Just quickly: click here for an explanation of Dysautonomia and POTS. My posts will get painfully repetitive this month if I explain it every time.
POTS and Dysautonomia doesn’t always show in a typical way in childhood. We don’t always get a heart rate that quickens on standing and feels better when we lie down. Our parents can’t always identify whether we feel bad because we are too hot and our autonomic nervous systems are going haywire, or because we are grumpy and having a tantrum. We’re just too little.
On top of that, the awareness of POTS and Dysautonomia is so low that parents and even Doctors don’t know what the warning signs are. My mother is in the medical profession. She knows how to read a heart rate, take a temp, observe unusual sweating, unusual amounts of stomach pain, etc. But neither of my parents suspected Dysautonomia in me. And I don’t blame them in the slightest. For a syndrome that is not classed as rare, there is a pitiful amount of awareness. So, I want to share what my early signs were. If it helps one other family – that’s worth it.
I was called a fussy eater my whole childhood. Now I know kids have a natural aversion to new foods, and this is stronger in some kids than others. So maybe it was just difficult to get me to try new foods early on. However, my parents never indulged fussy-ness very much. A refusal to try something didn’t get me very far. So, I did.
The problem came when I had to try to finish the meat or veggies on my plate, and my stomach would hurt. I remember telling my parents I was full, because that’s the only way I could comprehend the feeling. I had only eaten half of what I should eat, so of course they didn’t believe me. They thought I just didn’t want to eat the healthy food. I would plead to leave the table. Sometimes it would work, and I remember sitting down in front of the T.V. or lying down trying to go to sleep with a really sore tummy. I was struggling to digest my food; it was causing bloating and stomach pain. This is a classic symptom of Dysautonomia. I just didn’t know how to express it.
When I went to birthday parties, I would eat all sorts of food and drink full of food colouring and sugar, probably back in the late 90’s there was caffeine in those fizzy drinks as well. They played havoc on me. 20 minutes after food time when all the other kids were having a hyperactive blast, I could often be found sitting in the corner crying for my mum, saying my tummy hurt or my head hurt, saying I was going to be sick. It came to the point where my mum decided I was allergic to food colouring (she was onto something) and would send me to parties with strict instructions to just drink juice or water and try not to have too many sweet things.
The telling thing was that I listened. Even when no adults were supervising what I ate as far as I knew, I would look at the birthday cake, and I was scared to eat it. I was scared of feeling yucky like I did when I had the coloured fizzy drinks.
I was a 5-year-old scared of eating birthday cake. I LOVED birthday cake.
Looking back, this was Dysautonomia. The sugar, food colouring, and caffeine sent my system into a kind of shock. I wasn’t used to it, usually eating a pretty healthy diet at home. My heart would race which my parents thought was panic. My stomach would hurt which was a lack of proper blood flow. My blood sugar probably spiked and then plummeted, which makes a person feel shaky, faint and nauseous. No wonder I was scared.
As soon as I hit primary school age, I struggled with what everyone thought was anxiety. I was always scared of getting sick, which I’m pretty sure had something to do with having a stomach that was sore about 90% of the time. Lord, why did I never say anything? I would have these anxiety attacks that seemed to me to come out of nowhere. All of a sudden, I couldn’t control myself. My heart would be racing, I would start crying and hyperventilating, and I would think I was going to be sick. It bothered me so much that my whole demeanour changed for some time. I went from the happy, stroppy toddler to a child who didn’t smile a lot, was rather quieter and more reserved than before. My mother noted that I seemed to lose weight as well. I went from being a healthy, slightly chubby child to being rather thin, faster than could be explained by a growth spurt. I also developed permanent dark shadows under my eyes.
I struggled with this anxiety for years. However, when I got old enough to know what was happening inside my body, I identified that a health problem was underlying all this confusion. The anxiety disappeared. I strongly believe that the anxiety I struggled with was triggered by the early Dysautonomia symptoms. Because I couldn’t comprehend or explain them, they caused panic.
Despite these early signs, I was a fit kid. I did swim classes through primary, and quickly showed an aptitude for the sport. I started a competitive club in intermediate school (11 years old). The training was tough. A couple of years into this I was training 4-5 times a week for 1.5 hours, doing competitions many weekends. I should have been one of the fittest kids in my class at school. But when we hit the running track, it was a different story. For some reason, I couldn’t keep up. I ended up explaining to my mum that it felt like I couldn’t breathe when I tried to run. She took me to the Dr, suspecting something like Asthma. I tried an inhaler, but my Dr also heart a murmur.
I had my heart checked out. Everything was ‘normal’, except that my heart went so fast on the treadmill test that the nurses stopped me well before I felt like I needed to stop. I don’t even remember seeing a specialist about it. It was apparently ‘unremarkable’.
All was explained about 8 years later, after a couple of hospitalisations, when I eventually received a POTS diagnosis. Slowly I put the pieces together. Of course, what I haven’t included in this piece are the hypermobility aspects of my life, however it’s October. We’re talking about Dysautonomia this month. And to be honest the Dysautonomia was the more problematic side of things early on for me.
I really hope that by reading this, a few more people are aware that sometimes: it’s not just a fussy kid. Sometimes: if a list like mine starts piling up in a child’s life, a problem with autonomic dysfunction should be checked out. And yes, the Drs will likely have to be pushed. Please try not to minimise and ignore what your child is persistently showing you, please do not always assume its behavioral or it’s a phase that will pass. The best outcomes in Dysautonomia come with early intervention. So, learn these early signs, and pay attention. POTS is not a rare condition.
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