I think about it ALL the time. Not because I’m hungry but because my Little is not.
Don’t get me wrong, 9 times out of 10 he will eat chocolate if given the chance, or sweets. And fairly often he will ask for crisps or chips, or even a crumpet. But half way through that crumpet, he is full. If I were to push (when he was younger), he would continue to try eating and vomit.
We do not know why he does not get hungry, and doctors haven’t even begun to listen to me about that aspect of his feeding difficulty. They are stuck at the gut – is it too slow, is it diseased? (Maybe, and no are the answers to those questions)
My reality is that he is eleven years old and has been utterly reliant on tube feeding since he was 8 months old. I am a tubie mum veteran.
I have ridden the waves of vomit using the various and wondrous concoctions given to him by the pharmaceutical companies (excuse me, the dietitians, who aren’t one little bit biased by those companies – no they’re not!). I have seen him fade away into nothingness and look a ghastly mixture of grey and yellow. I have watched as doctor followed nurse, followed doctor try to stick a cannula into a vein in order to rehydrate him. Knowing that they needed to stop sticking him with needles, knowing that we were creating trauma, and knowing that they could not stop because with every moment that passed, he needed fluid more, and with every moment that passed his dry little body was narrowing his veins.
I have stood against the medics, taken my gut instincts into my hands, learned more than any mother should ever need know about food, and calories, and fats and proteins and vitamins and minerals and digestion, and I have advocated for that child. I have watched a dietitian write in bold red letters: Mother going against medical advice.
And I have made that Little food, and blended it and sieved it and worked and worked to get enough goodness into the tiniest volume so that his body would not reject it.
I have spent each and every day of the past ten years feeding him every two or three hours, and overnight. We have a magic pump that allows me to sleep, and feeds him drip by drip so that the precious liquid stays inside, and hopefully translates to growth and energy. I have been up more times that I can remember to deal with the various alarms that pump gives off. Now, each time I hear that beep when out and about, my heart starts pumping and my body stands to attention. It takes a few minutes to realise that mine is not the attention being screamed for, that the pump in question is another child’s.
I make Little’s food every day or two. I have a recipe, but I question myself ALL the time. Do I need to rethink it, to recalculate? Have I missed something, should I be doing more, has his growth been enough to justify a change?
I think about food ALL the time.
I am not part of a team. We have doctors and nurses, and wonderful school teachers, and they largely follow my lead. I have no dietitian. Yet. I have no one to work with, to figure out a way forward.
Because this is an odd situation. The general consensus of “they” is that he will one day be tube free. He is mobile and intelligent and there is no physical reason that we can find to explain the need of tube feeding. So no medic will say or write that Little is “tube fed” in a permanent manner. I struggle to get them to acknowledge “for the foreseeable future”. In spite of tube weaning failure on a number of occasions.
Don’t get me wrong, I am not looking for a doom laden approach. But if he is one day to be tube free, we should have a team. It should include me. It should also include professionals who have experience in this area – the psychology of tube weaning is what has me ranting today, so a psychologist; a dietitian; a doctor. And as a team we should make a plan. I know that plan A is very unlikely to work, but as Eldest’s head of care wrote to me this week,
“If Plan A doesn’t work, then we’ll move to Plan B, then C, then D, then E and so on until we find a plan that works”
I have no plan. I do not have the ability, experience or knowledge to make a plan, and as Little’s mother I am the last person able to put any plan into practice. Most people will understand that mother and pre-adolescent coming head to head on such issues is a recipe for disaster.
Little hates his tube food.
Little hates thinking about food.
Little hates the feeling of his stomach filling.
Little fights me whenever food comes up – so breakfast, snack, lunch, snack, dinner. Whining, shouting, screaming.
I can avoid some fights when it comes to oral food. I make it his choice, but then he is miserable because even if his stomach is not hungry, his mouth is and he does not know what he feels like, and cannot find anything to satisfy that feeling. I suspect he feels failure too.
How can I avoid the fights about tube food? That is what keeps him healthy and alive.
He HATES tube food. It’s boring, it takes too long (about 3 minutes), there’s no point, it doesn’t do him any good. And anyway, he’s in hospital “all the time” as it is, so it wouldn’t make any difference if he was ill. He’s tired all the time, so it wouldn’t make any difference if he didn’t eat.
This is the discourse he proclaims. The confusion, misunderstanding, frustration, anxiety and anger are growing as he is getting older.
We should have had a team years ago. Years. Ago. Specifically to avoid This.
I am patient. My children have taught me not to raise my voice. They have taught me to accept their emotions, both bad and good. But I find myself raising that voice when Little screams at me that I am mean and stinky and evil because I want to feed him.
Amazing first today!!
Little Man cooked his first feed. He chose the ingredients based on the basic recipe I use…
Beef (he wanted pork because he likes a little pork to eat, but that was yesterday’s meat)
Oats (because he likes flapjacks)
Rice milk and coconut milk (Koko brand) because we ran out of rice milk
Orange and mango juice
He measured everything out… cooked the oats in the milk and the beef in a frying pan with the coconut oil…
Chose to add in a little turmeric and garam masala (and smelled everything first!!!)…
Put it all into the Vitamix…
Then poured it all into a strainer (to be doubly sure to avoid blockages).
I’m so so proud of him!!! Life skills, emotional development, and knowing that most of taste comes through smell I’m hoping that in time he will be able to taste some of this lovely food he’s making. The next big test is tomorrow to try and increase volume a little because this particular blend came to 1400mls… he’s never managed more than 1200mls in a day so we’ll see how he goes tomorrow!
Quick Background: Little Man has Noonan Syndrome. He has always had severe eating difficulties, never understood, and has been reliant on tube feeding to keep him alive since he was 8 months old. We tried tube weaning last year, but have now been discharged on the grounds that it was unsuccessful and that there are medical issues that must be resolved before we even think about trying again. When he was three years old, on an elemental feed (a special formula of various chemicals that make up the mythical “complete feed”, with no allergens – even the proteins are broken down to amino acids. Don’t let the 52% corn syrup in the ingredients put you off – or do, he was very poorly. Vomiting several times a day, losing weight and all sorts going on. In desperation I asked the paediatrician if I could try a “blenderized diet” – real, normal food blitzed fine enough to go through his tube. She agreed. Within four days, he had stopped vomiting. He had his one and only growth spurt in the weeks following that change, and vomiting is now a pretty rare occurrence. Fast forward to this year. Because of the failure of the tube weaning, Little Man finally had an endoscopy this summer, and we now have an additional diagnosis to his long list: eosinophilic colitis (I cannot tell you how proud I am that I’m able to pronounce that!!!). The quick version is that he’s allergic, probably to milk and wheat. The longer version is that it involves white blood cells not working properly and could be auto-immune. Added to his history of wonky white blood cells with the leukaemia I’m thinking watch this space. So Little Man is now on a dairy and wheat free diet (did I mention before that all he will eat is potato, pasta, bread, biscuits, yoghurt and cheese??), and more importantly we are now back in the world of dieticians. Dieticians who have been trained following the NICE guidelines on enteral feeding, who are taught the importance of a “complete feed” (one which has ALL the nutrients in the right balance at every meal – just a head’s up – neither you MacDonalds nor your posh restaurant meal will have been “complete”), and who are told time and again that medical feed is the only safe feed for tube fed patients. The pharmaceutical companies are very much involved in this, after all the only way they sell their feed is through dieticians… And then they meet a maverick mother like me. I am not alone, but I am a rare enough breed that only one dietician had ever worked with a family doing blended food through a tube before. For bureaucratic reasons I can’t now work with her… So I need to convince these professionals that while BD is not and should not be standard hospital policy, in this one case, it is not only appropriate, but probably the best thing for Little Man. On the whole she was happy with my blend, but did want to make some tweaks, so I have been doing Food Maths for the last couple of weeks. I wanted to share in the hope that it might help other families grappling with the same questions. Firstly. Little Man stands 112cm tall and weighs 21kg. He is 10 years old. Based on his age, he should be getting approximately 64 calories, per kg, per day:
64 x 21 = 1344 cals per day
The dietician would like him to get 20% of his calories from protein, 30% from fat and 50% from carbohydrates. This is where the maths becomes a bit of a pain. Let’s just work it out in calories first:
20% of 1344 = 269 cals of protein
30% of 1344 = 403 cals of fat
50% of 1344 = 672 cals of carbohydrate
All good. Now the problem is that on food packaging, you do not get given protein, fat or carbs in calorie terms, only in grams. So now we have to convert those calories to grams. For protein and carbohydrate the magic number is 4, for fat it is 9. Exactly why is beyond my scope just now, but I’ve done my homework, and got my maths checked by the dietician, so here it is:
269/4 = 67g protein
403/9 = 45g fat
672/4 = 168g carbohydrate
Yay!!! Now we are ready to go. Be careful though. We often think of meat as protein, as well we should, but 67g fillet steak is not the same as 67g protein… This is where food packaging, and websites such as http://www.nutritiondata.com come in really handy.
My next job was to compile a data set of foods I use commonly in Little Man’s feed. Using the websites above, and the packaging, I made a spreadsheet with all the information I needed on it. You can download it here:
Sheet 2 has all the food ingredients I currently use. I occasionally insert a new food in there as I find myself using it. I have not worried about things like herbs and spices, they’re just little bonuses I put in there from time to time. You’ll see that the top of sheet 1 is a little messy and has a number of recipes at the top. This is my working table and I haven’t spent hours making it look pretty!! Those of you who know how to use Excel properly will see I’ve done some fancy grouping and sums – feel free to use and adapt to your needs and find some lovely person like my Darling Man to set up those fancy things that save time in Excel!
Once I’ve got that information, I copy the foods I’m using to a new row, with the amount of each food I’m using. I’ve taken to cooking the grain in some rice milk as that makes the feed much lower in volume which is a big thing for us. The totals are made for each column and I record the total volume of the feed in order to calculate the cal/ml ratio. The following recipe is an example. Since I’ve been doing this for a few weeks, I’m finding it easier with the help of my trusty Vitamix to get very calorie-dense food prepared, and he’s doing well on it.
Remember those values we worked out? This recipe has 38g protein (67), 44g fat(45) and 180g carb(168), for a total of 1260 cals (1344). The low volume of 1100ml gives a lovely 1.15 cals/ml, and amazingly Little Man tolerated this one really well. I could have tweaked it by adding meat to increase protein (I was working with a bit of mince I had in the fridge), but as I change the recipe each day, he gets a really varied diet and those proportions of protein, fat and carb fluctuate – just like they do in my diet, and yours.
For those of you who noticed the Calcium and Vitamin A columns. Little Man’s complexion is often very yellow, and a cause for concern. One of the worries was that he was getting too much vitamin A. Well – vitamin A ABOUNDS in food!!! It’s absolutely everywhere. Little Man’s dietician would like him to have ~500mcg a day. As you can see this recipe is below that. But a recipe that has a carrot in it jumps to over 1000mcg. Again, I balance it out over the week, but I’ve found this column very helpful.
Similarly, since Little Man now has to be dairy free, there’s a little concern that he should be getting sufficient calcium in his diet. And since maverick mum won’t just use a can of formula (corn syrup with added chemicals – I feel quite strongly about this but will leave that rant for another day! ), I had to be sure I was on track for the calcium. As you can see, he’s getting well over the 500mg daily recommended calcium intake for his age. Anyway, a little note about vitamin A. Most nutritional labels give the amount of vitamin A in IU (international units)… No use to me!! Luckily I found a converter that allowed me to input the data into my tables: http://www.robert-forbes.com/resources/vitaminconverter.html This recipe is enough food for one day. At the moment I’m cooking for him once a day. I’ve also started reducing his overnight feed by adding two daytime feeds. A little note on overnight feeds. It causes everyone concern that we should hang a bottle of what is effectively soup overnight. At room temperature, nasty bugs tend to thrive. In the past I did wrap Little Man’s feed in ice packs, but for reasons lost in the mists of time I stopped doing that years ago. I blend his food in a high powered blender, my beloved Vitamix, which heats the food up to piping hot – I mean hot enough to kill pretty much anything. From there it gets decanted into sterile boxes (the ones I would be using if I had to make up powdered formula). It then gets attached to Little Man’s tubing, so the food is not open to the air at any time. At all other times, it’s in the fridge, following standard food hygiene. However, the most important thing to realise is day to day living. I have been feeding Little Man like this for seven years. Including overnight feeds (good golly do I wish he could do without those overnight feeds!!!). He has NEVER had a tummy bug, gastro enteritis or anything approaching food poisoning. And at the end of the day, that speaks volumes. I’m hoping to meet a dietician who will work with me as we navigate this brave new world of food allergies, or malfunctioning gut etc… And I’m hoping that she/he will see that I’m willing to put in the work to do this well. But in the meantime, I know there are dozens of families trying to feed their tubies like this, and I know that recipes are like the holy grail. I’m not really shouting about my recipes here. What I hope I’ve done is given you the formulas to work out what your tubie needs, and a little spreadsheet that you can use to make recipes that add up to your tubie’s numbers! Good luck, and enjoy cooking!!
To those of you who broke me this last school year – knowingly or not, willingly or not…
I don’t know why you felt so threatened by me.
I don’t know why you saw my attempts to help you help my child as criticism, overbearing, over protective, wrong.
I don’t really know what led you to choose to ignore me so utterly.
I don’t know why you felt that professionals who had met my child only once or twice must surely know him and his needs better than me.
But all those things you must surely have felt, for there is no other reason for your actions. And the year is over now, and I and my Little Man will not be returning.
But know this: you broke me. I will mend and I will heal, but you broke me.
All summer long, your voices have been dictating how I care for this little boy. Those voices who spoke with such utter certainty about his energy levels, that he really did not need a wheelchair. Those voices who maintained that he ate exactly like other children. Those eye rolls each time I spoke to try and impress upon you the level of fatigue he experienced at the end of each and every day. The looks of disbelief when I spoke of his tears of exhaustion and cries of pain in his sleep at night. The boredom your faces showed when I asked you once again to prioritise physiotherapy over other activities (maybe rescheduling??) because I had been told how important it was by the doctors. Your ever-so-reasonable justifications for not feeding him as much or when it had been agreed.
All of you… I know that you had good intentions. I know that you never meant him any harm (honestly, I’m not sure you felt the same towards me, but I can live with that). And I know that you came to believe that you must follow the professionals’ instructions, and that those were everything. [You forgot that Little Man has many, many professionals, and that the only person they have in common is me. You forgot that they see him once in a blue moon, and that I care for him daily. You should not have forgotten that.]
And so, you broke me. Your voices and actions were so powerful that they are beating down my heart, my mind, all those instincts that tell me what Little Man needs. You see, you told me in those voices, in those actions, that I was wrong and you were right. And you told me so often, so loudly, so unbelievably unkindly, that I began to believe you.
I began to believe that there must be more wrong with me than with this little boy, despite the fact that he is under the care of five or more specialist consultants at Great Ormond Street Hospital.
So in the last three weeks, as I have prepared for the day’s activities, my heart tells me what I should be doing, and your voices slam me down. And the really insane thing is that I have been listening to you. We have been using his wheelchair about 25% as much as my gut tells me to. I have been pushing him to eat – the other night I became angry with his eating difficulties (guilt is not yet assuaged on that front). I have refrained from asking playscheme staff to pace him according to my gut feelings, and let them manage alone (they are trained SEN staff…). I have sent him on activity days with a gently push in spite of his tears of exhaustion, with my heart screaming at me to stop.
And now, half way through the summer, Little Man is yellow, bordering on grey. He is in pain most of the time. Leg pain mostly, some arm pain and tummy ache and regular headaches. He is TIRED… so, so tired. His eyes are huge, and dark. His memory is hugely affected, and he is struggling to process all that is happening. That leads to tantrums of monumental proportions (lasting several hours each), which exhausts him even further.
And you won’t see that. Because you are tucked away enjoying your summer holiday. Blissfully ignorant of his struggle, and of my heartache (which no doubt you would see as over dramatic anyway). Sad to say, I don’t think you’d even see it if you were standing here right now.
You can’t change what happened this last year. You will not have an opportunity to do things differently with Little Man, or with me. I have to admit to a huge sense of relief at leaving which leaves me so, so sad… this is not the emotion that should be riding high at leaving one’s children’s primary school.
But I will heal and mend, and as I do so will my care of Little Man. I’m hopeful that we will avoid doctors and hospital before I do, but my heart is strong enough that I think I will catch myself and him in time. And we make a new start with new staff for whom a little boy such as him is wonderfully normal.
So you, in all of this? If you were to read this; if you were to recognise yourself in this; if you were to ask me what I hope?
I would ask that you remember we parents of special children are always on your side. We want to help you because if you can meet our children’s needs, they will be happy and they will thrive. I would ask you to think the same of me… if my child is unhappy at home there is a high chance it is due to problems at school (even and especially if these do not show).
Listen to me. Listen to the mother or father who comes to you for help, or to give you information about their child. There is a reason for their need to communicate. And armed with information you can be better… better teachers, better assistants, better adults.
I would ask you to trust that while doctors have a wealth of generalised experience, parents know their children’s needs far more intimately. In the case of a complex child, the parent is often the only person who understands the intricacy of that child’s needs. If you ignore the parent, the child WILL suffer.
I would ask you to put to one side for a moment your ideas of failure and success. I would ask you to remember that you can only do as much as you can do within your environment. And that environment, and your help simply may not be enough.
I would ask you to remember that sometimes, giving up is necessary for a child to succeed. Sometimes, success is having the courage to say – this child needs something different.
I would ask you to lend your voices to mine rather than join the ranks of those who would quiet me. Mine is but one rather little voice, shouting, crying, singing for my children. There are many who would shout me down because what I sing is inconvenient.
You can choose – to listen to my song, and join with me to support it. Or shout with those loud voices of denial, without listening because what I say makes you uncomfortable.
You have so much more power than you realise. You need to know that you broke me. You need to know that I will mend. You need to listen, to care and to be so, so watchful of what you say and how you say it. Mothers like me do not need to be broken. We may appear strong, but really we are very, very fragile… a little like eggshells.
You have so much more power than you realise. Use it wisely, and carefully. Please.
It’s taken this long… Back in November, two medical teams had called up concerns over Little Man’s health, feeling strongly that there was a gastro problem that needed investigating. The tube weaning team had called their efforts to a close due to “dangerous” weight loss, and the endocrinologist had stopped the growth hormone treatment for the same reason. I’m not being dramatic, I’m quoting what doctors said to me. Of course, the word “dangerous” may be spoken, but it is rarely written in a report. And so when I relay what I have been told to others who look after Little Man, things break down rapidly if those others stop trusting me. (That is for another time, another season… trust has been in very short supply for the last few months.)
So… in November, the endocrinologist referred Little Man back to the gastro-enterologist whom we had not seen for three years… why? Goodness only knows: with so many specialist doctors involved in his life, we regularly fall through gaps, and I do not always chase everything up. On the whole, if things are stable, I let them be. Unfortunately, when he has not been seen for a while, the system requires a re-boot in the form of a referral letter. As usual, the letter was lost, and it was up to me to make several phone calls in the following months to ensure that the referral went through and an appointment was finally made.
It’s unfortunate that in the meantime so much in Little Man’s day to day life began to depend on medical reports. Anything that I as his mother report is now deemed irrelevant unless backed up by a medical report. The frustration this engenders has me stymied when I try to express it… I’m hoping that inspiration will hit me and I suspect that I will pick up my little pencil and create some sort of drawing, but for now, the page remains blank.
Anyhow!!! We are now at the beginning of June and have finally seen a very busy gastro-enterologist. It was a slightly frustrating appointment, an hour later than scheduled (and Little Man has reached an age where his patience for medical appointments is at an all-time low), with a doctor who clearly was rushed off her feet. To have her look at charts and suggest that my son is overweight is infuriating, and I hope to clarify at the very least the choice of words. Most people who see him describe him as skinny, and his BMI is normal. However, his head is rather large, and I do know that his weight is significantly closer to the “norm” for his age than his height. But please, look at a child before using language like that. Ho hum… following a discussion with a nurse, I suspect we will have a phone conversation to clarify that little chestnut!!
There was a very good point to this meeting. I’d have loved more time to discuss my thoughts and concerns – I’ve done a lot of reading and thinking and would like to talk with an expert about the possible issues, but actually what we need is information. And the first thing that needs to be done is to go look at what’s going on inside that little body. I was very impressed that once the doctor decided that we needed to do a gastroscopy and a colonoscopy, we were sent immediately to the appropriate ward to meet a nurse and discuss admission. Not only that, but we already have a date!!! Mid July, we will be heading up to London for those tests, including biopsies which will hopefully give us some answers and some idea of the direction needed to help him.
The nurse was quite quite lovely! As we went through the normal pre-procedure questions, she mentioned more than once that Little Man was quite complex and that she would have to talk to a few doctors to ensure his safety. This may mean more tests before the oscopies, but for me it pointed out once more that my description of Little Man and his needs is not exaggerated! She plans to speak to the cardiologist and expects an echo and ECG before the procedure. She needs to speak to the haematologist to discuss his bleeding issues. She was keen to hear my thoughts about what I hoped would happen, which gave me an opportunity to voice some of the questions I’d been unable to raise in my appointment with the doctor. Sifting through Little Man’s notes is going to take her quite some time, but I came away feeling very reassured that his needs were being taken very seriously.
It was a long day, with a little boy who is becoming ever more fed up of hospital visits. But there were lovely highlights:
We bumped into Dominic and his mum… visit them over on www.justbringthechocolate.com, they are an inspirational family and one we met through the amazing charity www.postpals.co.uk. The boys had such a giggle, comparing wheelchairs and playing on a tablet. It was a joy to listen to them just get down and chat and play, despite only ever having met once before. It was also really lovely to meet up with a mum whose writing is a source of huge inspiration to me, and whom I follow largely through her blog and facebook.
Thanks to our chat with Dominic, we were a little late to the ward… Serendipity strikes again: as we arrived, Dr Mattie was waiting for the lift with us! Dr Mattie is a clown doctor, the first (surprisingly) we have met at Great Ormond Street, and he absolutely lifted Little Man’s mood! The red nose was wonderful, as were the flashing shoes. Little Man was left with stickers galore and a red nose of his own… but the best gift was the smile!! The Theodora Children’s Trust has to be one of the most uplifting organisations I’ve heard of, and this link to their facebook page shows a photo of the Dr Mattie Little Man met today!!! How exciting, exhilarating, wonderful at the end of a day of boredom, overheating and heading into a discussion of needles to come.
Little Man is rather pleased that he will earn a pound coin for having a cannula, even if he is asleep when it’s inserted – oh the silver linings we have to find to help our Littles… Similarly, he thoroughly enjoyed his chips (thank you McDonalds) on the train ride home! The tears that well up at the mere mention of needles mean that we will do the blood tests at our local hospital, with the help of giggle gas. Luckily, the nurses locally have really reacted well at the realisation that Little Man is now in the throes of a real needle phobia, and that giggle gas is currently the key to helping him. A great friend of mine is due to give a talk about this topic, and I thoroughly recommend her blog… go there now!! It’s over at Coke Floats and Chemo and has a way of lifting you above the mud that you may be mired in. Her work with doctors will, I’m sure, help little boys and girls like my Little Man, who grown into bigger boys and girls who are less afraid of doctors and needles than they would have been without her.
We’re home now, and he’s asleep – it didn’t take long after such a day!! So it’s going to be time to get a bottle of Mummy’s best home made blend, plug it into the pump at one end, and into the boy at the other, and head to bed myself!! Here’s to finding some answers at long last!
Short update today…
Little Man Tom, as I’ve mentioned before, is struggling to grow, and keep weight on. This despite being tube fed with lots of good nutritious, homemade food over and beyond what his height and weight suggest he should need.
A couple of weeks ago we saw the paediatrician who felt his Growth hormone treatment might be the cause of the weight loss.
Since I am the one who administers his nightly injections, I’m sure you can imagine that it has been emotionally very difficult topoke my lad knowing it might be making him ill.
But the one thing I’ve learned to do over the years is wait. So wait I did. Until last Friday when I felt that two weeks was quite enough to have checked a fairly simple question with the expert. The first phone call was fruitless: no paediatrician to be found. The second phone call led to an answer machine, so I left a message filled with both facts, questions and emotions.
Happily, Tom’s endocrinologist, Prof is a lovely man and quickly realised that this issue needed to be nipped in the bud. I received a phone call a few hours later from the great man!
Conclusion… Tom’s weight loss is unlikely to be as a result of growth hormone. Prof feels that we need to look into Little Man’s gut. This is something I have been questioning for a very long time, so is worth investigation.
More phone calls, to find the quickest way to an appointment. We have not seen the gastro-enterologist for quite some time, so it may well need a referral from the GP again. I’m hoping that my phone call to the feeding clinic may provide a short cut! We will see.
In the meantime, while the growth hormone question has more or less been put to bed, a more fundamental one about Little Man’s body has been raised…