Toby was born a healthy but small (ish) 6lb5oz, within a few months he had developed terrible colic. Every afternoon by about 3.30pm screaming and discomfort would start and he would be inconsolable until he fell asleep exhausted at about 9.30pm, (shortly followed by us)! This went on for some months.
At a year he had his MMR and 24 hours later horrendous vomiting began. We assumed it was a reaction to the MMR although the professionals told us it wasn’t a usual reaction. He got better after 48 hours and we thought no more about it. A few months later the sickness began again. The pattern followed again and again over the next 6 months. We ended up in hospital three times. An adult accident and emergency ward is a soul-destroying place to be with a baby in the middle of the night. He was checked for meningitis, and on one occasion prepped for a drip, although the vomiting ceased just in time. We were instructed in how to drip-feed him fluids through a syringe, 5 mls every 5 mins, and we were told it was a stomach upset or tonsillitis. We were given anti-biotics which gave him terrible stomach discomfort and diarrhea, which extended the agony for a further week. The drip feed fluids were torture for him as he was desperately thirsty but he couldn’t hold fluids down. We now know that the thirst is a symptom as sufferers try to dilute the acid.
We asked the doctors advice, he was sympathetic but said “children do get stomach upsets”. I returned home determined to clean harder, sterilise more, disinfect everything and wash his hands meticulously. Of course it made no difference. Friends would go on holiday, I remember asking how they coped when their child got sick every few weeks, and they said, “well they don’t get sick” and I started to suspect something really was not quite normal.
Son number 2 was born when Toby was 2 years old. This baby had severe reflux, and for the following year we were catching vomit from one child or another almost constantly! But, whilst Daniel's vomiting settled down, Toby’s continued. Comparing the two children made me realise once again that Toby’s situation was not normal. A further piece of the jigsaw was the realisation that his sickness was never catching; not only had we adults never caught it, but neither had the new baby, despite on several occasions being in the full firing line! We also noticed that Toby was severely travel sick. Travel motion would frequently bring on vomiting, even on a relatively short journey, and a few full episodes could be linked to longer journeys. We became expert at removing and washing the covers on child car seats, (some of my friends have never once done this!) and we often travelled with a spare seat for when the original was unusable. Episodes could also be linked to stressful events such as being reprimanded, or even swimming lessons when he was uncomfortable about putting his head in the water.
When Toby came out of an episode it was almost instantaneous; he could go from sick bed to bouncing up and down shouting "it’s grass hopper day, you have to jump like a grass hopper” at the click of a finger, but you never knew if this would take 24 hours or 72 hours, although a general pattern began to emerge. Very rarely it would last almost a week. We didn’t know whether to feed him or not, he always asked for food during an episode but it would always come straight back. We began to feed him fromage frais by the teaspoon every half hour to try and get something inside him without overloading his system.
At about 4 years old I returned to the doctor to re-explain the problem and ask for help. The doctor took us seriously and mentioned Cyclical Vomiting Syndrome but said he could not diagnose it and he would refer us to a paediatrician. He explained that other problems had to be ruled out first. I went home and researched the condition and there was a “light bulb” moment. He was almost a textbook case.
· He had periods of being 120% fit and healthy between episodes, bouncing of the ceilings.
· An episode produced dark rings under his eyes and his skin went opaque.
· There was intense yawning and tiredness before an episode; in fact I became able to predict an episode by one yawn in the morning, and dark rings under his eyes.
· Nineteen times out of twenty his episodes would start between 3.00pm and 5.00pm. The exceptions could be traced back to a traumatic event; a fall or major distress.
· Most episodes could be identified as coinciding with a common cold, cough or throat infection. Other triggers were stress (the distress caused by an ordinary hair cut was sufficient).
· There is migraine in the family, his paternal grandfather.
· He was excessively thirsty during an episode, only to return a water he’d drunk.
· The vomiting was non contagious.
The effect on our family when Toby was at his worst was considerable. No one in the house slept for the duration of the episode, he would scream every 30 minutes or so whilst vomiting through the night. The sickness was excruciating painful for him, and his character would change during episodes and would become (understandably) difficult and unpleasant at times. If mummy was with him he’d want daddy, and vice versa; basically he wanted to feel better and assumed if whoever was with him couldn’t help then surly someone different could. As he got older he would scream, “somebody help me” as he vomited; it was heartbreaking. His two year old brother became very accustomed to his episodes, accepted them and did not bat an eyelid when the vomiting started; I didn’t want the vomiting to become normal behaviour, but it did. I couldn’t work, there was no way I could hold down a job and need to take three days off every two weeks. Who would understand "mad vomiting disease" (as I called it in my head). He was frequently missing pre-school, parties and special events. We didn’t book holidays, as we were afraid we’d have to cancel, or he’d be sick whilst away. We never used his passport we’d so excitedly applied for two weeks after he was born. We didn’t travel to relatives due to vomiting fear. I began to “think” like the mother of a sick child, and his episodes dominated our lives. We became more and more concerned about what would happen when he started in reception, and how much school he’d miss.
We considered it an achievement just to get him to the starting line, of an event or activity. We were completely dependent on my mother to take the baby when Toby was ill, as it was so difficult to look after them both during an episode. I resented his illness (not him) for the days I missed with number two son, but Daniel would come bounding back from mum's like an over excited puppy, and those good moments after a day of misery would get me through. Many of our friends and family did not realise what we were going through. Symptoms seemed random, there was no obvious diagnosis and it took us a while to identify a pattern. Those who were close to us began to realise the pressure we were under; the "not knowing" mainly, but also the absolutely and utterly exhausting episodes when we watched our beautiful beautiful little man in pain and distress, and we were not able to ease it. The long nights sitting up with him, trying to catch the sick, nights when there was literally no point in going to sleep. We were physically and mentally exhausted and filled with despair.
His episodes cost us an absolute fortune in die-cast Disney Cars, as we started a routine of giving him a treat for enduring each episode, it was in fact I think all that got him through some of them. We tried cranial osteopathy but there was no real progress, if anything his attacks were perhaps more frequent albeit very slightly shorter in length.
It was to be several months before we saw the paediatrician. They recommended a barium swallow, but after researching this I went back to the doctor to express my concern that he would physically be able to do this, with his general difficulty eating and swallowing, especially anything unusual. The doctor agreed and sent us for a stomach ultrasound instead and we were advised it was normal. Several months later we saw another paediatrician, it was a day after one of his episodes. This doctor mentioned stomach migraine, amongst other things (such as tumour) and referred us to a gastroenterologist, and also for an EEG, but said it would be some time before we’d get to see the gastro, and we wouldn’t get to see him (the paediatrician) again for another 6 months. Tears welled and I sat there an angry, emotional blubbering wreck. He said “I can see you’re very emotional about it”, (talk about an understatement!), and I couldn’t control the tears of despair for my boy who continued to suffer. The specialist said, “never mind, you’ve had your episode for this week”, and I left the consultation room unable to speak with tears of despair and anger.
After a wait of another couple of months we got a date for the EEG. They were good with Toby, it was at a children’s hospital, but it was still a traumatic event for him to go through, and a shock for us to see him with electrodes attached to his head. The seriousness of the situation and possible diagnosis started to dawn on us. Professionals had started to mutter the word "tumour" under their breath. It was an anxious morning at the hospital, and during the test they showed him flashing lights very close up to his face. We returned home and 24 hours later he suffered his first and only proper migraine. He wanted a dark room, quiet, and he slept all day, albeit fretfully. He was sick once but it wasn’t his normal vomiting experience, it seemed to be “incidental” vomiting. The migraine lasted 12 hours, but he took some time to get back to normal. To this date we have not managed to find anyone with the results of the EEG test.
When we heard nothing for a few more months, I pestered our doctor to refer us to a children’s migraine specialist, in fact I demanded it, having found on the web that we were within our rights to do so, and we seemed to be getting nowhere. We were putting my son through all sorts of tests and not actually managing to influence his episodes at all. He was up to fortnightly episodes over the winter, many of them clearly triggered by colds, coughs and the normal winter ailments. No sooner had he recovered from one session when another would begin.
Our doctor referred us to St George's Tooting, although in the event this appointment never took place. He also recommended a CT Scan so that relevant results would be available for seeing the neurologist at St Georges. The information sent about the CT scan mentioned nothing of dangers, but when I researched it on the Internet there was much debate about the radiation risk for children during a CT scan. We wanted to help Toby but not at “all costs”. I was convinced he had stomach migraine and did not want to risk cancer, for something which I believed was not life threatening. We were in turmoil, but meanwhile an appointment came through with the gastroenterologist, for the day before the CT scan. I was not expecting any kind of a result from this appointment as I suspected a gastro would be looking further into the stomach and digestion side of vomiting, and we suspected it was migrainous in origin. How wrong could I have been!
We arrived in Dr S K Chong’s appointment room in April 2011 and he took a full history. I explained my fears about a CT Scan, he advised that if by the end of the appointment he considered we needed a CT Scan then we must go, but that he would do an examination and see what he thought. Ten minutes later Dr Chong said, “I think we can cancel the CT scan. I think he’s got something called Cyclical Vomiting Syndrome” and then he said the magic words which once again reduced me to tears but this time tears of relief; “and it can be treated!”
Toby was put on Proprananol (to try and prevent attacks) and Buccastem 3mg (to be used during attacks to stop vomiting). We were given the next available appointment for follow up: Jan 2012, 8 months later! Toby immediately went from fortnightly attacks to a clear 70 days. He then suffered vomiting but we are not 100% sure it was his normal episode rather then the stomach upset the rest of the family endured 24 hours later. The Buccastem had no effect which points to a stomach upset. Two weeks later he had another proper episode and the Buccastem did we think make it much milder. And at the time of writing that’s where we are, counting the days again, crossing them off the calendar and hoping the gaps grow further and further apart. We know there is no magic wand and we can’t stop all the episodes, but I’m hoping we may be able to tweak his current treatment to gain further improvements. We kiss the bottle of Proprananol every day, three times a day. It has revolutionised our lives. We are realistic but hopeful for the future. I want to do all I can to raise awareness of this Syndrome, as many many people go undiagnosed.
