Living with a Child with Cyclical Vomiting Syndrome

Our family seems to have a knack for suffering from the more obscure of illnesses and our littlest is certainly no exception. Diagnosed with Cyclical Vomiting Syndrome, CVS for short, just before her third birthday, a condition we had never heard of before that day.

Rewind to when she was just 5 months old, and what was honestly one of the scariest days of my parenting life. Before that day, like most babies, she had brought up the odd feed and had her baby sicky moments, but, after previously having a child with severe reflux, her symptoms were minor in comparison and raised no cause for concern.

The day it all changed started as any other day. We had recently started weaning (something that has since been mentioned as a possible beginning trigger), she had been her normal happy self that morning. Nap-time arrived. I had put her down awake, she had cried briefly then gone to sleep, just like any given day. A short while later I had gone in to check on her, and found her in a pool of sick. For a few terrifying seconds I thought the worst. My heart literally stopped as I scooped her up, which thankfully woke her up and she started crying. The relief was immense, but that was only the beginning. She vomited around 10 more times that day. For a tiny, 5 month old baby, it was awful to watch. Her little body couldn’t keep a single thing down and her stomach retched until she brought up nothing but bile. We took her to the hospital where they kept her under observation until she finally held down a feed. The doctors wrote it off as a stomach bug and sent us home. We thought it was over…….how wrong we were. The next day it started all over again, and the day after that too……Our Doctor told us it was just a nasty bug and that as long as she held down at least one feed a day and was having wet nappies, not to worry about it, it would pass. And it did…….for about a week. Then it started again, this time lasting for 2 days. This time the GP blamed it on her having older siblings, saying they must have passed the stomach bug she’d been diagnosed with initially back to her again. This episode passed, then a month later, the cycle started again. She would vomit until there was nothing left. Be off colour for a day or two, then go back to normal. She continued on this cycle until she was a year old.

When she turned 1, it was time to switch her from formula milk, to cows milk. It had been theorised that formula milk could be too heavy for her, and that switching to cows milk may actually improve things…….oh how wrong that theory was. It got worse, much worse. At its peak, she would vomit for 3 days out of every week. She would get a few days of normality before the cycle would start all over again. Still the doctors told us, “It’s just a stomach bug”. By this time, we knew that they were wrong, this wasn’t normal, but without knowing about CVS at the time, we couldn’t yet connect the dots. Thinking that cows milk was a trigger, we switched her to Toddler  Formula Milk, but it made no difference.

The bouts of sickness were worse during the winter months. She would still get sick during the summer months but they were generally less severe episodes with longer breaks in between.

As she grew, other symptoms and triggers became more apparent. Bright light was a trigger. Really sunny days bothered her, bright overhead strip lights bothered her.  During an episode, movement was a problem. Going up or down stairs would set off a bout of vomiting. She would get really lethargic and just want to lie down. We continued using a pushchair with her long after we would have abandoned it with her siblings, because on bad days she just simply couldn’t walk. We didn’t know what it all meant. Numerous trips back and forth to the Doctors were met with the same reactions, we got classed as paranoid, over-protective parents that just made a big deal out of her being sick. But we knew there was more to it than that, call it parental instinct, but we just knew it was more than her ‘having a delicate tummy’.

The bouts of sickness eased a little, going from weekly to monthly, sometimes even a couple of months in between. As we weaned her further off milk, there is no doubt that her symptoms lessened, yet they never went away. She has since been tested for a milk/lactose intolerance but the results came back clear.

Just before her third birthday, she had the worst bout of vomiting we had seen so far. She couldn’t even swallow her own saliva without it making her sick. Worried, we took her back to the hospital. Initially they were just going to send her home again, with yet another ‘stomach bug’ diagnosis, then she vomited in front of the doctor and he agreed this wasn’t a normal sickness. She was admitted. By this point she hadn’t held anything down, not even a sip of water, all day, it was now 7 o’clock at night. She was suffering from dehydration and placed on a drip. What followed was a restless night. The drip she was on bleeped every hour throughout the night. Being nearly 3 years old and a fidget, she kept getting tangled up in the drip line. But as the night wore on, the sickness eased, and by morning, it had stopped and she was able to hold down liquids again.

On admission to hospital, she had been given some routine blood tests. The results of these came back, and showed that she had really small blood cells. She was anaemic but the doctors couldn’t tell if she was anaemic because she kept vomiting or if the anaemia was making her ill. The nurses also noticed when taking her blood that she took longer to stop bleeding than was ‘normal’, and asked if she bruised easily, which she did. It was something I hadn’t really paid much thought to before, but thinking about it, she did bruise really easily. We were told then that the bruising and slower blood clotting was a result of the small blood cells. She was subsequently tested for Haemophilia, which thankfully came back clear, but this was the start of our concerns being taken seriously.

Before being discharged, a Consultant came to see her. After going over all of her history, he had recognised the symptoms, we finally got a diagnosis. Cyclical Vomiting Syndrome.

With a name, came answers. Sufferers of CVS are often Photo-sensitive to bright light, this triggers migraines which in turn trigger vomiting. It all fit.

But sadly, there is no cure. CVS is most common in children and often they out-grow it, for others the condition morphs into migraines which can last for a while, come and go, or last for life. There are hugely varying degrees of this condition.

Due to her being photo-sensitive, we were advised that it was important for her to have regular checks of her eyes. She now has check-up’s at the Opticians every six months.

Apart from being given a diagnosis and some basic advice on managing her condition, she hasn’t received any ongoing treatment. We have largely learnt how to deal with the episodes when they happen. I always carry sunglasses for her in case she needs them, we still take the pushchair out when necessary, we limit her milk intake, avoid places with bright lights, and keep her in the shade on really sunny days. We have learnt that during an episode, plans need to be cancelled. Yes it can be upsetting but keeping her comfortable is more important.

Fast forward back to present day, and starting school proved to be yet another issue for us. Despite explaining her condition to the school and teachers on numerous occasions, every time she is sick, we get the standard “oh it must be a bug, she needs to be off for 48hrs” line. To be honest, it’s driving us mad. No, it’s not a bug. No, she’s not contagious. No, it’s not just something she’s eaten.

While we’re aware the condition is rare, we ourselves had never heard of it before the day she was diagnosed, it is upsetting that still now, even 3 years after her initial diagnosis, we still get looked at like we’re making it all up. Trying to explain a seemingly invisible, little known condition to family, friends, school friends parents, teachers and even other doctors, when we still know so little about it ourselves, is incredibly difficult. And that is the reason for this blog post. I want to raise awareness of this condition. To show other sufferers that they are not alone. To explain to those who struggle to understand that she’s not just ‘a sickly child’. If you’ve got this far, then I thank you for hearing our story and ask that you could possibly share it? Let’s get CVS recognised so that sufferers and their families need not suffer in silence.

Thank you xx