Family Magazine

Out, Damn Milk-based Pudding! Out, I Say!

By Mmostynthomas @MostynThomasJou
"Have you ever met an overweight person with CP?" Miles asked me the other week.
The thought hadn't occurred to me. I'm sure they exist, but given the amount of rehab they have had to undergo in their lives - and of course, the work that goes into their nutrition and feeding routines (whether by tube, by spoon, or otherwise) - many people with CP I know often have slim, ultra-toned physiques.
Since I last blogged about the issue, Isobel's feeding has improved vastly. She'll accept crustless sandwiches, toasted soldiers with jam, finger foods such as grated cheese, strawberries, Organics Goodies cheese puffs, cooked broccoli (although we have to watch for the stalks), and any chopped foods that are easy to bite into and chew (ham or mango slices, for instance).
Out, damn milk-based pudding! Out, I say!To my relief, she's also found a way to maneuver any edible obstructions to the front of her mouth - thus minimising gagging - although occasionally, I might move a hand behind her back just in case.
Proficiency in self-feeding, though, has suddenly become elusive. Often Isobel reaches for the spoon in my hand, then withdraws. Rather than being lazy, it's as if she's forgotten how to do it. Her paediatrician had warned us about this: a symptom of the memory problems linked to her cognition, which has been severely damaged by her past seizures, as well as the CP taking hold in her fingers.
Limited mobility, under-developed muscles in her digestive system and impaired oro-motor skills - which affect her drinking capacity - ensure that Isobel still has constipation; some days it's so bad she won't eat much, irrespective of food consistency or content. (I've had days where the only meal she had was breakfast.) On such occasions, though, sometimes she will drink more, often up to 200ml of fruit juice or milk a day: good news in terms of fluid intake.
At times like this, you have to improvise. I'm sure I am not the only mom who has tantalised her child with a little Angel Delight before switching to the main course, or brazenly helped herself to a spoonful or two of a particularly tasty dish under her watchful eye, just to get her to eat.
As far as Isobel's dietitian is concerned, it doesn't matter how much she eats so long as she has enough calcium in her diet, her nappies are consistently wet, and weight gain is on track. Her bi-monthly feeding clinic, which the dietitian conducts along with a SALT (speech and language therapist), is one hospital appointment I look forward to the least.
Although they don't mean to - they're both very kind - sometimes the clinic makes me nervous. The moment I open the bowl, I know the SALT will peer inside and ask me about the contents. Then very gingerly, I'll bring the first spoonful to Isobel's mouth, feeling their eyes on me and inwardly pleading that she doesn't start struggling.
Out, damn milk-based pudding! Out, I say!Then the questions start. "What does she have for breakfast?" "How much milk in her cereal?" "Does she have toast WITH that?" "Mid-morning snack?" And so we continue in that manner, running through a typical day's menu, always taking into account consistency and calcium content. Each time I answer, I become acutely conscious of the variety of foods I'm giving Isobel: a typical symptom of the sense I'm getting of being interrogated in front of a harsh desk-lamp. 
At the last feeding clinic I expressed my concerns about the obsession with milk-based puddings twice a day. I was bored sick of alternating between Angel Delight, custard, rice pudding, creme caramel and yoghurt for aeons, and didn't think Isobel was getting enough nutrients. I'd given her a very fruity breakfast consisting of strawberry pieces and Weetabix with stewed apricot soaked in milk - washed down with grape and raspberry juice - and she yielded an unexpectedly soft and healthy poo afterwards. 
Thus alerted to her fruit deficiency, I tried giving her homemade plum crumble smothered in custard for pudding that evening - and the following evening, and the one after that. She resisted, every time. She was just too used to those blasted milk-based puddings. 
Two suggestions were made at the feeding clinic. The first, that the more challenging foods could be offered to Isobel at lunchtime, with softer dishes for supper, when she would be tired anyway from her daily vigours. We could guide her in her building of good habits by alternating 3-4 sips of drink with 3-4 mouthfuls of food. The second was to prescribe her a drink containing extra nutrients on non-eating days, overcoming any deficiencies and possibly even bulking her up a little. 
And then it hit me. While not bony - we have worked hard to avoid that - Isobel could well join all those people with CP who just don't go over weight. It might be a good thing in adulthood, but hindsight now tells me, it's also - partly at least - the result of parents battling with their nutrition in their formative years. 

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