Keeping a daily diary

4 Aug

Allergies are so amazing in just how much a mystery they can seem to be.  With a young child especially, it can be hard to understand what on earth is going on.  Symptoms come and go and it is really hard to figure out what is triggering reactions.

One way you can try and gain some sense of the situation is by keeping a food diary.  When Adam was 8 months old, before we saw our first pediatric allergist a month later, I decided to keep a list of his symptoms.  When I found that diary this week as we were packing to move home, I laughed bitterly at my naivety but also at just how screamingly obvious Adam’s symptoms were.  How any layperson would be able to see that something was clearly very wrong.

 

 

I was so ignorant of what triggers might be and what reactions looked like.  I made spurious links such as when we came home from a cafe and I started to fry onions and so became convinced that Adam’s hives rash all over his neck at that point was due to an onion allergy rather than due to being a cafe for a couple of hours.  I also missed links, such as when I’d eaten a nut cake (that a mum had brought to a picnic, something I think is unreasonable in retrospect) and Adam woke from his nap in his sling, screaming his head off, sneezing, in a rash and generally quite poorly.  I thought it might be hayfever and just didn’t understand it could have been me eating the nut cake and hence transferring nuts to him.

The photo above of Adam’s symptoms diary from 2010, when he was 9 months old shows what was going on on an average day.  How any doctor, let alone 8 seperate GPs, could have missed the signs that severe allergies were at play is beyond me.

The important thing is tho that over time I learnt what is useful to include in a symptoms/food diary and how important it is to keep one and fill it in every day.  If you miss a day you might miss the links between eczema that shows up on Wednesday and what was eaten or done on the Monday and start trying to second guess what the triggers might have  been.

What to include in your daily diary?

Foods: List all the foods eaten throughout the day. I find it useful to include foods that have up until then been ‘safe’.  Its easier to list everything all in one go.  If I make a stew then I’ll list the ingredients, including whether any stock was used etc.

Activities: Write down what you got up to during the day.  Your child might have picked up trace amounts of an allergen at the playground and put his fingers in his mouth before you’ve had a chance to wash his hands. That might be what’s made his skin rough or very itchy that evening.  If someone came round and the kid had clothes with allergens on them, write that down too.

Symptoms:  I include when my boy has had hives, has been wheezy, or has eczema.  At the moment, thank God, the eczema is the most common symptom but in the early days, before we figured things out, there were days of swollen eyes, lips, problems with breathing etc.  Restless nights also get written down as well as diarrhea, vomiting etc.  Basically anything that is out of the ordinary.

Medicines: I recently discovered that antihistamines can contain banana or raspberry extracts as flavouring.  This isn’t the best news as Adam has allergies to both bananas and all berries.  So now I’m thinking back at how awful his eczema was when we visited my parents and wonder whether its because we gave him cetirizine every night to make sure he wasn’t uncomfortable.  Even before that I’d write down whether Adam had taken ‘hastabinni’ (his name for antihistamines) or whether we’d used Salbutamol or Montelukast for his asthma or Synalor or Hydrocortisone on his eczema.

It seems like a lot of detail but it really really helps you feel a bit in control.  As you’ll probably know yourself, trying to guess what’s going on is one of the hardest parts of living with an allergic kid.  Consistently writing your food/symptoms diary will take you one step closer to feeling a bit less frazzled by it all.  Try and include whether you’re using any new products e.g. clothing detergent, bath oil, bath cleaning fluids (these don’t seem to wash off very well even when they are eco and linger on the bath), moisturisers (on yourself as well as on your child).

It will of course also be interesting to look back in a couple of years and seen what you’ve all been through!

 

Survey!

17 Jul

It’s been an absolute age since I posted-we were packing up to move home and then that didn’t work out but we still had a ton of unpacking to do! We still haven’t quite settled back into our old flat so here’s a quick post to say I just came across an awesome survey.

How can a survey be awesome? Well this one asks the kind of questions only someone who is absolutely on the same wavelength as you, allergy-wise would ask. I found it really therapeutic to read the survey questions and to complete it. It was one of those moments when you feel like, yes, those feelings you keep hidden, are shared by others out there too! Nobody I see on a daily basis has any experience of allergies and so I just get on with things and don’t really feel the need to think about my own feelings and experiences related to allergies particularly often. But this survey helped stir things up a bit and has also given me great food for thought for future posts!

Most importantly tho, this survey is hopefully part of some useful research that will help shed further light on life with a food allergic child! I do hope you can complete it! I’ve written to the researchers asking to be kept up to speed with their research finding so that I can share them here.

Here’s the link to the survey: http://www.surveymonkey.com/s/KFA722012

Camping, here we come!

20 May

A tent!  So excited! This morning we went for a stroll and a shop was doing a tent display in our park.  We hadn’t thought of buying a tent and just thought camping might be too hard with a child.  But then we checked out this amazingly huge tent, with enough space for a double inflatable bed and space to stand up straight inside!  I suddenly realised that Adam’s sleeping has become much easier-he falls asleep relatively easily these days and stays asleep apart from one wee break. So camping might be doable! Its a far cry from what night life was like for us just 6 months ago!  I also realised that camping might be our only way of going ‘away’ for a night since we can’t easily stay in hotels or self-catering places-in the former we’d struggle to feed Adam and in the latter the kitchen and home wouldn’t be safe for his contact allergy.

So it seems that with camping, we might actually be able to have our first weekend away (to a place that isn’t my  parent’s house) since Adam was born! He’s also gotten to the age (three in July, God willing!) where I think he’d really enjoy the excitement of camping, particularly seeing the stars so clearly.  I have no idea what sort of allergy-related issues there might be, apart from perhaps other people cooking and eating un-safe stuff very close by and other kids running around with food.  But if the campsite is relatively spacious or empty I guess that wouldn’t be a problem?  My husband thinks its over the top for me to be talking about buying our own travel fridge (costs for things like this quickly escalate don’t they!) though I think its the easiest way of trying camping for the first time as there aren’t many quick and easy meals you can make for Adam.

Have you tried camping with a child with multiple food allergies and contact allergy?  What sort of things should we be aware of that make the experience different to camping with a non-allergic child?

Home made body butter!

19 May

Finding a moisturiser that is both free from nut/soy/sesame oils etc and free of petroleum and parabens aaand which is relatively unscented is a bit of an ask too far.  So I set out to finally try and make my own body butters and lotions, something I’ve dreamed of doing ever since I was a little girl and my mum was gifted a beautiful book on herbs.  In the book there were the most wonderful concoctions made with natural stuff, much of which you could grow in your own garden!  Unfortunately our herb plot doesn’t contain the plants that we need to be using for very dry, eczematic skin (especially calendula and chamomile) so I have bought the ingredients we needed.

(all the little finger marks in this photo are from my little boy enjoying touching the cream. He loves smearing body lotions and creams all over the place ;-))

I was incredibly excited about the first batch of salve I made until I got tired of having to melt it in front of the heater every time I wanted to use it as it was so hard. I then tried to add more oil to it to make it softer but just ended up with something horribly lumpy which my son wasn’t too impressed with. Nevertheless, I was quite convinced that even this lumpy salve was helping soothe his itching and calm down his flared up eczema. I used it in place of steroids even when his eczema was pretty fiery.

Then when I was in Neals Yard talking about making my own stuff, the lady showed me a really simple body butter recipe.  Last night I couldn’t remember the recipe and couldn’t find anything online that matched my ingredients, so I made it up!  The beauty of it is that you can add whatever essential oils you like that match whatever you’re trying to treat e.g. eczema.

Using a standing mixer to whisk your own body butter certainly seems a bit funny at first but the consistency of the end product is just amazing.  Wonderfully enough, my mother in law absolutely loved it and asked for a tub for herself!  Its incredible how easy the body butter is to make and how shop-like the end result is.  I’ve tried countless body lotions, creams and butters on myself over the last couple decades as I’ve also got really dry skin. And this easily is the nicest, most effective, most natural one I’ve ever used.

So, to the ‘how to’!

(all the ingredients can be bought at Neals Yard and almost all are organic)

Ingredients: 

30g beeswax

20g cocoa butter

1/2 cup of olive oil (I should think you could substitute in any oil here (jojoba/vegetable/grapeseed etc) apart from hemp which I think gets damaged at high temperatures)

3tbsp coconut oil

2tbsp macerated St John’s Wort

3tbsp macerated calendula

5 drops of lavender essential oil (I hope to also add Roman Chamomile next time. I didn’t buy it first time round as Neals Yard say that you need the much more expensive Blue Chamomile for dry skin. Reading around online tho it seems that the two Chamomile essential oils are quite interchangeable so using the cheaper one will do!)

5 drops of tea tree essential oil

How to:

Melt the beeswax and cocoa butter in a bain-marie (a saucepan with a bowl/measuring jug over it or sitting in a steamer so that the bottom of the bowl/jug is submerged and not touching the bottom of the saucepan where you have simmering water).  Once it’s completely melted, pour it quickly into your standing mixer bowl with a whisk attachment (or use a hand-held whisk) . Whilst whisking slowly, add the coconut oil and then the rest of the macerated and essential oils.  Turn the whisk to a high speed and leave it for about 5 minutes.  You’ll see your concoction transform into a smooth, creamy substance, just like butter/dairy-free spread is transformed by being whisked for a few minutes into being soft, and fluffy and much lighter in colour than it originally was.

I poured the butter into an old (clean) tub I’d had a body butter in before straight away.  Initially it will seem too runny, but don’t worry, as it cools it will take on its perfect consistency!

Hope you enjoy making this one! I hope to make it this week for my mother in law and her sisters but am yet to figure out how to decorate the jars I’m buying to make the gift look pretty as well as smell yummy.  Any ideas?

Nut free?

19 May

A few weeks ago I went out for dinner with a friend who has a nut allergy.  She mentioned her allergy to the guy behind the counter and asked what foods didn’t contain nuts and then she ordered her food.  I was surprised by how she hadn’t asked to speak to the chef in person like I’d read you should do on all the allergy advice websites.  All she was bothered about was whether the recipe contained nuts, not whether there was any cross contamination.  So off I went thinking how this wasn’t responsible behaviour, blah, blah.

But today I realised I’m also doing things in a way that other people might think is just irresponsible and struggling to balance the ‘ideal’ scenario with daily life.  That’s the way it goes when dealing with allergies, isn’t it?! My boy has peanut and tree nut allergies (blood and skin prick tests respectively) and technically I think we’re meant to never give him anything that isn’t “nut free”.  Over the last year tho, I have stopped paying attention to the ‘may contain traces of nuts’ or ‘packed in a facility which processes nuts, peanuts, sesame’ signs on packets. These warning signs are on everything from pumpkin seeds, dark chocolate, to kids fruit snacks.  It was only yesterday, when I was reading the comments on the incredibly useful Food Allergy and Anaphylaxis Network facebook wall about cooking for an allergic child that I realised some parents out there really are more diligent with only providing “nut free” foods.

Part of me feels that well, we’ve gone about a year without any problems even whilst eating the foods with warning signs, so why change?  The signs are on almost all the stuff we eat that’s been processed in any way and there is nothing at all about nuts/peanuts etc on our flours for example.  I can’t imagine cutting out even more foods from Adam’s already quite limited (tho nutritious!) diet, without a strong reason for doing so.  We have no idea whether Adam has a severe allergy to nuts or peanuts as he’s never eaten them in his life, thank God, so it’s an unknown (apart from the test results).

I guess I’ll need to do some more research into this!  In the meantime, I wonder how everyone else manages this balance between what is the most cautious, safe, ideal route  and the practicality of providing a balanced, relatively varied diet for your child?

Always learning

3 May
Its amazing how you can live with a medical condition for years and yet constantly be learning about it.  We’ve known Adam has allergies now for over 2 years and yet we still can’t say we are 100% sure what a severe reaction looks like that would warrant a hospital visit, for example.  We were once told off by a young doctor (with attitude!) when we were in A&E with Adam having an asthma attack, for not having brought Adam in to A&E weeks earlier when his lip had swollen up from eating smoked salmon.  We tried to explain to the doctor that coming into hospital is really the last thing we want to do (Adam is inconsolable in hospitals and becomes absolutely distraught even if he needs to be weighed, let alone examined!) and that we were watching extremely closely for any worsening of his allergic reaction, with an Epi-pen at the ready.
Today for example, I gave Adam some beef to try.  I’ve thought for about 6 months now that he might be allergic to it but wanted to try again (I re-try foods that I suspect might have caused Adam eczema every few months).  I never re-try foods that have caused vomiting, swelling or immediate hives.  Anyway, within a few minutes he needed to poo and then a few minutes later seemed to have a full blown, bad cold. He was sneezing like crazy and started coughing and coughing and then began wheezing slightly.  He asked for his inhaler himself which never happens unless he’s feeling really unwell.  I thought perhaps he really did have a sudden cold and gave him Montelukast which he’s been prescribed for when he gets a cold and starts wheezing (to help stave off an asthma attack).  I kept checking for hives and didn’t find any.  Weirdly enough, all his sneezing, runny nose, coughing and wheezing disappeared within an hour.  His wheezing and coughing were immediately relieved by the inhaler and Montelukast thank God and his diarrhoea carried on for the rest of the day.
So after Adam’s fallen asleep I’ve had a quick look again at what constitute the symptoms of an allergic reaction. It seems that my assumption that hives MUST be present is completely wrong and that Adam most probably was having an allergic reaction this afternoon and not a freak one hour bad cold!
Have you been uncertain before about whether what you’re seeing is an allergic reaction or not?  Has your child had a moderate reaction without any hives appearing?  I’d be really interested to know whether people have ever been unsure about whether to go to hospital or not or whether you have a list of specific symptoms that you would always definitely go to hospital with?

One of those days

22 Apr

It’s been one of those days when all the little things add up and seem a bit overwhelming.  People have mentioned before that I ‘just get on with’ dealing with Adam’s allergies instead of moaning about it. But I do have days when I feel a bit lost in terms of knowing what to cook and feel pretty sad that I can’t give my son all the exciting foods, particularly fruit and vegetables that are in season.  I even ended up crying a bit in Sainsbury’s when we popped in on the way home to pick up a few things (and to wake up our little boy who was falling asleep in his car seat!).  It reminded me so clearly of why I try and avoid supermarkets at all costs.  The place is absolutely chock full of stuff Adam cannot eat (probably 99% of what’s on sale) and is also packed full with junk food that I would not want him to eat even if he had no allergies.  I was telling a friend this week, who was mentioning boycotting supermarkets, that allergies are such as blessing in many ways, not least because they mean you can’t just pick up whatever sugar/fat/salt combination that’s on offer (e.g. cakes, cookies).  Everything is so processed and so low on nutrition. Michael Pollan writes in a really engaging way about these exact sort of issues.  Check him out here.

Then again I feel incredibly blessed that although the overwhelming majority of foods in a supermarket tend to be unsafe for Adam, there are still amazing things we can still buy him.  So today we picked up some fresh pineapple and coconut for him, focusing on the things he can have.  I’m a bit gobsmacked that so far, he almost never ever asks for anything in a shop that he hasn’t already had before (and so knows is ‘healthy’ for him).  Similarly, when we’re with other kids, he never asks for their food or shows any interest in it.  In the house he also doesn’t get upset if we say something isn’t safe for him (if we have tomatoes our for example).

Apart from the low nutrition of so much supermarket ‘food’, there is the issue of the environmental and human health impact of the packaging.  Check out this article on how the plastics used to package food leach chemicals into our food. Cardboard can also leach toxic chemicals into our food (which makes me feel pretty awful for having let Adam chew on cardboard when he was tiny!).  So by being forced to cook from scratch almost all our food, we’re avoiding a lot of the chemicals that researchers and health experts the world over are increasingly getting worried about.

In addition, we’re side-stepping the whole kid-food industry where rubbish food is packaged in a way to appeal to little kids with ‘fun ‘characters etc.  Thankfully we don’t have  a TV so our son has seen almost no adverts in his life so far.  But I know that other friend’s kids can have tantrums asking for foods that are packaged specifically for kids, just because they like the pictures or associate them with characters they’ve seen on friend’s clothes, bags, wellies etc (have you noticed how ubiquitous ‘characters’ really are?!).  Sue Palmer, in 21st Century Boys, covers the incredibly aggressive marketing of low/no-nutrition foods at children.  I’m currently absorbed in reading Joel Bakan’s Childhood Under Siege which covers in detail just how, why and by whom our kids are being ‘ruthlessly’ targeted by corporations in ways that lead them to have much less healthy lives.  It’s nice to feel that for the time being, you’re  managing to keep your own child from being a target!

 

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