Saturday, 13 October 2012

Start of the Road

I'm meant to be editing some photos of our recent holiday but a slight technical issue (flat camera battery, whoops!) means I can't get them on to the computer so I thought as I'm here I'd update about the salicylic acid intolerance testing we're doing with Pixie. (I also want to stay online to stat check as I've just taken the decision to de-anonymise this blog with real life people and have put a link on my facebook page. Eek! So hi, those of you who are looking ;) )

We'd made the decision to cut out salicylic acid from Pixie's diet without discussing it with a medical professional first. Firstly, because we didn't think it would do any harm, and secondly because it can take two to three weeks to get a non-urgent appointment with my surgery and frankly I'm not that patient. We thought we saw some success and I think my last post on this subject saw a link between eating a 'moderate' food and a worsening of his symptoms. Since then we got to a stage where his symptoms were still there in varying degrees even when we were very strictly sticking to 'low' and 'negligible' level foods (for the list we've been working off, see here) but if we gave him something he wasn't used to he'd have terrible urticaria (hives, to you and me) around his face and terribly itchy, dark eyes. Every time we thought about giving up the low salicylic acid diet (Christ, I'm not keep typing that out, LSA diet from now on I think!) because we couldn't see any reason why his symptoms were flaring, we'd accidentally let our guard down and have a horrendous reaction to tend to. This isn't the best picture as it was taken on my phone (and please excuse the dinner down his top, which I've just noticed!), but the redness is lots and lots of hives:

While this was going on, we were referred to a paediatrician regarding chicken pox vaccines, so we took the opportunity to discuss this with the doctor. Unfortunately he confirmed that there are no tests we can do for this particular allergy but we can test for individual foods. We're working on a list of things we're pretty sure cause a reaction in Pixie; we know that mangos, flavoured crisps, anything tinned and mint cause a problem. Because the  list of potentials is so big I think we may have to do staggered testing as we want to get moving on it and we can't overload his poor body with things that may cause a reaction. His body needs time to get over the responses he has (or doesn't) but I don't want to wait indefinitely for testing.

To be honest I'm not sure where we go from here. Even if it's not the salicylic acid, there's definitely a pretty major list of allergies/intolerances he's got. I don't know how he can avoid even the ones we know cause a problem for the rest of his life - cleaning teeth is a problem, eating anything but home made food is a problem, having a varied diet is a problem.... Unfortunately, I think getting a solid answer is going to be a problem too :( Having said that, one thing that isn't a problem is Pixie's response to it all. He has been totally amazing at picking up that he must ask if he's allowed to eat any food offered to him by anyone other than me or his dad. He knows quite a few things that he's not allowed and will stop someone giving him it if necessary. He also saves me any of the sweeties he's given but can't eat - excellent!

PS - hello to the FIFTY EIGHT people who have just checked this blog in the last hour!

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