The value of meeting other PANDAS/PANS Parents

Recently we had the opportunity to meet up with some members of our online support group. There’s something so immensely comforting and rewarding about being in a room with other PANDAS/PANS parents – to finally connect with the people who’ve “saved” you time and time again. These are the people who’ve talked you back from the edge – brought you back from the brink of insanity. Day or night – they are there. To be able to hop online to your support group anytime and vent, cry, or even celebrate successes (no matter how small) and know that someone will answer and understand perfectly. They know you in a way that others can’t truly understand because essentially you are all living the same life. They know the most raw, challenging parts of your life that you may not share with others. They get it. Because they live and breathe it too. I am more thankful for these people than I can even describe.

Some people talk to each other nearly every day. One mum and I have joked that we wished we lived down the street from each other so we could help each other in a crisis, and drink wine and cry on each others shoulders. When I met these mums it’s like an instant familiarity. It’s like looking in a mirror at myself. The common thread that ties us together – our children! There are tears, hugs, laughter, brainstorming, and lots of conversation. It was wonderful to see some Dad’s make it out too. I know that, like my own husband, many are apprehensive, but it’s a good chance to connect with other men who are going through exactly the same thing. And, after a drink or two they are just fine.

Of course, when we came home, Grandma said that Panda had been as good as gold. But since being home he has been wild. We have been trying to leave the house since 2:30pm and it’s now 4:20pm and we are still at home. In that time he has been hungry, but the pancakes were too hot or too cold, the pancakes soaked up the syrup during one of his meltdowns so now there isn’t enough syrup. Here it comes: the domino effect. He needs to pee but won’t. His sandals were left out in the rain so he can’t wear them, but none of the other shoes feel right…they’re too tight, too loose. He wants socks. But they don’t feel comfortable. He can feel bumps on his feet and it’s bothering him. His glass of water is too full, now it’s not full enough. He’s running wildly, screaming, thrashing around, pupils dilated. We didn’t make it out of the house today, but that’s okay. He’s possibly herxing from a medication he had 2 days ago. It’s dosed every ten days and when he has it we hold our breath because we know what’s to come. But also, he’s been so good – holding it all in while we were away for the night and he just can’t hold it together anymore.

It was still worth it to go away. To be away from the usual routine, however briefly. I was so thankful to not be in charge of giving out medication at specific times of day. Panda’s list of meds and spacing them out at the appropriate times almost makes my head spin.

So if you are able to organize a meet-up in your area – go for it! Choose a central location and it’s a good idea to arrange a discounted group rate for a block of rooms at a hotel (for people travelling from out of town) and book a private room for dinner so people feel they can talk freely. There’s something so powerful about a group of “strangers,” who feel like family, united by their children’s health issues, having the chance to sit down face to face and talk about it all – how we fight for our children daily – fight for this disease to be recognized – fight for appropriate treatment – fight to raise awareness – fight for Doctors, and health care professionals, and teachers to be educated. Change will come. And it starts with groups of parents who connect, support, research (often late into the night) and share information. It starts with us.

Cooking for the cubs

We have been on our food journey for three and a half years now. And, it is hands down, the thing I get asked most about from friends. So, this section will be where I post the recipes we cook for our kids. I am very grateful to those people who have gone down this road before us and created wonderful recipes. We make our own little changes along the way, but these are the recipes we use time and time again in our kitchen. They are fussy Panda approved… mostly. He often throws me a curve ball and suddenly decides he doesn’t like his favourite foods. So I just keep trying new things.

Our son’s diet has changed and evolved many times over the years as we’ve become aware of foods that cause issues. We currently eat a mostly Paleo, sometimes AutoImmune Paleo diet, but always free of gluten, dairy, colours, preservatives, additives, and refined sugar.

It can be challenging getting used to a restricted diet that’s not full of refined sugar and flavour enhancers. But honestly, compared to the Failsafe Diet (a piece of our puzzle, I’ll talk about in more detail,) the Paleo diet is like heaven. Even compared to gluten free stuff, Paleo food tastes so much better. In fact it tastes better than the traditional North American diet we had in the past. I used to have a BIG sweet tooth. I craved sweets and desserts. Now that I’m used to not having refined sugar, having replaced it with the more subtle sweetness of honey and maple syrup, and using far less in recipes, I don’t crave sweets anymore. Desserts laden with refined sugar actually taste too sweet for me now. You’re taste buds adapt, so give it time and give your kids time to get used to it too.

This section is a work in progress while I get my site up and going, but please check back, I’m looking forward to sharing delicious healthy recipes with you.

Today you are six – my letter to you, Panda Bear

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Today you turn six years old, little one. And like every other parent I wonder how that’s possible. I feel like I only took a breath since you’ve been born, so how can six whole years have gone by?

You made me a mother. You! Without you, I would not know what this impossibly huge love feels like. It’s a love that fills up every empty space, it could move mountains. It’s a totally unconditional, practically indescribable love. How can you put into words this big love? It is a gift, a blessing beyond anything else. You gave me that. I am happy you are in my life, and I also feel sad because it seems that our time together is always fleeting. Already I miss your chubby hand in mine. I miss the way you smelled as a baby. Not that new baby smell, but the one that was just yours (and your sister had it too.) No one else could smell it like I could, not even Daddy. It’s like how mama animals know their babies by their smell. I always wished I could put it in a bottle and keep it forever. Your blanket that you used to tangle yourself up in smelled like you too and when you were sleeping at night I would inhale deeply as I kissed your sweet head, and my heart would melt. I hope one day you will know this kind of love.

I’m sad because so much of your short life has been filled with pain and challenges. I hope it doesn’t make you feel broken as an adult. Instead I hope you see it as a testament to your strength. I wish you’d had more of a childhood. You were so little. So full of joy and happiness. And, I weep because we never get to have it back. Unfortunately, that’s the way life is. We can’t hit pause and then rewind. We can only ever move forward. I hope you will always know how much I love you. My deepest wish is that someday you will be well again. You will be free of this disease that has taken over our lives.

Today you are six and I realize that we still have so much to teach you about life… like how to love and be loved, how to make good choices, and so much more but it feels like there’s not enough time, especially if so much of our time is spent managing this disease.

There will come a time when you’ll learn things all on your own – as the main character, the leading man, in your own life and I will step back – as best supporting actress. That’s the way it’s supposed to be. But for now I’m the leading lady in your life and I will hold onto that as long as I can.

Before I was a mother, I had a vision of the kind of mum I’d be. I imagined living in a big house on the beach. It was always summer and apparently there were no bugs because the doors stayed open and children were free to run in and out of the house playing happily. I pictured standing barefoot in the kitchen in a long summer dress making food and drinks for friends. Everything was so relaxed and lovely. Sand was tracked through the house but I was so happy I didn’t care. Okay, hold on a second. As my mum said, when I told her this vision of heaven – “That’s not real life. That’s a movie! And you would hate sand tracked through the house.” It’s true, I would. In real life we live an hour away from the beach, and we live in Canada so we get to enjoy four seasons. I’m far from the serene mum I imagined. About the only thing that’s true is the barefoot thing. What I’ve learned is that being a mum is so much more and requires so much more than I could have imagined.

Today you are six and I believe you will get better – maybe not today, or even tomorrow. I know we are in this for the long haul – but you will get better.

You are a smart, sensitive, gentle soul. And you care – never stop caring. Don’t let the world change you or crush your spirit. Because, darling, it will try. People will try to change you, but you are strong. Be authentic and true to yourself always. Life is incredibly precious and fragile. I often wonder where life will take you. But wherever it takes you, remember that I will be here whenever you need me.

Every birthday I silently cry over what feels like another lost year. When you blow out the candles I wish for a year of health and happiness, of peace and serenity, instead of turmoil and chaos. But I will appreciate the moments of goodness. I recognize the limitations on our lives at this time and will focus on what we can do instead of dreaming of things that aren’t possible right now. But don’t think for even a second that I’ll stop dreaming of good things for you, because someday you will be well and those dreams will come true. I hope you will remember the good moments. Every night, when we ask you at the end of the day what your favourite part of the day was you always have lots of good things to say, even small things like: having tacos for dinner (your favourite,) going on a bike ride…. Then we ask what was the worst part of the day and it’s never what we would have guessed. It’s things like: you didn’t get to play at the park longer or you wanted two chocolate popsicles, not one. I hope the good times are what stick in your memory.

Every night I tell you, and will keep telling you: “I love you darling, to the moon and back. I love you forever, I’ll like you for always. As long as I’m living, my baby you’ll be.”

Love always,

Mum xoxo

P.S. My loves, if you ever read all of this someday, please don’t feel bad. I write our story because there are many more children, just like you, and families, going through the same thing. They need to know they are not alone. We need to raise more awareness so hopefully more Doctors and Health care professionals will educate themselves about PANDAS and Lyme Disease so that people don’t have to suffer as long as you did. Hopefully children will get help and treatment sooner. Your lives are important. You have purpose. And that’s why I share our story. xoxo

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