I've been really slack about updating - but the truth is, this is HARD. Really hard. Not being a stranger to exclusion diets I knew it would be, but nothing prepares you for the reality that is an indignant, stroppy tweenager who understandably wants to be like her friends and is facing a *much* longer term than expected of a very limited diet.
We've made progress, mostly by sensible planned means - but I confess in absolute desperation we tried some BFree rolls before every ingredient had been tested and thankfully, these are ok. This success not only brought a bumper set of accepted foods but a real possibility of a school packed lunch! This is not to be sniffed at, in a school where packed lunches are not permitted, she really will be the *only* child having one, and if it's as near normal as possible that matters. A lot.
We've done well with carbs. Protein - not so much. And she's now completely refusing every possible (sneaky) attempt to get chickpea into her diet as it's now "revolting". This is a stage all parents face on similar exclusion diets, the child is understandably feeling utterly out of control and I completely understand why she needs to do this. She's telling me that whilst she accepts the restrictions imposed by her medical team, she still calls the shots. Her body - her rules.
This, in my opinion, is vitally important to appreciate. We couldn't have embarked on this without her consent. Giving a degree of control, where appropriate really helps though - for example, blood tests really panic her, causing a rapid escalation into anxiety which she can barely cope with. So we've now adopted the policy that she has control, she makes the choices, but she needs to understand why they are necessary. On the whole it works too. She tells the doctor or nurse where they are allowed to put the needle (hand, arm etc) and whether she has cream, spray or nothing. Within reason she has the right to refuse too - although she hasn't yet, because she's in control and is actually pretty sensible for a ten year old.
So we've also followed her list of priorities for food introductions too, which sadly hasn't included much protein! We've made pancakes (above) using a pot of pear puree instead of egg, my fruit, cashew and seed bites with a few alterations and she's done a fair bit of experimenting too. She enjoys the BFree pittas with lettuce, sweetcorn and carrot chopped inside, with some Violife cheese in. I just wish there was some protein in it!
On the (hugely) positive side, when she's not reacting to new foods, I have a daughter who barely refluxes. Seriously. Hardly at ALL. After 10 1/2 years of moderate to severe reflux this is life changing - and if the unpleasant bowel and urinary symptoms are indeed delayed and related, we could be looking at one seriously healthy and happy young girl.
Which makes it all worthwhile.
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