Welcome To YOUR Story Page
Share your experiences with us and help others with their journey into the world of food allergies. You are not alone.
- Tell us your story, what allergies does your child have?
- Have they experienced anaphylaxis?
- How do siblings cope?
- How does your child cope with birthday parties, kindy or school?
- What have you learned along the way?
Help Raise Awareness
Thai ingested 5 teaspoons of real yoghurt containing MILK, our error not his. His reaction played out very differently from anything we had experienced before, I am sharing our story as I’ve always learnt so much from hearing real life experiences and how each reaction can be so different. After 7 years of managing Thai’s food allergies, we had to use the EpiPen for the first time. To be honest, it’s almost a relief for all of us. It didn’t hurt him and it made him feel better within seconds.
Here is our story so others can learn from our experience.
Lesson 1 – READ INGREDIENTS EVERY TIME.
I’d just walked in from the airport after a week of allergy events in Melbourne and we were having coffee and snacks. Thai asked his dad for his soy yoghurt, but after having a few mouthfuls, he asked what flavour it was? There is only one flavour of soy yoghurt so I knew instantly something was wrong. My husband had inadvertently picked up the wrong yoghurt at the supermarket. Lactose free yoghurt has similar packaging to SOY. It was our mistake and proves why it’s so important to read labels every time. We told Thai what had happened and kept positive about how he would react after having eaten 5 teaspoons of yoghurt containing MILK! Thai has had touch reactions before to food and instantly comes up in hives.
We knew we should READ INGREDIENTS EVERY TIME but this time, Carey had made a mistake. Many foods can look the same but ingredients may differ and food companies may occasionally change the content of their products without warning.
We followed his Action Plan and located his EpiPens. To our astonishment, nothing happened, no hives like he normally would get! 30 minutes passed and his skin went red, and his nose ran and his eyes watered. We gave Thai antihistamine as stated in his Action Plan though knowing that antihistamine does not stop anaphylaxis from happening.
I gave him some eye drops to see if that would help. Thai looked so sad when I would not let him play outside and explained how we needed to watch him for a while. He knew something bad was happening though we were all feeling excited he didn’t seem to be reacting too badly. Suddenly he started reacting:
- watery, runny eyes
- runny nose
- nasal congestion
- red face
Then I heard it – the cough! I told Carey things were not good and get ready to call an ambulance. Thai started sweating and then complaining of a sore throat. I told Thai we were probably going to use his EpiPen soon though he begged me not to. There was lots of coughing and hoarseness and Thai said his throat was hurting.
The cough continued. I knew if he wasn’t calm and restrained, the pen could hurt him, or worse still, the adrenaline may not be administered if he knocked it from my hand. I grabbed the trainer pen from my suitcase and sat him between my legs and showed him what we were going to do and how he was going to help me count to 10. We quickly talked about what was happening to his body as we followed our Action Plan. He then asked for the asthma pipe, he remained still and didn’t object as I administered the pen. Within seconds, he was well on the way to getting better. *Instructions for EpiPen use changed in June 2017 –
- Reduced injection time from 10 to 3 seconds – this is based on research confirming delivery of adrenaline through the 3 second delivery time.*
Lesson 2 – REACTIONS CAN VARY EACH TIME.
A person may have one, some, or all of these symptoms. Just because you have never had a severe reaction before, doesn’t mean you won’t have one next time. Always follow your Action Plan! I know this kept me calm in our crisis.
Lesson 3 – DON’T BE AFRAID OF THE EPIPEN.
It can save your child’s life. Thai was begging me not to give it to him, but once he remained still, it did not hurt him. He said it felt just the same as the trainer pen and didn’t hurt.
Lesson 4 – USE YOUR ACTION PLAN.
This helped me to stay focussed and calm though I was not calm inside. I was worried for Thai and struggled to hold back my own tears, my voice shaking as we slowly counted to 10. I knew I had to follow the plan and that it was time to use the EpiPen to make him well again. Please don’t fear the EpiPen.
I’m so thankful for our amazing little boy. Allergy awareness saves lives. I’ve met so many families who have shared their stories. The day before our crisis, a mother was telling me how her daughter moved when she administered the EpiPen. Because of her story, I knew I had to keep Thai calm. It’s comforting to know there are so many of us willing to support and share our experiences to help each other and our own child at a time of crisis.
After Experiencing Anaphylaxis
Don’t forget about siblings who do not have allergies as there is always so much attention paid to the child with allergies. Thai’s older brother was out at the time of our crisis at a soccer match. Even so, the event deeply affected him. The two of them were very close the next day. Afterwards, he told me he didn’t want his little brother to die.
Today has been a day of questions. Thai wondered if he could have died without his EpiPen. He also asked if it was illegal for someone who makes food to start putting egg and milk into their products without a warning.
Lesson 5 – BEFORE YOU LEAVE HOSPITAL, ENSURE YOU GET A NEW SCRIPT FOR AN EPIPEN.
Update your details on the EpiClub and give new expiry dates to your school or kindy.
We updated Thai’s teacher about the weekend events. If this had happened at school in the playground, it would not have been clear what exactly was occurring. It may have looked similar to hay-fever. It was only because we knew Thai had ingested MILK that we were monitoring him closely and watching for any breathing difficulties.
I have printed the following information which can be found on the website from the link shown below. I have highlighted the symptoms Thai experienced as I felt it covered his reaction well. However because each reaction can be different, it is also very informative. http://www.webmd.com/allergies/allergic-symptoms
Lesson 6 – GO OVER ANY CRISIS EVENT AND TALK ABOUT IT WITH YOUR FAMILY.
Thai’s initial symptoms such as sneezing, eyes watering, nose running and feeling hot, did not appear serious to him or us. Thai now knows that he needs to tell a teacher if he experiences any of the symptoms so they can monitor him like we did. Children also have their own way of describing how they are feeling. Thai complained of a sore throat and feeling like he needed his asthma pipe.
Regular practice with a trainer pen will help you feel confident in using your EpiPen. It is important for all family members or friends who care for your child to feel at ease with the pen. Practice with your child so they know what to expect. If they can still talk, get them to help you count to 10 so they feel some involvement and control. Think about how you will hold your child if they become scared and won’t keep still.
I sat Thai between my legs so he felt secure. When I quickly administered the EpiPen, I had one arm around his arms to secure him. Explain to your child that if they move they will not get the medicine or the EpiPen may hurt if it doesn’t go into the fatty part of their leg. I told Thai there would be a quick sting just like an ant bite, but that by the time we started counting to 10, he would be feeling much better. I did not force him when he refused to sit down as I knew he’d respond better by me talking him through. Every child is different. You will know what is best for your child, but having a plan will help you. Decide who will call an ambulance if required. If you are on your own, carry your child to the phone. Never leave them alone. When I telephoned, it felt like I was on the phone for ages. Practice pens help you feel more comfortable and can be purchased from the below link.
Kristin and her family have agreed to share their story. Her daughter Ruby has a nut allergy, and son Weston has an egg allergy. Read their story here
Dean is allergic to Nuts, Eggs, Wheat, Dairy and Soy.
He has already experienced 3 anaphylactic reactions. Below is a video of Dean’s Story.
Two reactions in one month!
Today I am heart broken. Devastated as a mother having to witness my son having an anaphylactic reaction. Having anaphylaxis and living with food allergies is a great challenge on a daily basis. In fact it has made me develop anxiety! My beautiful son Arda took a bite of a cookie that contained egg powder only! Within seconds he said his tummy hurt and said he didn’t want to eat it. Within seconds I noticed that he had taken a bite of an unsafe product and gave him medication. Everything looked fine. He was breathing fine and looked happy till an hour later …
Everything happened so fast that I was about to loose my control, he started coughing, sneezing and crying. He was having a delayed reaction. Within minutes his entire body was red and puffy. His face and eyes were swollen, these were all the symptoms of an anaphylactic reaction! His face was red and purple, he was struggling to breath, in fact he said he couldn’t breath. I chose to drive as I live close to the hospital. As I went to grab Arda to put him in the car he passed out. This is when my heart almost stopped… I am not a calm mother or a strong mother when it comes to illness. I was panicking and by myself when this was happening. I put him in the car and as I was driving he opened his eyes and said his feet hurt. He kept telling me he loves me, I think he was getting quite frightened because I was crying so much. I wish I could have controlled it. I then realised he fainted again. I ran to emergency with two babies in my arms, the nurses ran and took both children from me. I then collapsed on the floor.
Arda opened his eyes as soon as we got there. They treated him very fast. They first checked his breathing as he was struggling and was put on an oxygen mask, and adrenaline was given. When adrenaline is injected, it rapidly reverses the effects of anaphylaxis by reducing throat swelling, opening the airways, and maintaining blood pressure.
The After Shock
We have had 2 reactions in one month, one being an anaphylactic shock and the other an ambulance trip to the hospital and me giving the EpiPen to Arda.
Arda is not the same child anymore. He is extremely angry, seems like he even has a temper and is extremely scared. At night he gets scared of the darkness, I cant leave him for a minute. His eyes are always on me. He asked me on a couple of nights if we should bring the EpiPen into our bed just in case!!! When he went to my brothers house, he asked me if there would be nuts on the floor again. He keeps looking in his medical bag to see if everything is in there. This breaks my heart, as all this thinking is way too much for a 3.5 year old.
Finally the first time in 2 months Arda has gone to bed without me. It’s been a very tiring 2 months and up until this week he wouldn’t play in our garden without me, wouldn’t sit in the lounge without me, leaving him for seconds only started working this week. Tonight was his first night he slept without me and didn’t even call me next to him. We have been taking him out heaps, which has helped. We have been reading more than usual and he has been talking to his almost 2 year old sister about food allergies.
He never ever takes food from the ground anymore. When we are out and he wants an ice cream, he asks me if it is safe and has no egg in them (he is such a darling)… so hopefully in the next few days we may have more changes, I must say … it is all about patience!
My little Max is 13 months old and was just four months when he was diagnosed as having allergies to dairy, wheat and peanuts. I had a very mixed reaction to this diagnosis – I finally had an explanation for his severe, uncontrollable eczema which had required more courses of antibiotics than I’ve ever had in my 36 years; on the other hand nobody wants their child to have to endure food allergies.
It is hard work. As I was breastfeeding Max I excluded his allergens from my diet and his eczema started to improve. By seven months of age his eczema had improved to the point of being moderate but he still spent 24 hours a day in his Scratch Sleeves (little mittens on the end of sleeves to prevent him scratching). I still wasn’t happy with his quality of life so had him tested again. Boy, if I thought allergies to dairy, wheat and peanuts were hard to manage, I was really challenged when we added soy, egg, all tree nuts, fish, sesame, beef and pork to the list of his allergies.
We also found a new home for our beloved cat as he tested allergic to cats too. I was determined to keep breastfeeding him to help his already challenged immune system as much as I could. I excluded all his allergens from my diet. For three months I lived on chicken, fruit, veggies and SUGAR. However, it was all worthwhile as his eczema slowly started to clear. I breastfed until he was 10 months old when it finally got too much for me and my health and happiness started to suffer.
I try not to let food allergies become all-consuming, but it is difficult to switch off from it. As he is allergic to so many protein rich foods he isn’t gaining a lot of weight. Until he hits the magical 10kg mark I can’t get an EpiPen for him and I live with the fear I’m going to need to load adrenaline in a syringe if he has an anaphylactic reaction.
I can’t leave the house without having some food packed for him. I can’t put him on the floor when we are out as he could put something in his mouth and have an allergic reaction; it’s hard enough at home. And what should I actually feed him? I only have half a dozen recipes for him in my repertoire.
We’re going okay, but I know there is a long road ahead for us. He’ll probably grow out of some of his allergies, but I’ve resigned myself to the fact some are likely to remain with him for life. He is such a happy little boy and I hope this will help him get through the tough times ahead.
We have two little poppets, Mr 3 was diagnosed with a dairy allergy when I attempted to wean him at 14 months. It is fairly manageable, with raw dairy products being the main issue, however he is able to have soy so we have fairly easily integrated it in our lives.
Before Christmas, Miss 15 months (then 9 months) had a severe reaction to egg, so our household once again went through the allergy wringer, as we worked out how to manage avoiding dishes heavy in eggs. (the easy ‘boiled egg with soldiers’ that is Mr 3’s favourite lunch option is now served on the ‘high table’ so the little miss can’t reach!). Fortunately, she seems to be coping with small amounts of egg within foods, so cakes/biscuits etc have not been quite as much of an issue as I first feared (I am an enthusiastic home baker, so whilst she will never be able to lick the bowl with me, she can have little tastings of most of the things I cook!).
Our journey does not end there, with Mr 3 very recently being diagnosed with a severe peanut allergy, turning our culinary lives upside down. I am honestly still quite devastated, as our favourite dining out experience is Thai (hello peanut oil!), birthday parties and social gatherings are now full of land mines, and all my shopping trips are currently three times longer than before as I desperately scour packet labels for anything that does not contain trace elements.
We are slowly starting to accept and incorporate this new mini-challenge that life has thrown us… on a positive note, I am even more aware of what I am feeding my children, I am preparing even more of their meals from scratch, and Mr 3 has been an absolute champion with gradually accepting his new fate. “Mummy, does that label say ‘peanut allergy’ or ‘good allergy’? Please can I have that special treat?” is the cutest thing that came out of his mouth this week, however other days present tears when he is not allowed what other children are eating (he has a very sweet tooth which makes things hard!).
Our friends and family have been amazing, with numerous houses we frequent now ensuring that they have a ‘Mr 3 – friendly’ supply of snacks and treats. I am carrying a lot more food with me, and we have left ‘safe’ treats at kindy and playgroup for when other children bring items to share. However, as it is such a new occurrence in our lives, we are still going through the concerns of how life is going to pan out – how are we going to manage traveling, sleepovers, birthday parties, school camps etc as he grows up and we lose more and more control. Until then, we are taking one day, and one packet label at a time.
Our almost 3 year old daughter has recently been diagnosed with intolerance’s to wheat, gluten, yeast, soy, rye, crab, green pea, lentils, and a few other things. We found this out through blood tests taken by a naturopath. We found this out after she had been breaking out in hives, really nasty all over her body since she was about 18 months old. She became bloated, and poorly behaved. In a 12 month period she had about 5 occurrences of this, and 4 GP’s told me it was either a viral rash, or just an immune reaction to ‘something’ and that there was nothing that could be done. Knowing that it couldn’t be ‘nothing’ I sought out the help of a naturopath, who took one look at her pale complexion, bloated stomach and dark circles under her eyes and told me she had a food allergy.
An elimination diet of 6 weeks cleared her up, but we were still getting occasional outbreaks of hives. We then tried a salicylate free diet and this seemed to do the trick, but went ahead with the blood testing anyway. There are still a few things we think she cannot eat, such as corn, despite coming back clear on her blood tests.
She has been so good through the whole process, she is such a good eater and has embraced her ‘special food’. When we were not allowing dairy, after about 2 weeks she begged me ‘please Mummy can I have some cheese because I loooove cheese’, she said. Thankfully the dairy does not seem to affect her, but as it can contain elements of the things that do, such as soy and wheat, it is really tricky to keep on top of it.
The biggest struggle we are finding is kids birthday parties, and childcare. Her diet consumes my life, which is difficult with a 4 month old baby in tow as well. Even the gluten free bread I was buying her contains soy (and preservatives!), and the bread mix I discovered without soy actually contains corn as the main ingredient.
Our beautiful son, from the very first night in hospital screamed after almost every feed and when we got him home, for the first 4 weeks he never slept more than half an hour at a time. Exhausted, I would take him to the child health clinic and I would be reassured that he was fine and I was obviously just having trouble with my settling techniques.
My husband and I not knowing any better and just so pleased to be parents, soldiered on unknowingly, with our little man who was clearly miserable and in so much pain. It wasn’t until he was 12 weeks old and the sleep deprivation had the better of me (when I had driven in the car for 1hr & 45mins with him screaming the whole way) that I decided to see an old family Doctor. He immediately diagnosed our son with severe reflux and once he was medicated for this, he began to sleep 3-4hrs at a time.
Another few Months went by and I went to another GP to renew the reflux medication, she suggested that perhaps food allergies were contributing to his reflux and referred us to an allergist. Following on from this we had a 3 month wait to see the specialist.
From this appointment it was confirmed our son was allergic to cows milk protein and eggs and as I was breastfeeding him and consumed a lot of dairy and egg products I was effectively making him unwell and causing him unnecessary pain. I guess sometimes breast is not always best.
My husband and I felt incredibly guilty that we had not known this sooner. He was our child after all, and shouldn’t a parent instinctively know when something is wrong and what to do about it.
Following this appointment I began to wean our son onto a prescription formula and since he has been a very happy, settled and content child that loves to sleep. He immediately began sleeping 6-8hrs at night.
We have been told he should eventually outgrow these allergies but to date he has not.
We have come along way since those painful early days and our son is a bright bubbly 3yr old with a wonderful appetite who understands and accepts that certain foods make him sick. With our next child we are well prepared to face any Allergies head on.
I do think we need more education about the symptoms of allergies in infants, as being first time parents we were dismissed by many professionals regarding concern that something wasn’t right with our son. Had we have had more knowledge we may have been able to save our son from the many months of tummy pain the he suffered. If we had known that my diet could actually be contributing to his allergies whilst breastfeeding I would have been able to alter the foods I was consuming or wean him completely at an earlier age.
I Grew up in a family with no food allergies, so when I had my two boys I thought nothing of it. I remember reading a book when I was pregnant with my first son. It mentioned the symptoms of an allergic reaction to food and I honestly just had a tear in my eye, for any parent that would have to deal with that. Little did I know my unborn was allergic to the world!!!
My first anaphylactic episode with my son was when he was 13 months old. I had my 2nd child then, he was only 8 weeks old. My sister in law made lunch for the the toddlers while I breast fed my new born. She did ask if I’d tried my son on peanut butter and I said no, but we are healthy so let’s give it a go!! All that was on the bread was a clean of the knife. I fed my boy while I carried my new born. I remember he kept pushing the bread away. While he was playing he started coughing. I was breast feeding my new bub at the time and I just felt something was wrong with master 1. I put my bub down and ran to first born. He was wheezing and drooling and I honestly thought he may have swallowed something. When I opened his mouth I noticed his tongue was swollen. I screamed for my sister in law to call 000. She asked if I was joking and I screamed again call 000 NOW… She was in shock but all went well.
My son was treated and was fine. I think the funniest part of the memory was my sister-in-law having to take my new born to the chemist and buy formula and bottles and everything that a crying, hungry newborn needs. She said she held him up to the chemist staff and said ‘how old do you think he is?’ to buy the formula and all he needed.
Today my son is well. He has allergies to peanuts, watermelon, grass, dust and penicillin. They are the major ones, but he is so gorgeous and he has known from a young age to check with mum first before eating anything.
We try our best not to let him miss out in anything, but at the same time I feel I must be in control of outings and parties. His class has a separate bag of treats for him when other food comes in for birthdays and things like that.
Thank you for sharing YOUR story