PANDAS Sucks: Our PANDAS Silver Linings

A long post here, I wrote for PANDAS Sucks about the gifts this journey has given and the forks in the road it presents. Oddly upbeat for something called PANDAS Sucks… but hey, we’re silver linings people. Hopefully this isn’t too directed at the insiders! ~AliStarting to heal again in Fall 2016!

A few weeks ago a friend hesitantly asked me, “So… when do you think you’ll be past this?”

Ahhhhh……. Ummmmm…….. Hmmmmm………

Well, we have passed the two-year mark and our son is doing well. Just in the last couple of months, he has begun to conquer his lingering anxiety symptoms. For us that means eating new foods, speaking to and making eye contact with adults he does not know, playing with children he just met, spending the night at his grandmother’s without a parent, and attending his short homeschool classes without me nearby.

But the truth is, I have stopped waiting for the end. I still feel panic when he looks PANDAS symptomatic in even the slightest way. And I know (although that doesn’t always stop me) that I can’t pine for some fantasy of normal I thought we’d have or that it seems like others are living (they’re not normal-it just looks that way on Facebook).

Our son’s PANDAS diagnosis has changed all of us forever.

There it is.

However, it’s not all bad news. PANDAS is the lightning bolt that forced us to examine our lives and how we are living. Don’t get me wrong, it’s not all silver linings. If I could go back and skip this happening, I would. In a heartbeat. Mainly, for these reasons:

1) I am constantly coping with the fear that my child will not conquer this, that it will resurface and wreck his life, that he might not survive this physically or mentally.

2) I worry that he has lost some of his natural being to this. He has been changed from who he would have been in ways we don’t even know. His brain and his body.

3) My daughter has a better than average chance of developing PANDAS. I don’t want to go through the worst times with her, and I think it might be harder knowing what to expect and how long a journey it can be.

Um, okay. Deep breath. You take one, too.

Just writing that causes tear-filled eyes and I’m taking deep breaths to keep going. But it’s the truth and I know if you’re a PANDAS parent reading this, you may be holding back the tears, too. The fear is part of being a PANDAS parent and we have to find ways to carry this new unwanted baggage.

Now that I got the most painful part out on the table, let’s talk about the benefits my family will take from our PANDAS journey. I think mainly they fall into these areas: relationships, homeschool, personal growth, and inspiration. And like it all, this has been a journey. I did not wake up on day two and think, “My mother-in-law and I are getting so close!”

RELATIONSHIPS

I’m not saying PANDAS hasn’t been a strain on any of our relationships (including our marriage), but it’s been more of a boon for us. Honestly! I know who is there for us—no matter what. We have gotten support in terms of friends who will listen, people who still invite us and our unwell/unpredictable child to their homes and events, financial help for treatment and contributions for PANDAS parents to attend the PANDAS conference in DC last fall. This turn of events didn’t happen overnight for us, but sharing your family’s tough journey may open doors and friendships. It certainly has for us. I’ve been amazed at the struggles people I knew had been hiding for years. These same people were now suggesting doctors and resources to us.

And I’ve met some of the most incredible PANDAS/PANS parents! I don’t know if they were this awesome before, but many of them are changing the world around them for the better by educating others about PANDAS/PANS, creating safe spaces for PANDAS/PANS kids to learn and thrive and sharing their stories so others can have a bit more knowledge as they follow their own path.

A good friend gave us tickets to the hottest art show in DC and B was well enough to enjoy it!

HOMESCHOOL

We were fortunate. I was already not working when our son became ill, but even so, I’m pretty sure my first words on homeschool were, “Over my dead body.” Things were so bad and my son was so out of control, I thought we’d kill each other if I was also trying to educate him. All I knew about teaching was that it was not for me. We had a plan to look for a tutor and ask relatives for money if we didn’t have enough. But instead my son and I spent the first month of homeschool taking walks and pictures together. What a gift that camera was—his reward for finishing the first week of first grade at school (which he never returned to, but the camera came in handy).

Now we’re homeschooling two!

During that first month, he began to heal. We slowly started schoolwork with reading together. He read a line or two and I read the rest of each paragraph. We got through the first year of homeschooling and focused on his treatment (steroids and IVIG and oral surgery that year). We kept the pace of our life slow as we wandered around DC (we live in the nearby suburbs) following his interests. Many days he and I argued over workbook pages and at night my husband and I debated if we should homeschool his younger sister, too.

When our daughter brought home an illness in May that year, we decided that we’d try homeschooling them both. We were desperate not to activate his immune system so it could continue to heal and the PANDAS autoimmune reaction and its symptoms would continue to decrease. Anticipating Autumn, we joined a co-op with a great policy on not attending when sick. I dreamed of reading books and then going to see a Smithsonian exhibit on the subject. Amelia Earhart? Well, let’s just go downtown and see her plane! I planned a month in a beach house with my mother in Alabama for February. We were ready to be homeschoolers.

B’s second infusion of donor antibodies last September.

But, last Fall didn’t go as planned. After making huge gains all summer, our son suddenly had tics and OCD again. Due to rapid weight loss (he’d only gained one pound in the previous year because of the OCD induced anorexia), we decided quickly to do IVIG again. And yet, I had all these new friends (in the co-op) who understood. And we still read. And took walks. And I totally stressed out. We went to see Amelia Earhart’s plane. My daughter kept our son from being totally isolated from children. And she blossomed being out of a large classroom. We spent Mardi Gras in Alabama with my extended family and played on the beach in February. The kids can tell you the name of every bird they saw in Alabama. They write, and read, and do math.

And I have found that homeschooling might be this great secret no one tells you about. The secret that lets you love and experience life with your children as you learn and grow together. The secret that gives your child time to heal because he will learn multiplication after the donor immunoglobulin does its work and he can focus again. Not when they test him at school on their timeline. And the secret that lets you breathe and heal and find a new normal in ways you hadn’t even known existed.

PERSONAL GROWTH

And speaking of you… you know that woman in the cute sundress with the clean kids that made you feel really judged when your kid threw a shoe at you in public? This is hard. That was me. Maybe you missed it because I tried to hide my reaction since I already had kids and was learning they are not within our powers to control… but I’m pretty sure later that day I told my husband that I couldn’t believe so-and-so let her child treat her like that. Um, I am so sorry. So sorry. There are not enough words in the language to express my regret. I want to give you a hug and hot cocoa and a comfy pillow and babysit your child for a couple of hours so you can get the heck out of dodge. Yeah, so my heart has grown immensely. Sometimes it hurts and I wish I could shut it off-I check in on the PANDAS/PANS Facebook groups and struggle to read your struggles. I wonder if children I see are just having a hard time or if there’s something else brewing and maybe our story could help that family? I think some of this comes with age but PANDAS has forced me to extend the kindness I needed to those around us without questions and without judgement. Honestly, I wish I had the time and resources to do more. Perhaps that will guide me in the future.

INSPIRATION

Ahhh, the future. I’m a planner. I like to know where I’m going and how I’m going to get there. Which oddly has led our family to the questions:

What are we doing? Why are we doing this?

My husband and I were going through the motions and had some plans, but then PANDAS happened. So, it’s been survival mode. Get our son through today, keep his sister moving forward, cope, pay bills, google doctors and treatments. Repeat. Now we find ourselves examining our lives and why we’re doing what we’re doing. Feeling like two years of our son’s childhood were stolen really made the clock tick for me on the time I have with our children before they leave home. We feel really close as a family right now. I think it’s the gift of time to pursue things together that homeschooling has given us and the shared emotions through the ups and downs. Our hope is that both of our children will lead happy and healthy lives. I want them to learn to follow their hearts because we believe this is it-our one journey of life.

But the truth is we don’t know what comes next. For our PANDA or for any of us, for that matter. We’re starting to plan a year-long trip around the country with our kids and dogs and a lot of the good kind of craziness. I am craving the kind of craziness where the stress comes from adventure not adversity.

So now, we go forward. Boldly, with our fears, and an acceptance that things may change at a moment’s notice and the knowledge that when they do, we’ll handle it.

New Year’s Day 2017-Ready for adventure!

*I refer to my son’s condition as PANDAS (instead of writing PANDAS/PANS) throughout this article as we had a pretty classic presentation and clear clinical diagnosis and just for the sake of brevity in writing/reading. That said, I think there should just be one name for this condition regardless of the initial infectious agent. (And while I’m at it, can we call it a spectrum disorder, too?)

This post originally appeared on PANDAS Sucks: A Blog About What PANDAS is really like. That blog is run by the hilarious Sarah, PANDAS Mom to her awesome son, Jesse, and voice of many in the PANDAS community. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). And created the PANDAS Sucks blog to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. You can also find her on also FacebookInstagramTwitter, and Pinterest.

 

2 Comments on PANDAS Sucks: Our PANDAS Silver Linings

  1. judy
    June 17, 2017 at 5:04 am (4 months ago)

    You are a fine writer and a great communicator,just to give a thought that might(I hope be helpful) I grew up in the maelstrom that is Foster Care or parenting by government-many of the people with whom one comes in contact are monstrous in their treatment of children. I am sure their own frustrations are many and the weight of these tend to fall sometimes with brute force,sometimes with a constant barrage of demeaning,threatening talk. Not a day of my childhood was not filled to overflowing with fear and dread but when I was 11 or 12 I received a beating that must have shocked me so much that I did not feel it or cry and that strange experience taught me that I had a power-the power of quiet,not responding,not begging or pleading which made me feel so weak and powerless. I felt strong and that feeling has carried me through some tough times. Your son maybe developing a strength that does not seem apparent now but will carry him far further than the child growing up with smaller challenges. Don’t flatter him too much, just tell him he is strong and becoming stronger with each wave that comes and eventually he will learn to stand against them or let them wash over him but survive and prevail he will.

    Reply
    • Ali
      June 18, 2017 at 7:13 pm (4 months ago)

      Thank you, Judy, for sharing your story and strength. I’m sure you’re right that this is building strength that will last a lifetime.

      Reply

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