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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7 thoughts on “In the Beginning – Our Story (Part 1)

  1. Thanks SO much for sharing. This is quite similar to what happened with us 😞 PANS/PANDAS parents are fighters, just like their kids and one day soon, I hope that all of us will get our kids back from this. We just have to right? No other choice…. I look forward to the continuation 💛

    1. I agree! We have to keep fighting… keep hoping. Oh boy, it’s tough but what choice do we have. One day at a time! Thanks for reaching out. I’m working on the continuation 😉

  2. finally recovered our kiddo last year. we had always used diet as our primary intervention. after 4 years of GAPS we took completely different approach to diet. from extreme pandas – would not go outside for 2 years etc – to back at school 95+% recovered. We decided to share out success and method in case it is helpful to other parents.
    https://www.facebook.com/groups/1425337321118797/

    1. Hi Carrie! I’m so sorry you are going through this too. It makes me so sad that so many children and families are suffering. It’s a little scary for me to share our pain, but it’s worth it when people like you tell me it helps them to feel less alone.

  3. What is ENO? I was googling tonight for Annato and found your blog. I have two Pandas and we are doing extreme antibiotics and herbals. Years ago I tried failsafe and stayed away from additives. They were doing so well I fed them a Daiya cheese pizza. Bad night to say the least. Can you share what the ENO is? I googled and can not find it. Also you mentioned Caltrate? Thank you!!

    1. Hi Zoe, I sent you an email with some links so you can see what ENO and Caltrate are. I don’t think ENO is available in the United States, if that’s where you are. But people have found Alka Seltzer Gold helps.

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