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E028 – the success story

When we started this new chapter in M’s life 10 weeks ago, we approached it with the attitude of “hope for the best, but prepare for the worst”. We hoped that the move to an elemental diet, consisting of 1500mls of E028 each day, would bring some much-needed relief to his bowel and body and that, from that recuperation would come a way forward that would improve M’s quality of life. And whilst we were well prepared that there was a chance it might not work; that it might not bring the recovery M desperately needed and that we might have to look to even more extreme measures to reach our end goal of improved health; that wasn’t a prospect we were prepared to spend too much time on, yet. It was far more important to be positive about the route we had chosen, which wasn’t an easy choice to make and had its challenges from the start: be they passing the NG-tube at GOSH or figuring out our new routine at home.

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Despite the roadblocks thrown in our path, we’ve kept plodding on, negotiating our way skilfully around the inevitable melt-downs, tantrums and even those tempers that lead to a tube being pulled out accidentally. We’ve all learned valuable lessons – don’t storm off in a temper following a sibling argument leaving your pump behind being a key one for M – and we’ve survived as a family and, dare I say it, grown stronger as one too. We have laughed, cried and got angry together. We’ve used that laughter to overcome the depths of despair and we’ve focussed on the important things in life. Mike and I have long been a team, since the disastrous surgery on my left eye for diabetic retinopathy 17 years ago just weeks after Mike had moved to the UK and before we were even married. We may not always see eye to eye, but we have grown together and take turns in being the strong one when the other is feeling weighed down by the world. Now we have 2 children who are learning those same lessons and this experience has shown me just how amazingly strong our children are. They’ve coped with all that life has thrown at them and whilst they may have been knocked down occasionally, they’ve learned to pick themselves up, to brush themselves off and to keep going along their paths. The last 10 weeks have seen them grow in their empathy for others and they too have taken turns in being the strong one when faced with adversity.

Courtesy of artiwards.com

The best news of all is that we now know that every exhausted step has been worth it and I’m thrilled to be able to share that, for M, the E028 has been his success story. Within days of the switch to a food-free diet, the near constant diarrhoea that has been the bane of the last 9 years of our lives stopped. Just like that. No magic potions, no magic wands, no tricks and, so far, no looking back. M has become the fun-loving, caring, well-behaved little boy we all knew was hiding somewhere within himself. His joie de vivre has returned and his humorous outlook on life is much more evident. As each day passes, we are slowly and surely making more and more progress and his confidence has grown as evidenced by his abandonment of his daytime reliance on pull-ups for the first time in a year. It’s not been a perfect cure by any stretch of the imagination and his weight is once again giving us, and the medics, cause for concern, but it’s a massive step, a giant leap in the right direction. We are lucky that this proved to be the way forward for M and we are truly grateful for that as we know so many other families who have not found it to be the answer to their health problems and are still battling on.

Meanwhile, the next step is the big one for us: food reintroduction. We need to work on getting food back into M’s diet without upsetting this balance that he has found right now. There’s a “sort-of” plan from the dietitians about how we go about trialling each food with M, but for the most part it’s going to be driven by us. Having finally got my lad to the point where “I feel better Mummy, my tummy’s less grumbly and I just feel…well…feel so much better in myself“, I refuse to be hurried and I’m going to protect this new sense of well-being with all my strength and determination.

Pump action

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Having sussed making the elemental feeds, and NGT management having quickly become second nature, our final challenge was to learn all about the small piece of equipment that is going to become a key member of our household for the next few months – the pump. M has the Flocare Infinity pump from Nutricia, which has proved to be easy to handle and quick to program. I was trained in just 40 minutes whilst M was still admitted at GOSH and even though it all felt rushed, it was actually all I needed and I was just about confident enough to go home with him 2 days later. Our excellent Nutricia nurse, from their local community nursing team, came out to train Mike the day after M was discharged and she has also held a training session at school to ensure key members of staff are up to speed with what they need to do during the school day.

The set-up is easy. The first thing we have to do is set the volume of the feed – either 1000mls or 500mls for M – and the rate in ml/h, which we set to 150 ml/h. The pump retains the information from the previous feed, so it is important to check that these 2 figures have been set correctly for the feed you’re giving. I then press the “info” button, which tells me the exact dosage that was given to M in his previous feed and clear this number from the pump’s memory. This records how much of the required volume has been given since the pump was started, so if you don’t take care to delete the previous information, you could find yourself giving a lot less than the required amount.

Courtesy of http://www.nutriciaflocare.com

The pump is then attached to the feed bottle via a feeding kit, which is a length of tube that joins the bottle to the NGT via the pump itself. We were provided with a small plastic stand, which holds the pump at the bottom with the bottle hanging upside down above it, firmly strapped in place. The feeding kit is attached to the top of the bottle, threaded around the pump stand, carefully avoiding getting it trapped between pump and stand, and then looped around the mechanism inside the pump. Before connecting the loose length of the feeding kit to the NGT. you need to fill the entire length of the feeding kit tube with the feed to make sure you’re not pumping air into your child. We were shown to do this using the “fill set” button, which runs at the fastest rate possible and takes seconds to fill up. Once this is done, it’s simply a case of attaching NGT to feeding kit tube and pressing start. All being well, the feed is now underway and, in an ideal world, you can leave the pump alone until the feed is finished.

However, reality is very different and you will quickly become attuned to the beeping of the pump alarm. It can and will beep for any number of reasons: there’s air in the tube, the tube has become kinked or blocked on the way into the pump mechanism, the tube between the pump and your child’s NGT has been kinked/blocked/sat on/folded tightly between your child’s fingers such that the formula has no place to go or sometimes, just because. Sometimes the alarm is easy to resolve, simply a case of stopping the pump, removing the air/blockage/kink and restarting; but sometimes no amount of jiggling wires, shaking formula bottles or removing everything from the bag and the stand will stop that alarm sounding every 5 minutes or less. We’ve even tried that old IT support favourite of switching it off and then on again and have had limited success in silencing the beeping for more than 5 minutes. Both G and M know how to switch the alarm off, but both are guilty of occasionally forgetting to make note of what fault featured on the digital display, leaving it to my superior Mummy detective skills to work out exactly what might have caused the problem that time round. Nevertheless, the odd mad beeping episode aside, the pump generally does what it should and copes in an admirable fashion with being bounced around on M’s back for 10 hours a day.

Courtesy of minionlovers.weebly.com

So this little purple pump has become our new best friend. Just like a favourite fashion accessory, we rarely leave the house without it or the trusty back-pack. M can do almost everything whilst wearing it and has become adept in the art of adapting to its very presence in his everyday routine. And whilst it is ever-present, we’ve learnt to have a laugh and have attributed it with its very own personality. Some of the lovely FABED family shared that naming the pump helped make the whole experience easier and more fun for their child and one Mum even said that the pump reminded them of a minion. This latter idea made all of us smile because we knew instantly what she was referring to: the incessant beeping of the alarm which is hard to distinguish from the “Bee-do bee-do” heard from the Fireman minion who helps put out Gru’s office fire. Of course, even though M’s pump bears more resemblance to one of the evil purple minions from Despicable Me 2, bent on a path of destruction, it’s hard work and support in providing M with the means to have the nutrition he needs is far more comparable to their loveable yellow counterparts.

Disclaimer: I am not a medical expert and this blog does not constitute medical advice. I have detailed how we have been taught to run M’s pump by the professionals involved in his care. Please note that any questions concerning a feeding pump and the associated kit should always be directed to your medical team.

A day in the life of my tube-fed child

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Ever wondered how having a tube impacts on everyday life? Here’s a little insight into a typical day in the life of my tube-fed child:

6am – 8am – Whilst we try to leave M sleeping as late as possible, our day starts much earlier. Mike’s alarm sounds at 6am and then follows a perfectly honed routine of taking M’s 1000mls feed out of the fridge, warming it in a bowl of boiling water, aspirating his tube (hopefully with as few interventions as possible), fitting the bottle, feeding kit and pump together and then starting the feed itself at as close to 6.30am as can be managed. Allowing M to continue to snooze for another hour or so, with his pump fully supported and protected in his bed and the tube taped securely to his back to avoid accidents, is necessary for all our sanity, not least because he still hasn’t mastered falling asleep much before 11pm each night. Once M’s feed is started, it’s the turn of the rest of us to get up and make sure we’re washed, dressed and eating breakfast before I wake M at 8am.

8am – 8.30am – This 30-minutes window is dedicated to M – getting him up, washed and into his school uniform, whilst negotiating his tube and the pump without too much interruption to the feed going in. M is evidently a natural contortionist and has not only worked out how to thread his pump and tube through the neck of his clothes whilst still attached, but also how to do it the right way round – no mean feat for a child with dyspraxia and a challenge that has been known to flummox this Mummy more than once. However, on school mornings I take the easier option of stopping his pump for 5 minutes and disconnecting his tube to allow him freedom of movement and giving me time to put the pump-stand securely into his back-pack.

8.30am – 9.30am – Pump attached and back-pack secured ready for school, we head out of the door and race off to meet up with the walking bus to get G and M to school on time. Depending on the day, we have to make sure we have the correct selection of bags and other extraneous items with us – school bag, packed lunch for G, water bottles for both, cello or clarinet plus music, PE kits, swimming bag, my packed lunch, my “M” bag (containing spare NG-tube, spare feeding kits, pH strips, 60mls syringe, cooled water for the flush, spare tape and his lunch-time medicine), the 500mls feed for the days when my Mum picks up from school, handbag, office keys, house keys and car keys; oh and mobile phone, mustn’t forget the all important mobile phone! Once at school, G and M go their separate ways with their friends, I pass on any useful information to key members of staff and then head off back to my car for the 5-minute commute to my office.

9.30am – 1.30pm – Fingers crossed this 4-hour slot should be a quiet one. Whilst I’m busy working away in my office and partaking in the occasional cup of tea, M is enjoying a morning at school with his backpack firmly attached to his back at all times. We’ve worked with the school to make some adaptations to allow him to participate fully in all lessons and he’s finally garnered the confidence to run around with his friends at play-time. He will sometimes request a break from the pump if his tummy starts to ache and the school have been trained to know how to switch his feeds and the pump on and off. This 1000mls feed takes nearly 7 hours to give and so I head back up to school for the end of lunchtime play to switch the feed off, disconnect M from the pump and flush his NGT through. The last few weeks I have been working alongside 4 members of staff, who are now fully trained and proficient in M’s needs and they will be taking this role on fully after half-term, meaning less disruption to my working day. Pump and backpack abandoned and medicines administered, M now has the rest of the school-day “pump-free” and I head back to my office.

Courtesy of telegraph.co.uk

3.30pm – End of school and on to the next part of our day. On the days when G and M go back to my Mum’s house after school, she first drops M at my office, where I reconnect him to the pump and the 500mls feed begins before I send them on their way and carry on with my work.

4pm – 5pm – If I’ve been the one to meet them at the school gates, then this signifies the busiest part of my day so far. We start with music practice for both children before they’re allowed to even consider asking for time to play on their tablets or to watch TV. As the gentle strains of music float down the stairs to the kitchen, I’m busy prepping everything for the hour ahead. I take the 500mls bottle out of the fridge and start heating it up, ready for a 4.30pm start time. I boil the kettle to make the feeds for the next day, running between kitchen and dining room to gather up all the necessary sterile medical supplies from the stockpile we have hidden in there.

Courtesy of shutterstock.com

I prepare the 2 mixes of medicine for M to take the following day and store both those and the feeds on the top shelf of the fridge. In between the kettle boiling and the feeds being made, I will hopefully have managed to check M’s NGT placement and will get the feed started on time. Next it’s on to making packed lunches for G and me for the next day, alongside prepping dinner for G and almost inevitably dealing with the requests for a drink, a snack and tablet time from both children. If I’m lucky, I’ll also have managed to wash the syringes and medicine pots, washed the empty feed bottles for the recycling, pulled out G and M’s homework books and might even have had time to take my work shoes off and pull my slipper boots on!

Midnight music practice is the way to go!

5pm – Bedtime! – The rest of the evening is spent convincing M and G to do homework, hearing them read, monitoring their screen time, peace-keeping, deciding on dinner for Mike and me and any one of a million other tasks that parents across the world are having to complete on a school night. Friday nights include a 3-hour stint at Stagecoach for G, M and currently for me too as I need to be on hand to tape down his NGT for dance, attach him to his pump during singing and drama and just generally monitor that nothing goes wrong whilst he’s there. Twice a week that list includes choir rehearsals for me as well as the monthly PTA meetings and the not-so-regular book club meetings I enjoy (assuming I’ve found time to read the book!). We start the bedtime routine at around 7.30pm and insist that lights are out for G by 9pm. M then spends the next few hours until somewhere around 11pm reading books, playing his cello, composing music on his ukulele, playing games and listening to music. He will finally go to sleep once I’m upstairs and going to bed myself and, if Mike is lucky and times it perfectly, by the time he’s put M’s pump on to charge, tidied up the kitchen, put the cats out, set the alarm and come up himself, M will be fast asleep alongside me and it’s a simple case of moving him back to his own bed. On a good night, we might then get 6 hours of uninterrupted sleep until our day starts all over again.

Baby steps

Reaching London

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In June 2011, we all set off to London for the first of very many visits to GOSH. Walking through those doors for that very first time is an experience I’ll never forget. Having heard so much about GOSH over the years, I had never imagined that one day we would be visiting in what felt like a last-ditch attempt to help our son. I was filled with awe, hope and finally a sense that we would now know one way or another whether something could be done to help him.

It was such a momentous occasion, that we had brought G with us too, feeling that it was important for her to be part of this new journey we were embarking on. I will be forever grateful to her godfather, Uncle A, who was on hand in London and able to whisk her away for an hour to play, whilst Mike, M and I waited to meet his consultant. The only problem was that M really didn’t want to stay with us and would have much rather disappeared to the park than sit and talk to yet another doctor in yet another hospital.

We didn’t have to wait too long and we were quickly ushered into a room with Dr Hill and a member of her team. Unlike many of the other medics we’d already seen, there was no sense of there being a time limit and I was able to fully explain what had brought us to her door. We went right back to the beginning, looking at every aspect of our 5 year journey so far. She asked probing questions and actually listened to our answers; she examined M; considered his height and weight; looked at the food diary that I’d been faithfully maintaining for months, before finally sitting back in her chair.

Perhaps I’m now adding to the sense of drama, but as I look back at the moment that was about to change all our lives, I can almost taste the palpable tension in the air. You have to remember that by now, every doctor we had seen had diagnosed toddler tummy, had rejected the idea of food allergies and felt that there was nothing wrong with M at all. If I were to discover the words “Munchausen syndrome by proxy” scrawled across M’s medical notes somewhere, I really don’t think it would surprise me.

Dr Hill looked at Mike and me and stated, simply,

“Well, there’s obviously something very wrong with this little chap”.

I could have cried, or possibly kissed her at that point! From that moment on, every difficulty we had faced over the past 5 years faded and we had a sense of purpose and of how to move forward.

Whilst usually favouring an investigative set of scopes initially, as we were already old hands at working within the constraints of a restrictive diet, Dr Hill sent us to the Dietician to discuss starting M on a MEWS diet. This meant that for the next 3 months at very least, M would be Milk, Eggs, Wheat and Soya free and, for good measure, because of my own problems with potatoes, we had to take those out of his diet too. This felt like a daunting task, but I knew I would do anything I needed to to seek a resolution for M’s problems. The dietician was fantastic and spent nearly an hour talking through how I could feed my hungry child whilst excluding all these food groups. Laden down with leaflets galore, the all important follow up appointment for September and several phone numbers to give me access to the help we would need, we left GOSH and headed for a local restaurant to enjoy our last “normal” meal for a long time.

As we sat waiting for lunch to arrive, I phoned my Mum to give her the news. She now says that she could hear the relief in my voice and I’m not surprised. I felt as if a huge burden had been lifted from my shoulders, all because one individual had listened and believed what I had to say about the health of my child. There was no question about our parental instincts, simply affirmation. We were right to have pursued in our goal and though we were still to wait another 18 months to get the final diagnosis, we knew that suddenly the future looked bright.

Five consultants, four registrars…and a partridge in a pear tree!

Gut instinct

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Despite an appetite to rival a grown man’s, M’s weight stuck determinedly to the 9th percentile and considering his complete inability to be successfully potty-trained, this wasn’t really surprising. When I say he could eat as much as an adult, I’m not exaggerating – on one occasion he managed to consume more in a day than a good friend of the family, who had an extremely healthy appetite.

M was diagnosed early on by our GP as having “toddler tummy” and we were told that he would just grow out of it. This was a diagnosis that was going to dog our steps for the next 3 years. At this point, G developed some gastro problems of her own following a bout of food poisoning and another of gastroenteritis, and we established ourselves, as the medical tests proved inconclusive, that she was struggling with intolerances to wheat, dairy and oats. The thought had crossed our minds that perhaps M had similar intolerances, but our attempts to remove these from his diet showed no improvement, unlike for G.

It was armed with all of this knowledge, that I went back to the GP and insisted on a referral to a specialist, having kept an extensive food diary for a couple of months. This recorded not just what and how much M was eating on any given day, but also his sleep patterns (which continued to be poor) and his toileting habits. We also put together a list of our main points of concern. Preparation is key and we wanted to make sure we had a case to put to the specialist.

Our first appointment was disappointing. The specialist listened carefully, nodded sympathetically and instantly agreed with the GP’s diagnosis and left me feeling, once again, a paranoid Mum. He also referred M to the same specialist that G was seeing, in the belief that maybe our children were suffering from the same problem. My gut instinct disagreed and I made my feelings on the matter clear. Although on the face of it, their symptoms seemed similar, there were key differences that I knew had to be taken into consideration.

I have learned that a parent’s gut instinct is possibly the most important thing that any medical practitioner can listen to or, at very least, consider to be as important as the physical symptoms described. I knew deep down that there were something very wrong with my boy, but on the face of it, few agreed. His lack of toilet training was an annoyance we should learn to manage; his healthy appetite nothing of note; his poor weight gain irrelevant as he was growing along his predicted percentile; and his poor sleep patterns the same as every other new parent had to deal with. At each and every appointment we attended with M in tow, he was active, energetic, chatty and showed no sign of the tremendous tantrums he could throw at the drop of a hat at home.

Depending on our gut instincts about M and our determination to find out what was wrong, we kept on battling and refused to accept that it was toddler tummy and that he would eventually get better without any intervention.

Unfortunately, over the next two and a half years, we would need to rely heavily on that perseverance and an inner depth of strength that exceeded what either of us knew we had. We moved from one consultant to another, one hospital to another and even one GP’s surgery to another as we moved house and chased a diagnosis. Finally, in May 2011, we were given the referral that would finally set us on the road to an answer.

M's arrival

It wasn’t the easiest of starts, especially after the wonderful experience of our firstborn daughter, G. My first pregnancy had been easy and I had loved every moment of becoming a first time Mum. When, two years on, we decided to bite the bullet and go for baby number 2, I naively thought that it would be a similar experience, though a little more tiring as I now had an active and inquisitive toddler to deal with too.

However, from pretty much day one, my second pregnancy was tough. I suffered from morning sickness for months, developed SPD from 8 weeks and by month 4 was using a walking stick and eventually a wheelchair to get around. I suffered from low blood pressure and frequently felt faint and dizzy when standing. I stumbled my way through G’s second birthday party from the comfort of my rocking chair and just about managed Christmas too.

However, by the middle of January it was becoming obvious to everyone that something wasn’t quite right with my pregnancy. I was admitted into the High Dependency Unit of our local maternity unit at 26 weeks and that kick-started the roller-coaster ride to M’s birth on 8th March. M arrived 7 weeks early, weighing a mighty 5lbs 12.5oz (I dread to think what would have happened if I’d managed to get even close to full-term) and after an extremely harrowing birth experience for all concerned, M was born not breathing. He was resuscitated quickly and whisked off to NICU, without me even seeing or cuddling him. We had chosen a name and Daddy went with him and eventually came back clutching a polaroid photo of our new son for me to see.

Despite the extremely hairy start, M responded well and by just 3 weeks later, a full month ahead of when NICU would have expected it to be possible, we were sent home on Mothering Sunday with our baby boy in tow. It was, without doubt, one of the best Mothers’ Day gifts I’ve ever received – being able to be at home with both my children with me.

What we weren’t to know then, was that the following 7 years would be filled with a huge amount of tears and trials before we reached a diagnosis for the condition that would slowly appear.

7 years to diagnosis

Searching for an answer