So as a follow on to my recent School and separation anxiety. blog. I have finally got the courage to write another blog that is very personal. Something I try very hard to avoid talking about (though in reality its near impossible) as I do not want it to define me, my son or family. There is so much more to us as a family and we do not want it to control or dictate our lives. Though the reality is it does, however much we try. People always have questions to ask, which is only right to answer.
‘Defined by a label’ – I am one of those allergy mum’s!
If you have been watching the news recently you maybe aware of the case being held against ‘pret a manger’ in regards to Natasha Ednan-Laperouse death. If the recent news has told us anything, the world of Allergies is still very much misunderstood and more knowledge is needed to support those living with severe life threatening allergies.
So I have mentioned before in previous blogs that one of my sons suffers from severe allergies, He is Anaphylaxis to all Nuts (not just peanuts as many assume) and Eggs.
I am essentially a very lucky and thankful mum to two wonderful, gorgeous cheeky boys one is 8 years old space obsessed, Lego mad and a secret mad scientist. Who has Life threatening food allergies. His 5-year-old brother on the other hand thinks he is a superhero captain who is at one with mud, anything creative and the outdoors. He appears to have been dealt the lucky card so far escaping any allergies of his own. On the surface so far as a rule life has been a breeze for him.
In 2012 ‘a label’ was placed on my then 2-year-old eldest son and us as a family that is hard to hide from. I detest the word ‘label’ and everything that can be associated with it. I actually hate in many ways the fact that we were given labels ‘oh he’s the boy with the allergies’, ‘ oh that is the mum with the allergy son’ more than the actual Allergies themselves. For me and my son it has been harder to deal with the labels given and assumptions made than living with the actual allergies. Society in general is quick to judge, past comment, make assumptions and create those theories.
SEVERE Food allergies present many challenges it is a type of disability, and exclusion is something you learn to live with. He has lived with these most of his life. As a family we have learned to live with it as best as you can.
NO – We did not choose them? It is not a choice!
YES- We would do absolutely anything to not have Allergies in our lives.
If there was a cure we would be the first in the line.
When my son asked me – Why me? I answered honesty I don’t know, he was absolutely shocked and distraught when i said if i could i would chop of both my arms and legs if it didn’t mean he had to live with them.
From 6 weeks my eldest suffered with severe eczema from head to foot and started to show immediate reactions to food when we were weaning him. At two he was diagnosed with allergies to milk, soya, egg, later on he was diagnosed with all nuts , mustard and sesame. After having his first serious reaction to Eggs at 9 mths. He has since outgrown the milk, soya, mustard and sesame allergies with the help of food challenges and using what is known as a food ladders.
However he still lives with Severe life threatening All nuts and Egg allergies and probably will for the rest of his life.
He had his first severe anaphylactic aged 2 and has had a few more since alongside mild/ moderate reactions on numerous occasions. Sometimes we have known what has caused them other times not.
The early signs he had allergies were (though we didn’t know it at the time) as a baby he suffered from colic, reflux, bad tummy ache, lovely slimy green poos, weak immune, pale skin, sunken eyes, eczema and refusing to feed as a baby. We knew he was in pain however had no idea how to help or what the cause was.
At the time we knew we shouldn’t just listen to our GP who just wasn’t interested saying it was probably just Reflux and he would outgrow it. There was no mention it could be allergies or intolerances however our gut told us different as there seem to be no simple cure for his reflux, eczema and obvious pain. However we struggled to find answers. I have heard on average it can take up to 4 years for a child to be correctly diagnosed. For his eczema we were sent away with steroid creams and told it is what it is, basically just get on with it. The steroids just seem to make it worse.
Luckily for us we had an amazing Health visitor who stepped in and referred us to a Eczema Clinic at 6mths, it was here that they instantly took one look at him and we learnt his eczema was probably caused by food allergies and the environment. After skin pricks and blood tests, milk was removed from his diet and the eczema went away within two weeks. literally I stopped feeding he stopped screaming, it was like a miracle. But this wasn’t to be the end of it.
Over the next few years he had many reactions, resulting in hospital visits some via ambulance, he became allergic to other foods confirmed by skin pricks, reactions and blood tests ( we were to learn that he didn’t just need to consume them they could be caused by touch and were Airborne) and we finally found a brilliant doctor at the allergy clinic. It wasn’t just eczema we had to deal with it was now food allergies to. We were told some Food allergies he would outgrow and some he would probably never outgrow (they have given him 1 in 1000 chance of outgrowing the nut allergy to this day).
Antihistamines, inhalers and adrenaline auto-injectors became part of our lives and go everywhere with us. We also learnt he may not just have instant reactions but it is possible to have delayed reaction (up to 72 hrs after first contact) and repeat reactions to the same reaction.
It’s not a club we asked to join, or one I ever expected to be part of but I have the pleasure of being given the unwanted label of an allergy mum. It often seems that unless you happen to know someone who has a severely allergic child, you are on a lonely path without a map. You end up using the words ‘Anaphylaxis’ and ‘epi-pens’ way to much even when you don’t want to, to the point of boredom, they become everyday vocabulary. Allergies have an emotional impact on your lives, you have to learn to cope with your fears and hide the tears. It affects the whole family. Having an anaphylactic child takes the stress of living with allergies to the extreme.
Anaphylaxis is a life threatening condition. Our child’s safety is literally in our hands that is scary!
– I often wonder can I keep my child safe or even get him into adulthood in one piece.
– Will we recognise a severe reaction quick enough and act fast enough?
– Will we know what to do ?
– Will I even be there?
– Am I likely to overreact and give the adrenaline unnecessarily?
– understanding experts opinions vary a lot. you are the one who has to weigh opinions up against others verses your Childs history.
– You spend many an hour getting as much information as you can, to give your child the right support and you the confidence in your decisions.
Research into the reason why children die from Anaphylaxis concludes that factors at play our recognising how severe the reaction was and adrenaline is often not given quick enough. Constantly being aware and reacting quickly is undoubtedly a vital factor in keeping our child safe. We know adrenaline auto – injectors (often known as Epi-pens) are life saving if given quickly and correctly because they work instantly to reverse the symptoms of an anaphylactic reaction. normalizing blood pressure and circulation to the body organs.
In short it is better to give a unneccessory dose of adrenaline than not to have used it when it was needed. We also know they don’t always work alone (often they only give you time to get to a hospital where additional help is often needed including your child being pumped full of steroids) and they are not always a magic solution, Sometimes there is no stopping or reversing the anaphylaxis reaction or the pens just dont work for some reason in some cases. An anaphylactic reaction is alarming to witness mostly because of the sudden speed with which it occurs. Watching your child turn blue struggling to breath and becoming non-responsive is scary beyond belief especially as the reality is you have no control over the outcome and knowing it can be life threatening. resulting in the possibility of spending time in Children critical care units or at worse intensive care. This is all caused by food, which is essential for survival and should be seen as something to enjoy.
Having a child with a food allergy has a great impact on quality of life, creating understandably anxieties for the present and the future. You spend your life reading labels. The reality is that Ingredients labels can be frustrating. It is frustrating to find out what actually goes into a simple biscuit or cake. The ‘contains’ or ‘allergy information’ labels on packaging do make shopping easier but even when you have been doing it for years and our an experience label reader. It’s easy to make mistakes if you are not always on guard. Its annoying when you enter a shop or restaurant to see spills or loose food that might cause a reaction or to be faced with someone who does not appear to care.
The ‘May contain’ debate – we as a family despair at this label, it is the most unhelpful and contentions statement that can be written on a food product. It is unhelpful because I want to know does it? or does it not? contain any nuts not that it might!
It is also contentious because in our society/culture some believe that manufacturers are just covering themselves against being sued. However when it comes to ‘may contain’ evidence suggest that there is a 1 in 3 chance that the allergy is present. So its like playing Russian roulette. There is a small but significant risk that exists which cannot be ignored Yes as a result we miss out on foods that could potentially be safe but the risks dictates are choice. Seeing as our son who has had two anaphylaxis reactions to ‘may contain’ items we avoid at all costs now ( Of all things Tin tomatoes and ice cream being the culprits ‘may contain’ Tree nuts / Hazelnuts).
You feel like your child’s life is in your hands as you shop for food. In short food shopping is a huge challenge. However the reality is there is food everywhere – there are few environments that do not include food. This makes going anywhere harder: visiting friends and family, socializing, Farms, Zoos, eating meals or snacks out, Ice creams in the park are to name a few.
Whilst bringing up an allergy child we have experienced every emotion going as parents Felt scared, fearful (for the present and the future teenage years), angry, guilty, anxious, in denial (it took us a long time to fully come to terms with and accept the reality of living with allergies) and at times felt completely hopeless. Wondered does anyone really understand? It can be a lonely business and stressful as parents and for a child living with it.
Asking have I done anything wrong?
Have I done everything in my power to try to prevent allergies developing?
Its heartbreaking but we can not allow it to consume the here and now or the years ahead. It is not our fault, we are not to blame and its as simple as that! Over the years both myself and husband have had to deal with our own nightmares however it does becomes manageable. Dealing with family and friends offers its own challenges, some are fantastic and offer endless support, whilst others will try to find answers and give you advice, whether you want it or not! A few will make you question whether they have heard you and actually get it. Awkward situations make you feel like a fussy over-protective mum, adding to which there is concern a friend is actually helping you out or trying to offer support. The last thing you want to do is cause offence by checking for potential risks. It is especially frustrating as a mum when others do not take it seriously, roll their eyes, or confuse a serious food allergy with food intolerance.
There are so many key moments in a child’s life that are made harder by allergies
A big challenge to overcome is trusting other people to look after your child, if they will have them on their own and don’t have fear themselves. It takes a great leap of faith to trust someone to provide food for your child or childcare. One thing you learn quickly that it is essential that you have to be over-protective in certain situations – Supervision against risk. However when others offer to produce safe foods or have your child alone for a few hours you feel no end of gratitude.
Holidays present another issue, they need extra planning and in some cases a lot, Allergies dictate where you can go, concerns over language barriers, the medical care available, Aeroplanes are scary – What if they have a reaction in the air? Nuts on board planes present an issue. To top it all of you pay a premium on Travel Insurance costing you more.
School holds many fears and issues to overcome from snacks to, school lunches, staff training, medicine at school (who do you trust?), lunch time supervision, no swapping or sharing, school trips, will they be bullied or teased because of their allergies? play dates, parties (To stay or not to stay? were they not invited because of their allergies? birthday cakes present high risks), clubs and sports.
Exclusion is a big issue you have to deal with. often your child will be left out or presented with something different (those this is meant with the best intention to include him it can often actually exclude and make him feel different). Sometimes in your head you question- hang on a minute you know about his allergies why do you still exclude him? There is no magic solution, however we are very lucky to have some amazing friends and parents at my son’s school who go above and beyond. Having friends who have shared an understanding of what we are going though has been my lifeline at times, offering comfort and reassurance We truly appreciate this as we know the challenges it presents. As parents all we want is inclusion for him, as normal as possible childhood with the same opportunities as others his age. Inclusion and not exclusion is a big thing !!!
There is a fine balance between allowing your child a normal life and keeping them safe!
As a mum I have also had to deal with the fear of having an another allergic child after my eldest. It turned out this was not the case, however you spend 9mths paranoid and the early years of the second childs life worrying. Most of the theories you get told behind preventing your child against allergies in my own personal opinion are untrue and it is just a guessing game still. One of my births was natural (eldest), one was c-section (youngest). One was breastfed (eldest) one was bottled (youngest). I ate nuts in my first pregnancy because I was a big nut eater before allergies entered our lives. However I did not in my second. Personally I think there are no real conclusive answers to preventing allergies it’s just pot luck!
I worry alot about my youngest needs,
– does he get enough attention as it feels like his brother gets all the attention sometimes?
– Does he feel it’s all about his brother?
-does he feel he gets all the special attention?
-Does he get enough himself?
-Does he feel any burden or responsiblity or anxiety living with a brother with allergies?
–Does he feel any resentment due to denied foods that he likes but can’t have due to his brother (he loves eggs and only eats them out the house away from our eldest)?
As a family we try our hardest to gain a realistic acceptance and understanding of living with allergies. So we can all enjoy life to the full. We have tried to give our sons as normal as possible childhoods despite allergies. We take days out, holidays and eat meals out.
As parents we try to teach him how to face the dangers calmly, whilst sometimes containing our own panic so he can learn by our example and help him to cope practically with whatever life throws his/our way. Theres no doubt that food allergies can be worrying. I’d be lying if I told you any different. The risks are certainly manageable with the right support, knowledge and understanding. Everyday we are trying/ learning how to raise our son in an atmosphere of safety and stability. We try to give him the tools to empower him to decide independently in situations where food is present. How to take his medication and to accept his condition as just something to be lived with.
It’s the hours between food that really matter.
Sometimes the support and help is hard to come by
(those who have travelled down the allergy road will know this only to well).
Gp’s struggle to suppor families in line with their allergy clinics, information on the television and internet can be portrayed incorrectly or questionably. Creating stereotypes. As he grows older increased independence brings fear. Will he be responsible enough about his allergies? when should he carry his own medicines? will he take chances or risks with his allergies?
In short : No matter how well we manage our Childs allergies and try to help him on his way to looking after himself with confidence.
We would all love a cure to be rid of the daily threat to their lives.
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