In 2015 we plan to go full steam ahead to take a few allergens of my son’s long list. If only it was as easy as erasing the top 5 or so! Under medical advice we have started immunotherapy (more on that later) and we hope to do a baked egg challenge this year. As
First day of school today, Year 1, can’t quite get my head around it. My son was so excited he shot out of bed and was dressed in his uniform before going downstairs for breakfast It’s always a mix of emotions, I am so pleased he is on his way and feels confident about his school, nervous because it is a new teacher and she doesn’t know him well yet – allergy wise, and a bit sad the holidays are over and the house feels a bit empty without his larger than life presence.
The timing is just perfect for my guest blogger, a very talented author, Alicia Young who has shared some inspiring thoughts , “In Celebration of You”. Alicia is a journalist, speaker and author of The Savvy Girl’s Guide to Grace: small touches with big impact—at home, work & in love. It’s a light and bright read for anyone who feels stretched amid the rush of modern life. The book’s publisher, Parasol Press LLC, has also launched The Savvy Life Awards, with $5000 in prizes to reward savvy living. Entry is free and open to U.S residents. See: http://www.savvylife.net/awards/
In Celebration of You….
A daughter dabs gently at her mother’s mouth, as she feeds the older woman and holds the thin, papery hand that once dried her tears over a broken toy or a broken heart.
A professor challenges her class to pose a dynamic solution to the problem before them.
A newlywed grieves a job lost and a dream deferred for her partner, who got laid off today.
As women, we embrace compassion and support, selflessly playing cheerleader to others. We listen, coax, encourage and boost our loved ones in their quests, ushering them through their dark times. We remind them of their successes, their accomplishments, and their creativity.
Why then, are we sometimes slow to recognize our own achievements? Our uniqueness? And why are we equally hesitant to celebrate them, or relegate them to an afterthought?
As girls, we are often raised to accord more significance to the needs— even the whims— of others, more importance than our own. There is a time and place for that, as any mother knows. But when we carve out time for ourselves—if only mere minutes— we are sending a powerful message, both to those around us, and to ourselves.
We need to own our skills, to embrace our mindsets and to value our way of engaging the world. We need to claim time to recharge and rejuvenate.
My challenge to you: find a way to celebrate yourself— this week, this month, this year. Hang a sign on the door—literally or metaphorically—and declare this hour, this day, this weekend yours.
How do you take time out to celebrate yourself?
Defcon 1 – is a term used for military preparedness, in the event of imminent nuclear war.
Consider this, your child has severe allergies, and you are about to witness your son or daughter consume a ‘high risk’ allergen (new food that he/she is allergic too) at your local children’s hospital. How do you feel? Scared, worried, hopeful?
For me it feels like my defense shields are up, an internal Defcon 1 – my flight-or-fight system kicks in, yes there are nurses and doctors at the ready, but your child is navigating dangerous territory with an unknown, potentially life threatening outcome. If I could grab my child and run, I would, however, I have to go through with it, otherwise there would be no progress; I remind myself of the goal, that is for my son to live allergy free.
We have been a few times now for a ‘high risk’ food challenge at the local children’s hospital, the last challenge to almonds was successful – so we breathed a sigh of gratitude and relief. Our son has a much better attitude to the food challenges, he can’t wait to try something new – which is terrific. We only tell our son about the food challenge the night before – we don’t want him to think about it too much – perhaps we don’t want to think about it too much!
The following is my observations and experiences, being part of my child’s food challenges at the local children’s hospital, it is a personal account – be warned I am not a doctor or a nurse!
For us there are two parts to a ‘high risk’ food challenge, one is the Lung Function Test and then secondly the food challenge.
Lung Function Test (LFT) Our son has asthma and the new protocol at the hospital we go to, requires him to have a LFT prior to a food challenge. We attempted the almond food challenge four times last year, three times it was cancelled because my son failed the LFT. The LFT is conducted with a technician and a machine which measures your lung output, it is called a Spirometer; the patient is required to do a series of exhales which are measured to determine lung capacity. After a series of exhales, the patient is then given Ventolin (bronchodilator), and after 15 minutes they are asked to exhale again, several times. The pre-Ventolin exhales are compared with the post Ventolin measurements. The deviation between the pre and post needs to meet a certain criteria – like not greater that 10%, my son failed this the first three times. He passed on the fourth – hence we got to do the almond challenge. Did I mention that you need to be extremely patient and zen about the process involved with a food challenge? There are sound medical reasons why asthmatics have to do a lung function test prior to a high risk food challenge, if their lung capacity is impaired and if they go into anaphylaxis it could lead to adverse outcomes for recovery…
There is a whole other story as to why my son failed the LFT three times, part of the reason is that mastering your breath (at the age of 6) is a bit tricky, and good control of your asthma is very important post colds, hayfever and the like.
What we do – 8 days before the food challenge:-
- Remind ourselves no anti-histamines 7 day before the food challenge (if possible – if we have to give our son an anti-histamine within this window, we just reschedule the food challenge).
- Ring the Ward to check the appointment times – we now have organised to be admitted onto the Ward – have the first set of observations taken, do the Skin Prick Test (see next section) to ensure that the medical staff are satisfied our son is well enough to do the food challenge, and then go for the Lung Function Test – which can take up to 40-45 minutes.
- speak to the Immunology Nurse or the Senior Nurse on the Ward, clarify what type of food you are bringing in for the challenge, in my experience the hospital never provides the food. Sometimes on the protocol for your food challenge, a certain product is written up for the food you are going to try – in our case it was almond spread – which we were not happy to use, we did some research and found the only almond spread we could find was made in a factory which processed other nuts (my son is allergic to most other nuts). We negotiated with the Nurse to use blanched almonds – which still caused a minor ripple on the day of the challenge because the Nurse we spoke to did not change the protocol and did not start her shift until later that day.
- Purchase or make your food for the food challenge and freeze it ready for your appointment, have back up in case something drops, spills etc. Take known and loved food that might be taken in conjunction with the new food your child is going to try, for example, when my son did a pea challenge (why do children despise green things) – we took boiled peas and dairy free crackers, the crackers helped the peas go down. With the almond challenge we took dairy free chocolate chips (by Sweet William). This avoids any resistance to taking the new food and eliminates frustration, tantrums and drama. It’s a bit like the song from Mary Poppins “just a spoonful of sugar helps the medicine go down!”
- Check your EpiPen make sure it is not expired – at the hospital we attend, they will not proceed with the food challenge unless you bring your child’s prescribed EpiPen.
Day before the food challenge – pack and check it twice:-
- Food for the food challenge, don’t forget to take it with you!
- EpiPen – make sure a) you have the identifying label with your child’s name on it from the pharmacy – b) simple I know, but check that it hasn’t expired (Note: the Ward will use the hospital supply of EpiPens but they require you to have yours there too).
- Current, up-to-date Anaphylaxis Action Plan – this is a great way to communicate all the allergens without reciting it several times to the Ward. And unfortunately we have a list of about 7 foods to remember, you don’t want to forget any.
- You will be on the Ward for up to 3 hours – so take things to do with your child, a DVD and player (laptop), games, puzzles or books – the toy section on the ward is limited in my experience.
- Pack a spare change of clothes for your child, and a light jumper. A spare top for yourself and your partner can also be included, need I explain?
On the day of the challenge: –
- double check your hospital bag, make sure you have everything especially the food for the challenge and the EpiPen.
- Pack food for your child, I don’t trust the catering department at the hospital, I take my own snacks, morning tea and lunch for my son. Remember you might be at the hospital for up to 3 hours or longer.
- plan to arrive at booked admissions at least 10 minutes earlier than your appointment – so you are not rushed and stressed and importantly you and your child are relaxed.
On the Ward (every hospital has different protocols your process might be a bit different) : –
- When you arrive on the Ward the Nurse will check your child’s details and conduct observations checking the usual; temperature, pulse, respiration, weight, blood pressure, oxygen saturation etc. All being well, the hospital we attend has a protocol which requires a skin prick test, with the new food your child is going to try. If your child passes this test then it is all ‘systems go’ to the food challenge.
- The Nurse will check to see if there are any rashes or red swellings on the child’s body – prior to the food challenge – to ensure these are not mistaken for a reaction to the new food.
- The food challenge is the slow, measured introduction of a new food in small amounts, culminating in a loading dose in the space of one hour. Every time a dose of the new food is consumed, the patient is monitored for any changes in their vital signs. So you wait and say some prayers, play games, and try not to think about anything, I try to go to my happy place. Post two hours of the last dose of the new food, and if all is well – the food challenge is considered a success and you are given a discharge sheet explaining further monitoring and the next steps. Phew and congratulations!
If you are unsure of the discharge plan you can ring up the Immunology Nurse at the Hospital and seek clarification, but the best thing is to ask all your questions while you are at the hospital. I like to find out when to give the new food again, how much and how frequently.
I have been through a food challenge that was not a success, that was my first time using an EpiPen (under the supervision of the nursing staff). It is the single experience I never wanted to have, but it is part of the journey of being an allergy parent. Each experience teaches me something, I get a bit more wiser, learn a bit more, gain more confidence and build courage, more than I thought I had, I surprised myself that day.
Here’s hoping you have a successful food challenge every time – and would love to hear your experiences on the Ward – what do you do to prepare, got some great tips? How did it go?
Disclaimer: This is my version of events, this is how it unfolded for us, this post is based on my perception and my feelings, I am not a medically trained anything! Always find out for yourself, ask your doctor, ring your local hospital. I write to help me process the allergy ride, I write to connect with others on the journey, I am not an expert and do not claim to be one.
I have been in a blogging hiatus for several months, may be I have waiting for some sign, perhaps I was waiting for some positive news on the allergy front.
Being an allergy parent is a lesson in humility and patience, it comes with the diagnosis; as a parent you would like an instant cure, as if you could push factory reset on your child’s immune system and wake up the next day and your child can eat anything, everything.
- going to the shop and no longer having to read all the ingredients on each product;
- not having to trial new food products, one teaspoon at a time and wait for a reaction;
- my son going to a friend’s birthday party and being able to eat all that there is on the table (maybe not all);
- having my son’s birthday party and have it catered for;
- my son being able to buy an ice cream from the “Mr Whippy Van” and eat it!
- being able to order food for your child at a restaurant – whoa huge!
- not having to carry a medical kit, and keeping an epi-pen within a constant temperature range;
- going away and not having to pack food for the plane, food for the destination and even utensils;
- not having to cook each meal;
- not having to have a safety and first aid talk with each new teacher, or play date parent.
- not worrying when your child sneezes consecutively or starts to cough out of the blue.
- not having to live in fear.
I have imagined this – have visualized it and – are we there yet? Nope. But I have to say progress has been made in small steps, we have just had an almond food challenge at (Defcon 1 – what I like to call high defence alert) on the ward at the local children’s hospital, and my son is now eating almonds! We had the food challenge just before Xmas, it is a wonderful gift, we have finally one nut (I know it really is a seed) that my son can have safely.
My son now needs to eat almonds regularly, to prevent him from developing an allergy to it. So although progress seems slow, my son has been able to add wheat, soy, bananas, salmon, peas and now almonds to his diet, all of these things are given regularly. We have also safely added things like coconut and avocado without going to a medically supervised food challenge, but we have done these new foods in consultation with my son’s Dr.
My earlier post was a quote from the great Nelson Mandela “It always seems impossible until its done”. I am going to just keep going because one day this quote is going to come true, and although my son has several major, life threatening food allergies, I know – that what seems impossible now, will one day be a memory.
So with this optimism and strength we move into 2014 and to new adventures, we are taking on the dust mites and pollen pests and we are hoping to start some kind of desensitization to egg. Bring it on, we are ready to keep going! What’s on your hit list this year?
It always seems impossible until its done” Nelson Mandela
Thank you Nelson Mandela for being an inspiration to me, your words have lifted me, many times over the years. This one quote has kept me strong in tough times. Rest in Peace
Our son recently had a blood test to see where his allergies were at, the good news was that lentils have made a significant decrease, but the elusive and more valued dairy, egg and nuts have continued to be stubborn and have gotten, slightly worse. To say I was disappointed was an understatement. I remember asking our specialist
My son is a bit over the rustic salmon balls I make, he has this dish once a week to keep the allergy troll away; high allergy foods need to be given regularly, so you can understand how you can get bored with the same ol’ dish every week.
I came up with a Salmon Bake. This dish is quick and easy and you will most likely have these ingredients in your pantry & fridge.
Salmon Bake Recipe – makes enough for 4-5 small ramekins
- 1 tin of salmon – I use John West Pink Salmon
- 1 celery finely chopped
- 1 garlic finely chopped
- 1/2 zucchini grated
- 3 florets of broccoli finely chopped
- 1 punnet of cherry tomatoes chopped into quarters
- pinch of salt
- a twist of pepper
- pinch of dried herbs (or fresh if you have them)
- tablespoon of olive oil
- 2 cups of macaroni or penne pasta
- 1 cup of breadcrumbs (I just use our regular bread and crumb it in the thermomix)
- 1/2 cup of dairy free cheese (or dairy cheese if you are lucky enough to be able to eat this!)
Place the celery and garlic in a pan with the olive oil and saute, add the zucchini, salt, pepper and herbs, stir fry until the zucchini is translucent.
Add the broccoli and cherry tomatoes and continue to stir, until they soften, add the salmon (mash it up before adding to pot) and mix.
Add the pasta to the pot and mix through.
Place the mixture in a ramekins (for individual serves) or casserole dish.
For the topping I use a dairy free cheese – Cheesly, but if you are lucky enough you can use parmesan, I mix this through with the breadcrumbs and then top the casserole dish. I then pop into the oven – on a grill setting for about 5 minutes until the top is golden brown. Just make sure you make this in advance as it can be quite hot for little mouths.
My son loves this dish, and I get to pack in a few vegies in addition to the fab omega 3 dose in the salmon. Would you give this dish a try?
Above, taking the plunge with large easter moulds…very tricky – I used white chocolate on the detail and chocolate for the rest (all dairy free by Sweet William)
I made some rice chocolate using rice puffs and dairy free chocolate – these turned out quite tasty!
Strawberry hedgehogs, dipped in white chocolate and chocolate chips (all dairy free by Sweet William)
Some examples of the white chocolate and chocolate truffles I made, with a few sultanas for garnish.
This year I decided to be a bit more adventurous with the Easter treats for my dairy allergic son; you can see the results above. For some reason things taste better when they look different to the norm, and when they are packaged in gold foil!
What I love about essjay’s recipe, is that the buns are light almost like Italian Panettone, and importantly very delicious! I made a big batch for Easter presents – for my son’s teachers, it took a bit of work but I wanted to give them something home-made, something special, to show my appreciation for their inclusiveness and understanding of my son’s allergies.
My son’s teacher uses cooking as a tool for literacy and numeracy and he (like most children) is happy to write stories about food. The head teacher has consulted me along the way and I have used recipes from my blog (very handy!), from gingerbread, pancakes, muffins and chocolate biscuits – all allergy free. My son is having a great time at school and he loves being part of all the action, especially cooking and eating! PS he is having so much fun he hardly notices that he is learning to read and write!
Magnet takes her first bath – the wheelbarrow was my son’s idea – ingenious!
After many requests from our son for a dog, we finally got one! What a dog she is, an absolute delight!
We have nicked named her ‘Magnet’, because wherever we go, she draws a crowd, people stop her for a pat, she is taken off for photographs with children and families, little children line up to take her for a short walks, talk about celebrity!
Many a child and parent are heard to fondly yell out “there’s Schnitzel Von Krumm” – meaningless to you unless you have read the much-loved, Lynley Dodd‘s “Hairy Maclary” series of books; ‘Schnitzel Von Krumm’ is a feisty and endearing character, immortalised in many of Lynley Dodd’s children’s books.
We were a bit nervous getting a dog given the allergies and asthma our son has, and the notion of having a dog, seemed to be a stretch and perhaps a recipe for disappointment. We talked to our son’s Allergy Specialist who suggested we take the dog on a trial basis, to see how he goes allergy/asthma wise. In short our strategy was to tell our son that we were just looking after the dog whilst the owner was on holiday – brilliant idea! If it didn’t work out our son would be none the wiser and he wouldn’t be devastated to give the dog back.
I started researching a low shed, low allergy dog, I was quite keen on a ‘oodle crossbreed that is one of the Labradoodle, Spoodle, Cockerspoodle doggy types; these breeds have a curly coat (low shed) which is good for allergy/asthma sufferers. My husband was aghast! He wanted a big dog, a Labrador! Well that wasn’t going to work because of the amount of shed that happens with their coat, so we compromised with a Dachshund.
A bit of research later (many conflicting reports) and I discovered that short-haired Dachshunds are also low shed and some allergy/asthma sufferers found they had no problems with this breed. We found an awesome breeder who understood our situation and was happy to take the dog back, if for any reason she didn’t work out. I am happy to say eight weeks later, all is well and we are keeping Magnet!
My son adores her, he wishes she could swim and fetch – but we can slowly teach her that. Magnet is an older dog having had three litters, she has come to our home as part of her retirement plan : )
She likes nothing better than be next you, she loves going for walks – but not too far with those little legs! She loves chasing the swans (who are so much bigger than her), ducks and seagulls at the river, and yes she has small dog syndrome – she barks at the big dogs!
Most of the photographs shown have been taken by my son – who clearly is documenting almost every day of her time with us.
We hope that we will enjoy Magnet for many more years, and watch her grow up with our son, fingers crossed it will all work out, allergy and asthma wise.
Wish us luck!