“Feeling low. Isobel keeps choking on her food,” my status update said on Facebook last week, after a particularly trying time getting her to eat her supper.
Not that the food was particularly challenging: she’d had sliced ham and chopped well-cooked potatoes and broccoli before without trouble. It was just one of those days when her lack of form indicated a lack of self-motivation, most likely prompted by constipation.
It’s never easy, watching a small child choke on her food, especially when you’ve already made the effort to cook it until soft. The best we can do is either mash it up more, or switch to liquid Paediasure – the latter which I am keen to avoid, given how vastly that reduces the variety of Isobel’s diet. If you’ve never tried Paediasure – don’t. It’s vile.
We all have off-days. It’s just more profound in Isobel; on such days, she simply doesn’t perform. Her legs give way in walking practice, she doesn’t attempt push-ups, she drools more. Instead, she lies in ours limp as a collapsed rag doll, laughing at her own ineptness – and all the while we sigh, our concern only partly alleviated by her giggles.
I recall a discussion with PACE’s erstwhile Director, Heather Last, about Isobel’s floppiness. Stimulation is apparently key to the success of Conductive Education with CP kids; not just the gentle patting of joints to ‘wake’ them up, but also the practice of singing to the children throughout their exercises.
Many of the sessional notes that come back to me from PACE mention something called ‘sensory processing difficulties.’ This refers to how stimulating the senses increases awareness of the body, triggering appropriate motor and behavioural responses. Heather has compared it to pulling over in her car and singing to herself while shaking up her joints to rejuvenate herself whenever she tires of driving.
Effectively, on a floppy day it’s much harder for Isobel to motivate herself, so we have to sing/work much more vigorously, and more repetitively, to bring her out of her rag-doll state. It makes her laugh – and she can perk up, but not always. Not that she has sensory processing disorder; rather, her CP makes it harder for her stimulated senses to ‘wake up’ her body.
Lately, Isobel’s constipation had been getting her down. On medical advice I’d reduced slightly the amount of Movicol in her drink – one part apple juice to two parts water – by way of easing her into more independent bowel movements, but ended up with, to use an euphemism, another squirrel’s nut-store.
I have never had constipation that bad, but trying to focus on what you’re supposed to be doing, with such hard stuff inside you, must be so painful.
It has been months since Isobel’s last feeding clinic. She used to attend once every two months or so. When her PACE sessions were increased to thrice a week, without warning or explanation her hospital dietitian handed over all paperwork to a community equivalent.
The mention of the term ‘community dietitian’ in the termination email notice so flummoxed me, I forgot to ask what it meant. Did they live in some traveller commune, dishing out organic potato gratin from the caravan? If not at the hospital, where were they based? Suddenly, it seemed that Isobel’s dietary requirements had slipped beyond the healthcare radar.
Imagine my relief, then, when the email came from another NHS professional. The only difference between a hospital dietitian and her community counterpart, it transpired, is that the latter makes home visits.
Upon her visit to PACE, Kathleen quickly put my mind at rest. Her precursor was always obsessing over Isobel’s calcium intake, and hardly ever discussed the rest of her nutrition with me. I was regularly departing the clinic with notes demanding an increase of cheese, cream, milk, butter and yes, those blasted milk-based puddings in her diet. I was convinced this wasn’t healthy, and could have contributed to Isobel’s constipation.
Kathleen was different. She suggested adding dried fruit and beans to Isobel’s diet, and recommended that I seek further medical advice on the Movicol.
I felt cleansed. I know I’m not Isobel, but I am sure that if she could understand Kathleen’s language she would have been besides herself with relief. I’ve only just started her on the revamped diet in the last few days, but already, I’m beginning to see an improvement in her nappy. I’ll keep you posted.