Lessons learnt this week; ripe pomegranates can cause allergic reactions and never, ever give up
I should have know my daughter, Belle, and ripe pomegranates are not a good mix. Tangy pineapple and kiwi fruit have given her swollen lips before I didn’t think about that when we saw this perfect specimen in Wholefoods, beckoning invitingly with it’s rosy red, shiny skin. I remember my big sister used to save her pennies as a child and buy a pomegranate from the greengrocer van and make it last FOREVER. If I was really lucky she’d let me have some. I swear she use to eat it seed by seed, savouring every jewelled morsel. Personally I always found the pips annoying as the flesh disappeared and you were always left wondering whether you really wanted to chew, swallow or spit them out. I was never , ever able to save money but she was really good at it. Most kids buy sweets with pocket money, not her. She still gorges on fruit as though they are sweets, good job she now lives in Oz where locally grown figs, grapes and oranges are plentiful.
When she was about ten years old she would add to her coffers in the summer by cycling out of town to the local Pick Your Own (could you imagine parents allowing cosseted kids do that now?) and cramming punnets full of strawberries for the local farmer to sell. I don’t think she earned more than about 8pence a punnet. This was seen as fair exploitation, long before the minimum wage. She took her hard earned wages to a family holiday in France and promptly lost them in one fell swoop when she misplaced her purse . I’m pretty sure my generous dad, who was always a soft touch, reimbursed her. Every Saturday he’d take my twin brother and I to buy sweets and comics (remember Whizzer and Chips?) ostensibly so he could buy himself a sticky bun and scoff it before we got home and my mum cottoned on to the fact he’d been eating contraband again. He still has stashes of goodies in his car and around the house – not much has changed! Black and white mints are his all time favourite. His sweet tooth goes back to endless indulgent, elderly aunts who would slip him cash whenever they could. If he wasn’t in the sweetshop or terrorising the sleepy neighbourhood in Haslemere, Surrey, with his mischievous antics he’d be saving up for model aeroplanes. I love the story of his dad, my Grandad, whose affectionate nickname was Tiger, collecting him from school at lunchtime and taking him to the pub to sit on the step with a ginger beer before being taken back to school in the afternoon. This is turning into a memory blog, but it’s gentle fun, so I shall continue.
The sight of that pomegranate made me think nostalgically about my sister and her determined ways and how much I miss her because she inconveniently moved to the other side of the world, so I shelled out for this oversized fruit hoping Belle would like it as much as her aunt. BTW I still haven’t forgiven her for dividing our small, shared childhood bedroom in half with a piece of cotton thread and telling me my side was by the window and hers was by the door and I wasn’t to cross the line and if I did, I’d get thumped. “But the door is on your side, ” I protested. “Bad luck,” she replied as I jumped the line trying to avoid her wallops. Apart from the odd infraction, she was really pretty tolerant of me, and fun , even when my endless books and clutter encroached into her space.
The day after eating the pomegranate, Belle came and told me her mouth was really sore inside and I noticed her lips were red and swollen and she couldn’t speak properly. It wasn’t getting any worse but her lips did then start to peel as though they had been burnt. We worked out what had caused it and threw the rest of the juicy fruit away. According to my FB buddies from various support groups I dip in and out of , it could have been Oral Allergy Syndrome or just a straightforward initial allergic reaction that could build if she eats it again. I’ll be following it up with our allergy dietitian for advice and I won’t be swayed by nostalgia again.
Make some home-made fun out of misery; I wrote in my last post about Chicken Pox descending on my usually exuberant three year old, Taz , during the half term holidays. When my twin and I had chicken pox as children, followed swiftly by a nasty bout of mumps, David’s face blew up like the elephant man sporting a triple chin. My older siblings thought it was so funny they took a photo of him outside, still smiling in his amiable way in a hand knitted red jumper with a really swollen neck and face. So mean. But it was considered good sport in a big family. That photo made it in to the picture montage for our mum’s recent 70th celebrations and still had us all in fits of laughter.
Taz’s pox was swiftly followed by Calvin waking me up with a burning fever and barely able to stand upright. I thought he was coming down with it too but the spots didn’t appear, instead he’s had a week of baffling, pongy diarrhoea. His stoma output has only just returned to normal. Unfortunately his abdominal skin that hugs the stoma is terribly sore and open. I’ve used a multitude of different products and remedies to heal it and it stubbornly refuses to comply. He hates his bag changes at the moment and I’ve thought about using egg white around it to create a protective layer but he’s really allergic to egg so I think I’m going to raid the stoma stock cupboard in the local hospital this week. There’s a reason I avoid planning holidays in October half term break because you can guarantee one of the kids will be sick. Note to oneself; never book theatre trips or holidays in the winter – something usually throws a spanner in the works.
Al of the kids’ consultants seem to have been beamed up by aliens because I just cannot pin them down. Belle is still being sick or feeling really sick twenty minutes after eating small amounts of food. She keeps asking me to make her soup because she doesn’t want to eat any bulk, even though she’s hungry. Not good. And no, she’s not stressed nor does she have an eating disorder – we like cake far too much in this family for that to happen. I have a gut (sorry!) feeling this is much more than the bowel blockages and slow transit she’s been having. I just wonder if she’s got a problem with her stomach emptying as well. My instinct that something else is going on is usually right, it just takes a while for it to dawn on me. I don’t want to put her through more tests but nor do I want this to carry on. Maybe I’ve got to use our second annual appointment our measly minded health insurers have reluctantly agreed to, to get her seen by her Great Ormond Street consultant more quickly. Lesson three: always play the system if you have to.
I’m going to end on the best parts of my week. The prizes for our fundraising auction and raffle at The Airline party are rolling in fast, thanks to the generosity of local businesses and tourist attractions. I’m starting to think I might just pull this event off. The Wychwood Music Festival at Cheltenham Racecourse has very generously donated a weekend family ticket for Summer 2014 , which is utterly fantastic. Their tickets sell like hot cakes so I’m pretty sure that will be a popular bid. When we explain we’re fundraising for childhood bowel diseases, the response and generosity is astounding. Friends and family keep supporting us in so many ways with this fundraising event, it makes us feel as though many strong arms are wrapped around us. I felt that once before when I walked up the aisle to say, “I do”, and it’s an irreplaceable, magic feeling.
I went to Parents’ Evening at school for Calvin. They are hugely encouraged by his progress and are confident he should definitely sit the eleven plus next September for our local grammar schools. In spite of missing nearly two years of school since Foundation and being born on the 30th August, he’s somehow managed to find his way through. Of course I’m relieved and bursting about it but what’s really remarkable is how far he’s travelled. Twelve months ago he wasn’t in school , he was deeply traumatised and very depressed. We were absolutely desperate about his wellbeing and didn’t know if we could keep him safe. I have never felt so frantic in all my life. I spent all that October half term making consultants listen until he had an urgent referral to a very good NHS paediatric psychiatrist. Within weeks he was also back in hospital having an emergency bowel section and a new stoma formed. Things felt pretty bleak.
Yet after speaking to his teacher and head teacher I got into my car with a spring in my step. I cried with joy before I could gather myself to start the engine. Those tears of relief were unstoppable. It was the first time in the last two years where I could look ahead, without trepidation, towards Calvin’s future . There was no fear, no fog but instead a growing certainty that maybe his illness won’t leave such deep childhood scars behind.
My last piece of good news was the birth of a beautiful new niece, a much longed for and hard won baby. You can’t beat news like that for family happiness.
Lesson learnt – be hopeful, never, ever give up and count your blessings, wherever they may come from.
Here endeth the lesson.
Posted on November 10, 2013, in Emotional rollercoaster, Eosinophilic Disorders, Uncategorized and tagged Allergy, Bowel disease, bowel inflammation, Cheltenham Racecourse, childhood inflammatory bowel disease, children with bowel diseases, colostomy, Disability, Ehlers Danlos Syndrome, elemental diet for children, elemental feeds, Eosinophilic Colitis, Eosinophilic disease, Eosinophilic Disorders, food allergies, Food allergy, fundraising, GOSH Children's Charity, Great Ormond Street Hospital, Oral Allergy Syndrome, pomegranate allergy, researc for childhood bowel diseases, stoma, stoma care. Bookmark the permalink. 1 Comment.