Our life is a kaleidoscope. Quite shaken up with bits and pieces all over the place, but if you look through the right lens and at the right angle you can find beauty, comedy, and love.
My dad used to say, “I can see the light at the end of the tunnel and I’m relatively sure it’s not the lamp of an oncoming train.” Well, over the past two years we thought we saw the light a few times, but we kept getting run over by the PANDAS train.
Until now.
We’re pretty sure the light is remission and, for the first time, we’re not tied to the tracks like Nell Fenwick waiting for Dudley Do-Right to show up and save us.
For two years, J has experienced 19 out of the 20 symptoms described on the PANDAS Network site and he’s suffered every symptom listed on the NIH (National Institute of Health) Information About PANDAS page. He cycled through every level, mild to moderate to severe and back again, but never got back to “baseline” (behaving like our J did before he got sick the first time).
There are milestones and then there are MILESTONES! I’m not talking developmental markers, I’m talking about the moments when the formerly dim possibility of remission is suddenly shining so brightly on your child, you can actually see a future for your kid.
After 16 months of never knowing what the day would bring for our J, we’re starting to see the light at the end of the tunnel. And as my dad used to say, we’re reasonably sure it’s not the lamp of an oncoming train.
It’s time to celebrate, people! You might have smiled when you saw the post about J venturing out and going to the pool. You might have danced with us when J started playing soccer in the county rec league a few weeks ago. Well get ready to feel the joy, people!
J spent the night over at a friend’s house after a birthday party Friday night! He slept at someone else’s house and he didn’t even have to call to say goodnight! He did not care where we were. He was having fun!!!
But wait! There’s more! J asked to go to back to school night with me tonight! BACK TO SCHOOL NIGHT, YOU GUYS!
HE WILLINGLY WALKED IN TO A SCHOOL FULL OF KIDS AND ADULTS! He said, “Hi!” to his teachers.He hung out with some friends. He walked around and checked out what had changed since he stopped attending school last year. He was calm. He was cool. He was happy. HE WAS FREAKIN’ AWESOME!
Transitioning him from home bound back into classroom learning is looking like it could actually happen this year. Wish us luck!
We’ve all heard it. Most of us have probably said it. Or at least some variation of it. “When one door closes, another one opens.” Coincidence or cosmic plan, it’s been the truth for us over the past year.
In 2015, the company I’d worked for for almost 20 years told me that my position was being eliminated. As I mourned the loss of stability and security (paycheck and medical insurance for my family), and tried to work through a sense of betrayal and abandonment, my husband pointed out the perfect timing of the whole thing. I was still hopping mad at the firm, but I couldn’t deny the gift we’d been given. Just when our J was getting really sick and needed full time care, I was going to stop working outside the house. I would have kept trying to hold on to the job and take care of J, neither one very successfully, until the wheels came off. Someone had to force me to stop working. Another gift, almost 20 years of dedication resulted in a severance package that has carried us through the end of 2015 and half way through 2016. No job = dedicated care for J and (bonus!) more time with our older child, too!
You guys have seen me scream and curse about the fact that it was taking much too long to get IVIG treatment for J. We couldn’t even get to a diagnosis. That door seemed to constantly slam on us. Well, maybe IVIG wasn’t the right answer. Or at least not for now. In the past month, we’ve seen stunning progress without IVIG. J’s new mix of meds and supplements is working. We’ve been celebrating his new ability to attend parties, play soccer, eat a wider variety of food, and play with new friends. This is all AMAZING!
These improvements led us to another door. J has been unable to attend school regularly since September 2015. Separation anxiety and school refusal were among his first PANDAS symptoms. It got to the point that he literally could not walk through the doors into school. Starting in October 2015 and throughout the rest of the school year, he worked with a homebound tutor provided by the school district. Since starting the new antibiotics, he’s been able to work on exposure therapy (also called laddering) and get closer and closer to walking in to school. We started by driving by school. Then sitting in the parking lot. He got as far as touching the front door and that was where he stayed for a bit. Until today.
J walked through the front door of his elementary school today!
He hung out in the lobby for five minutes and agreed to try it again tomorrow. Baby steps. Next he’ll be walking through the glass doors into the main hall. Then maybe through the library doors, or the gym doors, or just around the school a bit. Eventually he’ll be able to walk through the door into his classroom and meet his teacher. But for now, we’ll take the front door.
For anyone who has been following our stories, please take a minute to celebrate with us. For anyone new to the saga, trust me, you should let out a genuine whoop-whoop of joy, too.
This is J’s first soccer practice. He’s the dude in bright orange. In the first shot, he’s standing with a group of kids (this would not have happened 6 months ago) and he’s VOLUNTEERING to play goalie. That’s why his hand is straight up in the sky. In the second shot, he’s actually playing goalie during scrimmage. He stayed on the field for the entire practice. No fear, no stress, no anxiety. Nothing but fun. In the pouring rain. For an hour.
In case you’re wondering, the pictures are blurry on purpose. I’m not that bad of a photographer. 🙂
437 days ago J withdrew from the world around him. He stopped everything. He stopped playing with his friends, participating in sports, eating regularly, sleeping peacefully, feeling safe, leaving the house, trying new things, going to school, basically everything that makes a kid a kid. He was 9 years old.
Some of you know this story already, so stick with me for a minute. Indulge this next paragraph for the new folks.
In the days since, we have been to numerous doctors, run many tests, and researched tirelessly, all to come to the conclusion (FINALLY!) that he has Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS). His Psychologist and Immunologist agree on this diagnosis. It’s terrifying. For details, see any of these previous posts, Uncharted Waters, Zebras, and Rhinos, and Tapirs! Oh, my!, or It just isn’t funny.
Because now I want to tell you the good news. GOOD NEWS, YOU GUYS! I actually have THREE GOOD NEWSES!
J had a birthday party!
We went on a family vacation!
J wants to play soccer this season!
These are three things that would not have happened a few months ago.
J’s birthday was 6 months ago, but he’d been too sick to have a party so he didn’t get to celebrate his first year in the double digits. But now he’s doing so well, he was able to have a pool party and run around and act like every other crazy 10 year old. A PARTY, people! With kids and noise and everything that makes a party great! It was AWESOME!
Then we spent a week at the lake just hanging out, boating, fishing, and swimming. My in-laws gave us this gift, rented a great house on the lake so we could be together in a low-stress situation, relax and have fun. The boys even taught me how to play chess.
And the biggest news of all? J wants to play soccer this season. SOCCER, you guys! Okay, I’ll give you a minute to dance around and send him virtual high-fives. When I told his therapist this morning, she jumped up and down and squealed with me.
How did we get here? First, this kid is just amazing and his spirit will not be conquered. Second, he’s been working really hard with is therapist and she totally ROCKS! Third, he’s been diligent about taking all his supplements and meds. Fourth, the prophylactic antibiotics have prevented new infections and allowed his body some time to rest. And finally, the time was right for Coach Franco to provide a little encouragement. He coached J’s team in 2014 and the kid’s heart just did a big ol’ bicycle kick for the game. He fell in love.He was devastated that he didn’t feel well enough to play last season.
Coach Franco and his beautiful family also happen to be our friends and they were at J’s birthday party. (See how this all starts to tie together?) So when J was wishing on his birthday cookie (he’s not a cake kind of kid, it’s chocolate chip cookies all the way), Franco made a wish, too. Later, Franco quietly shared his wish with J. He wished for J to play soccer with him this season. That’s all. Doesn’t seem like much, right? But it’s EVERYTHING. Because J said yes.
It never occurred to me that I might learn something from Charlie Sheen. Well, I guess I really learned it from Jon Cryer (gotta love a Duckie). No, that’s not true either. It had to be Chuck Lorre because he and his writing team put the words in their characters’ mouths for the Big Flappy Bastards episode of Two and a Half Men. Trust me, I don’t take too many of life’s lessons from that show, but it had its moments.
In Big Flappy Bastards, Charlie gets mad at Jake for some dumb kid thing Jake did. Newsflash, kids do tons of dumb things. They’re still learning. We learn best from experience. **it happens. But, I digress. In his anger, Uncle Charlie stops interacting with young Jake. Alan, Jake’s dad, tells Uncle Charlie that he can withhold privileges, but he cannot withhold his love. Important message, that.
That scene has been running through my mind a lot lately when I’m trying to figure out how to respond to my J’s behavior. He’s had two months with no infection flares. That’s HUGE! Happy dances have happened. But he’s 10. So, newly emerging preteen hormones + anxiety + impulse control problems = mom trying to keep her cool while her kid loses his. It takes a herculean effort to stop myself from shutting down when he’s cranking up. Sometimes, it’s the only way I can make sure I don’t lose my control and react in a way that will just add fuel to the fire. It’s also how I protect myself when his words and actions really hurt. But that’s not what he needs. He needs my love. Understanding. Acceptance. He doesn’t want to be violent or hurtful. It happens when a normal 10 year old negative response goes rogue.
Say, for instance, it’s time to leave the pool and head home for dinner. During the previous few days, he responded well to the 15 minute warning and got out of the pool and headed to the car right when asked. Now, most 10 year olds will have a day when they just don’t want to get out of the pool for some reason. It’s hot out and the pool is cool. He just figured out how to dive. He got up the courage to make some new friends (OMG THAT ONE WAS INSANELY AMAZING, YOU GUYS!) He was in the middle of a game of penguins… don’t ask. I have no idea. Whatever the reason, he did NOT want to leave. Most 10 year olds will put up a bit of a fight, beg for “just five more minutes” or “let me just finish this game” and they’ll fuss and mutter, but they get out of the pool and head to the car. Especially when informed that failure to comply would result in a pool ban for the following day. My 10 year old started down this typical path until the rage got the better of him.
It started with his sandals. They didn’t feel right. They wouldn’t go on his wet feet. They were the harbingers of all evil (that’s their new name now). Then he realized he had water in his ears. If any of you know kids with sensory sensitivities, you know that these two things would be too much for the kid to possibly tolerate. So, the sandals were thrown down and abandoned with a terse, “you carry ’em” thrown over his shoulder. When I declined to carry one more thing out to the car, his brain exploded. He slammed the gate to the pool deck so hard that he broke off the lock. He stormed down the sidewalk dropping words that would make the child of a sailor and her long-haul trucker husband blush. (I am not casting aspersions on sailors, long-haul truckers, or their children. I have an encyclopedic grasp of and enjoy extensively using cuss words. I’m just trying to pretend that he didn’t pick up any of his cuss word vocabulary from me.) He then paced back and forth on the sidewalk in an anxiety frenzy while I borrowed a screw driver from the lifeguard and fixed the gate. There was another half an hour of fit throwing in the parking lot that involved four letter words in all their iterations, literal stone throwing, and sandal throwing (he picked them up, not to carry them to the car, but to throw them at me). Finally, he broke down in tears, retrieved one sandal and made it to the car with one of them. The other half of the harbingers of all evil, having been thrown at me and bounced off my back, was hiding under the car. Once he was in the car, I compromised and grabbed the other sandal so we could get home.
This is where the lesson from Two and a Half Men comes in. I bet you thought we’d never circle back to those flappy bastards, eh? I was driving home in a swirl of fury. I had nowhere to put it. I was shutting down so I could clamp down on the pain. As I was trying to unclench and calm down, my sweet boy reached out his hand from the back seat and asked to hold mine. I could have nursed my snit or just shut down, either way ignoring him and withholding my love. But I made the choice to let go of my hurt and anger so I could accept his apology and hold his hand as we drove home. He was his sweet and funny self for the rest of the night.
Now, consequences. Even though the extreme behavior was driven by PANDAS related anxiety, impulse control, and sensory issues, there are still consequences for not complying with the original request to exit the pool and head to the car. When J was given the choice to follow directions or lose pool privileges for the following day, his tantrum resulted in loss of pool privileges. At the height of his fit throwing, he said, “I don’t care! I never want to come to the pool again! Ever! The pool SUCKS!” We all know that was just a big ol’ bunch of sour, chlorine coated grapes.
Today, he’s calm and compliant, so he thinks he should be able to go to the pool. It’s so hard to look at his sweet face and say, “No.” Especially when it’s 90 degrees out! Part of my job is to help him learn to control the uncontrollable. For now, the anxiety and impulsivity are out of his hands, but the initial response to “It’s time to get out of the pool” is totally in his control. Keep your fingers crossed for both of us that tomorrow’s pool day goes … swimmingly. I had to. I’m sorry. No I’m not. :p
Oh, for the love of little green apples!
Our sweet, bright, beautiful J has been battling a baffling disorder for a year now and we found out yesterday that more lab errors have set us back to where we were in February 2016. We’ve lost 3 months, soon to be 5 due to the length of time before the Cunningham Panel ™ can be run again.
Quick recap. Since the onset, J has displayed all 5 of the criteria outlined by the NIH for diagnosing PANDAS. ALL FIVE OF THEM! First, our pediatricians blamed the symptoms on bad parenting, bad kid, and bad luck. After unrelenting research, we realized J’s symptoms met the criteria for PANDAS. Then the doctors in the pediatric practice we’ve been going to for 13 years were either not aware of or open to discussing the disorder. We started working with a local Psychologist in July 2015 and an Immunologist in November 2015, both of whom understood what it meant if J has PANDAS. Everything we read said J needed the Cunningham Panel ™ of tests. There is no one test that can diagnose PANDAS, but the Cunningham Panel ™ is kind of the holy grail of tests that can point to neuropsychiatric disorders triggered by an autoimmune response.
After 3 months of working with the Immunologist, 7 months after initial onset of symptoms, the Cunningham Panel ™ was ordered. We were elated (Finally moving forward!) and terrified (Holy crap, this is it. We’re actually going to know what’s wrong). Then we were confused, because the results were “equivocal” and the doctor was not ready to move forward with treatment. Equivocal? Really? J has existed in his decreased trigger bubble (no school, no parties, no sports, no travel, no fun) since October 2015. He attended school for 6 weeks of 4th grade. Six weeks folks. During that 6 weeks he got strep again, went to the bathroom at least 15 times a day, screamed and cried in abject terror when he had to walk into the school building, ran away from school when he could no longer manage to enter (being chased by a police officer and me), had to move his bed in to our room because he was so afraid to be alone at night, refused to eat and lost weight, could no longer write legibly, couldn’t see his friends or have dinner with his grandparents, and alternated between curling up on the floor in the evenings and howling that he was going to die and begging to die. He was 9 years old at the time. Let that one sink in for a minute. 9 years old.
If it’s not PANDAS, we’d love for the doctor to figure out what the hell is actually going on.
Then, during a call with the doctor yesterday to discuss the lab error that requires us to have J stuck yet again for another Strep Pneumoniae Serotypes Igg 23 test, I asked if it’s possible the Cunningham Panel ™ results from February were off because J had just finished a round of Prednisone before the blood was drawn for that test. Guess what? The answer is yes. Yep. You got it. He was in full flare because he’d had strep AGAIN and was on Pred and Augmentin. He finished the Pred a mere 6 days before his blood draw.
His Immunologist is working with the one and only lab in the entire country that will run this test to see if there is anything to be done.
In the mean time, we wait.
There is good news. J has had a great run recently. Longest period since May of 2015 with no major flares. He’s not in school and he has anxiety and OCD triggers that stay with him no matter how far out he is from a full flare. But, he’s doing so much better and in two weeks his home bound tutoring will be done for the summer. He’s really excited about going to the pool and hanging out with his buddies. We’ve got our fingers crossed that no new infections crop up to trigger a flare and he has a few months of respite from this fight.
Last year at this time we were in the middle of an awesome baseball season. We were wholeheartedly, unashamedly, and quite loudly enjoying being baseball parents, dragging our chairs and bag of snacks to every practice and game. It was at J’s baseball game on May 21, 2015 that his current journey began. 363 days ago, J was playing 2nd base when he ran off the field in the middle of a play, terrified he was going to vomit, and hid in the bathroom for the rest of the game. We were diving in to Uncharted waters and nothing has been the same since.
When I first started writing today’s post, we were marveling at a 32 day run with no flares. It’s the longest run of good days since May 2015 and it reminded me of the last long run of good days (20 of ’em) in February. I was having the same feeling of waiting for the other shoe to drop. If you’re new here, you might have missed Crazy Shoes, where I shared how difficult it is to be happy when J is doing well because of that other damn shoe. The shoe did drop, 4 days after I wrote that piece. March and early April were a roller coaster of terror. Check out It just isn’t funny for some of the twists, turns, and gut-wrenching free falls of that ride.
Our family therapist is coaching us to focus on the good days, not the dropping shoes. The anxiety of waiting for the clunk of that other shoe can really mess up a good thing. This is partly because it keeps us from really celebrating the good days and it’s also because I broadcast anxiety like a satellite news truck. My anxiety can disrupt the whole family’s regularly scheduled programming.
J made it 32 DAYS! Sure, there were some short-lived tantrums triggered by either sensory overload or changes in plans without enough warning, but that’s nothing.
So, in the spirit of celebrating the victories, whether big or small, again I say, 32 DAYS! That’s HUGE! During this time, J’s handled daily tutoring remarkably well. He’s been productive and engaged and we’ve both stopped dreading getting ready to go the library every morning. He barely reacted to multiple triggers such as strangers being in the same room at the library during tutoring or changes in tutoring schedule to accommodate doctor appointments. He even completed some homework without having a melt down. More fun, but no less exciting, J has been able to attend Cub Scout meetings more regularly. He made the move from standing outside the building and watching through the window to actually being in the room with everyone and HAVING FUN! And the most amazing thing of all?
J attended his friend’s baseball game! This is astounding. J has wanted nothing to do with baseball for the past year. We knew he wouldn’t play ball this spring, but I didn’t think he’d even attend a game. We were shocked when he wanted to see his friend play ball. He was so excited! He watched every play, cheered on his friend and the team, and talked to all the boys on the team. It was beautiful. Special thanks here to Coach Summerville for putting up with J’s chatter and distracting antics during the game. 🙂
As I was starting this post, J was still doing well but had started showing just a few early signs of a possible flare beginning at 26 days into the 32 day run. The sleep disruption, coupled with some allergy activity, and a hectic night when we missed a dose of antibiotics led to two days of red behavior (what would have been days 33 and 34), but that was it. Two days. Not weeks and months of never knowing what might be the next trigger. Two days. So we’re starting over. He’s mostly back to his new baseline already. That alone is a victory. He’s starting to struggle more with tutoring again, but he has 11 school days to get through the rest of his school work and then we can celebrate the completion of 4th grade. We know he can do it.
Sliiiiiiiide!
Maybe we’ll celebrate the beginning of summer by going to a baseball game.
J keeps running away from home and risking his safety. I want to make this a funny story, but I can’t.
I deal with tough stuff by trying to make it funny. If I can make other people laugh about it, I can distance myself from it. Making others look at the situation as something endearingly nutty helps it be less scary. I’ve tried to write it funny. Twisted and turned it to make it laughable. But, it just isn’t funny.
Although J’s symptoms have followed the episodic pattern, worsening during a strep infection and leveling off a few weeks after finishing the antibiotics, he never returns to his pre-PANDAS “normal” level. At the new level, he retains certain OCD and anxiety behaviors and with each of the many infections J’s had in the last ten months, the new, in-between levels are increasingly fraught with different behaviors and triggers. So the triggers and behaviors we figured out how to handle 6 months ago are totally different today. We never know what to expect.
Disclaimer: J still has not been officially diagnosed with PANDAS. It’s a long story involving insurance companies and possible co-infections and additional autoimmune disorders, but I’m going to just write about it like he’s been diagnosed. Honestly, if it turns out he has something else, we’ll deal with it. At this point, we just can’t imagine what else it could be. And yes, it’s making me completely nuts not to be able to put a name to it.
J’s most recent flare resulted in an over the top fight or flight response. In September 2015, his flight or flight response was focused on school refusal anxiety triggers and trying to get somewhere safe. He would run away from school, but he’d be running home. This most recent fight or flight action is not about getting to the place where he feel safe and he has new triggers, including:
Homebound tutoring
Unexpected change in plans (even if those plans were only in his head)
Frustration over inability to control emotional response
Recognizing his response to something is hurting someone else
Now when J runs away, he’s running away from home. He’s running away from pain, anxiety, fear, and a relentless feeling that he doesn’t deserve to be happy. That he doesn’t belong. That he has to protect his family from himself. He has actually said the words, “I don’t deserve to be a part of the family anymore.” In the past two and a half weeks, J’s run away five times and tried to jump out of his third story bedroom window once. We have to watch him constantly.
He’s 10 years old. He deserves to be loved, protected, happy, nurtured, and understood. Whatever is happening in his brain makes him feel that he can’t have those things. The disorder has robbed him of those fundamental rights of childhood.
With this most recent flare, we dutifully had him tested for strep. It took two tries since we didn’t make it to the first appointment because he ran away and we ended up riding bikes all over the west side of town. J was so afraid to have the strep test that he hopped on his bike barefoot and helmet-free and took off down a narrow, winding, hilly road and straight into heavy town traffic. Thankfully, I pedal faster than he does and I caught up with him to keep him in sight until he calmed down enough to accept his helmet and some help. I had to call my wonderful friend, Wendy, to bring down some money so I could buy J shoes. I know, it makes no sense. If she could bring my wallet, she could bring his shoes. But he was fixated on needing new shoes to be able to ride home. Lesson learned, I now have a go-bag ready with money, ID, extra shoes for J, and water.
We didn’t make it to the doctor until two days later, when his dad was able to come with us and help J face the test. We were shocked to find out he doesn’t have strep this time. (Although, the culture results are still pending, but rapid was negative) We were further shocked to find out that his seasonal allergies can be enough to trigger a flare. So, this Spring is going to be fun.
Based on his recent behaviors, J’s immunologist put him on another round of antibiotics and prednisone while we wait to run more blood tests. It will take at least three days before we know if the meds are helping. Fingers crossed. In the mean time, the bike and the go-bag are always ready.
the past two years we thought we saw the light a few times, but we kept getting run over by the PANDAS train.
Oh, for the love of little green apples!
Many Faces of Mom 