the entire family: parents, siblings, extended family member who choose to care. Sometimes when we try to share, all we hear are crickets. Occasionally, a confidante will actually take the time to listen. And rarely, someone will even admire the persistence of parents who refuse to give up on their beloved children. It sure beats criticism, either direct or implied, or a move to distance oneself from the stricken family.
Facebook has its place in the lives of the struggling. Closed, private support groups offer a refuge for parents fighting daily for the lives of their children. It is often here, with strangers, some of whom become best friends either over the internet or in real-life as well, that parents feel the freedom to confide the most horrific side of PANS. It is here that parents can receive the support and unconditional love so desperately needed through this ordeal.
Thursday, January 4, 2018 at 01:52PM 
