Tag: children and allergies
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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 – 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. 

rolling with the bad and the good

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

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A special Trifle

trifle complete 2 (1 of 1)

trifle complete (1 of 1)

I don’t know about the rest of the world, but in my small part of the planet Trifle is a dessert that is synonymous with Christmas.  My Mother in Law makes a killer trifle.  If you don’t know what’s in a trifle, please let me enlighten you on our version; in a large glass bowl you place a base of sherry soaked jelly roll (sponge cake rolled upon itself with a jam interior), a layer of jelly (jello) with seasonal fruit,  a layer of custard and to top it off,  a fluffy light blanket of cream.  So with every scoop, you need to excavate vertically, carefully, so you obtain a little bit of all of the layers, and it looks like a riot of colour on your plate, very Christmas!

After a large Christmas Eve dinner, I crave trifle, not the plum pudding and brandy butter – although that is also very good.  But as you can imagine here in Western Australia, Christmas Eve temperature is forecasted to be 35’C or 95F – so I crave cold comfort food to cool me down.

Now my little 5 1/2 year old is allergic to almost everything in a trifle except for the jam, jelly and fruit.  Loving a cooking challenge, I set my self the task of creating an allergy free version of my much-loved trifle, safe for him to eat.  I have to thank many a blogger for helping me to accomplish this, so with each step I have acknowledged gratefully these wonderful cooks and chefs for giving me the inspiration and the recipes to make something special for our little guy.

Bobby’s Trifle – Dairy and Egg Free

Jelly Roll

This sponge cake is based on a Fluffy White Cupcake recipe from Shmooed Food; I have used this recipe many a time and it is a wonderful base for birthday cakes and is delicious and moist.  I made this cake in a flat baking tray, I was careful to only half fill it.  When the cake was cooked I used the baking paper to gently roll it – alas it did crack and didn’t do a smooth roll, I quickly wrapped it in cling film in its rolled position and put in the fridge.  For the trifle I just cut a slice and placed it in the bottom of the glass and placed a teaspoon or two of orange juice (to replace the sherry).

sponge cake (1 of 1)

sponge cake with jam (1 of 1)

sponge cake rolled (1 of 1)

Chocolate Custard

The traditional trifle has a vanilla custard, last time I made this it was not such a big hit with my son, who prefers all things chocolate.  So to guarantee a winning combination I made a chocolate custard.  I found a great recipe here by Veggieful.  After making the custard and before putting it in the fridge my boy had a taste, and of course he wanted to eat the rest of the bowl!

Jelly (jello)

jelly and cake (1 of 1)

The easiest part of the dish besides the fresh fruit, I used Aeroplane Jelly –  Raspberry flavour.

Fruit

fruit (1 of 1)fruit in glass (1 of 1)

I used strawberries, blueberries and seedless grapes.

Topping

Typically trifle is gently entombed with fresh cream.  I was contemplating using a whipped coconut cream but thought about the heaviness of this for a little 51/2 year old stomach, so elected to do a shaved white chocolate – thank you Sweet William for making dairy free chocolate!

My son has witnessed the assembly of his trifle and now there is a countdown to eating this dessert as well as Santa’s delivery – “how many more minutes Mum”?!

A special thank you to all the people who inspire me – my son, my husband and my family, bloggers, readers, commentators, likers, face book friends, blog readers, thank you!  I hope you and your family have a safe and happy festive season, Charmaine x

And for my allergy friends – here’s to dreaming and wishing for an allergy free Xmas…..one day soon xxx

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My Top 5 ; things I would have liked to have known when my son was diagnosed with Allergies

I love getting feedback on the blog, and a little while ago, Alicia asked some questions that I thought I’d cover in more detail in this post.  Alicia wanted to know “what were the top 5 things I would have liked to have known/asked when my son was diagnosed with allergies.”    A good question, but tough to answer!

Tiffany’s cartoon  above, really highlights one of the key things I wanted to know – why did my son develop allergies?  Many people asked me the same question, was it: something I might have done /or didn’t do  – whilst I was pregnant, was my house too clean, should I have kept a pet, was my diet poor (!).  I wish I could answer this question, I hope and pray that medical researchers find the answer soon, like tomorrow!

But in the interim, I am going to try to identify the top 5 things that would have helped/ or has helped me stay calm and sane, when we first got the diagnosis:

1.  Find a good counsellor – I am proud to say – that I got some help!

After 18 months of living with life threatening allergies and asthma, trips via ambulance, hospitalisation and a short stay in ICU for my son, I was feeling like a nervous wreck!  A friend of mine gently encouraged me to see her counsellor; the best thing I ever did!  In this supportive and objective space I was able to discuss all my issues in relation to illness, fear and anxiety.   Not only did I start to feel more in control, I also learned something valuable; the concept of ‘itchy’ and how to keep my son safe.  Just a note on this if you need to talk or download some stress, there is always Lifeline – open 24/7 based in Australia. If you are overseas I am sure there must be a free support service via phone or internet, find it – it is always good to have a safety valve, keep the number handy in case you need to download.

2.  “Itchy” a great term to get your child aware of allergies

How do you explain to your child that they have allergies in a way they understand, my counsellor suggested using the word “itchy”; children understand words that they can relate to, they can feel, allergy doesn’t mean much to an 18 month old.  So at a very early age I would explain to my son about “itchy” food.  To this day he still describes foods he can’t have as being “itchy for him”.  So far he has never tried to put any ‘itchy’ food in his mouth or food I haven’t prepared for him.

3. When you are in the ER or Accident and Emergency Room in the Hospital you are a critical part of the care team; speak up!

Having made many visits to the Children’s Hospital Emergency Room, my husband and I realised that we had to advocate for our child; that we are part of the care team and that our concerns needed to be taken into consideration.  I am not saying that we have sub-standard medical care here, on the contrary we are fortunate to have a world-class, leading children’s hospital – virtually on our door step!  We have excellent medical support, but no one knows our child like we do, when the Emergency Room is rushed and staff are under pressure, you need to assert any concerns you may have about the treatment or discharge plan for your child; ask questions, advocate for your child, you are also part of the care team, not just the Doctors & Nurses.

4.  Regular exposure to foods.

My child had food allergies at a young age, however he was able to eat fish – often a high allergy, food protein.  What I didn’t know was that stopping fish for a period of about 4 weeks and then re-introducing it, can create a future allergic response..  There was no real reason I stopped giving him fish when he was about 12 months of age, but when I re-introduced it he developed hives all around his face and started throwing up; very scary, we gave him anti-histamine straight away, washed him down and ended up in an ambulance and in hospital (he was discharged a few hours later).   I do beat myself up about this, but I didn’t know that you need to give these type of foods regularly, about once per week.  You make mistakes, you learn and (for peace of mind)  you have to move on; another one of my (many) mantras.  So now he has an allergy to a certain type of fish it’s called Snapper.  A skin prick test and food challenge last year demonstrated he could safely consume Salmon, Whiting and Tuna, and he now gets that every second, or third day, on a regular basis.

5.  Find a good Medical Team to support you

I guess I am very lucky that we have a wonderful family Doctor, Doctor Deb, I have been seeing her for years, she has been a great support on this journey.  In fact my husband and I joke that we must have funded several of her  Christmas holidays, given the many visits we made to her practice during the first four years of our son’s life.

Through Dr Deb we were referred to a Pediatric Allergist, Dr A.  Dr A is a wonderful specialist, not only does she get the stress of being a parent of an allergic child, she is not pushy with the treatment plan (for food challenges); my son was scheduled for an almond food challenge at the start of this year, but I postponed it because I was feeling a bit stressed about him starting school, she understood.  Dr A is contactable by email, so that means if you have any queries out of your review appointments you can get in touch with her directly; a specialist that has embraced technology and understands the stress of being a parent of an allergic child – double gold!

So I have got some scars from this journey, it has been tough.  But coming into 2012, I know a lot more than I did before. I am learning to release my anxiety, stress and the unrealistic expectations that I should be a Doctor, Allergist, Nurse, Dietitian/Nutritionist and a Chef, (NOT!),  My focus now is just being a centered and grounded person which will hopefully translate into a being a good (less paranoid and over protective) Mum to my son.

Thank you Alicia for asking the question, writing this has been cathartic and I hope it helps you and anyone else facing the same issues.

Would love to hear your comments, what are your top 5?  What activities help you download your stress?

Why Blog about Allergies?

Hello and welcome to my blog! My name is Charmaine, my son Bobby has multiple food allergies.  This blog is about staying positive, sharing information and doing the allergy journey without fear! When we found out that our son Bobby had multiple food allergies at 6 months of age, we had no one to talk

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