Tag: Allergies

The Year of Living Dangerously ūüĎÄ

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

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defcon 1 – my experience of high risk food challenges

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 Рmy 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. 

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Happy Easter

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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)

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I made some rice chocolate using rice puffs and dairy free chocolate – these turned out quite tasty!

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Strawberry hedgehogs, dipped in white chocolate and chocolate chips (all dairy free by Sweet William)

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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!

Happy Easter!

Getting Ready For School

One more week of school holidays and my son goes back to school, he is very excited.¬† I am really pleased he loves school, given his life threatening allergies he handles himself really well, and at 5 1/2 he knows not to eat food that is not prepared by me. My son’s awareness about food

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Aargh, home made ~ Gold Chocolate Coins

Yes I know, you are looking at these home-made golden coins, and you might be thinking Рwhy not buy them Рwhy go to the hassle?  Well, one outrageous, life threatening allergy to dairy, and a 5-year-old boy who wanted gold pirate coins ~ need I say more.  The gold chocolate coins you buy in the store are typically made with dairy, so a no go for us.

So for ‘Talk like a Pirate Day’ all I could do was make some chocolate buttons; not enough notice…only found out three day’s before that the Teachers were handing out gold chocolate (dairy) coins to all the pre-primary¬†children. ¬† However, since then I have been on a quest and have found a golden chocolate maker at a local store for $11!

You need to add your own chocolate

The box comes with only four chocolate moulds

Chocolate coin making station

Pressing out the foil, ready to stamp onto the coins

The making of this Pirate Treasure is tricky, like following a treasure map!  And the embossing of the pattern, near on impossible, you must have the chocolate at the right temperature, but all of this is not important, because my little boy loves that the chocolate is in golden foil, chocolate coins are now in the realm of magic and wonder!

What is it about packaging that makes the ordinary – extraordinary? ¬†His feedback “delicious – can I take the golden coins to share with my class?” ¬†Love his generosity.

For the record, there are four chocolate molds in the box,  and we made a huge total of 8 coins!  Ha!  My son and my husband had one a piece Рhence only 6 for the photograph!

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Splash: Being in the Moment

You can only admire the tenacity and stamina of children, even though my son Bobby is covered in a viral rash all over his torso, with no other symptoms, he was determined to go out and splash the puddles!

Bobby was due an almond food challenge on Monday, we were psyched and ready to go.  Sunday night he broke out in a rash, which might have been an allergic reaction, so we immediately gave him an anti-histamine and followed our anaphylaxis action plan.

After consultation with his specialist and because the rash is still present¬†48 hours later, it might be a response to a virus.¬† Who knows, all I know that whilst I feel stressed and worried, he cheers me up with his good humour, his sense of adventure and the joy of childhood.¬† His¬†sense of fun and energy pushes¬†me ‘to be in¬†the moment’, and how could you do otherwise, when he’s jumping in puddles and making a splash!

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Slice of (icy) Heaven

Think double choc-chip, a¬†crispy molten indulgence, teamed with creamy vanilla infused strawberry ice-cream, then¬†to finish the experience a¬†layer of fresh strawberries…heaven in a mouthful?¬† Definitely!

This adventure into icy treats has been a challenge, I don’t do cookies!¬† But, luckily for me¬†the stars must have aligned and the cookies turned out beautifully.

Next stop was making the ice cream, no sweat, we make strawberry ice cream all the time; you can find it here.

To form the sandwich/slice I used food preparation rings, they are quite tall so you could do several layers: what a wicked indulgence that would be!  Just put them in the freezer, for a few hours, pop out the ice-cream sandwich from the ring, and you are ready to enjoy!

This treat was made for the little muse in my life, my son, so it is dairy and egg free;  a new food sensation for him Рthe joy of ice-cream sandwiches!

My son misses out on quite a few things because of his allergies, my mission is to convert recipes, think outside of the box and come up with alternatives that are tasty, delicious and importantly provide him with wonderful memories of (home-made) childhood treats.

By the way, the cookie recipe is from one of my favourite Bakers – Erin McKenna, her book¬†titled “Babycakes” is a must have.

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The ‘New’ EpiPen

New EpiPen and EpiPen Jr

My son’s¬†Allergist¬†has just upgraded¬†his¬†‘Junior EpiPen’ to the regular ‘EpiPen’.¬† The upgrade is based on¬†weight, he is now over 20kg.¬† With this upgrade comes the new style of EpiPen – have you seen it yet – do you have one?

One of the new changes is that the auto injector, now has a ‘built-in needle-end protection’, that means after you use it you are not left with a needle hanging out and the hassle of disposal (without injuring someone!).

I have registered with EpiPen Club, this entitles you to a free training DVD and an EpiPen Trainer pen, which is great for practice, and for family and friends to familiarise themselves with how to use it.

Interestingly, most people I observe practising (for the first time)¬†on the ‘EpiPen Trainer’, tend to go for the commando style jab, when all you need is firm pressure without the stab style action!¬† Maybe they have been too influenced by¬†the drama style action from shows like “ER” and “House”!

The EpiPen Club also offers a reminder service, so you get an email when your EpiPen is about to expire Рpretty helpful I think.

Most of you would know that an EpiPen (in Australia)¬†costs around $35 per 2 pens (if written on the same¬†prescription) from your Specialist (with a PBS authorisation code).¬† If you are purchasing without a script it’s around $100 per Pen.

My biggest hassle is carrying it around in summer and remembering to take it out of the car – it has a temperature tolerance that doesn’t like the summer heat!¬† During the current¬†heat wave in Perth, we have been to the local swimming pool nearly every day,¬†I have to leave my medical kit (with the EpiPen)¬†with the administration desk – it is too hot (39’C) to leave it on the lawn near the pool!

How do you manage to keep your EpiPen within the temperature tolerances?

Finally, the best discovery I have made since starting to blog, is this awesome blog site with some great humour¬†it’s called Food Allergy Fun¬†; thank you to the talented Tiffany – you can see her work just above.

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