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!

This is an interesting article about salicylic acid intolerance in children.

Can't Do Carrots

I'm working on the next speech post (I am, I am, honest! Definitely not watching repeats of The Bill) but there's been an interesting development on the salicylate front.

Yesterday Pix had one and a half carrot batons. I mentioned in my last post that he's not a fan of low salicylate vegetables (although I've had some good ideas to try out for that, which is awesome, thanks to folks for that. Apart from Katherine who suggested he try kale, MY MOST HATED VEGETABLE EVER) so we figured just to get some nutrients in him we'd let him have a little bit of carrot, which has medium levels of salicylic acid in which we thought would be ok in moderation. Well. Today his eyes have become more and more red underneath and itchy; his face and arm skin has been itching him all day; his cough has got more and more frequent during the course of the day and his stutter has been awful.

The fact that they've all got worse together confirms (in my opinion) that they're all related. It would be far too much of a coincidence for them to completely autonomously of each other get bad over the course of the same day. Surely? But, it has been a better weathered day today so it's possible it may be a pollen allergy, I suppose. Do pollen allergies cause stutters? Or maybe something else. But possibly for the first time on this venture I feel slightly confident that I'm not displaying vast Münchhausen by proxy symptoms and I am barking up the right tree.

Vegemite Vege-won't

We're coming to the end of day five on a lower salicylate diet for Pixie and I have to say it's not been as soul crushingly hard as I was expecting. We've been super pleased with his nursery as the P's daddy called them to let them know what we were up to, expecting to be asked to take in a pack up for Pix, but they've accommodated us entirely. The only problems we're finding are that he now has a very limited diet, especially in the fruit and veg department. Luckily he likes bananas, pears and golden delicious apples so he eats two of those a day. Unfortunately all the low salicylate veg are ones he doesn't like, like cabbage and peas. Bummer for him. I'm trying to get him to eat them but it's hard going - if anyone has any bright ideas on how to get kids to eat certain vegetables that'd be handy! The other problem is the range of food he can have while we're out. Partly this is because I'm being particularly cautious while I'm getting to grips with the diet, but partly there's plain crisps and, er, that's about it. He's still being so good about it all.

His symptoms may have seen a very, very mild improvement. It's hard to say with a lot of them as they wax and wane anyway, but his eyes are less red and angry looking; I've not heard him cough much in the last day or two; there's no eczema patches; I've not heard much whining about being huuuuuuuuuuuungrrrrrrrrrrrrrry; I've not noticed him bash his head a million times. His speech is going through a relatively 'good' patch at the minute but he's definitely still stammering, although the coherence of his words is quite good. So yeah, there's certainly not been a decline since we started this and if I squint a bit there may even be improvements!

Those Silly Salicylates

I mentioned in my last post that one of the things I was considering was a salicylate intolerance in Pixie. The list of symptoms associated with it are varied and numerous and a salicylate free diet is mooted by some to have positive affects on people with ADHD.

There are a number of things on the list that Pixie has. Obviously it may well be that he just 'happens' to have a multitude of unrelated, low-level health issues but equally there may be an all-encompassing reason for them. Having fibromyalgia myself, I know that a myriad of seemingly unrelated issues can (eventually!) be tracked back to an umbrella condition. With that in mind, we decided that cutting down on salicylates certainly wouldn't hurt.

The list of symptoms we're concerned about may be a mix of unrelated issues and the fact that Pixie is, y'know, three, , so I thought I'd track his progress here. The symptoms we think are related are these:

• eczema (mild, but we can never quite get rid of it)
• persistent cough
• slightly darker and slightly paler patches on his forearms, as though the skin pigmentation is going awry
• itchy, dry skin around his eyes, with red circles round them, that cream doesn't seem to get rid of
• constant hunger
• accident prone (honestly, I'm surprised he doesn't have brain damage by now, the amount of times he's walked into the same pieces of furniture!)
• hearing without comprehension
• slurred speech
• stammering

Obviously if the salicylate intolerance isn't the cause then the symptoms won't get better over time. However, even if he is intolerant I'm expecting the symptoms to wax and wane before going completely, especially while we get to grips with what is and isn't 'acceptable' under the new regime. So I'm going to track the progress here.

We're currently at the end of day two and he's being surprisingly agreeable about the entire situation. He's started asking if he's allowed to have something before he eats it (which is brilliant!). The worst part is limiting his fruit and veg as he's a big fruit fan and we obviously want to keep him having a fresh, healthy diet! Because he goes to nursery for 3 half days a week he has 6 meals a week outside the home. I don't want to mess about with what he eats there on what's unsubstantiated theory at the moment so we're not going to ask the nursery to alter his food in any way yet. However, we'll keep an eye on any reactions he has on those days and take steps if necessary. I'm slightly concerned about the website I linked to earlier saying that caution needs to be exercised on reintroducing salicylates as anaphylactic shock may occur....I don't think that they'll be removed so completely (we're not currently changing his toiletries, for example) that him eating 'normally' at nursery will result in that though! Um, if anyone thinks they know different please get in touch before Tuesday morning!

I wasn't expecting to see any results this quickly but what is a little bit galling is that this afternoon his eyes got really bad and red again and his behaviour deteriorated pretty quickly. How much of this is because we slipped up somewhere and how much is because the weekend was spent with his grandparents having attention lavished on him I don't know, but there were definitely tears before bedtime!

Tomorrow is another day, and one that we'll hopefully start to see signs of change.