Eating Issues: A Special Saturday Post

Here, Chrissy is clutching her lunch-box in a carrier bag with its handles tied in a bow. Taking a packed lunch and indulging her food-related rituals enabled us to enjoy a trip to Exbury Gardens yesterday with her two nanas.

Chrissy has always been obsessive about food - from failing to thrive as a baby to over-eating as an adult. As a newborn Chrissy's suck was weak and she vomited frequently. Even as an infant, she suffered prolonged screaming bouts in which she would fling herself backwards as if in the grip of a painful spasm. I suspect she suffered from reflux as this is a characteristic of her chromosome disorder.

At her six week check I was advised to put her on solids as she wasn't gaining sufficient weight. The dramas at mealtimes began in earnest then. Chrissy choked, gagged and vomited her way through the weaning period, especially the stage 2 baby foods with lumps, as I agonised over where I was going wrong. I pureed her food for several years as she seemed unable to chew. The vomiting eventually eased but Chrissy's appetite remained poor. She limited her diet to a few select smooth foods, such as Petit Filous - the little fruit cream cheese pots, and Weatabix, mashed up with lots of milk.

Changes came gradually as Chrissy grew bigger and wanted the same foods as her siblings and peers - but she was still very picky and ate painfully slowly. When she was around 10 and anti-psychotics were introduced, her appetite increased and her diet became more varied. It got to the point where she'd eat anything and never seemed to feel full. Her weight decreased again when she went on Prozac and Naltrexone at 14, and during her six-month stint on a gluten and casein free diet. Her weight dropped to five stone when she was 22 and had the platelet problem. She would only eat cheese flan initially, then ate so little we wondered how she survived. After her hospitalisation, anti-psychotics were re-introduced on a daily basis, and she became increasingly obsessive about food. In fact, before her microdeletion was found she was even tested for Prader-Willi Syndrome, a genetic disorder characterised by over-eating and food obsession.

These days, Chrissy is overweight and her life revolves around food. She repeats the same food-related questions every couple of minutes 'what's for dinner?' 'What am I having?' 'Is it peanut butter?' etc. If we ignore her or don't answer in the right way she gets increasingly agitated and if she has to wait for food her obsessions will escalate into a self-injurious outburst. Due to these outbursts, particularly her stripping behaviours, we're very nervous about taking her out of the house. The trip to Exbury was a ridiculously ambitious plan but I knew that, for different reasons, it was a special place for Chrissy's nanas, and at this time of year it's at its most spectacular. We got there late - about 3.30 - because we couldn't rouse Chrissy from one of her sleepathons - but the long deep sleep had left her full of life, and she was thrilled to be there. The only heart-stopping moments came on the moving steam train when Chrissy announced several times with increasing urgency: 'I want to get off! Thankfully, Ian's iron grip, and our frantic distraction techniques and shameless bribery ('shall we open your picnic? What would you like next - cake or chocolate mousse?') worked a treat. She finished her picnic later in the most idyllic setting imaginable surrounded by a riot of colourful blooms, including the glorious rhododendrons Exbury Gardens are famed for. I'm so glad we decided to risk it. What a magical afternoon!

I am a SWAN UK (Syndromes without a Name) blogger