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.
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.
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…