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

Food for thought… Our Story (Part 2)

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I hope you are comfy, because this is quite long! Let’s talk about food. Ah, food…. we have a love/hate relationship – as in, I love to eat it, but hate to make it. It wasn’t always this way – pre-PANDAS, pre-Lyme – making food was fun for me. I fell in love with cooking in my early twenties when I stumbled upon Nigella Lawson’s cooking shows and books. Nigella is British and she’s not actually a chef. She’s a food writer who makes really good home food and somehow makes it all seem so sexy! I have all of her books because they are so beautiful and always inspire me. I can’t use many of the recipes anymore, now that our cubs are on a restricted diet, but I still adore flipping through her books and I’ve adapted a few of our faves. She was my “first love” (in the kitchen) but I’ve had to move on. I’ve had to completely change my mindset when it comes to food and what’s healthy, and now the way I cook is very different from before but, like most things in our life, it’s become our new “normal.” I’ve also learned that the concept of “diet” should be fluid and open to change as you learn new things or sometimes, as your body heals, you find you’re able to add in things you couldn’t tolerate before.

Changing diet is actually a huge piece of the PANDAS puzzle. It does make a difference. And not just for us but many other parents have mentioned how crucial this is.The bonus for everyone in our family is that even though we thought we ate a pretty healthy diet, it turns out there was much room for improvement and now we’ve done a complete overhaul and we are all eating delicious nourishing food. (Ok, so it’s confession time – hubby and I do eat things that the kids can’t and we occasionally cheat, like, really cheat, but then I feel so ill I wonder why I bothered.) However, it’s just not a possibility to cheat on diet for our son. It’s just not worth it. The great thing is that even though maintaining his diet isn’t easy, he’s 6 years old and our daughter is 2, and they’ve eaten their diet for so long they’re just used to it. I know it could be very challenging to have to change an older child’s diet, especially a child with PANDAS who usually has eating issues as part of the disorder.  With our son, it’s still tough having to explain why he can’t eat the same food as other kids. I also still have to spoon feed him a lot of things, otherwise he won’t eat. Many children have allergies and food intolerances so we reassure him that he is not the only one.

Is it any surprise so many children have issues with the way our food is these days – highly processed, GMO’s, pesticides, antibiotics, hormones – basically, most of what’s in our grocery stores isn’t real food. And many of us don’t really think about, or know, what we’re putting into our bodies. I’ve been guilty of not reading ingredient lists in the past and not even knowing what most ingredients were (hint: if you don’t know what the ingredients actually are and there’s a huge list of ingredients, put it back on the shelf.) Hopefully I’m going to be your wake-up call. I hope you will feel compelled to start learning about ingredients and food chemicals. Everyone can benefit from removing preservatives, colours and additives from their diet. It can be overwhelming to change what you eat – you can jump right in with both feet or make slow changes.

So if you’ve been following along, you’ll remember that Panda was just over 2 years old when he changed overnight and our world became a tangled unrecognizable mess.  Read the first part of our story here. It was when our Panda was almost 3 years old that we discovered a connection between food and his behaviour. He had been banging his head excessively for some time. He. could. not. stop. himself. His forehead was covered in cuts and bruises. His tantrums were out of this world. It was very scary that he was banging his head so violently and so often.  He would bang his head against walls, floors, furniture, concrete, brick walls – it was so awful we wanted to put a bike helmet on his head. One time he actually said to me “Mum, I have to bang my head.” We tried to find out why he was doing this but Doctors and daycare staff said “He’s just doing it for attention – ignore it and he’ll stop.” Yeah, well, he didn’t. So this mama bear took it upon herself, as mamas do, and began researching head banging. I came across a website called Food Intolerance Network based in Australia. It was the beginning of our journey with how food impacts our health and behaviour. Although we have moved on from here, the basic principles I learned have not changed.

I found out from the Food Intolerance Network that there is a natural food colour called Annatto (but it’s often just listed as “natural food colour” on ingredient lists) that can cause head banging, headaches, tantrums etc. in some children. Just because something is “natural” does NOT mean it’s good for us. In our house, this stuff is just called ‘pure evil.” I thought, what the heck. No one else, (no Doctor, no Naturopath) has had any ideas that helped, it’s worth a try. I started pulling things out of our pantry and almost everything had annatto/ natural food colour in the ingredient list, including his natural vitamins. It’s in things like crackers, cereals, butter, (or vegan “butter” spreads) cheese, yogurt, ice cream…. We removed everything containing annatto from his diet and became vigilant about every single thing we bought and gave him to eat. The head banging stopped! If he happened to have even a small amount of food that had annatto in it his head banging started back up again.

Panda went to daycare 2 days a week and I had to start providing his food so we knew for certain that he wouldn’t eat something with annatto in it, but sometimes we’d pick him up and they’d say – “oh sorry, he accidentally had a fishy cracker or a piece of cheddar cheese.” And our hearts would plummet. We knew that the next day would be hell (it was always a delayed reaction – which is common of food chemicals,) The head banging would start up again and last for several days. Seriously, if they accidentally gave someone peanuts they wouldn’t be so calm about it. If they could see the pain they caused him, they wouldn’t be so careless. I actually feel like my blood pressure is going up just remembering this. I’m sure they thought I was crazy. Because of course if a mum makes a connection no one believes her, but if a Doctor made the same connection, it would be a different story. A while after Panda left daycare, I ran into one of his teachers and she told me she was so inspired by my courage to research and fight for my child’s health. This meant a lot, especially as she was one of the people who said he was just head banging for attention.

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We were so thankful to have discovered the Food Intolerance Network because no one else knew about the connection between annatto and head banging. I highly encourage you to read through this informative website, especially this list, highlighting the additives, colours, and preservatives to avoid. It’s astounding what symptoms chemical (and even naturally occurring) food additives can cause. Like Sodium Benzoate and Potassium Sorbate – two nasty chemical preservatives that can cause shortness of breath and asthma-like symptoms. These preservatives are widely used. I have personal experience reacting to these and it’s awful. You can also look through the factsheets on symptoms and find out what food additives could be causing them.

In the Failsafe book, it suggests an antidote for food reactions that parents have noticed helps. ENO and Caltrate. Nobody seems to know why these help, but they do. We have used it any time our son is reacting to food, or even if he swims in a chlorinated pool it can set him off, but ENO can lessen the reaction. So can Epsom Salt baths. Now he actually knows ENO helps him feel better and will ask for it if he is in a bad flare. I’ve also heard many parents have used Alka Seltzer Gold with the same results.

During all of this, I was pregnant with our second child and I was very very sick. I vomited a lot when I was pregnant with Panda but nothing compared to this. This time, I had Hyperemesis Gravidarum and vomited so much I couldn’t even keep water down. I remember that it was like I was just trying to survive each minute. Nine months is a long time when you are trying to survive minutes. Looking back, most of that time is a blur.

And then there were four

In the midst of all the chaos with Panda, our sweet baby girl was born. Gigi’s birth was a lot different from Panda’s. This time I had a wonderful midwife and doula as well as my husband and mum to help me. Even though Gigi’s birth was quite traumatic at the end, and I did need the assistance of the OB as well, I still had an unmedicated birth that I felt better about, even if it didn’t turn out the way I had imagined. It was the worst physical pain I’ve ever felt – it was like my body was completely taken over by some other force and I had no choice but to go along with it. But the pain of childbirth is only temporary and the love for your babies is permanent.

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For Panda, the problem wasn’t as simple as just removing Annatto from his diet. Yes, the head banging stopped, but there was definitely still something very very wrong.

He would scream and have tantrums lasting for several hours and nothing we ever tried ever calmed him down. And we tried everything. No amount of scouring parenting books helped. Do you know why? Because this behaviour is NOT normal. He is not just a spirited child. Now that we realize that we were dealing with PANDAS/PANS symptoms it makes sense why nothing was working. When parenting a Panda, all you know about parenting, goes out the window. You simply cannot parent a child with PANDAS/PANS the same way as you would a healthy child. No matter how hard you try. With our son, we basically just had to wait for the storm to pass every time he went into tantrum mode. By this point we were at our wits end (you will see that we’re at our wits end, or the end of our rope a lot – turns out the rope is longer than we thought.)

We took him to our new family Doctor and she said “Do you think that perhaps parenting is just harder than you thought? This is your first child.” I really wanted to slap her! So infuriating! YES, parenting is harder than we thought, but because there is something wrong with this child. It is frustrating and maddening that parents’ concerns are dismissed or brushed off. We know our child, for crying out loud! So many parents encounter Doctors who don’t even believe PANDAS exists – that it’s something parents made up who can’t control their kids. There is research and evidence that it exists. How insulting to all the Doctors who research and treat PANDAS kids, to all the parents and caregivers raising these kids. Don’t tell me that the hell my child and our family (and all the other families) suffer through isn’t real. These people wouldn’t last a day looking after our kids and they’re not worth our time and energy. My mum came with me to this Doctor’s appointment because she thought our concerns might just be dismissed. She had been researching and came across PANDAS and Lyme Disease. Ding ding ding ding ding! Alarm bells and light bulbs going off! His symptoms certainly fit. My parents fostered children for over 9 years and were used to kids with behaviour issues. Even an old family friend, who also fostered children for many years pointed out that our son’s behaviour was really bizarre, she had never seen anything like it. We knew we weren’t just imagining it. Our Doctor had heard of PANDAS but admitted that she didn’t really know about it, or Lyme Disease. She swabbed his throat for Strep, which came back negative. (That was the end of the PANDAS investigation until almost a year later.) Unaware of how to help us (and not really believing there was anything wrong with our sweet, darling boy) she referred us to a local pediatrician and we waited for an appointment. In the meantime, we needed to do something.

I went back to the Food Intolerance Network to see if there was something I’d missed. We decided to try the Failsafe Diet which is based on the RPAH Elimination Diet from the Royal Prince Alfred Hospital in Australia. It’s all about a diet low in salicylates and amines that are naturally occurring in fruits, vegetables, meats etc. For those of you who are familiar with the Feingold Diet in the U.S., it is similar to that. Let me tell you, doing this diet just about killed me. It is slit-your-own-throat boring and almost impossible! We did the Failsafe Diet for almost 7 months, and it’s a miracle we all survived. I know people have stayed on it for years but I don’t know how they maintain their sanity. There are so few things you are actually allowed to eat, it’s difficult to pull together a meal and one that actually tastes good. But boy you get creative, and thankfully other people have, and through searching and connecting with other Failsafe moms around the world, I found some books and blogs with Failsafe recipes. Somehow you get used to pretty bland food. You’ll do anything if it helps your child. It’s amazing how strong that pull is. But to this day I have not bought or cooked a rutabaga (swede) or cabbage. I just can’t.

Before starting Failsafe, we contacted a nutritionist in Australia who was listed on the Food Intolerance Network. She helped guide us to make sure he was getting enough nutrients, and if we were accidentally slipping up. Initially, we saw great gains doing Failsafe. For a couple of weeks we had our boy back! It was heaven.

During this time, we had our appointment with the completely useless pediatrician. He didn’t believe us that diet had anything to do with Panda’s improvement. In the short time we were there, he discovered that Panda is very smart, pointed out flaws in our parenting, and told me that I must do “a lot of research on the internet.” The condescending jackass. We are both educated people, which he didn’t bother to find out, of course. He was so offensive. To this day I wish I had written him a strongly worded letter telling him exactly what we thought of him and how wrong he was.

The honeymoon was short. Once we started adding foods back in after the initial elimination period we could never get him back to baseline. After 7 long months we knew this was not working. I had joined a support group that went beyond Failsafe. I found a Nutrigenomist specialist in Australia at The Autism and Gut Centre (TAGC) and started Skype consults with her. They really know their stuff when it comes to gut issues and are involved in many research projects. She recommended we abandon Failsafe in favour of a Paleo diet. While Paleo can be daunting, compared to Failsafe I had way more variety to work with and the food is delicious. Seriously delicious! I sometimes eat gluten-free baked goods and honestly, they’re not very good. But Paleo, is yummy and often tastes better than the gluten-filled, sugar laden baked goods we’re used to. Dinners/main meals are not hard to adjust to and we found there are lots of healthy alternatives to the meals we’re used to cooking. It’s just a lot of cooking and a lot of dishes. And a total new mindset. But I’d done it before. I was used to “living” in the kitchen.

The specialist at TAGC, recommended a DNA test and Pyroluria testing because he has low zinc and high copper. Using the results from the tests, she planned what supplements he should be taking, like increased Vitamin D, Zinc, Magnesium, Broccoli Sprouts, B Vitamins, Probiotic, Saccharomyces Boulardii, Omega 3 etc. Epigenetics is very interesting – we can’t change our DNA/genes but we can trick it by using the right supplements to help our bodies work more efficiently. Still after over 6 months of trying all these new supplements and changing his diet again, there was little to no improvement.

Then one night my mum called us and said “Put on the TV! There’s a segment about PANDAS and the kid looks just like Panda! We watched, and they were showing all the bizarre behaviours our son had. The show featured some Doctors in Canada who treat PANDAS. We immediately made an appointment with our family Doctor. Finally it all made sense. We wanted him tested for Strep again, only this time we asked for the ASO titer blood test and Anti-DNase B titers (no longer available in Canada,) and we asked for a referral to one of the specialists we saw on the show. We had been living with this hell for years and were extremely desperate by then. Totally and completely at the end of our rope.

To be continued…

 

 

 

 

 

 

Chocolate Raspberry Pavlova

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This dessert should probably be filed under a section called “Recipes for adults – who like to cheat sometimes” (on diet, of course.) It is not strictly Paleo. It remains, however, one of the best desserts I’ve ever tasted, my guilty pleasure. It’s my go-to recipe whenever I need to make a dessert to take anywhere. It’s great for Birthdays instead of a cake, perfect for sharing, or even just for yourself – if you are feeling particularly self-indulgent. I make this no matter what season it is, but it is loveliest in summer with super fresh red raspberries.

I tried, I really did, to make this totally Paleo. I found a couple of other recipes that removed the sugar and replaced it with Stevia or honey. I was so excited to make my favourite dessert completely healthy. I don’t know what happened but both attempts were disasters. I don’t know if it was the pressure, because it was for my son’s birthday, but something happened and it was not good. They didn’t taste very good and the texture was all wrong.

We ended up eating the failures anyway and someday I will attempt to make a sugar-free version again, but when it came time for his birthday party, I made this recipe I’ve been making for years and years by Nigella Lawson. I changed some things: I cut the sugar down to 1 cup, and could probably even try cutting it down a little more. My kids aren’t supposed to be having refined sugar, and the majority of the time they don’t, (heck, refined sugar isn’t good for anyone.) I figured I’d at least cut it down for this special treat that we only have once in a blue moon. Also, since my kids can’t have dairy I used coconut cream instead of whipping cream for on top. To make coconut whipped “cream” put 2 cans of full fat coconut milk in the fridge overnight. Scoop all the thick cream off the top and whip until thick. You can add a splash of vanilla before whipping. Then layer on top of the pavlova as the recipe says (I’ve done half with coconut cream and half with regular whipping cream,) scatter with raspberries and grate dark chocolate on top. Eat with joy in your heart!

I remember making this for a group of friends years ago and one friend who had already had it before told everyone else that it’s sooo good, she wanted to put her face in it so nobody else would want any. One of the other girls said she would eat it even if she had put her face in it because it looked so amazing. So there you have it – this is a “so delicious you want to put your face in it kinda dessert!” It’s a winner! Now you have to make it to see if it’s true, and you’ll be so glad you did!

 

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Easy, Healthy Chocolate Popsicles

My cubs love these Chocolate popsicles! They taste like Fudgesicles, take minutes to make and have no nasty additives.

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Ingredients:

1 Can of Full-fat Coconut Milk

2 TBSP Honey or Pure Maple Syrup

2 TBSP Cocoa

1 tsp Vanilla

Put all ingredients in a big glass jug and whisk together until everything is combined. Pour into popsicle molds and freeze until hard.

In the Beginning – Our Story (Part 1)

In the beginning – there were two…

My husband and I were married eleven years ago, exactly 1 year after we met, much to the disapproval of my in-laws who have never really liked me. People who know me have a hard time understanding this, as do I. But I was the elusive woman he met in Canada, who stole his heart. And he stole mine. It was love at first sight.

If I’d been the all-American-girl-next-door, things might have been different with his family. But the thing about soul mates is that it’s an unstoppable love. It’s an intoxicating, forever kind of love. Once you find your soul mate, there is no going back. No force is stronger, except perhaps death. It’s bigger than the two of us and it is what holds us together through everything. His parents made the unfortunate mistake of making him choose: them or me. His past or future. There was no choice – it would always be me. It’s not been easy. We have been through hell, and come back even stronger. Our relationship is the steady constant that keeps us going through the tough times. We have learned so much from this experience and we will never make our children choose between us and their spouse.

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And, then there were three….

We had been married for about 3 years (and my husband was almost finished his degree) and I started feeling that ache that takes over your insides, that yearning for a baby. It overcame me and we talked about nothing else. We picked out baby names. I suddenly became very aware of babies everywhere, completely infatuated with them. I wanted one of my very own. But the timing wasn’t quite right yet. A year later, hubby graduated Pharmacy school, we moved back to Canada, bought a house, and decided to try for a baby. After months of vomiting and living off salt and vinegar chips (the only thing that would kind of stave off the nausea, even with Diclectin) I gave birth to the most perfect baby boy. I always thought I’d fall madly deeply in love with my baby the instant he was born (that’s what we’re told right?) But it was a slower kind of falling. Truthfully, I was in shock. I was unprepared for birth and the excruciating back labour. My birth plan was thrown out the window and nothing resembled the actual birth I had hoped for. But the very first time you see your child’s face after months of waiting, of anticipation… it’s miraculous! Like, WOW, that’s what you look like. It’s you – the one who’s been keeping me up all night riding a bicycle (taking after his father.) I’ve been waiting for you.

We were in the hospital for days because Panda had jaundice. Which meant I didn’t sleep for days. Don’t people know that a new mama needs sleep? But how can you sleep with people popping in and out of your room to do a survey, take footprints, check the baby, help you breastfeed, or bring you totally unappetizing “food” and nothing even close to a real cup of tea. Besides, I was too worried about making sure he didn’t take off his little goggles in the incubator… Anyway, sleep deprivation hit very quickly and we went home very, very sleep deprived. And I pretty much didn’t sleep again until he was 16 months old.

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Panda was an exceptionally happy baby. You know that baby that everyone is drawn to? Yep, that was him. He was charming, delightful, funny and super super smart. Like, knock-me-down-with-a-feather intelligent. To this day he still amazes us.

Shortly after he turned two years old he suddenly and dramatically changed. We can pinpoint a few things that happened just before he changed. We went to a cottage for a week for his second birthday. A few weeks later we took him to the Doctor for his MMR vaccine, which we had chosen to delay. After that, we lost our son. He has never been the same. He is almost 6 years old and we still haven’t gotten him back.

Please understand, we were not anti-vaccines – we were selective and cautious about which vaccines we gave and when. Our son was vaccinated. We researched. We consulted professionals. We thought we were doing the right thing. Now, with further research and our experience we would have made different choices if we could go back in time. It’s not necessarily that the vaccines caused his symptoms but they played a role in attacking the body of a child with a weakened immune system, unbenownst to us. What came first? The Lyme? The PANDAS? The toxic overload in his little developing body? It’s all part of the puzzle that we will probably never know all the answers too. If his tiny body was already immuno-compromised then giving him the MMR was just another layer of stress put on his body and immune system. It’s like these children are walking around like little loaded guns. You don’t know what will be the trigger. Sometimes, it’s vaccines. And that’s the reality.

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Our son changed suddenly, almost overnight. He was irritable. His tantrums were out of this world. He was two. So what was happening to him was often brushed off as terrible-twos. And of course, we were first-time parents – so that means we know absolutely nothing. He would wake up screaming in the night, completely inconsolable. He started banging his head excessively and could not stop himself. His forehead was covered in cuts and bruises (more about head banging and it’s connection to food in a separate post.) We took him to the Doctor and discovered he had pinworms (which he could have picked up at the cottage and are so common, especially in children.) Pinworms can cause irritability, night-wakings etc. There was a slight improvement once he was treated for worms. But instead of getting better, he became obsessive. Drove us all stark-raving bonkers with his obsessions of fans. He wanted them on, then off, then on, then off, then on, then off…well you get the picture. But he’d scream whether they were on or off and we could not win either way. He noticed those bloody fans everywhere – we’d be in the grocery store and he’d point out the fans way way up on the ceiling. Or a teeny-tiny fan way up high on a shelf somewhere. And he became terrified of them. Terrified whether they were on or off. We always had to be on the look-out for fans to try and reduce potential meltdowns, but this kid is way more on the ball than any of us and notices everything, especially fans (kinda like how I will notice if there is a spider, even a tiny spider lurking around.)

Our little boy also became hyper-sensitive to us leaving him. We had started him at daycare and he sobbed uncontrollably when we left him – I remember the look on his face, it’s etched in my heart and memory. I feel heartbroken now knowing what I know. We needed a break. I needed a break. But knowing about PANDAS now, I wish I had never have left him like that.

Panda was potty trained early, led by him. He hated diapers. By 17 months old he was using the potty. But after he changed he was having more and more accidents. We remember how he would scream at us when we took him to use the potty “pull down my pants, pull them up, pull them down…” nothing was right. It wasn’t right when they were up and it wasn’t right when they were down. We didn’t know then that this was OCD. Like the fan obsession.

Panda became super sensitive to noises and bright light. He also restricted what he would eat. Yet, he had always eaten anything and everything – he used to love food. Prior to all this he had been a great sleeper. Now he would stay awake late and wake up throughout the night, screaming. He became defiant, oppositional, hyper, anxious and emotional. We knew something was wrong with him. But we were told by Doctors that he was fine. It’s shameful how parents’ instincts are dismissed. Trust your instincts! You know your child. You know in your heart, in your pit of your stomach that something is wrong. And we did too. There will be people who don’t believe you – forget about them! It’s frustrating as hell, but they will not help your child get better and that’s what matters most right now. It could take years to heal your baby and you don’t need toxic people dragging you down. Let go.

I remember one of my favourite parts of Panda’s brief childhood before it was interrupted by this nightmare… we used to slow dance every night before he went to bed. His favourites were: You’ll be Blessed by Elton John and anything Michael Buble. He’d clamour up into my arms (or Daddy’s arms, Grandma’s arms, Auntie’s arms) and put his chubby little arms around my neck and we’d dance (you know those chubby arms that look like they’re always wearing an elastic band on their wrist.) In those moments I knew I would remember that feeling forever. I stored it away deep inside my heart and mind and remembering it now breaks my heart. But I hold onto it tightly because I need those memories to keep me going. I need his memories of his childhood not to be full of this hellish nightmare. I will fight to create moments of goodness in his life, even if they are only moments. But we want our baby boy back. And we will do whatever it takes to help him.

To be continued…

Please follow and share our journey on our Facebook Page: The PANDAS Puzzle

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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

Please follow and share our journey on our Facebook Page     The PANDAS Puzzle.

I’m not a good mom. But am I enough?

I sometimes wonder if I’m screwing up my kids…. When I’m lying awake at night, (I’ve struggled with insomnia for many years,) I worry that the choices I make are somehow traumatizing our children – a bit over dramatic, I know but, I come from a long line of worriers so it’s to be expected. I’ve even thought that perhaps I should never have had kids – that I’m just not cut out to be a mom. I know I’m not alone here. Why can’t we just have a “normal” life?

I may not be a good mom. But am I enough? I’m the mother my kids got. I do believe we’re not given to people by accident – these are the kids we were meant to have. Is love enough? If you love your children from the depths of your soul, with every fibre of your being, to the moon and back, is that enough? If you won’t ever give up searching for answers, for treatment to get them well, is that enough? I hope so. I’m doing my best with the life we’ve been given. Sometimes I’m all out of patience. Sometimes I want to run away – but I don’t. Being a parent to a brilliant, special needs child has made me feel so many feelings I didn’t even know I had. This crazy, invisible-to-outsiders, make-me-pull-out-my-own-hair, fall-to-my-feet-in-tears, want-to-go-outside-and-scream-obscenities life is our “normal.”

I hope that when our children are grown up and have survived this tumultuous childhood they won’t think: “Wow! Mom really screwed us up!” Is it just this generation of mothers who so often feel like failures and carry so much guilt, or did our mothers and grandmothers feel this way too?”

I think instead of lying in bed at night thinking of the things I did wrong today, I should focus on the things I did right, and be hopeful for tomorrow. My deepest wish is for them to be healthy and feel happy and loved.

There are so many times when I feel like I can’t cope with this hell anymore. Why did this happen to us? But somehow I always do cope. Somehow I’m okay. (Even though life seems like a broken mess. I am not broken.) It think it’s called survival and hopefully there will come a time when we don’t just have to survive life – we can actually enjoy living it. Until then, I’m gonna keep telling myself – “You got this, mama! You are enough!”

There is a heaven… and a hell

I’m writing this with my second glass of wine in hand so we’ll see how this goes. And…I have at least 3 other blog posts on the go – so stay tuned, but I felt this was what I was supposed to write about today.

We have very few actual good (ok, I mean, great) days with our Panda. The last time we had a “great” day was February 26th and that was the first day in months. Yes you heard me months! ONE. GREAT. DAY in MONTHS! Pretty much unbelievable for most people. But I’m sure it’s something that other PANDAS parents are all too familiar with. It is April 6th as I’m writing this and the last “great” day we had was February 26th!!! When this happens, and you can see it is a rare occurence for us, we just soak in the deliciousness of the day as much as possible. It’s like someone has taken our son with PANDAS and left us with the lovely, pleasant, easy-going child we remember who does not have OCD, anxiety, tics, or rage. We actually feel like we’ve been transported to heaven. It’s like we have been given our beautiful happy son back, for now. Today, he was even writing his Christmas list to Santa.

When this happens, we feel lighter, freer. We can breathe again. Life is enjoyable and happy. This must be what it’s like to be a “normal” family. But, and there is always a BUT… we know that tomorrow could be hell on earth. And it was, last time, on February 27th. On February 26th, he was exposed to a friend who was getting sick and the next day was pure hell. PANDAS kids are like radars for illness. And the angel who was gifted to us on February 26th was taken and replaced by what seemed like the devil on February 27th. That sounds harsh and a terrible thing to call your own child, but deeply, sadly, it’s what it felt like.

When we have this day-in-heaven, I can completely understand why other families have loads more children. Completely understand. If it wasn’t for the fact that I have progressively worse pregnancies where I vomit so much I can’t even keep water down, and even worse deliveries, I would want more, many more, of these lovely creatures who make my heart swell with impossible love. It’s a miracle we have two children. We often joke that our son tricked us into having a second child. He was having a few good days back then and we had always wanted two children, and the experience of raising a boy and a girl – so predictable – yes. And, fortunately, 9 months later, we were blessed with our baby girl and got exactly the family we wanted. Kind of.

So today, on what was actually a pretty dreary weather day, I soaked up my happy-go-lucky sweet boy. I fully enjoyed his company, how his intelligence, insight, and sensitivity continue to amaze me. I put him to bed and whispered gratitude and prayers knowing full well that tomorrow he might be taken from us again. That tomorrow could be hell, but hoping with all of my heart that it isn’t.

xo

 

 

 

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