Feeding Ben Food

Ben can’t eat or drink. He tried really hard to learn and we all spent a lot of time on it for 18 months but by age two he really wasn’t enjoying it. He got annoyed at the sight of a spoon and the amount he was eating was tailing off.

Drinking had been a problem right from the beginning. His dysphagia (difficulty swallowing) meant he found sucking from a bottle really difficult – if the automatic reflex to co-ordinate sucking, swallowing and breathing is messed up, it is incredibly hard to learn. The human anatomy at the back of the throat is an awful design and Ben just couldn’t get the hang of it. We spent hours trying to feed him by bottle, and later by cup but it was never enough and he was discharged from hospital with a nasogastric tube which we put milk through (the tube went up through his nose and then down in to his tummy).

At just over four months we started weaning in the hope that eating thicker textures would be easier than drinking and be more likely to stay down in his tummy. This was also hard work for Ben and he did incredibly well given the difficulties but he never got close to eating enough food to grow. Meanwhile he had constant and painful gastro-oesophageal reflux.

So at six months old Ben had a PEG inserted in to his tummy, allowing us to give milk through a tube straight in to his stomach. When he was two this was changed to a button.

If you start out from the position that you have a small child and they have to have a tube inserted in to their tummy, which means even when you have given them a bath and they are lying on a towel all perfect and clean they will still have a tube dangling from their abdomen, this might be upsetting. Which it was in some ways. But if you start from the position that your child is unable to feed and you have spent six months putting milk through a tube in their nose which everyone can see, and keeps falling off/out, and their cheek under the sticky plaster is red raw, and when the tube needs replacing you have to get someone (sometimes your poor neighbour) to bind your screaming child in a towel and hold them down while you push a tube up their nose and down their throat, and every time you feed them you have to do a pH test to check the tube is still in their tummy and you aren’t about to pour milk in to their lungs… if you find yourself in that position, then a permanent tube in their tummy seems like a great idea.

James and I have fond memories of a holiday in Scotland when Ben was 18 months old when he could eat half a yoghurt pot for lunch. That was the highpoint of his eating and once we returned to London the combination of physical difficulty and chronic reflux meant he was less and less keen to eat food. To be honest, we were all weary. There are only so many hours you can spend mixing various mashed and pureed foods with baby rice and spooning them into an unwilling child before you feel there are better ways to spend time. Eventually we got to the point of not offering Ben oral food at all.

That gastrostomy tube is a lifeline – it is the reason that Ben is thriving and growing. It represents a choice to spend time reading books and enjoying ourselves rather than trying for hours to eat enough food and drink enough fluid and the inevitable chest infections that would result.

So for the first three years of his life, Ben was largely fed milk – various hypoallergenic, cows-milk-free and enhanced formulas that began to arrive in big boxes every month. As far as dieticians and general medical opinion is concerned, once a child has a tube they are then fed special milk. So on the one hand you have a typical four year old who eats some cereal, a banana, some chicken and maybe a cake. On the other hand you have a tube-fed four year old who is supposed to have 240ml Nutrini Energy milk for breakfast, 240ml Nutrini Energy milk for lunch and 240ml Nutrini Energy milk for supper.

A few years ago I came across ‘blended diet‘ (BD) which essentially means pureeing food with enough liquid to be able to push it through the gastrostomy tube. I am a natural law-abider (the kind of person who feels uncomfortable going in to a pub to use the loo if I haven’t bought a drink, who scrupulously observes any and every queue) and so having found an academic journal article that suggested children had experienced less reflux and eaten more while being fed puree rather than milk, I approached each of our doctors and asked their view before I started. They were generally a bit bemused but didn’t tell me not to. We started putting Ella’s Kitchen baby food pouches through Ben’s gastrostomy tube.

It’s not a complicated idea – we followed principles similar to when you are weaning a baby. We gradually made more complicated purees and replaced quantities of milk for boluses of puree. Our dietician made clear that she could not advocate this type of feeding (she is prevented from doing so by her professional organisation) but was happy to discuss principles with me. She analysed our recipes to see how much protein, carbs etc Ben was getting and suggested supplements.


Ben is now fed entirely puree. Instead of being pumped full of high calorie milk with a 12-month shelf life he is fed a bespoke recipe of roast chicken, homemade chicken stock, tahini and avocado whizzed up in a high-speed, super-powered (obscenely expensive) blender. Since we have been doing this he vomits less, has fewer reflux symptoms and has been putting on weight (albeit slowly, but that’s always been the case). We add calorie and vitamin supplements to the blends. Doctors comment on how well he looks and how sensible an idea this is.

Through this process, I have rediscovered some of the mothering instinct that should be part of feeding your child. There is no pleasure in hooking up milk to a pump, but there is real and tangible satisfaction to be gained in roasting a chicken, making stock and feeding it to your child. There is enormous joy to be found in buying blueberries in the morning and giving them to your child in the afternoon; to seeing your child grow as a result of the food you have made with your hands even if it doesn’t arrive in their tummy via their mouth.

Health professionals (mainly dieticians and nurses) are concerned about this method of feeding – they are apparently worried the tube will get blocked (this has never happened to us), that there are problems with food hygiene (which the rest of the population manages when feeding their kids). They are uncomfortable that you can’t be sure how many calories are in blended foods. These concerns are such that our nearest respite centre refuses to give children puree via gastrostomy, and therefore Ben can’t stay there without us being there to feed him (which with the best will in the world, is not exactly respite).

It seems to me that a model of care where children automatically have long-life milk for every meal is better suited to those analysing calorie requirements and setting up pumps than it is to the recipient. I resent the idea that most parents feed their children what they want, with some public health encouragement to maximise vegetables, but us feeding Ben kale and quinoa rather than milk full of maltodextrin is somehow rogue. The world is upside-down when goody-two-shoes-Jess is seen as a rebel.

We all make parenting decisions for our kids. Our choice is to feed our son actual food.


Big Book of Bad Things

To say Ben has a mixed relationship with theatre would be generous. There are numerous examples of him hating theatrical outings and our success ratio is pitifully low.

We have had reasonable success with productions by Oily Cart, who produce theatre specifically for disabled children which is inventive, imaginative and brilliant. They often adapt their shows for mainstream audiences, and even when we have taken Ben to these more hectic performances he has enjoyed them (or at least bits!).

In March this year I took Ben to a production of Not Now, Bernard at the Unicorn Theatre. We had been to productions there before – it is a lovely theatre with accommodating staff. We had a wheelchair seat at the front of the theatre space – right next to the stage with its bright lights and in front of about 60 excitable (noisy) children.

Ben struggles with this kind of thing – he is nervous in unfamiliar environments with bright lights. He still has a startle reflex so loud noises make him physically jump. The sensory overload of unexpected music and people leaping about onstage can be a bit much. And so it proved: the show started, a man came on to the stage just in front of us and there were some loud noises and that was it – Ben in tears and me unable to bring him back from the brink. I decided we had to leave.

Unfortunately our proximity to the ‘stage’ (white painted floor) meant this involved me carrying a long, sobbing 4 year old while carrying two coats and a bag – and pushing a wheelchair ON to the stage thereby causing maximum fuss and creating some inadvertent audience participation. We had lasted five minutes in the theatre and then went home. During a tearful phone call with my husband in the car, we agreed I wouldn’t take Ben to the theatre on my own again.

Of course one solution would be to not take Ben to the theatre, but this seems too depressing a conclusion. It would be to give up on something that I though I would do with my children. Broadening horizons and facilitating new experiences is stressful and often a disaster, but we have to keep trying. Ben loves stories and melodramatic performance in familiar places so there must be shows he would enjoy. Surely!

One of Ben’s most favourite things to do is to watch videos on YouTube of Michael Rosen reading poems and stories from his books. He’s enjoyed these videos for over a year and we must be responsible for hundreds, if not thousands, of views. He particularly likes this one about bending a toothbrush which is from the book Michael Rosen’s Big Book of Bad Things. There are many reasons why one might be a fan of Rosen, he has written loads of books. We have a family tradition of singing Ben a song based on his book, Little Rabbit Foo Foo, which last Christmas was staged as a play by his granny and uncle.

I found out that Michael Rosen would be reading/performing from this book in London. I booked for us to go.

We were nervous and excited, really hoping Ben would enjoy it but ready for the moment when he lost it halfway through and we all had to leave. In order to maximise the likelihood of success, we arranged to drop Max off with his uncle down the road and spent a lot of time telling Ben where we were going. So much in fact, that on anyone saying ‘Big Book of …’ Max would shout, ‘BAD THINGS!’ at us all. Ben thought that was amusing.

Our seats were right at the back of theatre (good) and at some distance from the stage (good) and we were let in to the auditorium first so we watched everyone else come in (mainly kids older than Ben) and Ben had time to get used to his surroundings. James read him poems from the book while we were waiting.

img_8365Then Michael Rosen came on stage. As he spoke loudly into microphone for the first time, we held our breath. But Ben was fine. More than fine, in fact. He smiled, he listened. Michael (is that too familiar?) told lots of stories – many with loud noises and audience participation – and Ben was happy. James and I sat on tenterhooks, laughing at the jokes but poised for the moment that Ben wasn’t enjoying himself any more. But it never came. Ben just watched over an hour of performance – smiling a lot, giggling occasionally, totally focused for 60 minutes. It was totally bloody brilliant. The boy loves a story, and Michael Rosen is really good at stories. And apparently if Michael Rosen makes sudden, startling noises in a theatre, that’s okay.

When it finished we queued up with loads of other kids to get our book signed. In the crush of us all pursuing the author, Michael walked past us and stopped to say hello to Ben. As we queued, Ben was squashed between loads of older kids and he was unperturbed and patient (occasionally accidentally kicking some kids but that’s inevitable when you can’t really control your legs; they were very tolerant). Our book was signed: ‘Michael Rosen was here’, and off we went. Everyone on Facebook was jealous.


So that’s what it’s like to take your child to the theatre and them enjoy it. It’s fun! Ben loves hearing language and words and rhymes. I am fascinated by how that really works – when a typical child learns to speak they learn the sound of letters by saying them. How does a child who can’t speak learn sounds? Who knows. But for now, we’ll do our best to stalk Michael Rosen.

A tale of two flu vaccines

Bridget Christie is a comedian that I love and earlier this year we went to her show about feminism, ‘A Bic For Her’. She did a bit about how people criticise feminists for having no sense of humour, but that actually the lack of equality for women is really serious and no-one ever says Amnesty International isn’t funny enough; it’s okay to be serious about stuff sometimes. Ironic that Bridget was being funny about feminists not being funny, but anyway…. I love to laugh but sometimes stuff is just annoying and there’s not much to find amusing. This post is a bit negative. I’ll chirp up next week (hopefully).

[Aside: I wrote Bridget Christie an email afterwards and she replied saying ‘it made me laugh SO MUCH’ which made really very, very happy. If you know me in real life, I will have told you this story. I tell everyone this story.]

The NHS is offering the nasal flu vaccine (Fluenz) to all 2 year olds this year. I made an appointment for Max to see the nurse at our GP surgery, she sprayed it up his nostrils, he said it tickled, we left. Done.

Ben has a flu vaccine every winter because he is vulnerable, even minor illnesses will affect him badly and it takes him a long time to recover from bugs. Ben starts vomiting at the first hint of a fever, he struggles to manage secretions at the back of his nose and throat and loses weight quickly. The vaccine won’t necessarily stop Ben getting flu, but it will hopefully reduce how sick he gets with it.

So I made an appointment for Ben to see the nurse at our GP surgery.

She looked at his computer record and noted he was allergic to eggs. This is problematic because Fluenz is made using egg. I explained that he had Fluenz last year and had no reaction, that he has never had a reaction to egg, but has routine skin prick tests because he had a cows milk protein allergy when he was younger. According to these tests he is mildly allergic to egg white.

The nurse phoned a GP in the practice (unfamiliar to me) who was unwilling to agree to Ben receiving the vaccine right then so I suggested I get in touch with Ben’s allergy consultant (based at a hospital) to see if she could advise. Off we went.

I had an email exchange with the allergy consultant and she agreed to write a letter to our GP saying that in her view there was no reason for Ben not to have Fluenz this year since he had it last year with no reaction. The letter took a couple of weeks to arrive. The consultant offered to give the vaccine to Ben in hospital but that would mean Ben missing school.

In the meantime I got a letter from Ben’s school saying nurses would be visiting the school on Friday to give children the flu vaccine. Brilliant news! A rare opportunity for things to come to us rather than us trundling around to various clinics! I filled in the consent form explaining the egg/Fluenz issue and then forwarded the letter from the consultant when it arrived.

Yesterday the nurse in charge of the school vaccination programme called me. I launched in to a historical monologue involving much mention of eggs, noses and doctors, concluding with the fact that surely, therefore, Ben can go ahead and have Fluenz on Friday.

Apparently not. The nurses going in to schools are unable to give the vaccine to any children with an egg allergy, mild or not. She suggested I make an appointment with our GP (not a nurse) to discuss it and see if the GP is willing to approve Ben having the vaccine.

This lady was friendly, chatty, warm. Everyone we have interacted with about this so far has been helpful within their realm of power. Obviously they are being cautious because it would be awful for a child to have a serious reaction to the vaccine because they’re allergic to egg.

But I found myself crying on the phone to this nurse, trying to talk as little as possible so she didn’t realise, because why do these things always have to be so bloody time consuming? Why are our lives filled which such a huge amount of crap, involving multiple calls and trips, when time is already limited? It’s no-one’s fault but it’s exhausting.

When I called the GP surgery to explain this saga, the receptionist was great and found us an appointment later this week after school with a GP who I have known for over twenty years, who can give the vaccine himself if he’s happy to proceed. I am hopeful about that being the end of it. I saw this GP last year when I needed a ‘Fit to Fly’ letter for Ben. I had written the letter in advance to minimise his workload – the GP took this letter from me, scanned it with some magical software which converted it to text, put in on his letterhead, printed and signed it within five minutes. Anyone who has interacted with NHS bureaucracy will know that is miraculous!