After an allergic reaction - thankful in so many ways

A family from our Allergy Fun - Support group on Facebook has a very special message to share after their son suffered a severe allergic reaction. It is important to share our heartaches as well as our triumphs, because this is the life we live.

How do you even begin to thank the people who saved your son's life? Although words are not to convey our absolute gratitude, there are many people who deserve recognition and praise for their role in the medical emergency that unfolded when our son had an anaphalactic reaction. 
To the 000 dispatcher who was the calm in the storm while my son was having a seizure and unresponsive - thank you, thank you, thank you. You prompted information from my husband while I was yelling out my son's condition. You explained that you need specific questions answered, and your professionalism was exemplary in the chaos.

To the two ambulance paramedics who were the first to arrive at our house - thank you, thank you, thank you. You ensured he was kept alive until the MICA unit came. You trusted me to carry my son out to the ambulance. I needed to be able to hold my son's limp body, in case it was the last time he would feel his mum. 

To the two MICA paramedics who saved our son's life - thank you, thank you, thank you. You gave him the vital drugs that would bring him back to us. You updated me with his condition when you had the chance and invited me to ask any questions I had. You kept him alive until we arrived at the hospital and checked on him in hospital before you left. Your skills and care was brilliant and we are eternally grateful. 

To the resuscitation team who were ready and waiting in the Monash Children's emergency bay - thank you, thank you, thank you. You formed an arc of light around him on our darkest day. Your expertise, experience and presence was invaluable. You pumped out the remaining allergen from his stomach. You gave him oxygen and an adrenaline infusion to keep him alive. My apologies for getting in your way while you were doing your job - it was an automatic reaction to move to his side when he was responsive. 

A special thank you to the doctor who held my hand and guided me back to our son's side so I could tell him that 'the hurt would be gone soon' and 'mumma's here, right next to him'. I will never forget the moment he heard my voice and turned his head towards it, listening to me repeat his favourite things in the whole world (avocado, watermelon, meat off the bone, motorbikes, cars, mummy and daddy and little brother loving him lots and lots and lots and lots). 

To the care co-ordinator in emergency who was there to counsel and console us - thank you, thank you, thank you. You understood that my husband, who was in tears, needed to be with our son, just as much as I did. You gave my husband a chance to sit by our son's side, while I looked after his brother. Your co-ordination allowed our time to be shared between our two children so that no one was neglected. We appreciated your presence and kind words. 

To the emergency nurses who looked after him while we waited for a bed - thank you, thank you, thank you. You ensured he was comfortable and stable and kept us up to date with everything. You did a brilliant job and your kindness was most appreciated. 

To the cleaner who saw that I looked lost and helped me out of the ED to buy food for my younger son - thank you for walking me towards the right direction. You are not only pivotal in keeping the hospital running, your direction made my difficult day a little easier.

To the ward staff at the Monash Children's who looked after our son until he was discharged - thank you, thank you, thank you. You all went above and beyond in your roles. 

Thank you to the head nurse - you run an excellent team and lead by example. You came into our bay from the corridor and unobtrusively offered me tissues when you saw my tears. You double checked that the hospital meals ordered were correct, knowing that our son had allergies. You noticed all the details and addressed them promptly. 

Thank you to the nurses who looked after our son in the ward - you did a great job continuing his care and we appreciate it. A special thank you to the staff member in the ward who walked our younger son around and attempted to put him to sleep so I could have a rest. You stayed after your shift to help and I wished I had asked for your name to thank you. Your generosity with your time reflects your generosity as a person. 

Thank you to the ICU nurse who came to check on our son during his stay. Your follow up reassured us that he was OK and we're glad we only needed to see your lovely smile in the ward instead of in ICU. 

Thank you to the junior registrar who went to check if our son could finally eat and even retrieved a fork for us - you actions allowed us to calm a distressed, hangry toddler and we appreciated it. Thank you to the discharging doctor who gave our son the all clear to go home on the next day. You answered all my questions and advised us to put the event in the past. You accepted my thanks and praise for all the hospital staff and responded to my tears. You ensured our discharge was smooth and timely, and for someone who nearly lost a child, time is the greatest gift you could have given us. In every single way, you have all returned to us a precious thing - an active, cheeky, naughty 2.5 year old boy who is back to teasing his brother, not sharing his toys and chatting our ears off. You have given us a future with our son that was very close to being lost.

This incident happened a few months ago, when my husband accidentally gave my allergy son his brother's cow's milk instead of his oat milk. It was the morning after a very busy day before and in his exhausted state, he mixed up the milk cups that were in the fridge (both cups had been poured for the boys but they didn't drink want to drink it straight away so they were put in the fridge for later). My husband picked up the wrong cup. 

We now: 

1. Feed both son's oat milk

2. Have different coloured cups for each (although this wouldn't have prevented the incident because when you're tired, a different cup probably wouldn't make much of a difference) 

3. Occasionally give the non-allergic son dairy to keep it in his system, but in different forms and from a tetra pack if needed. Our allergist mentioned to us that this kind of incident was very common (exhausted parents mixing up milks).

Consider this... who and what are you thankful for?

Exhaustion in allergy parents

Exhaustion is defined as a state of extreme physical or mental tiredness. It occurs when something (typically our energy levels) have been used up.


Parents of kids with allergies (or any other chronic illness for that matter) understand what it feels like to be exhausted: the need to be constantly alert; the need to be constantly organised; to be only one step away from making a devastating mistake. Our energy levels quite simply get used up! But being exhausted or feeling exhausted still doesn't change the needs of our children.

It's now the beginning of March, and we have just come through the stress of Christmas, family gatherings, starting school/kinder, new teachers, new routines... and we wonder why we are exhausted?! But wait, Easter is coming up, and still another 10 months till we do it all again! Clearly, we need help, or a new way of doing things, or a bit of both.

So what do we do?? There are many practical steps we can take to ease the load. Here are just a few:

Keep a pantry well stocked with snacks and treats that are ready to go:
- Small packets of crisps/popcorn/potato stix
- Fruit cups or packets of pureed fruit (check out the baby aisle if you don't want additives etc)
- Dried fruit or fruit based lollies (check out the baby aisle again for bite sized snacks)
- Small packets of lollies and chocolates. If you can't get small packets, simply pour a few into a small container or paper cupcake liner
- Juice boxes

For something a little more substantial at a party:
- corn thins/ rice crackers with biocheese (coconut cheese for us)
- slices of ham
- small tin of baked beans

We also like to have cupcakes in the freezer that can be easily topped with either fondant or just a pile of lollies.

LIMIT the number of outings each weekend or day to something that is manageable for your family at this time. This might mean missing out on something, but it will also mean actually enjoying the chosen event much more. It takes time to pack and unpack, so having planned activities back to back is a recipe for mistakes as well as tears.

EXERCISE is good for the body as well as the heart and mind. Finding a way to get your body moving is a great way to release pent up stress. When our minds have a tendency to flit from one thought to another, it helps to pick an activity that demands your full attention. Exercise classes that demand some level of mental focus and coordination are great for helping to increase focus on the present and let go of the things we can't control. I've tried Zumba, boxing, and circuit classes - all of them help me to take off the load of allergy parenting, and concentrate on the present.

REST and RECOOPERATION is needed for the mind and for the body. For the body, a good night's sleep does everyone wonders! Make sure you get to bed at a regular time, or you won't have the energy to face anything or anyone tomorrow. Finding time for friends, away from the stress of allergy parenting does wonders for the soul. Enjoy a movie or a dinner where you don't have to take a bag of goodies, plus wipes, plus medications. Be carefree, for a litttle while at least!

If some of these points resonate with you but you're not sure where or how to start, face to face appointments are available in Rowville, Victoria. If you live further a field, online appointments can be arranged using Facebook Messenger etc. Our family has dealt with allergies (including anaphylaxis) to  dairy, eggs, peanuts, all nuts, soy, wheat, oats, shellfish, seafood and some other random foods. We also understand the stress of asthma, dustmites and hayfever.

Exhaustion is exhausting. If you would like personalised support, please send me an email.

Food Allergy Anxiety

As a parent of children with multiple allergies, I am all too familiar with the feelings of fear and anxiety that come soon after an allergy diagnosis. The doctors can be great in providing you with emergency medication, and perhaps some advice about how to manage the allergies, but few provide any ongoing support that may be needed for the emotional ups and downs that come with it. Actually, I'm not sure I know of any doctors that have provided that!

I have wanted to write about the anxiety that comes along with food allergies for some time now, but it has been hard to pinpoint exactly which "angle" I would take. The DSM 5 definition of anxiety (the book psychologists use to diagnose formal anxiety disorder) includes the point that the fear is "unreasonable or excessive". For someone who fears spiders, their fear is excessive, considering the danger most spiders pose in day to day life. However, if you fall into a pit of dangerous spiders, then that fear is completely reasonable and will cause you to climb out to safety as soon as possible. Is it reasonable to fear for your children when they are surrounded by substances that can threaten their life, but seem benign to everyone else? The answer is yes, the fear is reasonable and not excessive. In this way, the traditional way of dealing with anxiety is not very helpful. You can't just use positive thought to make that fear go away. Fear in the case of life threatening allergies is reasonable, and can actually help to keep you and your loved ones safe.

In our Facebook Allergy Fun - Support group, one parent asks, "if the phone rings, and it is childcare, or the grandparents, I immediately jump to the worst conclusion. Is this bad?"

Considering the situation, it is reasonable to fear that an allergic reaction has taken place. If we try and convince ourselves that the phone call is actually about where did we put the child's hat, then we may choose not to respond to the call straight away. If we panic and lose our ability to drive or think clearly, then the situation is made worse. What is a reasonable response? Yes, our heart rates may go up for a few minutes as we make the return call and find out more information. If there is no risk, then we need to be able to return to a calm state relatively quickly. How? Be thankful! For caregivers, it can be helpful if they leave a message that immediately alleviates our fear. As a school counsellor, I would often leave a message that started with, "Hi it's Grace, the school counsellor. There is nothing urgent, you child is fine, but it would be great if you could call me back when you have a moment."

So reasonable fear is helpful, but when the fear is overwhelming or crippling, then we need to look at it more closely.


Let's break it down.

What fears are there for today?

What fears are there for this week? What fears are there for the future... for next year... for 5 years' time... for 10 years' time?

Sometimes, our fears can snow ball and it can be helpful to separate what fear is helpful today, and what fears are for the future, and just too tiring to carry everyday. Truly... "Each day has enough trouble of its own" Matthew 6:34. Allergy parents need to plan a lot more than other parents - we plan food, doctors appointments, medication and we plan all the extra forms that comes with having a child with allergies. By all means plan, but we cannot live our day to day life in fear of what lies beyond this moment we are living.

Take time out away from allergies - maybe 5 minutes, preferably longer, and more regularly.

Don't read about allergies everyday. Facebook and the internet in general are a great tool for bringing together communities, especially in the allergy world, but anytime there is a food recall, or a death due to food allergies, we hear about it. This can skew our perspective and feed our fears. Be informed, but regulate what you read or think about.

Read other things - inspirational things.
Look at beautiful things - no body was every allergic to a rainbow!
Smell lovely things.
Touch things (or people) that bring you warmth, security and comfort.
Think on good things - think on amazing things, and count your blessings, whatever they may be.
Try and find time away from your burdens - time with your spouse, with friends to rejuvenate yourself.
Physical activity - it is important to let out some of our stress that we hold in our body. Whatever helps you - a walk, a run, a jump or a ride... just do it!

Find a supportive community - spouse, extended family, friends, online support, professional help. 

There are multitudes of online support groups available now on Facebook. You can find a group that is specific to the allergies you are dealing with, or a group that is more local and can help you find the right products and services you need. Pinterest has lots of recipes available. We tend to look for Paleo, or Nut free Paleo. Vegan recipes can also be helpful.

I invite you to join our Facebook group - Allergy Fun - Support.

If you are not approved within a few days, please send me a message. I try and block anyone who might just be sending spam through. It has been a wonderful and supportive group over the last few years, so we would love for other allergy families to join.

Never be ashamed to seek professional help. Life with allergies is not a path that we planned to travel and sometimes those around us just aren't able to support us enough... or maybe they are having trouble too.

Is there more you would like to know?

If you have a specific topic you would like to discuss, please send me a message. I would love to hear from you. This is just the first of many posts about how we can all live life to the full while managing life threatening food allergies.

Do you have a child with food allergies? Find out more about how to help their social and emotional development, so that they aren't crippled with anxiety themselves by checking out our Allergy Education page or enquire about a personal consultation via email: allergyfun@outlook.com.

2013 - another year ahead of us on an Elimination diet

The sorrow that is in my heart at the moments seems too much to bear. I look at a year ahead, and am filled with mostly dread about the challenges that lie ahead. It keeps me awake at night, and makes me just want to sleep in the day.

Our gorgeous baby is 8 months old, and is still on a diet of apple and baby rice cereal. We have tried pear, pumpkin and sweet potatoe, but somewhere along the lines, he has continued to break out in rashes, so we've had to start all over again... again. We took a trip to the shops and used a shopping trolley and shopping centre highchair for the first time. Cameron loved sitting up so high and looking around. But, that evening, his body showed signs of an emerging rash. It took over 3 days to heal with the help of steroidal creams. I had taken as many precautions as I could when using the shopping centre things but obviously it wasn't enough. And so the root of my dread reveals itself... what if our gorgeous baby actually has more serious alleriges than our eldest son?

At this point, I'm going to warn you that this post is about to get very long and very detailed. I keep a brave face for our children. I explain allergies, as a way of life for them, trying to teach them that there is more to life than food, and that there are many other ways they can express themselves, have fun and embrace life. For my husband, I keep my complaints brief and practical. What the problems is and how to fix it. Don't get me wrong, he is always supportive, happy to look after the kids so that I can go shopping on my own and read all the the labels. For my friends, I share a little of my burden, but keep it contained. They know it is there, but I dare not empty it out, for fear I may not be able to stop. I don't want my time with them, to be just about me, or just about allergies. So where do I pour out the depth of my feeling and burden? I like to write in my prayer journal, but my hand would get too sore. So typing seems quicker, so here I am. My deepest sorrows, my heaviest burdens, thrust out into cyberspace where it can scatter, so as not to smother another. So stop reading this post whenever you need a breath of fresh air. There will be little to be found in this post. But in other posts, there will be. I promise.

At 8 months, we didn't know about Matthew's allergies. We were careful with introducing foods, and he always had rashes, especially on his face, despite the use of steroidal creams. At 9 months he was diagnosed with anaphylaxis to 8 of the top 9 foods. Life changed in a way I did not think possible.

While breastfeeding, I had to limit those 8 foods from my diet, but I was still able to have a latte with milk, and one serve of wheat a day. Life seemed hard then, but this second time around, I have had to completely eliminate about 20 food categories from my diet. By food categories, I mean that all stone fruit (one category) is out. That includes peaches, plums, nectarines, apricots, cherries etc. I can't have any berries (another category) - no strawberries, blueberries, blackberries, raspberries. There are about 20 of these groups that are out. If you counted the items individually... easily over 100. I drink my coffee straight, I only have rice milk, I don't use pepper or other condiments like mustard, tomatoe sauce, or any asian sauces. The only store bought food I eat is MacDonald's french fries.While this crazy diet does seem to be working for our son... the implications for what it means for his own diet is mind boggling.

He's started to crawl and loves to climb all over me. While it is delightful to watch, and wonderful at times to be climbed on, there is a constant dread that these signs of progress are also signs that life is about to get much more complicated. Every crumb that falls to the ground must be picked up, every spill or smear on our clothes must be washed. Can you imagine keeping things that clean, with a crazy super active 4 year old boy? I feel terrible for our oldest son, who has to constantly wash his hands, is told off all the time, for dropping food, or for kissing his brother before he's properly washed his face.

Our baby's weight gain has significantly slowed compared to the first 3 months of life. The changes in my diet surely mean my breastmilk is not as rich. His current diet would probably be causing some level of malnutrition since growing babies surely need more than what apples and rice have to offer. His sleep is no where near as consistent as our eldest son, probably because his diet is insuffcient and he continues to need night feeds.

The prospect of going overseas is so far from happening that I don't even bother imagining what that would be like. We do go on holidays to visit relatives, but that will continue to get more difficult. Another year of birthday parties, but this time with a baby in tow. Another year of stress. Our eldest son has made a new friend... another birthday party... more special food to prepare... more kids to be wary of... more adults to be mindful of... more people to convince that life really isn't that bad with allergies. Guess what... it really is THAT bad... it really is WORSE! You have got no idea what it is like to think you could lose your kids in an instant because you weren't watching what some other kid did with their cookie.

One time at a park, I decided to let my older son run around on his own. Afterall, he knew the park, he knew where I was and I really needed to feed the baby. So he went off. After about 10 minutes, after I'd finished feeding the baby, I decided to go and look for him. As I pushed the pram, and couldn't see him, I realised what a terrible mistake I had made. What if I find him slumped on the pavement somewhere because he'd picked up a shiny chocolate wrapper out of curiousity? What is another child had dropped their icecream on the slide he was using? How stupid was I to place my son at such risk, just so I could concentrate on feeding our baby? If you think I'm over-reacting, the next time you're at a park, just consider how many children you see walking around with food. Each one of those kids, everything they touch, is a threat to our son's life. I would prefer those children to be carrying rat poison around, not milk, not icecream, not cookies.

What does the future hold for 2 kids with food allergies? When will it get easier? Not anytime soon... of that I am pretty certain. This year will probably be a breeze compared to the next, when our eldest starts school... boy, will we be on a learning curve then. Sigh, so although I dread this coming year, I think I dread the next even more!

Thanks for reading all the way to the end... it probably wasn't as bad as I thought it might me... often things brought out into the light aren't. And so our story continues...

Questions from an allergy child

I was so pleased the other day when an overseas friend visited our house. We were all seated around the dining table with a large platter of cheese, crackers and fruit in the centre. Our son had a serve of fruit for himself, as he often does. I told him not to touch the plate since it had cow's milk cheese as well as nuts on it. He proceeded to tell our guest that he was allergic to cow's milk, and nuts, and also eggs. He explained that he can't touch those things because it will make him sick. He also told her not to touch him if her hands are dirty because that will make him sick too.

I am so proud of our little guy and the way he understands and communicates to others about his allergies. I believe informing him about his allergies in an age-appropriate way has meant that he can understand the effects, and also why he isn't allowed to have many things. Thankfully this has meant we hardly have any tantrums when it comes to food restrictions. Of course, I always have a stash of alternative treats so that he's not totally left out, especially at parties. Tantrums when it comes to TV or tidying up, well that's another story altogether!

Here is a list so far of the questions our amazing 3 year old son has asked us about his allergies... along with some answers, just in case you encounter the same questions along the way. Some of these questions seem very basic, but I think it is important to address each one truthfully and frame it in a way small children will understand so that they can learn how to manage their food allergies.


Q: "Why do you and me have allergies?"
A: "I don't know. Everyone is a little bit different - it's called being UNIQUE"

Q: "Who else has allergies?"
A: "Mum is allergic to wine and beer. Grandma is allergic to flowers (hayfever). Grandpa is allergic to the sun (some lack of melatonin pigmentation). Did you know Vampires are allergic to the sun too?"

Q: "When I grow big, as big as the sky, I'll be able to eat cow's milk and eggs."
A: "When you were just a baby, you couldn't even drink Soy milk, but now you drink heaps... so maybe! We just have to wait to ask the doctor first, to make sure you don't get sick."

Q: "Is my baby brother allergic to cow's milk?"
A: "Your baby brother is too small to drink cow's milk, he can only have mummy's special milk, otherwise he will get sick." Our son's reply, "That means he is allergic, because he will get sick!" Since then, our son has gone on to tell his baby brother (2 months old), that he can't eat a whole range of things because he's allergic.


Q: "I can't eat Yoghurt can I?"
A: "If it's cow's milk yoghurt you can't, since it will make you sick. But if it's Soy yoghurt you can!"

If you've been tossed a curve ball question, please let me know and even better, let me know your answer so I can have it on hand when it's our turn!

Disappointment and discouragement

Oh dear, that's not a very inspiring title for a post...

I'm afraid despite a positive attitude, we've had quite a few set backs of late in our food trials and I'm feeling somewhat disillusioned. I'm counting four setbacks so far, with our last success seemingly very long ago.

After trying to adjust my way of thinking to being more adventurous, I realise that our son is anaphylactic to 4 of the 9 common food allergies... not 3 as I said in a recent post. So that's milk, egg, peanuts and tree nuts. The latter two are different categories. Even as I type this I'm realising that I'm hitting the keyboard with unnecessary force... I think there is a bit of anger and resentment hidden in these last set backs. I have to acknowledge that our last setbacks haven't been that serious - no epipens required, no trips to the hospital, not even a dose of antihisitimine. We have had to use some of our steroid creams, but mainly it's been a case of lots and lots of laundry due to diaorreah. It doesn't help that our son is in a single sized bunk bed that seems a lot more tricky to make and unmake compared to a toddler bed, especially when sporting an ever growing belly. But alas, he does love his new bed, so I can't begrudge that too much. Instead, these dramas really stem from his blasted allergies!!!

We've tried blackberries (got up to about 4 whole ones) as well as barramundi (ate up to half a palm sized piece). Because I was too adventurous, I actually don't know which one caused his problems, so for now, both are off limits. I should have spent a whole week on the blackberries, but I was impatient and let the food tests cross over. Then we tried a rice porridge which according to the ingredients doesn't contain anything new, but never the less resulted in a rash on his face within a few hours. This rice porridge was specifically labelled as allergy free, but my only conclusion is that perhaps some of the ingredients used actually contained traces of nuts or something similar. It did contain coconut, dried peaches and other stone fruit, so I'm guessing that the sourcing or control of all the ingredients isn't what it should be. Then, we tried a meusli bar of sorts, made by a special allergy-free company we use, and that resulted in terrible diaorreah on day 2 of our tests. The only new ingredient was linseed - which I did have reservations about, given it could be similar to a nut.

So there you have it, in the last month, we've had a lot of set backs, and it's basically sapped me of any desire to try other new things.Of course I can't actually keep this attitude, so I'll just indulge myself for a week or so of nothing new.

What this has motivated me to do is make another appointment with our allergy dietician - maybe she can give me a bit more direction as to which foods to try next. So don't give up reading the blog, there is hope somewhere out there... just have to keep looking, and keep reading!