Tuesday 24 January 2012

Food Allergy and Intolerance Week - The real impact

Food Allergy & Intolerance Week runs from 23rd to 29th January and is looking to raise awareness not just of the physical effects of these conditions, but the social impact they have. Allergy UK will be providing help and support throughout the week for the millions of sufferers in the UK.

Well with having a Bob in the family I really thought that by writing a post it might just help one other struggling person to realise that its not really quite the end of the world. Yes it is hard, it is life changing and it really takes a lot more thought and time than it did before.

It has an impact on everybody in the family, and affects every aspect of every waking minute of every day for the rest of that childs life.

Bob is allergic to dairy, eggs, nuts and kiwi and intolerant to wheat, gluten, banana, rice and honey.

This leaves a very very limited list of foods that can be bought pre-made/packaged/jarred etc as not only do you have to look out for the obvious foods but you also need to know about linked food groups. I make my own soya yoghurt as then I know what is in it (nothing but the soya beans because I also make my own soya milk), but if it was just me that was eating it I could help it thicken by adding dried goats milk - but it contains the same protein as cows milk and therefore whilst it is ok for me as I am only lactose intolerant it is no use to Bob who is allergic to the protein in the milk.

 Shopping is a huge time consuming pastime. You cannot use internet shopping with children like Bob, you cannot take that risk that some ingredient may have changed. . You may buy say a jar of asda sweet and sour sauce to use to add to mince. That jar is read in the shop in case anything in it has changed. It is read again when it is taken out of the cupboard just in case you missed something the first time round. People say "oh it only says may contain traces of" but if you picked up something that said "may contain traces of cyanide" would you feed it to your child? No I didn't think so well that is what it is like for families like ours - potentially lethal.

It impacts of every member of the family, his sister cannot have anything with nuts in in the house as nuts can be dangerous even second hand. She reads every packet, she scrutinises every new food she sees in any of the family members houses before she will allow us to give it to her little brother. She has been present when he has gone into anaphylactic shock, can you even begin to imagine how scary that, and the ensuing adult panic is, on a small child.  She even informed the dentist the other month that the milk and honey soap that she was washing her hands with could not be used near her brother. No young child should need to assume this responsibility but she just does naturally and like all siblings is very fond of her brother.

This 9 year old girl lives, breaths and thinks like no child should have to. The impact on her is  overwhelming to the stage the other month when I got her to fill up the bird feeders in the garden she asked me where the list of ingredients were as how would the birds know if they were allergic to the food if I did not put a list out? No she is not stupid she knows birds can't read but it just goes to show how deeply ingrained the mentality has to be.


But more to the point it has a huge impact on Bob himself. Babies and toddlers need a good relationship with food to see them through to healthy adulthood. Bob never had that, his lasting memories are of pain, and suffering, he learnt to associate eating with horrendous pains - can you imagine labour pains but worse every time you eat something you are intolerant too? Or intense itching, scratching, puffy eyes and unable to breath every time you eat something you are allergic too? Where mummy has to phone for an ambulance,  which  come out and the people in it inflict pain on you when you are already very very scared? How willing would you be to eat. This of course causes failure to thrive and every thing that goes hand in hand with that.

I have to ask you have you tried some of the alternatives? Dairy free cheese? soya milk? gluten free bread? They leave a lot to be desired, whilst I appreciate Bob does not know what cheese, chocolate, bread tastes like to you and I and he does not know any different some of them are fairly rancid. Have you tried making a birthday cake without egg,dairy,wheat and gluten? Its possible I have done it but the result is not overly tasty.

It impacts on a childs social development - we have all been to mother and toddlers and have cute pictures of two children sitting together sharing a soggy biscuit, one suck for me one suck for you. Its a brilliant way of building up their immune systems, but he missed out on all that, when any other child had food he had to be removed from the scene. You take your normal child along to the play park, eating a rusk or something similar as you push them there in their buggy, you get them out and place them in the swing and they rub the food all over the chains - Bob therefore cannot have the chance every normal child has to play in a park, he cant learn to climb  a climbing frame safely for the risk your child has contaminated the play equipment.

You take your child to the doctors/hospital/playgroup and allow them to chew the board books, the toys, or dribble on the floor - all these places are potential death traps for children like Bob. You feed them a bar of chocolate or a bag of wotsits to keep them quiet while your waiting, and their hands go all over the toys.

It is impacting on him more now he is at school, he cannot share/swap playpiece with other children, a normal phase all children go through but he is excluded from it.But again you send your child to school with a normal every day "harmless" food but your child touches doors, chairs, school equipment without washing their hands when they go back in after playtime.

It has a massive impact on him learning the skills of being away from mummy and interacting and communicating with other children, their siblings and their parents. Nobody invites him to play after school, no parent wants the responsibility that comes with that normal act. Even if he takes his own food if you do not live, breath and think food allergies 24/7 then you have the massive risk of cross contamination. He has developed an imaginary friend ( fairly normal behaviour) but his friend bullys him because he is different, or because he cannot come and play, or because he cant eat chocolate.

You take your child out to eat in public places, whether that is a sausage roll from the local bakery when you are rushing round town to a nice family meal in a restaurant. Have you ever watched them in pizza hut or McD's where they go table to table with one cloth supposedly cleaning the tables? They are not they are cross contamination from one area to another!! Not just food but bugs and germs as well. No food outlet that we have found so far apart from ur local Frankie and Bennys can cater safely for his needs. At F&B's we take along Bobs own food and they cook it up and bring it out to him like every other normal person in there and boy oh boy does he feel special. (we cannot go in a bank holiday as they to busy but we live with that).

I know in my house my big worry is cross contamination in the fridge, we have normal milk and cheese for Grandad and Fifi, we have lactose free for me, and we have soya for Bob but it is hard to keep them separate. Must admit I just tend to open everything that is being used from scratch with him, cant risk the half a tin of sweetcorn may have had a splash of milk in it etc. Mummy has a separate fridge/freezer/cupboard for Bob in his own house, and I truly wish I could afford a separate fridge freezer for his stuff but  I can't.

Even something as "simple" as going on holiday means working out where the nearest A&E departments are, if there is not one within 10 miles then they dont go there.

So there you have it - the day to day struggle of a normal family with food allergies. Normal?? Well it is for us.

8 comments:

  1. Oh Elaine, that's just a nightmare, a living nightmare. Poor Bob and you must all worry all the time, there's no having an off day and losing concentration in regards to food is there. You have my utmost sympathy and admiration for coping with these allergies. If Bob has even half of his mums and his grandma's grit and determination, he'll do fine I'm sure. I'm so glad I mentioned that Hipp link to you, it gives them some idea about how complicated allergies can be and how profoundly they affect life. it's just just all about being allergic to nuts is it. xxxx @Chaoskay

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  2. This is all very familiar to me. Two of my four had food allergies... including my first who was a very unsettled baby and I just put it down to incompetent parenting. Getting her diagnosed was just the beginning as I was still breastfeeding her when she had her tests done... so special diet for me for a looong time. But it was all worth it. For a baby who was "unchartable" on the growth charts, she's now a thriving little girl. As they all are... now. But unless you've been through it, you have no idea how hard it is. It's wonderful that you can raise awareness though. Thank you!

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  3. Thanks for writing this blog - your post and those recently by your daughter and neighbour are really good insights into life with a child with severe food allergy. We're early days - our 15-month-old is allergic to eggs, wheat, nuts, banana, sesame, green peas, chickpeas and red lentils.
    It would be amazing to know what products you have found that DO suit little Bob - or any places you feel you can safely go to eat. It's good to know there's a little community of families going through the same crazy stuff and it would be great to share findings!
    Very best wishes
    Alexa (www.yesnobananas.wordpress.com and @foodallergyuk)

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  4. Hello there - I just wanted to say thanks for writing this lovely blog. This piece and those posted recently by your daughter and neighbour are real insights into the craziness of life with a severely food allergic child.
    Your recipes are also fascinating: I plan to try out the egg free meringue and sweet potato pastry as soon as I can.
    We're early days with a 15-month-old with egg, wheat, nut, banana, chickpea, sesame, green pea and red lentil allergies and I too have started a blog about the whole shebang. It's good to know there's a little community of people out there sharing info and advice.
    Talking of which, it would be wonderful if you could namecheck any particular food products or places to go and eat that you've come across... There's so little info out there, really.
    Very best wishes and big hugs to little Bob
    Alexa

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    1. Hi Alexa done you a blog post as promised for this, you and everybody else can find it here. Hopes it is of some use to you. http://fun-as-a-gran.blogspot.com/2012/02/pre-made-foods-that-are-bob-safe.html

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  5. Thank you for including this into the Love Health Blogs showcase - I have worked with children with severe (or so I thought) allergies and learnt very rapidly about how products that essentially look the same can change without you noticing. Big hugs to you and Bob and please, keep telling the world!

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  6. Elaine, I am in tears here! Thanks for making me aware of this post (and the others)I am finding every bit of information helpful right now, I am going to have to be really careful from now on with what I give Millie and I just hope the health professionals can help us soon!

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    1. read and learn is the only way forward. Dont hold your breath for professional help, but I hope you get it.

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