So what exactly is a PANDAS flare?

Flare means “to burn with sudden intensity.” Well, that’s one way to describe it. So what exactly does a PANDAS/PANS flare look like? All kids are a little bit different but this is a brief glimpse of what a day in a flare can look like for our little guy.

First of all, our son is pretty much always in a flare. If we have a good day, once in a blue moon, we are just grateful. But we’re always on guard. Because good days don’t last. Something will inevitably make him flare and almost anything can set him off: being near someone who is sick or getting sick, swimming in a chlorinated pool, chemicals, certain foods and smells, seasonal allergies, a herxheimer reaction to medication, the full moon, new moon, supermoon, no moon, man in the moon (just kidding about the last one, but anyone with Lyme Disease, and PANDAS/PANS will tell you the cycles of the moon definitely have an effect on them.) When we wake up in the morning we never know what kind of day it is going to be. More often than not, it’s a crap day. Even if our panda wakes up in pretty good spirits that can change in a moment and you feel like you’ve been hit with a sledge hammer. His eyes are wild – pupils dilated. He’s screaming because his Dad walked out of his bedroom before him or opened the blind the wrong way. Now the OCD starts and he’s yelling that we’ve ruined everything, and he has to start all over again. Or he wants us to repeat what we just said and dammit, I can’t even remember what I just said. This is too much. I haven’t even had my blast of caffeine yet or even made it to the bathroom to pee. Trying to calm him down takes ages. There are some things he needs that will help him feel better but trying to do any of them can set him off again. He needs to pee. He needs an Ibuprofen (to reduce the inflammation in his brain,) he needs to eat and drink. But just getting him downstairs is a struggle. We’ve even tried giving him food right away before he even leaves his room. But the thing you need to understand about a PANDAS flare is that it doesn’t really matter what you do – nothing really makes much difference. We’re tiptoeing on egg shells trying not to do the wrong thing. Throw into the mix a 2 year old sister and a husband desperately trying to help, but also get ready for work, and it’s a recipe for disaster.

Whew, we made it downstairs. It took some coaxing, a lot of coaxing. Trying to get the Ibuprofen into him before he freaks out again. Hubby puts out Panda’s breakfast: homemade granola and coconut yogurt and makes sure it covers the bottom of the bowl just right, drizzles honey on top, and starts getting all of our son’s supplements and medications ready. Some he needs on an empty stomach and some after he’s eaten. But now Panda is sobbing because he can’t find the right spoon. He needs 4 spoons. One of the spoons snapped in half and we have to fix it NOW! The yogurt isn’t in the right place. He needs it on the bottom but it’s on the top. Yogurt tastes yucky today. Oh no! He just got yogurt on his finger and now he has to go wash his hands again. Everything is ruined. He has to start over. And by over, he has to go back upstairs and start everything over again. But he’s stuck and he needs us to help him. The clock is ticking and we’re all feeling the pressure and frustration. He is completely emotional and falls apart if we leave the room. Once we have him calmed down again we help him to the table to start eating and he’s furious because we gave him a banana just like he asked for only he’s changed his mind or forgotten that he wanted it and now he’s so angry. He’s running around screaming, banging the chair on the floor and against the table, throwing all the papers that inevitably collect on our counter all over the floor, trying to sweep his bowl off the table but phew, we caught it – this time – before it was a broken mess on the floor. He’s in distress, I can tell. My poor little boy. He’s holding his hands over his ears and yelling now.

I swoop up my baby boy (only he’s not really a baby anymore) and he’s fighting against me, kicking and flailing around. And usually this doesn’t help. Nothing helps. But we have to do something, this could go on for hours. He hates being constrained but we can’t let him destroy anything else. I start to rock him gently. And, very softly, I start singing “You are my sunshine” (his favourite song at the moment.) He’s telling me to stop singing and usually I would, but this time I don’t. I keep singing very quietly. It’s hard for me now because tears are streaming down my face. I feel his body start to relax and the fight goes out of him. At the same time I feel my own anger and frustration melt away too and all I feel is love (and sadness.) He’s not doing this on purpose. This is not his fault. His brain is under attack. When he’s flaring, sometimes he doesn’t even remember how he was. It’s getting late now. I help him eat breakfast while he counts on his fingers. Daddy gives him his meds. We help get him dressed and teeth brushed. There are more struggles throughout. We’re going to be late for the bus again. His shoes are bothering him. He takes them off, I try to help. I’ve made it worse. He puts them on again, then off again. Trying to get them just right. My nerves are shot to hell. We get outside and run to the bus. We made it in time (sometimes we don’t.) We have time for hugs and a million butterfly kisses: left cheek, right cheek, left cheek. Eskimo kisses on my nose. “I love you mummy” he says. “Have a good day!” “You too my love,” I say. He’s okay now. The ibuprofen has kicked in. His tummy is full. He will have a good day at school and he will hold it together all day while he’s there. But he’ll let it out later when he gets home. Home is his safe place where he doesn’t have to hold everything in. I know what to expect.

I breathe out. I smile and chat with our friends and neighbours. Nobody knows what our morning was like. I hold my daughter’s hand and we walk home. It’s 9am and I’m exhausted, emotionally wiped out. Is it time for bed yet? I finally make my cup of tea. Eat some breakfast. Have a shower. We have a few hours of reprive (on days when there is no school, there is no reprive.)

Later, when it’s time to pick him up from the bus, I will brace myself for what’s to come. He’ll get off the bus and run home happily with his friend. His pants will likely be wet. When he’s flaring he holds his pee in for so long he ends up having an accident. And he doesn’t like to pee at school. Sometimes he’s already starting to fall apart when he gets off the bus, but usually he’ll keep it together until we walk in the house and he explodes. All families are familiar with the dreaded “witching hour” – that lovely time of day around dinner time when children fall apart and chaos ensues. For PANDAS/PANS families it’s elevated to a whole other level. Especially with those children who hold it together while they are at school. How difficult it must be for them and no wonder they erupt like volcanoes the minute they get home. It feels like we won’t make it through the evening. The stress level in the house is off the charts. We try to keep things as calm and relaxed as possible and to carve out moments of time in the day that are positive. But it’s tough! Really tough. After 4 years of this life, day in and day out it’s hard to remain positive or patient all the time.

The evening is pretty much the same as this morning. I get dinner ready, break up fights, clean up accidents. Try to get Panda to the table but it’s hard to get him to eat dinner. He won’t sit still. We have to sneak bites of food into his mouth otherwise he won’t eat. He has been pretty good taking yucky medicine until recently and now he refuses it. It’s a battle to get him to take it. And there’s so much to remember: take this on an empty stomach, that with food, this 2 hours after food, repeat and then pull out your hair because you forgot to give him something that has to be taken 2 hours before a meal. We have lists and pill pots to organize everything and I still feel like a chicken with my head cut off. I always breathe a sigh of relief once dinner is done and all his medication is taken. It’s a lengthy ordeal.

So after the bedtime battle and a melatonin (thank God for Melatonin, without it he used to be up late pacing the floors, coming in an out of his bedroom, unable to settle,) we read books together and he gets very sleepy and mellow. We have found that a side effect of melatonin is he can wake up with bad dreams and early morning wakings. Now he only has a tiny bit of melatonin, enough to help him get to sleep but without the bad dreams, and we have days off from taking it. It’s so lovely when all is quiet and the kids are sleeping peacefully. And I wish I was sleeping peacefully too, but there’s more work to be done.

I finish the dishes that I had to abandon to help Panda through a crisis, and laundry that was started hours ago, and inevitably some sort of cooking – like I suddenly need a safe treat to send with him to school and we just ran out of my stash in the freezer – and now more dishes, but I don’t care anymore, I’ll do them tomorrow. I collapse on the couch and watch Corrie St. or catch up with our support groups, do some more research on this terrible disease. It’s very late now. I check on the kids and kiss them goodnight. I lie awake in bed. As usual, I can’t sleep. I’m so tired and the night is so short. Tomorrow we’ll wake up and face it all again.

It feels like our life is a never-ending roller coaster ride: sometimes we’re up; mostly we’re down; it’s scary – maybe even exhilarating sometimes, you don’t always know what’s coming and there’s nothing you can do about it; you can’t get off so you just hang on for the ride. I think I’d prefer a lazy ride in a gondola down the Grand Canal but since I don’t actually have a choice, roller-coaster it is.

Much love to all the parents looking after sick children. You can do it! You will survive another day.

xo

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16 thoughts on “So what exactly is a PANDAS flare?

  1. THANK YOU….thank you for sharing–it truly is UNBELIEVABLE that this is a “day in the life” of a PANDAS child. Until you have walked it –it cannot be believed. August 22, 2011 was the day that changed our lives forever. Our beautiful, happy, content daughter was taken over by this disease. Like you– we have not experienced a remission that lasted longer then 10 days (even with high dose steroids, IVIG and plasmaphersis). What is most disturbing to me is how others feel like because they have caught a glimpse of our daily life —they somehow are entitled to give their opinion on how my daughter is “getting over on us–how if we just DISCIPLINED her the way we were disciplined as children –her behavior would stop–needless to say these people are no longer invited into my madness–and my thought process is REALLY–instead of just being my friend–my sound board, my lifeline—you have become my JUDGE.

    When our daughter was first diagnoised our Pediatrician asked us to come in on a Sunday to talk. He brought his own daughter in to play with ours. The BEST advice we ever received was this……TAKE CARE OF YOUR MARRIAGE—at the end of the day and in the years to come others will grow tired of your daughters chronic illness. They will not understand her behavior, how you need to cancel plans all the time–how they will feel targeted by you because you will not come to a event because their child has strep–a cold–or stomach bug.
    He told my husband that because I am a nurse AND a mommy he is SCREWED because I will not rest until I have researched EVERYTHING possible and I will never stop until we have tried everything.
    He shared with us that he has watched countless marriages end in divorce because of PANDAS and other long term illness. 4 years ago I had a ARMY of helpers–a village. Today we have our family of 4-me, him our 9 y.o son and our 11 y.o PANDAS daughter. Our doctor was right and I thank god that I took his advice and made sure that the people that actually LIVE in our house are my priority.
    From your story it sounds like your marriage is strong–it is normal–and you still have one another. For those reading this who are doing it alone or who have seperated or divorced because of this horrible illness–I am so sorry–and I hope you have one BESTIE who loves you unconditionally!
    So thank you for sharing—it makes me feel less alone.

    1. Deirdre, I’m glad you found comfort and understanding from my post. It was a tough one for me to write and even tougher to hit the “publish” button, but I knew I had to share it. Somehow we need to find a way to quiet the voices of those critics passing judgment. You are right, no one completely understands what it is like to raise a child with PANDAS/PANS unless they are doing it. We have no energy or room in our lives for critical people. It won’t help us heal our children. I am so grateful to have a strong marriage – we will not let this break us. Thank you for taking the time to comment and please keep reading.

    1. Thanks for reading, Julie. You are definitely not alone. It’s so sad that so many families are struggling this way. Sometimes I find it hard to share the most painful stories of our life, but more and more awareness about PANDAS/PANS and Lyme Disease is good. And as a parent living this, I know how comforting it is to know you’re not alone.

  2. Thank you for sharing. No one understands the battle associated with this illness, but it helps to know we are not alone

    1. Thank you Kirsten! You are not alone and I’m going to keep on sharing, so stay tuned.

  3. I am currently trying to get the doctors to treat my daughter for PANDAS. It was literally an overnight change and she hasn’t been the same since. We’ve been to the pediatrician office 3 times this week, the er and to see a psychologist. Oddly enough it was the psychologist who told me to take her back to the Peds office to be tested for strep. We did and test was negative… She hasn’t had strep in a while but she’s had it 3 times and she’s 4 years old. One time she developed Scarlett fever (rash) and another time the antibiotics didn’t work and it came right back… So this is what makes sense to me. The doctors aren’t educated about pandas and they just keep telling me to have her see a psychiatrist. How do they test for pandas with a negative throat swab? How can I get the doctors to listen and do something for my child? It’s been almost 10 days since the change in her and it’s killing me… We need help.

    1. Brianna, I’m so sorry that you are all going through this. You need to ask for an ASO titer test, and Anti-DNase B titers – these are blood tests, just doing the swab isn’t enough. Strep can hide in other places in the body. Also, PANDAS is a clinical diagnosis based on symptoms, not necessarily from test results. But if you don’t have a doctor who knows about PANDAS it’s very difficult to get treatment. It would be great if they could do a trial of antibiotics to see if her symptoms go away. Where are you located? And, if you are on Facebook, there are some really good PANDAS support groups you can request to join, then you can connect with so many other parents going through the same thing. Also, if you would rather email me at thepandaspuzzle@gmail.com please feel free. Pandasnetwork.org also has a lot of good information. I hope you can get help soon. Please keep in touch.

  4. After coming across this post I’ve been reading it daily. It’s become almost a prayer to me to remind me that I’m not alone. Someone else understands. Most recently my panda developed a tick. A strong movement in his neck over and over and over again. I used to read posts about children suffering from ticks and felt fortunate that my panda didn’t, and now he does. People keep asking what’s wrong with him, his siblings especially. He’s so special and smart and loving when he’s not In a rage. We too suffer from daily flares, no rest except for his time at school. He saves his nightmare for his safe place, home. I just want him better, I just want him happy. Thank you so much again for your post…it helps, a lot!

    1. Oh wow! Thank you for reaching out Candice. I’m glad my post helps you and reminds you that you’re not alone. It was a difficult one to write but I thought it was important so other people could read it and say “Yes! This is our life.” This journey is a roller coaster and it can be very lonely, but knowing that we’re not alone in this struggle, that there are other families who completely understand what we’re going through, is key to our survival. I hope and pray that we are able to find the missing pieces to heal our boys xo

  5. OMG…This.Is.My.Life! I am sitting here in tears, because I live this on a daily basis. Such a frustrating illnesses that becomes our new “norm”. I grieve everyday for our “old” life and that my son will just come back. When we try a new antibiotic…I may get my son back for a couple days and that’s it. I will never give up and I will not let this cruel illness destroy our family!

    1. Hi Jen, thank you for taking the time to write and I’m sorry you and your family are going through this. You are so strong and have so much hope. Hold onto that. I often worry about this destroying our family too. Take time to grieve. And be gentle with yourself.

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