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…

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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

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