Food, differently. Part 3: the search for a magic formula

Looking back, 2005 marked something of a milestone in Tom’s story. We had pretty much weaned him off the chemotherapy, his heart was stable and we could finally see our little boy’s face.

For a further year, he would crawl and wander around with a “dangly” in his tummy: the PEG tube that had been inserted was either curled up and taped to his belly, or popped inside a little bag that hung around his neck. Whenever came time to feed him (still very often indeed), we would attach an additional tube (extension) and syringe, and wait once again for gravity to deliver the formula to his stomach. The gravity dance was the same as it had been with the NG tube: a little too low and formula came back up and into the syringe; a little too high and it was too fast, and vomit swiftly ensued!

Finally the day came when we swapped the “dangly” for a “button”! Other than the need for another general anaesthetic, this was a day of great celebration. The button was tidy, easy to manage and could be replaced at home in the case of a blockage or other issue. No more dangling tubes!

So… stability! At least in the specific area of how we were able to deliver food to our boy’s stomach. That done, the focus turned all the more intensely to finding the one, magical formula that dieticians and doctors alike told us must be out there: the one white powder that, when mixed with water, would deliver all the nutrition our little boy needed AND stay in his tummy to be digested instead of being vomited all over my dining room table.

We had started with standard baby formula, but quickly moved on to more specialised “feeds”. He stayed on an infant feed for years longer than the recommendation, interspersed with trials of many other anti-allergenic, “pre-digested”, amino acid only feeds. All smelled and tasted worse than the previous ones and none bore any resemblance to milk or food of any human kind.

Fro the time we were prescribed specialise formula (Tom was 8 months old) to my food meltdown with the dietician when he was 3 years old, I never felt that I was feeding my baby.

Throughout this time, Tom continued to vomit – every day, several times a day. Always explosively, always messily. My washing machine was endlessly spinning with clothes, sheets, blankets, muslin cloths and towels covered in foul smelling formula vomit.

Bottles of feed had to be picked up from the chemist monthly. We “earned” the right to an additional recycling bin on our kerb to allow for all those little glass bottles. And every feed time, I felt as though I was medicating my child. At no point did I have any sense that I was feeding him, sustaining him, nurturing him.

You may think, reasonably, that the tube was the barrier to that ability to bond with my baby, but actually the tube was my friend. Its introduction meant the end of dreadful battles trying to feed him earlier. As silly and frustrating as the tube dances around the house could be, I was at least able to ensure he got the nutrition he needed.

But each time I opened a bottle of formula, the smell wafted across my face which screwed up in disgust. And with each new attempt to find that magical recipe, that one formula that would “fix” him, the pharmaceutical magicians seemed to somehow make the smell and taste that much worse.

Which I might not have continued to question, had the vomiting slowed or stopped, or had he gained any appreciable weight. But in those couple of years, he just became iller. His colour varied from grey to yellow and back again, with a very rare day of a pink tinge.  His weight did increase, but ever so slowly and the child simply did not grow.

By his third birthday, I was becoming increasingly desperate, tired and …. informed. I had joined online support groups, researched nutrition, tube feeding, other children’s experience of formula. I was fast becoming an expert parent – or a “difficult” mother, depending on the doctor I spoke to.

I became convinced that there was one option that made a great deal of sense to me and that we had not tried: feeding my three year old “real” food. We had tried all the available formulas and he was getting very ill and losing weight. Nobody offered any other solution because this formula, costing around £60 a day, was the end of the line. It was the magic bullet. And somehow it became Tom’s fault that it wasn’t working… because the dieticians had no other option to offer.

I tried to contact my dietician – phone logs and emails will attest to that. She was on leave. So I called Tom’s paediatrician and had a remarkably short conversation with her. Bear in mind that by now I had a very good relationship with her! I explained my reasoning and she responded by letting me know that there was no scientific reason why ordinary food was contraindicated in Tom’s case. She advised me to go slowly and try foods one at a time, much in the same way that weaning babies do.

It was a Friday afternoon and that evening, we began a new stage of our journey with food: the blended diet.

Three days later, Tom stopped vomiting.

Food, differently. Part 2: NG to G tube

August 2004: Tom was a year old. A momentous achievement given his diagnosis of leukaemia and his considerable feeding difficulties.

We had been feeding him using the NG tube for four months by now, and his cheeks were constantly red raw from the tape used to secure the tube.

We also now had an overall diagnosis to explain all of his medical problems: our lovely, beautiful pixie child had and has Noonan Syndrome. One common aspect of this syndrome involves feeding difficulties, although the need for tube feeding is still rare among these children. It is still unclear why a child with NS struggles to eat, but absolutely acknowledged that the difficulty is real.

While lifesaving, the NG tube was now beginning to be difficult to live with. Tom hated it (imagine a tube constantly at the back of your throat) and there is little doubt that it contributed to his acid reflux. Our good quality tubes were designed to stay put for a week, but there are a range of reasons why they come out:

• Tom’s favourite: pulling it out of his nostril! I became adept at finding new and wonderful ways to use tape to make that difficult, but he kept up with me as his fine motor skills improved!
• A good sneeze: often enough to propel a good section of tube out of his nose which meant reinserting it to ensure the end was in his stomach.
• My least favourite: the vomit comet! If vomiting was particularly violent, the end of the tube would come out of his mouth, leaving me with a child who had a tube going in his nose and out of his mouth. I’m not sure why, but this always left me feeling really queasy.

Once he had realised that he could pull the thing out, our days became an endless ping pong game. Tom still needed feeds every couple of hours because his stomach could only tolerate very small volumes, so the tube needed to stay in permanently. He disagreed.

So he pulled. I re-inserted the thing (see below). He pulled. I re-inserted. Often five or six times a day.

Inserting an NG tube is simple but not pleasant. Essentially, you gently push the tube up the nostril, round and down into the throat and eventually into the stomach (via a rather unscientific measuring method involving holding the tube from nose to tummy before you start). That triggers the gag reflex. For an adult, it’s fairly easy to explain that swallowing will help, but babies are trickier to reason with.

Early on, I found only one way to successfully insert an NG tube. I swaddled Tom in a towel (blankets were too flexible) on the floor, and would sit astride him to insert the tube. As little and weak as he was, he could flail like the best of them in these moments and would resist with all his might. It was critical to have all the supplies to hand: water, syringe, litmus paper (to test for stomach acid), sticky tape for his cheek. While I became quite the expert, the whole procedure was usually about 20 minutes of endless screaming and resulted in an exhausted baby and mum. Big sister Kez was always there to soothe her little brother through the ordeal (hello trauma and PTSD, but she was and continues to be my hero).

In the previous months, I had learned a lot about tube feeding. I knew that there were more permanent solutions and procedures that could prevent vomiting, but they scared me. From a different perspective, all Tom’s doctors were convinced that his dependence on tube feeding was very temporary (I never agreed – you only had to spend a day with him to see how very difficult feeding was).

An NG tube is supposed to be temporary – usually a matter of weeks. Tom had his for 8 months.

While temporary, it is actually one of the riskier methods of tube feeding, largely because it’s so easy to insert the tube into the lungs. Liquid in the lungs is (I’m sure you’ll agree) not a good idea. Formula in there – very very bad!

So I began to ask about a gastrostomy, or G tube. This is a surgical opening made to connect the stomach to the outside world via a “stoma” (make a hole from the inside to the outside, hold the layers together with the help of some plastic, and there you have it). A PEG tube, or button stays in situ all the time giving access to the stomach whenever needed.

Our very optimistic doctors were reluctant. I’m not entirely sure why, but I suspect because they expected Tom to start eating, which would have been consistent with his diagnosis of Noonan Syndrome. He did not. I started begging, and Tom’s wonderful cardiologist came to the rescue and got the ball rolling on this procedure.

When placing a G tube, doctors sometimes perform a Nissen fundoplication. This involves wrapping the top of the stomach around itself to stop vomiting. It doesn’t stop retching, and it is usually not reversible.

We decided against the Nissen fundoplication. I felt really uneasy about preventing his body from evacuating if it felt the need to, and Tom’s vomiting was at least not constant.

Tom got his gastrostomy at 16 months, in December 2004. He had a PEG, so a tube dangled from his tummy for a year until the stoma was fully formed, at which point a further procedure swapped it for a button – much tidier and easier to manage!

The feeding regime continued much as it had (as did the vomiting!), but we could finally see our beautiful little boy’s face! No more tape and more importantly, no more red tape rash!

Tom’s gastrostomy stayed in place until last week… 14 years and 8 months.

Food, differently. Part 1:from birth, to NG tube

*I am fortunate to be happily married, with three children. This story, though, is very much the story of Tom and me…

Tom was unexpected. To be precise, we had planned to have our third child a year later than he actually arrived! It was a fairly uneventful pregnancy, and a reasonably uneventful delivery. Indeed, his first few weeks were uneventful. Our family had been completed and we were enjoying the simple pleasures (and chaos) of having three small children under the age of 4.

At 11 weeks old, Tom was taken to hospital:

• Failure to thrive (a dreadful diagnosis wrapped up in monumental maternal guilt)
• Congenital heart defect (pulmonary valve stenosis that was treated with open heart surgery later)
• Leukaemia (juvenile myelo-monocytic leukaemia – rare and fatal without a bone marrow transplant. Tom was one of the few who got through it without that but that’s another story)

And so began our story with food. And our journey with doctors, nurses, dietitians and well meaning family and friends:

“Can’t you see he’s terribly ill???”

“He must drink more!”

“You are not feeding him enough!”

“You must stop breastfeeding, that is the problem”

Any amount of milk this baby drank (unwillingly) came back up explosively. In fact, he often vomited larger volumes than he had consumed. He had no rooting reflex, no instinct to eat. As the days wore on, every meal was a painful struggle. He arched his back, reared away from the teat, cried and screamed for the duration of each feed. I became the master of distraction. 

Every two hours, I would get his bottle ready, and a favourite soft toy. By holding my baby in my left arm, bottle held with the same hand, I would gently stroke his left ear with my right hand, and dangle the toy in front of his face using my mouth… In this way, over the course of half an hour, he might drink 10 or 20ml of milk. More often than not, this would be followed by the soon-to-be normal vomit.

My life was ruled by milk, tears and vomit. Twenty-four hours a day. The demands of two other children filled the remaining gaps and I am more grateful than can be expressed for my lovely husband for keeping the practicalities of life happening around the chaos.

Days merged into weeks as this tiny little baby boy seemed to shrink in front of my eyes. At five months, he looked like a newborn and weighed little more than his birth weight.

“Don’t you realise he needs to grow? He must drink more milk!”

“Let him cry, he’ll soon drink! He won’t let himself starve to death!”

Some babies will absolutely let themselves starve to death. Eating can cause so much pain that it simply is not worth doing. Or they somehow lack the instinct to do so. Or… or… or there is something going on that nobody understands. Make no mistake, Tom would absolutely have died without the medical intervention he received, and without the endless support we had to give him to eat.

As he reached 8 months old, a nurse finally suggested a feeding tube. The relief I felt was utterly overwhelming, quickly followed by a desperate longing to know why I had not been told about this possibility earlier! A naso-gastric tube was inserted, and I learned how to manage it – inserting the tube to avoid endless calls to the community nurse or trips to the hospital; aspirating fluid to ensure the tube was not in his lungs; flushing regularly to avoid blockages (with as little water as possible, for fear of the vomit!); finding just the right method of taping the tube to his cheek to avoid it peeling away (snot is your enemy!);tucking the tube into a babygro away from little baby fingers; balancing a syringe of milk while holding a struggling baby (who still hates feeds, who still vomits, who now screams at the sight of a syringe); dancing with gravity and physics to find just the right speed of milk delivery.

At least I was now able to make sure milk got to his stomach. We had bypassed the mouth that was so absolutely determined to refuse it. In doing so, we ensured that a little more nutrition was absorbed before the inevitable Krakatoan eruption of vomit!

On day 1 of NG tube, we also became the proud borrowers of a feeding pump. This little machine was to save our boy’s life and its “beep” became one of my most loved and hated noises. To this day, my whole body jumps to standing when I hear it (in visits to hospital or if by some strange coincidence another parent is pump feeding her child at a restaurant). The pump allowed us to feed him slowly and continuously overnight and for the first time in months I had the hope of more than half an hour’s sleep. 

Tom was pump fed overnight from 8 months to 14 and a half years old. 

Memory is a fickle thing, but I believe that we started him on milk at a rate of 30ml per hour. That’s 2 tablespoons in 60 minutes, or 0.5ml per minute. That slowly, we could avoid some vomiting. We continued to “bolus” feed (milk is allowed to pass through the tube by gravity) during the day to maintain some normality for his stomach in the hope that it would learn to cope, and also to free him from the tubes and pumps.

There followed interesting months of following a crawling baby around the house holding a syringe of formula in one hand and a cloth in the other to mop up vomit! I had buckets in each room of the house in the hope that I could get him to one in time to catch the bulk of the eruptions!

 

L’alimentation par sonde – en francais!

Il y a quelques années, j’ai écrit quelques mots a ce sujet en anglais. La semaine dernière, un parent français posait la question a laquelle j’avais tente une réponse. Voici la traduction, en français un peu bancal!

Vous trouverez les feuilles Excel dans le texte anglais ici.

Il y a aussi quelques recettes ici (en anglais, mais j’espère assez simple a traduire).

Arrière-plan rapide: Petit Homme a le syndrome de Noonan.  Il a toujours eu de graves difficultés alimentaires, jamais comprises, et on le nourri par sonde pour le garder en vie depuis qu’il avait 8 mois.  Nous avons essayé le sevrage de la sonde l’année dernière, mais il y a de toute évidence des problèmes médicaux qui doivent être résolus avant même de penser à réessayer. Quand il avait trois ans, ses médecins avaient prescrit un aliment élémentaire (une préparation spéciale de divers produits chimiques qui composent le mythique “aliment complet”, sans allergènes-même les protéines sont décomposées en acides aminés). Mon bonhomme était très malade.  Vomissements plusieurs fois par jour, perte de poids et un bebe vraiment mal.  En désespoir de cause, j’ai demandé à la pédiatre si je pouvais essayer un “régime mixé”- de la « vraie » nourriture, cuisinée avec amour, comme pour le reste de la famille mais simplement moulinée pour passer par la sonde.  Elle était d’accord. Quatre jours plus tard, il avait cessé de vomir.  Sa courbe de croissance dénote une poussée de croissance, qui correspond précisément à cette décision. Les vomissements sont rapidement devenus rares.

Avance rapide jusqu’à cette année (2013).  En raison de l’échec du sevrage de la sonde, Petit Homme a finalement eu une endoscopie cet été, et nous avons maintenant un diagnostic supplémentaire à sa longue liste: colites a éosinophiles. La version rapide est qu’il est allergique, probablement au lait et au blé.  La version la plus longue implique des globules blancs ne fonctionne pas correctement et pourrait être auto-immune.  Ajouté à son histoire de leucémie, et je me sens un peu nerveuse…

Donc… Petit Homme est maintenant au régime : ni laiterie, ni blé (il mange un peu de temps en temps : pommes de terre, pâtes, pain, biscuits, yaourt et fromage??), et plus important, nous sommes maintenant de retour dans le monde des diététiciens. Les diététiciens qui ont été formés selon les directives de NICE sur l’alimentation entérale, qui sont absolument convaincus de l’importance d’un « aliment complet» (une préparation qui a tous les nutriments dans le bon équilibre à chaque repas. Réfléchissez : ni un repas Macdonald ni votre repas de restaurant chic aura été “complet”). Ces mêmes diététiciens ont appris à l’école que l’alimentation médicale est la seule alimentation sûre pour les patients alimentés par sonde.  Les entreprises pharmaceutiques sont très impliquées. Après tout le seul moyen qu’ils vendent leur alimentation est par le biais des diététiciens… Et puis ils rencontrent une mère non-conformiste comme moi.  Je ne suis pas seule, mais je suis une race assez rare que seule une diététicienne avait jamais travaillé avec une famille qui préparait la nourriture de leur enfant comme moi.  Pour des raisons bureaucratiques je ne peux pas maintenant travailler avec elle… Donc J’ai besoin de convaincre ces professionnels que, bien que régime mixé n’est pas et ne devrait pas être la norme vis-à-vis d’en cadre hospitalier, ce régime est sans doute ce qui convient le mieux à mon Petit Homme. Dans l’ensemble elle était contente de mon mélange, mais je voulais faire quelques ajustements, donc ça fait quinze jours que je fais des maths alimentaires.  Je voulais partager dans l’espoir que cela pourrait aider d’autres familles qui se posent les mêmes questions.

Petit Homme mesure 112cm et pèse 21kg.  Il a 10 ans. Il a donc besoin d’environ 64 calories, par kg, par jour (indication de la dieteticienne):

64 x 21 = 1344 Cals par jour

La diététicienne demande 20% de ses calories en protéines, 30% en graisse et 50% en glucides.  C’est là que les maths deviennent un peu penibles.  Commençons par le travail en calories d’abord:

20% de 1344 = 269 Cals de protéines

30% de 1344 = 403 Cals de graisse

50% de 1344 = 672 Cals de glucides

Tout va bien.  Maintenant, le problème est que sur les emballages alimentaires, vous ne recevez pas donné de protéines, de graisses ou de glucides en termes de calories, seulement en grammes.  Alors maintenant, nous devront convertir ces calories en grammes.  Pour les protéines et les glucides le nombre magique est 4, pour la graisse, il est 9.  Exactement pourquoi m’échappe, mais j’ai fait mes devoirs, et la diététicienne a confirmer mes calculs:

269/4 = 67g de protéine

403/9 = 45g de graisse

672/4 = 168g glucides

Youpi!!!  Maintenant, au travail !! Mais… attention ! Il est vrai qu’un steak contient des protéines, mais un steak de 100g ne contient qu’environ 79g de protéines.   C’est là que les emballages alimentaires, et les sites Web tels que http://www.NutritionData.com sont vraiment pratique.

Ensuite, j’ai créé une liste d’aliments que j’utilise couramment pour mon Petit Homme. La feuille Excel qui suit est un exemple des données que j’utilise pour mes calculs.

Feuille 2 a tous les ingrédients alimentaires que j’utilise actuellement.  J’ai parfois insérer un nouvel aliment.  J’utilise des herbes et des épices, mais je ne les compte pas – elles sont pour le gout !  Vous verrez que le haut de la feuille 1 est un peu désordonné et a un certain nombre de recettes au sommet.  C’est ma table de travail et je n’ai pas passé des heures à l’enjoliver !! Ceux d’entre vous qui savent comment utiliser Excel correctement verront que j’ai fait quelques regroupements de fantaisie. N’hésitez pas à l’utiliser et à ;’adapter à vos besoins!

Une fois que j’ai obtenu cette information, je copie les aliments que j’utilise dans une nouvelle rangée, avec la quantité de chaque aliment que j’utilise.  Je cuit souvent mon riz dans du lait, pour limiter le volume tout en augmentant le total de calories.  Les totaux sont faits pour chaque colonne et j’enregistre le volume total de l’alimentation afin de calculer le Cal/ml ratio.  La recette suivante est un exemple.  Depuis que j’ai fait cela pendant quelques semaines, je trouve cela plus facile avec l’aide de mon fidèle Vitamix pour obtenir des aliments très dense en calories préparés, et Petit Homme se porte bien.

Vous vous souvenez des valeurs que nous avons travaillées ?  Cette recette contient 38 g  de proteines (67), 44g graisse (45) et 180g de glucides (168), pour un total de 1260 Cals (1344).  Le faible volume de 1100ml donne une belle 1,15 Cals/ml, et Petit Homme tolère cette recette très bien.  Comme je change de recette tous les jours, son régime est varié – en calories tant qu’en aliments. Comme tout le monde, en fait !

Pour ceux d’entre vous qui ont remarqué les colonnes de calcium et de vitamine A.  Le teint du petit homme est souvent très jaune, et une cause de préoccupation.  Un des soucis était que je lui donnais trop de vitamine a.  Eh bien – la vitamine A abonde dans les aliments!!! C’est absolument partout.  La diététicienne de Petit Homme aimerait limiter la vitamine A a ~ 500MCG par jour.  Comme vous pouvez le voir cette recette est en dessous de cela.  Mais une recette qui contient une carotte saute à plus de 1000mcg.  Encore une fois, je l’équilibre sur la semaine, mais j’ai trouvé cette colonne très utile.

De même, depuis que Petit Homme suit un régime sans laiterie, il y a un peu de crainte qu’il devrait obtenir suffisamment de calcium dans son alimentation. Comme vous pouvez le voir, il a bien au-dessus de l’apport de calcium recommandé par jour 500mg pour son âge. Bref, une petite note sur la vitamine A.  La plupart des étiquettes nutritionnelles donnent la quantité de vitamine A en UI (unités internationales) … Aucune utilité pour moi!!  Heureusement, j’ai trouvé un convertisseur qui m’a permis d’entrer les données dans mes tableaux : http://www.Robert-Forbes.com/resources/vitaminconverter.html

Cette recette suffit à Petit Homme pour une journée.  Pour l’instant, je cuisine pour lui une fois par jour.  J’ai aussi commencé à réduire sa nourriture de nuit en ajoutant deux bolus de plus pendant la journée. Une petite note sur l’alimentation par pompe pendant la nuit.   À température ambiante, les microbes ont tendance à jouir !  Je me sers d’un mixeur très puissant (le Vitamix) qui chauffe la nourriture assez pour tuer à peu près n’importe quoi.  De là, il est décanté dans des bouteilles stériles. La bouteille se joint ensuite à la tuyauterie de Petit Homme, de sorte que la nourriture n’est à l’air à aucun moment.  À tous les autres moments, il est dans le frigo, en suivant l’hygiène alimentaire ordinaire. Cependant, la chose la plus importante à réaliser est la vie au jour le jour.  Voilà sept ans que je nourri mon fils comme ça.  Y compris la nuit, pendant a peu près 6 heures par pompe. Il n’a jamais eu de gastro-entérite ou d’empoisonnement alimentaire.

Je sais qu’il y a des dizaines de familles qui essaient de nourrir leur enfant comme je le fait, en mixant de la « vraie » nourriture, et je sais que les recettes sont rarissimes.  Je ne me vante pas vraiment de mes recettes ici.  Ce que j’espère que j’ai fait est de vous donner les formules pour trouver ce qui va convenir a votre enfant, et une petite feuille de calcul que vous pouvez utiliser pour faire des recettes qui s’ajustent aux besoins de votre petit (ou grand) ! Bonne chance, et retrouvez la joie du « fait-maison » !!  

 

To eat, or not to eat… on Tube Feeding Awareness Week 2015

Food. 

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.

Sorry is a little bit like glue…

I’m quite certain that every parent has at some point had dealings with a child whose behaviour is utterly out of order.  I’m equally certain that every parent has at some time or other felt clobbered by their beloved offspring.

I can’t remember a day since Eldest was 10 months old, that one or other of the three of them hasn’t at some point left me feeling clobbered.  I often talk about my patched up heart (this old post sums things up!) but I particularly hate the cuts and bruises that my heart suffers at the hands of my Offspring.

And so, the other day, a Facebook post made me think of a hands on way to try and make a point…

Sweet Girl and I went to the shops this afternoon before Little Man came home from school.  We stopped at the charity shop and chose two beautiful china plates – one that Sweet Girl would love, one that Little Man would desire.  On the way home we popped into another shop to purchase some glue.

Oh, did those children love those plates!!!  “Can we have our dinner using them, Mummy?”, cried Little Man.

No.

They reluctantly followed my instructions, and wrapped the plates in paper, then slipped them into plastic bags…

I brought out the hammer.

And unwillingly, unhappily, they smashed their plates.

Oh yes, I’m that mean.

Little Man was in tears at the sight of the pieces, Sweet Girl was holding back.   They both felt really sorry for the loss of their plates.  We used that “sorry” word a lot.

And I got the glue, and we started to put those pieces back together.

It was tricky – I am not a china plate restorer, and my glue was sufficient for the purposes of the lesson, but not of the “super” variety.

The plates are “whole” once again, but not the same as they were before.

“Sorry” puts pieces back.  Time allows the glue to set.

But once you smash something, it will never be the same again…

The underestimated Mother

My little rant yesterday seems to have hit a few chords – and I have to say I do love to get comments here, so don’t be shy!

I have been busy in the last few days trying to rationalise Little Man’s various special needs.  We have been hobbling along managing his care for the last ten years, and I have hit something of a wall.  As lovely as his professionals are, they are failing him because they are being lazy.  They each look to their speciality, and try to find the simplest answer to a rather complicated little person.  And the thought of getting together doesn’t seem to have entered any of their heads.

Enough is enough.  I don’t know how or when, but I’m getting them around a table, even if it’s a virtual one aided by skype or some such technology.  And I’m leading it.  Oooh, that’s going to get some heads buzzing!!!!  They are not going to like that one little bit.  But you see, this is the extent of the situation:

 

 

Even if you can’t read the tiny writing (I just can’t spend hours figuring out how to turn a powerpoint diagram into a picture file wordpress likes I’m afraid!), know that the centre circle is my darling boy.  Each and every other circle represents a professional.  The few that have dashed lines are ones that have not seen him for a while or have discharged him… and as I write this I’ve realised that I’ve missed one out.  There are 20 – 25 of these circles.

So I somehow need to sit all of these people down at the same time so that they all hear what I have to say simultaneously, and so that they are given the opportunity to brainstorm why my little boy is not well and how best to look after him!

For each of these circles I’ve created a diagram with existing diagnoses and treatment, name of professionals and frequency of visits, together with the questions I’d like answered in order to make him better.  It’s been a labour of love, and has required a certain will of iron.  I’m going to give each of them the full document in the next few weeks and months with a covering letter so that they can prepare themselves.  And I am not wearing rose tinted glasses.  If we are able to make this meeting happen in the next year it will be a miracle!

As an aside, this document is also going into Tom’s new EHCP… the government’s new system for special needs.  I’m hoping that the weight of the really lovely people driving this new system in our area will make a difference.

And to finish, this is what Tom would like his life to look like:

Hope you can read it… As ever, I’ll publish, then make lots of little changes as to how it looks!

At least he’s not in pain… but what if he is?

There’s been a lot of chatter in the last few days about the pain suffered by people with Noonan syndrome.  It’s something that has only recently been acknowledged by the medical profession, and a beautiful aspect of the internet is that patients and their parents communicate.  Then, as a force to be reckoned with, we approach our doctors and tell them, and repeat over and over again that so many of them suffer chronic and severe pain that they eventually start looking into it, and even more eventually agree that it is definitely a characteristic of the syndrome.

Theories abound as to its cause.  For years, Tom’s pain was dismissed as growing pains.  If you could see his growth chart you would see quite how laughable this is.  Here is a child who would scream in pain every single night for years and years and years, and yet there is no growth spurt on his chart at all.  Just steady, tremendously slow growth.

After six years of this, I wrote a letter to all the professionals involved in his care, and one doctor responded, getting him referred to the chronic pain team.  His pain has since been managed.  It is far from gone, but thanks to medication and physiotherapy and a lot of pacing, he rarely screams at night.

This got me thinking though… so often when one of our loved ones is ill, or dying, or has died, our first question to the medics is a pleading, “but did he suffer?”.  And reassurance is given and sought in the negative.

I am the mother of a child who does not know a life free from pain.  Pain is simply part and parcel of getting on with moments.  So what of me and what of him?  Do we not then achieve the peace that comes from knowing no pain was felt?

The more I think about this, the less sense it makes.  I’ve been lucky enough to endure a reasonable amount of pain at times in my life.  From the time I was ten, my legs and joints were very painful – I was never without some kind of tubigrip or bandage or pain medication.  I never really though twice about it.  A few years ago I hit crisis point.  I could not walk to the end of our road without pretty much collapsing, and I never achieved deep sleep due to widespread pain.  I was diagnosed with fibromyalgia.

[I’m fairly sure this was misdiagnosed… since cutting out gluten and dairy, nearly all of my symptoms have disappeared – pain free is pretty cool! ]

So…. speaking from the other end, this is what I noticed.

Pain is not a life choice.  It is not something that one willingly enters into.  But at the same time, the endurance of pain is not actually that big a deal.  You do what you can, you take medicines if they help, you manage the pain as best you can, and then you kind of get on with it.  Your life can become very restricted, and that can impact on your mood.  But it truly just … is.  I never felt as though my identity had been taken away, I never felt as though there was no point in anything any longer.  While I am sure some people are pushed to that, I think that those extremes of pain are in a different league, and that more likely is that there is another underlying problem causing that depression.

Pain from the perspective of the person enduring it is no fun.  But it is much easier to endure it than to watch someone you love endure it.

Seeing my loved ones in pain, either physical or emotional is far harder (and dare I say it, more painful) than even the worst day of “fibro” pain I suffered (and there were days I spent constantly in tears because I hurt so much).

I come to think that our desperate plea for our child, our partner, our parents not to be in pain is far more selfish than we think it may be.  The idea of pain is utterly dreadful, and our emotional hurt is something we desperately shy away from.

Little Man comes hand in hand with pain.  And after ten years, I am seemingly quite cold hearted about it.  I still insist he gets up, climbs the stairs and comes down again if he has forgotten his socks in the morning.  Once he has told me two or three times that he hurts, I will ask him not to whine because I cannot take the pain away.  I will administer medication, heat or ice packs and massage, but whining just makes me narky, and that’s no good to anyone.  His pain is physical, and quite, quite horrid, but if I allow myself to hurt emotionally in reaction it will damage my ability to help him as his carer.  It will also give him the message that pain is quite literally dreadful… something to be dreaded.  And if you dread something, your body tenses up.  And that will increase the pain.  So in his case, it’s really a case of tough love, baby!

Sweet Girl and Eldest are much more complex for me.  They experience a great deal of emotional pain.  Anxiety, fear, dread, anger at times, confusion… all of these almost constant emotions lead them to be very fragile, and they just hurt.  Tough love doesn’t help here.

I am trying for myself and for them to learn a little about acceptance.  To embrace the fact that life is not about just happy.  That it is a constant ebb and flow, and emotions and circumstances are all part of that ebb and flow.

Sweet Girl told me last night she was panicking (she is due to board at school and is getting nervous).  My response a few years ago would have been to wrap her into my arms and try to make the panic go away… reason it out of mind.  But last night I told her that it was ok.  That she could just let it happen for a while.  This new situation makes nerves appropriate, and we know that when she is nervous she tends to panic.  So actually, panic was perfectly reasonable.  We focussed on the idea that it would pass.  She wasn’t entirely convinced, but we spoke of listening to a CD or reading an easy book to try and let the panic drain away without being fed by made up worries.  She kissed me and went to bed, and was asleep twenty minutes later.

Eldest is supposed to be at school as I write this.  We haven’t left home yet.  Darling Man has had to take the day off work, because we had fears about Eldest’s aggression.  He’s just scared.  A lot of it is Aspie reactions to transition, and a good deal more is pain that his best friend is no longer there.  And he’s big.  So we’ve restructured our day because it’s the only thing to do.  He is in pain, and I hate it.  Writing this is helping me realise that in a similar way to Little Man’s pain, if I indulge my own pain at seeing him in this state, I am not helping him.

I will allow myself some tears on my way back home later, because tears wash pain away pretty well.  But I’ll also remember that this day, today, was painful, and that’s ok.  It will pass.

Pain just is.  Those who feel it are usually very good at handling it.  We need to accept that if there was pain it was experienced, and that makes up the sum of that person at that moment.  It need not be bad or good, but I think it must be accepted and acknowledged.  After all, if those doctors tell you that your loved one did suffer… what then?  What changes?  Not you, not your loved one, not how much you love them.  But maybe you don’t feel quite so bad… well that’s some kind of anaesthetic, but it’s not real.

Face the real, because however tough it can be, it’s brighter and braver and stronger than any fiction or fantasy.

Little Man making Feed!!!!!

Time to sieve the blackberry pips out!

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

Spinach

Forest fruits

Coconut oil

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…

Waited…

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!

You have so much more power than you realise…

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.