The Allergy Community

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One of the very unexpected outcomes of having a child with multiple severe food and environmental allergies is the community I have found myself in because of them. Allergies tethering us together like the life line of a boat. I was fortunate enough this week to partake in a virtual meet up with other allergy parents whose children all suffer from a severe food allergy. Some had multiple allergies, others were just dealing with one or two. In a very strange way, even though I’d only just met theses people, and only virtually at that, I felt like I had known them all my life! I guess because for most of us, it feels like we can’t even imagine our lives previous to being a parent, and the journey of an allergy parent is often very similar. Our conversation easily flowed between the highs and lows of being an allergy parent and soon moved beyond that to just a conversation about being a prent to young children, which we all know has its very own set of highs and lows. We discussed our pasts, presents and futures, some revealing their new business plans, others how they wanted to ring their husbands neck! It was a breath of fresh air, in those three hours, to see the nodding heads of other parents understanding the anxiety around having your family invited to a resturaunt for dinner, or having to hold your child’s arm for a painful skin prick test, the anticipation that you might soon be rushing to hosptial when your child is trying a new food. All of which we had all experienced many times.

I’m lucky enough to have people in Harrisons life who do their utter most best to keep him safe, not just family, but friends, teachers, sometimes even complete strangers.  I have talked incessantly to all of them about Harrisons allergies and I am very grateful to all their ears for the hours they’ve endured listening to me drone on, but to talk to other mums who really understood our reality was just something else. These are mums that on any other walk of life I wouldn’t have met. Spread across the country we each sat in our respective living rooms, kitchens, children’s play rooms, talking and drinking into the wee hours of the morning.

Thank you for welcoming me into your community, I look forward to many more virtual meet ups and hopefully one day we’ll be lucky enough to meet in the real world too!

 

 

 

 

Living With Allergies During a Pandemic

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Its been widly shared by allergy parents during the out outbreak of the Corona Virus that we were already well eqiupied to live through a pamdemic like this.  In this post I’m going to tell you just exactly why, and why we have the right to say it.

Firstly let me start you off with the washing of the hands.  Every mother around the world is now on a thrice daily battle to get their little Angels to wash their hands, not an easy feat when they are in a staring competition with their favourite ice lolly.  Not for allergy mums though!  We know, that no matter what, before your little ones start to chow down on their favourite meals or snacks, they need to thoroughly wash their hands.  Allergens are sticky and resilient and like to make life as difficult as possible so hand sanitizing will not work, its a 20second wash under the taps no exception.  Something I’m happy for now, as mine were on auto pilot running to the toilet the second we got home, take that allergens and corona virus!

Secondly resturants and cafes closing, not a problem.  I’ve been described as pack horse by my mother in law since the day Harrison was born.  I’ve never had the luxery of leaving the house with a ‘We can just pick something up’ attitude.  No allergy mum has.  In the early days after Harrison’s allergy diagnosis on occasion I left the house without a snack, it soon sunk in that if I leave the house without food for my boy my boy will most likely not be eating again till we are home, not great if your planning a four hour trip.  Now it’s pretty much a standard to bring breakfast, lunch and dinner with us to a restaurant for cover every eventuality. As fantastic as it is to see so much more allergy related awareness in eateries these days, being aware doesn’t always correlate to safe food.

Thirdly social distancing.  I bring you back to my first point of the washing of the hands, something that should have been happening by everyone long before Covid popped up its ugly head, but no, people aren’t always the cleanest and children even less so.  Keeping your allergy child away from allergen contaminated hands is not an easy feat, and yet its a challenge that all allergy mums have to champion.  Its our second nature to bat away the hand of a well meaning Granny and politely ask if their hands are clean, or question the hairdresser about what they had for breakfast before they lay a finger on a single hair on child’s head.  It’s necessary as it keeps them safe.  It’s also necessary at child’s birthday party to sit further away from other guests to stop any cross contamination of food, or eager fingers darting onto your child’s plate to share a chip.

Fourth and finally hoarding.  We never want our babies to go hungry and know that product lines change, stock can be difficult to get a hold of and when there is a deal on that usually very expensive allergy friendly meal, you stock up.  Hording is just a usual shop for an allergy mummy.  I have yet to visit an allergy mums house where the cupboards aren’t full to the brim with safe foods for their family.

It is currently allergy awareness month and this week Food Allergy Awareness is being highlighted.  The precautions taking place to avoid being infected with Covid-19 are the precautions that allergy familys have to take every day to protect their loved ones.  I’m hoping that at the end of this national crisis, everyone will hopefully come away from it with more compassion and understanding for those who already have to live in what can be a scary world.

 

 

Our Food Can’t Live Withouts

In our last three and half years with Harrison we have become accustom to life and living with his allergies, never leaving the house without his epi pens, always having atleast two packs of baby wipes on us; unfortunately a necessary evil, and always bringing along safe foods for Harrison while out and about. Our monthly/ weekly shops now occur with regularity and ease. These are our staples for an easier life with as many allergies as Harrison.

Bread:
A staple in most of our lives and diets, unfortunately bread safe for Harrison was one of the trickier foods to find. Although the amount of gluten free breads out there are vast, Harrison has so many allergies it was difficult to find one that excluded them all. Finally we found wheat-freebakerydirect.com a company based in Scotland who not only specialised in wheat free bread substitutes they also had sections that were dairy and egg free too. A completely nut free factory to put our minds at rest, not only do they provide a brown and white sliced loaf they also have every bread option to suit the whole family’s needs; Pizza bases, pittas, nan, you name it, even a good old tea cake for elevensies’! we order monthly now as the bread can be frozen. Also good to know the company are fab with keeping you up to date with your order.

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Milk:
Currently Harrison is on Quinoa milk. It doesn’t taste anywhere as near bad as you are imagining and he seems to love it. Not quite got used to it in my tea yet but after having Dairy, Soya and Nut milks ruled out. Its great finding a milk he can enjoy.  Still to try it in a pan cake. waitrose.com

Butter:
There are hundreds of dairy free butter alternatives to choose from these days, and I would say we have probably tried and tested the majority. The ones that we always come back to have to be  Pure sunflower or Olive based butter and Vitalite. the Pure range is very light and smooth and great as a replacement for butter when cooking. The Vitalite tastes more like real butter, a slightly more salty after taste which works really well for baking cakes!

Cheese:
Violife have saved us when it comes to cheese alternative products, I can’t sing their praises enough. coconut based, their cheeses definitely hit the spot. the original cream cheese is not dissimilar to another well known brand of dairy based cheese (sounds like the name of a Tom Hanks film) They have also reworked the cheddar block and slices so their texture is more like what we are used to, and their block of blue is to die for. Check them out here violifefoods.com

 

Pasta:
The variety out there for gluten free pasta is immense, personally our favourites are Tesco own brand gluten free pasta. Sainsbury’s own gluten free macaroni and a new product on the shelves in Waitrose, Ugo Thrive raviolini filled with pumpkin and sage. A big hit for the whole family and only takes a minute to cook. Ugo Thrive is also free from the top 14 allergens.

 

Gravy:
This might seem like an odd one, but harry loves his mash, sausages and gravy, unfortunately gluten free gravy granules aren’t easily come by. Tesco however have brought out there own free from versions which go down a treat!  Its vegetable based so even me, the vegan mum, can enjoy!

Sweet Treats:
One of our biggest fears when we first found out about Harry’s allergies was that he would miss out on the simple pleasures in life like chocolate, cakes and all the sweet treats children should get to enjoy. I’m am so happy to say that we have a stock pile of suitable free from treats for Harry which he enjoys on probably a far to regular basis.

Tesco Free From chocolate in both ‘Milk’ and white variety are his favourite. Although these do contain soya letchins. For completely free of the top 14 allergens I would recommend Essy and Bella  Their chocolate and factory is free from the top 14 allergens and any animal products.

Doves farm biscuits which are gluten, wheat, egg, peanut, soya and milk free come in a variety of different flavours and are super yummy. Harry’s favs are chocolate chip, obviously, and mummy here loves a ginger!

For a long time Harry kept asking me for squirty cream, it was a challenge to find one and after trolling the internet far and wide I actually managed to find two brands which were harry friendly! Rice Whip and Schlagfix Schlagcreme Rice whip I have only managed to purchase once as it seems to never be in stock on my regular shopping sites but we actually prefer the Schlagfox brand anyway, much sweeter and very similar to the usual whipped spray cream. Free from everything harry is allergic to and vegan but god knows what’s made of.  One of the ingredients listed has 28 letters in!

 

 

 

 

Skin Prick Testing The Good, The Bad and the Very Ugly

Anyone who has an allergy baby knows that along with blood tests most peadatricians will also refer you to an allergy specialist for skin prick testing. For those of you who are still yet to go through this process I’d like to walk you through it as I’d never even heard of skin prick testing before our referral, and as difficult as it is for you to watch someone inflict pain on your little one the results make life in one sense a little easier for them.

The first time Harry had skin prick testing he was just over 8 months, he’s now just had his fourth appointment at two years and four months. When we furst found out abiut Harrys allergies we were reffered to an NHS appointment, but as Harry seemed to be reacting to everything we were feeding him we decided to see a specialist sooner than the four month wait we were looking at.

Dr Du Toit was lovely, he listened to our concerns and quite happily tested for anything we asked him to, along with his reccomedations for common similar allergies. We knew at this point from the blood test that Harry was allergic to peanuts, Wheat, Dairy, Egg, Soya, and Dogs. Dr Du Toit decided not to test for those again, deciding to test for grains containing gluten such as oats and lentil, tree nuts – pine almond, hazle and walnut; fish, cats, chicken as this was a concern of ours, dustmites, banana, tomatoes, and crustaceans. Once we had decided what we were testing for we were passed onto the burse who carries out the procedure.

 The nurse initially makes a grid on the arm marking out where she is going to test for the allergen she then places a drop of what you are testing for onto the skin and pricks ot with a needle.This continues on till all the allergens have been tested for. It is not plesant, Harry has cried at every appointment and in some cases we have stopped the testing as he was getting to distressed. You then have to wait ten minutes for the results to show. After ten minutes the nurse then measures any hives. 

Harrys last test where he was tested for Fish and Peas, the fish showed as 10 millimetres and the peas as 4 millimetres. You then go back to the doctor and talk through the results. Anything 4 and below you can move onto a food challenge with where Harry will have to eat a pea in hospital where he’ll be monitored over a number of hours. Anything over 4mm should be avoided. Nuts have to show as 0mm before they can be set as a food challenge in hospital. 

I hope this makes the idea of skin prick testing a bit easier for those who have to go through the test, or have to take their little ones. It’s definitely helped us avoid food he os allergic to and keep track.of how his body is dealing with his allergies

Weaning Round 2

I don’t know how its come around so quickly but here we are again pureeing everything in sight, and so far so good. We actually had a fighting chance this time as I had Jos allergy tested before I introduced any foods, and although at her age these results are inconclusive the all clear certainly gave me the confidence to begin. In our fight to try and reduce if any allergies Jos may have we were advised by Harry’s allergy specialist to wean early, at 4months. So far success! I’m going old school and pureeing everything from scratch so there can be no doubt if she does have a reaction what it is to. So far she has been enjoying, carrots, sweet potato, sweet corn and avocado with no one having to rush off to the hospital. I’m very aware that we are only at the beginning of her food journey and managing one child with food allergies and one without is going to have its own complications but it’s definitely a weight off both our shoulders for the time being.

Harry is especially enjoying feeding his little sister too!

5 Top Tips for the New Allergy Parent

We have been in the allergy game for a while now and it made me think, what advice would I have been grateful for when we first found out about Harry’s allergies to make life a little easier. These are my Top 5

  1. Wipes. For any new parent the introduction of wet wipes to you life is a marvel. Not only are these wipes used for wiping bums and snotty noses but they are also used to clean the house, wipe down stains and even yourself if it’s a particular busy morning. You all know what I’m talking about. But for you the allergy mum they will be your biggest tool to help reduce contamination of your little one. Have a pack to hand at all times, use them to  wipe down tables in restaurants, toys at toddler groups, messy hands and faces of friends and family, and their own messy hands. This can and will protect your little one from a number of allergens. If you are worried about the damage to the planet of using so many wet wipes a day we have also in the past used a 100% natural sanitising water which was just as effective. (sanitising spray)
  2. Snacks. Unlike most mums out with their toddlers popping to the shop while out to grab a bag of crisps or your toddlers favourite snack is not going to happen. Buy suitable snacks in bulk and keep stocked up. I tend to go out with quite a few options, if little Larry is having a biscuit you can be damn sure my little Harry wants one too, and vice versa, its share and share alike with toddlers.
  3. Medipack. This one isn’t really a tip but a vital, create your own little medipack with everything you need that can easily fit into your baby bag. I have a largish purse which contains two epipens, a bottle of piriton, a little spoon, his inhailer and ventilator, calpol sachets and a little tube of steroid cream. It goes everywhere and is never opened at home. At home we have a medicine cupboard with all the extras. this pack isn’t opened so that we know at all times we have everything we need to make sure Harry is ok in an emergency or if he’s having a severe reaction.
  4. Call ahead. Although the world is definitely catering more towards those with allergies its always best to call ahead and check if the restaurant you are planning to eat at will be able to cook a dish for your little one. There is nothing worse than a hungry toddler and although we know they would love to live on snacks we also know unfortunately they can’t. We have in the past brought a precooked meal with us having asked in advance of the restaurant if they are happy with this when they can’t provide one. Nine times out of ten they are happy to oblige and plate up the meal for us. For Harry the most difficult meal tends to be dessert, when everyone else is tucking into an ice-cream or chocolate cake he can only have the fruit option so we have now taken to packing dessert too. I have a little cooler bag and as soon as I get to the restaurant I ask them to pop it in the freezer, Ice-cream and cake galore.
  5. Be calm. Its not easy but without being calm you are never going to enjoy the quality time you have with your little one. Be reassured by your wipes, sprays and medipack and once a month remind yourself of the signs and steps you need to take if your child does have an anaphalactic reaction. Remind friends you are with of your little ones allergies, our friends are amazing at looking out for our little boy too. They all panic at the sight of a nut too now.

    With all these in place hopefully your nest outing won’t be so stressful and you and your little one will be able to play and eat with peaceful minds.

Facing Our Fears – an actual attack

The worst thing about having an allergy baby isn’t the difficulty in finding foods they can eat or substitutions that taste somewhere near to the real thing or the daily monotony of wiping down everything they come into contact with, it’s the thought ‘what if I miss that moment and somehow he comes into contact with a nut’.

We finally had to face that fear the night that our little Jos was born. After a long day in the hospital for Harry it was time to say goodbye to mummy and his new baby sister and head home with daddy. I had to stay in the hospital that night and this would be my first night away from my little boy, something I’d dreaded ever since we were told about his allergies, as it turns out with good reason.

At 11pm when the ward was finally getting peaceful and I had just dosed off a nurse woke me up to say that my little boy and husband were downstairs waiting for me. I was so confused with the lack of sleep I reassured her that they knew I was staying in so couldn’t be here to pick me up, besides it was far too late for my little boy to be out of bed anyway.

But they were indeed downstairs having been ambulanced in to A&E. Harry after going to sleep woke up screaming then shortly after that started struggling to breath. His brilliant dad and my wonderful husband called the fantastic 111 service who, while hubby was on the phone advised him to administer the epi pen when harry finally collapsed after not being able to get enough air through his swollen throat into his lungs.

We still do not know what set off the attack. We assume he must have come into contact with some nut protein during the day but to be honest it could have been anything.  So many hands and kisses congratulating him on his achievement we couldn’t track down every nurse or doctor that he’d met to ask them what they had eaten that day. Believe me we considered it for a long time.

As soon as hubby put the epi-pen into his leg he jumped sky high and started breathing albeit laboured. By the time I’d waddled down from the maternity unit to A&E Harry had been booked in and although very shaken and upset by the whole experience was already on the mend.

Its not an experience I can talk about very easily, just the thought of it makes my own throat close over. Hopefully that’ll be the one and only experience with an epi-pen in his life and now we know for sure that one of us has the balls to actually administer it. My lesson has definitely been learned though, I’m not spending another night away from my little man, babies or otherwise!

 

Merry Christmas and Happy New Year!

Merry Christmas everyone and happy new year, we are very happy here as we’ve gotten through our second Christmas completely allergen free, no wheat, eggs, dairy nuts and the rest – the list is long, and no trips to the hospital!

Tesco’s out did themselves on their free from range, by far the best supermarket to suit our needs, we even managed gluten and dairy free stuffing and gravy this Christmas, something that was hugely lacking last year. The best find by far though has to be Betty Crockers Gluten Free Devil’s Chocolate cake mix, I think I literally screamed when the hubby brought it home. Once baked it was every bit the cake I have been looking for for my little boy. As he is egg free I had to experiment with how much egg replacer to use but on the second batch of cakes I got it right (the equivalent to 6 eggs rather than the four the recipe asks for). To finally have a cake that is actually like cake is a dream come true, especially after his birthday cake disaster, Peppa it may have looked like, cake it did not taste like, bad mummy.

I’ve done a few batches now and added extras like raspberry Jam and wowbutter to make it even more yummy, I think mummy is more taken with this than Harry is, but hey ho I can live with that! For an even easier cheat I realised that their chocolate frosting spread is also wheat, gluten, soya and dairy free too, happy days all round Ii’d say. I’ve asked hubby to come home with no less than six boxes on the next shop, lucky Harry or lucky mummy on this find, i’m not so sure.

Oh I’ve also  frozen and defrosted at room temp some cupcakes I made out of a batch of mix, defrosted they are as lovely as they are freshly made, but make sure you leave this icing off it you’re going to try that!

You can thank me later, enjoy baking!

No literally WOW butter

So the story of how we found out Harry had allergies basically goes that I love peanutbutter and for most of my adult life that is what I had every morning on two pieces of toast. Now I know you aren’t meant to give nuts or peanuts to babies but somehow one morning in our rush to get out of the house to go on our holiday Harry, at just under 6 months old – we were well into the chaos of weaning, managed to either come into contact with or eat some of my peanutbutter toast, after that it was a rush to the hospital and us finding out that we were never to have nuts again……..Untill now!!! kind of… so obviously we still can’t have nuts or peanuts or peanutbutter in the house but I can’t believe how good this peanutbutter alternative is, it’s made mainly from soya and comes in two varieties smooth or my favourite crunchy and it looks, smells and tastes exactly like the real thing! Harry isn’t so taken by it but its now wowbutter on wheat free toast each morning for me! Going to try and make some wowbutter, gluten, egg and dairy free brownies soon, will post the recipe here for you all as soon as I do!

It also comes with handy stickers for lunch boxes to reassure that there are no real nuts in the sandwiches!

http://wowbutter.com

A year on!!

I can’t believe its been a year since my last post, alot has happened since mainly the new addition to the family, Joscelyne! we couldn’t be more chuffed with our new baby girl, but it does come with a whole new set of food issue. As advised by our doctors we shouldn’t restrict her diet or contact with food in any way so as to avoid her having allergies, but how do you do this with a toddler allergic to everything? I’m breastfeeding for the first four months and sneaking in off limits foods during nap and bedtimes to avoid any cross contamination with Harry’s food. I have an inkling already that Jos may also have dairy and fish allergies due to terrible hives and rashes after feeding from me, but we’ve made the decision to still never have any kind of nut in the house as it’s just too high a risk for Harry.

We have our fingers crossed that her allergies are not as severe as his and that she will hopefully grow out of them alot quicker but nothing has been confirmed yet.

The latest update on Harry is that although hes still allergic to nearly everything on the list still, he can now eat chicken and a little soya! This has opened up a whole new world of food for us! Unfortunately getting him to eat, like any toddler, is always tricky, but the fun is in the trying right…..

Will be adding a few more recipes onto the site tonight, have a whole bookfull I need to add now

Emma x