Keeping it inside – tips from a pro on reducing vomiting
It is hard to put into words the utter misery of having a child that is constantly being sick, especially when you don’t know why. For many years this was Cali, vomiting anywhere between one and several times daily. I always believed that there must be a reason why Cali was sick so often but it took a long time, and a lot of experimenting before I understood what was going on. In this blog I’m going to share some of what I have learnt.
Cali’s chronic vomiting began when she was eight months old. She’d been admitted into hospital with bronchiolitis, but soon after arriving started being sick and did not stop for a long couple of hours. It was suggested she must have a stomach bug as well, but I was unconvinced by this, there were no other symptoms. It was a long admission and when she was weaned back onto food she continued to be sick much more than usual, we assumed this would stop when she was totally better, but it didn’t.
And so began the wretchedness of persistent vomiting that would blight most days for years to come. At first Cali managed to continue gaining weight, but gradually the gains stuttered to a halt and the gap between the lowest centile, which she had been following, and her actual weight yawned bigger and bigger. At a time when infants are designed to be piling on weight, Cali was unable to gain at all, and for at least two years her weight hovered at 9 kilos.
Living with Cali’s inability to absorb nutrition or put on weight was like having a panic button constantly pressed inside of me. It was a clanging bell, impervious to logic, triggered by the most basic parental fear of them all, that if your child can’t tolerate food then they can’t survive. Every time Cali was sick I’d experience an array of emotions; dread, frustration, powerlessness and failure. This made me anxious, more controlling, and often angry. Cali, I’m ashamed to say, didn’t always get the comfort I would have automatically given to another child when being sick. She was sick so often and so uncomplainingly that it was easy to forget her suffering in all of it. I often found myself simultaneously full of worry for her and also furious with her, or rather her body, for not being able to do that most basic of things, take in nutrition.
The upside of having those dreadful feelings was that I became extremely motivated to find ways to stop the vomiting and applied myself to the task with all the tenacity of a well-trained hound following a scent. I read hundreds of Facebook posts, badgered every medical professional that came near us to listen to my latest theory, did plenty of research and tried a lot of things. Our approach was scientific and these were the rules: 1) Only make one change at once 2) Give that change time to bed in 3) Be wary of any outcomes that occurred when Cali was unwell or coping with another discomfort, for example, when teething. I’d strongly recommend these rules if you are facing a similar situation with your complex child.
At first, I tried to connect Cali’s vomiting to something that happened during that hospital admission. At the end of that stay she’d had two ng tubes in for one night in order to check her suitability for a gastrostomy. We pondered if she’d been damaged by this procedure, this theory was not deemed credible by the professionals. I also researched infections she could have picked up in hospital.
Then things changed and Cali stopped vomiting for a few weeks after hospital admissions, before slowly returning to her norm of several vomits a day. Stranger and stranger! We now had to conclude there was something happening in hospital that was somehow resetting her. We theorised that maybe her system benefitted from getting a proper rest whilst she was on IV fluids only. I read up on the benefits of fasting, and when things were particularly bad we’d use a food pump to slowly deliver only clear fluids to Cali for a couple of days. This had mixed success, but back then it was our first, albeit blunt, tool to help reduce vomiting.
Towards the end of Cali’s first year she started a new type of vomiting, which we called “funny turns”. Without warning she would be repeatedly sick for about half an hour before seemingly passing out for some time. I was fearful that these were epileptic fits. I knew that vomiting didn’t normally occur during a fit, but the way Cali always seemed to pass out afterwards made me think of a postictal (after a fit) state. When Cali had an EEG no unusual brain activity was picked up, but the consultant couldn’t rule it out. It was eventually labelled as “cyclic vomiting” and for a while she was treated with a medication for migraines and anti-sickness medicine.
We also started seeing a Gastroenterology consultant. Unfortunately, his enthusiasm for finding a reason, if not a cure, for Cali’s vomiting did not match mine. Whilst he facilitated various tests, including ones for allergies and intolerances, most of our consultations seemed to end with him spreading his arms wide and saying gently that, “we know children with conditions like Cali’s often have problems with increased vomiting.” I remained convinced that Cali’s vomiting had a cause more specific than “general side affect of having Edwards Syndrome” so we asked for a second opinion.
I don’t wish to rubbish the first consultant’s feeling that Cali’s vomiting was just part of her condition. There are reasons why our children are more prone to vomiting. Lower muscle tone can affect the ability to keep food down, especially when a child has an ng tube, which doesn’t allow the sphincter at the top of the stomach to close completely. Low muscle tone can also make pushing food through the digestive tract harder, which leads to slow digestion and constipation, also common causes of vomiting. I also sense that our children’s nervous systems don’t always fire up like other children’s and as a result, the very complex process of digestion might be somewhat unsynchronised. Immobility and tube feeding also have a part to play in sluggish digestion.
The new Gastroenterologist gave me nearly two hours to explain Cali’s history of vomiting. By the end of our meeting her vomits were neatly categorised into different types: vomits on awakening, vomits at the end of a feed, vomits associated with “funny turns”, vomits caused by opening her bowels and vomits caused by reflux. He also advised that we learnt to differentiate reflux from vomiting; reflux is effortless, and vomiting requires effort. This was helpful as it confirmed we were mostly dealing with vomiting and not reflux, which have distinct treatments.
Compartmentalising the different kinds of vomits made me realise that each one likely had a different cause and would need different treatments, this made the whole endeavour seem suddenly more manageable. I left the consulting room feeling hopeful.
Some factors to think about:
Reflux
Reflux is common in babies and is even more common in babies and infants with Edwards’ Syndrome, especially if they use an ng tube. There’s lots of reflux advice out there but be prepared that children with Edwards’ syndrome might need stronger medication and it might not recede at the point that standard infant reflux does. Cali has been on Lansoprazole since she was tiny and needs two doses a day spread at 12-hour intervals. Attempts at phasing this out has shown us that, at seven years old, she still suffers from reflux.
What goes in…
Food is a big subject and clearly a key one for anyone sleuthing their child’s vomit triggers. It’s not just what you give your child that matters, but also what consistency the food is, how much is given and how quickly it is given.
Formula
When children are fed via a feeding tube the default food is formula. Some children manage well on this, but others suffer from chronic vomiting, gas and/or diarrhoea. The alternative, for a tube fed child, is blended diet, but if you don’t want to go down this route then it’s important to keep exploring the great variety of formulas available until you hit on one that seems to agree with your child. For many years Cali has had a night-time feed of dilute formula delivered slowly via a food pump, this is because we simply can’t get enough calories and liquid in her during the day. After some trial and error, we settled on a powder formula (Neocate Junior).
The other thing to consider if your child is solely fed on formula is that they won’t have the same variety of friendly bacteria in their gut. The relationship between these bacteria, (the gut biome) and health is now well established, and it is possible that having inadequate gut bacteria is another reason for the poor digestive health of many tube-fed children. If your child has regular or prophylactic antibiotics this is all the more important and sadly, in Cali’s case, she now needs two low dose antibiotics a day. Both gastroenterologists that we saw advised that a probiotic should be of a good quality, something that we inadvertently tested recently when I swapped Cali’s normal probiotic (Biokult Infantis) for a cheaper one when on an economy drive. Within a couple of weeks Cali had developed raging diarrhoea which seemed only attributable to this one change. Suffice to say I had to look elsewhere to tighten the purse strings.
Blended diet
There has been a lot of controversy around blended diets and I feel fortunate that it was becoming more accepted when Cali was ready for food, and doubly lucky that Cali’s dieticians and gastroenterologists supported giving children blended diets. In case you don’t know, blended diet is giving your tube fed child normal food which is thoroughly blended so it can pass through the feeding tube.
The wonderful thing about giving your child a diet of blended food is that you can fill them with all kinds of good things that they probably wouldn’t touch if they had a choice in the matter. Cali undoubtedly gets a better spread of nutrition than my oral eating and opinionated other child. You can also tailor the diet to your child and experiment with giving more or less of a particular food group as well as choose foods that will help with constipation. After years of being a bit too zealous with the spirulina and going a bit too far with the kale I’ve settled on replicating the healthier meals I give my other daughter. So Cali has a lot of soup, mac and cheese, rice, fish and veg, scrambled egg and sweet potato. You can also experiment with thicker and thinner blends to see in one stays down better.
Compared to formula, blending food is time consuming and takes a while to get the hang of. You will also inevitably have sprays of food on your kitchen ceiling whilst you learn to fill syringes. Between you and me, I HATE blending food for Cali, I loathe her Vitamix, I detest the mess, I resent the time it takes… but I am utterly convinced that she is healthier as a result of having real food. I batch blend every six weeks and do five recipes for her main meal and two recipes for her other meal and store the results in breastmilk bags. If you don’t have the capacity to try a fully blended diet then you can always aim for one meal a day. This is what Gastroenterologist number 2 recommends, his reason is that it creates a more diverse gut biome. You can also just use smooth pouches to begin with. If you do decide to go the blended route then I strongly recommend you do some research and get some support first. It is recommended that if your child hasn’t eaten food before that you start with a small amount of one food and you wean them, just as you would any child moving from a breastmilk/formula diet onto food. If you have a pro-blended diet dietician they might help you. I learnt everything I needed to know on the Facebook Group “Blended Diet UK” which is a lovely, supportive group.
As well as diet considerations, you can also explore how much food to give and how quickly. We give Cali four small meals a day as well as her overnight formula. Even now she doesn’t seem able to tolerate more than 120mls over about 40 minutes. This has often meant there wasn’t enough time to get all her food into her during the day. For years we timed meals, had a strict regime of not moving her for half an hour after a feed and always had an alarm set so we wouldn’t be late with the next thing. The slightest disturbance to the routine and we’d not reach our target number of meals and drinks. Looking back,I can’t believe how dedicated we were, and how desperate we must have been to help Cali gain weight.
Gastric motility
How quickly the food leaves the stomach and then travels through the intestines (gastric motility) is often a factor at play with our children. This is because of such issues as; low muscle tone, lack of movement, lack of time spent upright, impaired neural coordination and, with tube feeding children, missing the initial signal to fire up the digestive system that most people activate by chewing. Poor gastric motility can lead to constipation, bloating, nausea, and vomiting.
…and back to the story
It was a eureka moment when we realised that Cali had slow stomach motility. Until then it never occurred to us that when she was sick soon after a feed she might just be too full. A positive of having a tube fed child is that you can check how much they have in their stomach. With the Gastroenterologist’s permission we started checking what was in her stomach before deciding whether to feed her or not, only proceeding when she had less than 60mls of food in her. From this we learnt that sometimes food was sitting in her stomach for hours digesting at a painfully slow rate.
I was then able to tinker with her diet and replace hard to digest foods with easier ones. I reduced protein, fat and fibre. Brown rice was out and white rice in, leafy greens were swapped for steamed courgette, wholemeal bread for whiter versions. We also tried Cali on domperidone, a drug known to help with motility (and one that sounds more like a champagne than a digestion hurrier), but we became convinced it was impacting badly on her already terrible sleep. There were weeks when Cali’s digestion seemed to virtually stop, we might be getting less vomits as we were always checking before we fed her, but we were not getting an increase in weight. I reluctantly started exploring the possibility of Cali having a jejunostomy which would allow food to bypass the stomach entirely and go straight into the gut, where we believed the motility was better.
Then, in August 2017, Cali was taken by ambulance to hospital after having what appeared to be a lengthy seizure. She’d been particularly unwell for a few days, had a temperature, which was unusual for her and her digestion seemed to have seized up altogether.
It turned out Cali had a kidney infection and what we were witnessing were febrile convulsions. This was all new territory; Cali had never had a problem with her kidneys before, she’d never really been able to spike a temperature before and we had never had an admission to hospital in the summer. Cali recovered quickly after a few days on IV antibiotics and came home again exhausted by smiling again.
As usual Cali’s return from hospital marked a period of good health, but this time when the vomits returned the penny finally dropped. I suddenly realised that the IV antibiotics that she always received in hospital for chest infections might also be nuking a second infection somewhere in her body. Over the next few months we investigated where the second infection might be: ear infections, stomach infection and finally, urine infections. Bingo! We started testing her urine regularly for infections and each time dipsticks would indicate that an infection was present. In the months following her kidney infection Cali had several more urine infections, and each time they were treated we would see a reduction in vomiting.
Eventually Cali had a series of tests to investigate her urinary system. The first test involved inserting a catheter. It soon became clear that Cali was not an easy candidate for this procedure, eventually they wheeled in a professional famed for his track record in this area, but even he struggled greatly before getting the catheter in place. The difficulties with catheterising Cali, and the outcome of the tests suddenly made sense of why Cali was having so many urine infections. As well as having an unusual shaped urethra it was discovered she had a neurogenic bladder, which means that her bladder was not emptying completely. It was also observed that her perineum was smaller than normal, making it easier for faeces to move into the urethra. All of this pointed to the fact that it was likely Cali had experienced many urine infections which had gone undetected as the only clear symptom had been the vomiting. It was also clear that receiving a broad-based antibiotic for chest infections would likely have been clearing up the urine infections at the same time.
I still feel guilty that it took us all so long to understand what was happening. I hadn’t realised that Cali’s body still had the capacity to completely surprise us. We’ll never know if urine infections were the primary cause of Cali’s vomiting, or if her lack of alertness in her early years was because she was basically unwell. Her slow motility might have been in part because she was often unwell. Since Cali was diagnosed with a neurogenic bladder she has been on a daily low dose of an antibiotic and so far, touch wood, she had not had a urine infection since.
Her vomiting started to decrease more convincingly from that time, and the cyclic vomiting seemed to disappear as well. We were now also giving her easier to digest foods, checking her stomach contents before feeding, using a formula that seemed to agree with her and using a balance of medication and foods to ensure that she was not constipated. With the sickness on the decrease weight gain slowly kicked into action. I clearly remember the joyous moment when Cali reached 10 kilos in weight, and my embarrassment at hugging the messenger of the news at school, who wasn’t so receptive to my embrace.
The era of Cali’s vomiting has left a few scars. The day I started writing this blog Cali was unexpectedly sick - voluminously, suddenly, and apparently without cause. Typical. It put me into a stink of anxiety and irritability that took a few hours to shift. Travelling back over those years again has made me appreciate how hard they were and how far we have all come. Family life is undoubtedly more relaxed now.
Still, I can’t help but worrying that writing a blog explaining how we finally stopped the thing that dominated our lives for so long, is somewhat tempting fate. So, I am not going to say that Cali’s vomiting is solved, but just that it has greatly improved. I hope this problem is behind us, but our children are nothing if they are not unpredictable. If you are going through anything similar with your child, I hope there is some untried gem shining within this blog that you can pluck and try out on your child. I really do wish you every success.