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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. 

7 Comments on “defcon 1 – my experience of high risk food challenges”

  1. Peri's Spice Ladle
    January 8, 2014 at 1:06 am #

    So important for all parents to know the effects and handling of food allergies…many of my kids friends have varying food allergies and scary to think that a play-date could inadvertently trigger a situation!

    • intrepidallergymum
      January 8, 2014 at 6:43 pm #

      Hi Peri
      Thanks for your comments and stopping by. It is always wonderful to hear such kindness and empathy from a non allergy parent.
      Awareness and education of allergies is so important, because it is hidden, because children look well – people think they are well and it is only when the come in contact with an allergen does the alarm bells come on. Most parents, family and friends are very considerate but you know I always take my child’s food – even when we are in hospital, can’t take the risk.
      I look forward to seeing what you are cooking on your blog and hope you are having a great start to 2014!
      Best wishes
      Charmaine

  2. Kris
    January 8, 2014 at 11:46 am #

    Thank you so much for this very informative post Charmaine. We are still at the very beginning of this journey and it can be very scary.
    I will read this out to my husband so that we are both prepared. I don’t think he appreciates the seriousness of this (allergies) as he wasn’t around for the only reaction we’ve had.
    As a side note went to the paediatrician yesterday for bub’s breathing issues (been to hosp a number of times). Now on a preventer and a nasal spray. Not at all keen to medicate him so much (apparently the steroids are the lowest dose and I’ve been assured they are safe….), against all Mummy instincts, but I’m guessing it’s the lesser of two evils. Will have to call the hospital (PMH) to see if the preventer and nasal spray are allowed as I know the Ventolin is not. He is too young for a lung function test.
    I will definitely let you know how we get on. This is for baked egg, not even going to address the peanuts until he is much older – I can’t imagine how overjoyed I will be if he passed (but resigned myself to the fact that we may get lucky with the egg but not likely for the peanuts).
    Thanks again for taking the time to go this, I appreciate it more than you know.
    Kristyx

    • intrepidallergymum
      January 8, 2014 at 6:37 pm #

      Hi Kristy
      Allergies are one of those things that have to be seen to be believed. Because the person looks normal and healthy until they come into contact with the allergen, people think ‘what’s the problem?’. It is one of those things, seeing the effects sometimes brings greater awareness, empathy, and consideration.

      Asthma, ugh so over it. Yes I totally relate to you – I was the same, I didn’t want the steroid, didn’t want to do that, didn’t want my child to have asthma. It has been a veritable nightmare, I didn’t want allergies, didn’t want asthma and you know what even got eczema! The unlucky trifecta! So not only asthma medication, cortisone for the skin – do it – do it all! You have to and my son is in control with asthma and eczema. We have had many hospitalisations for asthma up until the age of 5.

      Can I tell you that my son is on a mild dose of steroids and is nearly the tallest in his class, healthy and active. If you went to an asthma clinic at PMH outpatients you would see the children who are chronic asthmatics and on big doses of steroids to keep their airways open, they look unwell, but you know you would do it to (kicking and screaming albeit) to keep your child safe.

      Asthma has to be controlled, we are so much more savvy now in managing our son’s asthma. We have been in ICU with his asthma, I don’t want to go there again. Take the meds and the spray. My son is on a spray and it is controlling his hayfever, don’t even need an occasional ventolin. He tends to get asthma with pollen, dust and a virus. Your child might also need to have the yearly flu injection – we do it religiously – because you can’t go into the emergency department at PMH as a known asthmatic without it – they ask everytime….

      You are right you usually can’t have a food challenge if your child has been requiring ventolin in the week prior, it means that they are not 100%. My experience is the preventative and a steroid nasal spray is fine but- as you said ring the Immunology Nurse or a Nurse on the ADHF Ward and chat to her/him – you might be cancelled. But don’t worry it took as four shots – can you beat that!

      It’s all par for the course, stressful, not the way we planned, but I’d like to think my kid will be a lit bit more resilient because of his medical challenges. He already tells his friends “You know I have allergies – don’t shove that food in my face!”.

      Hang in there and at the very least – I am here if you need to let off steam!

      Cx

  3. Kris
    January 18, 2014 at 9:09 am #

    Hi Charmaine

    Thank you for your reply, apologies for the delay, I didn’t get an alert (will remember to tick the box next time!)

    I am very scared of asthma, particularly as both my sister and I had bad childhood asthma with many hospitilisations. It’s just something that I don’t want for my boy. On the upside, I grew out of my asthma in my teens (this year was the first time I had to take a preventer but only for a short period of time).

    Our biggest news is that we had our baked egg challenge (muffin) this week. Didn’t start out well with the skin prick test – previously the measurements were around 8mm (for yolk and white) and this time one was 15mm and the other 16mm. After speaking to the immunology dept the call was to go ahead but it freaked me when I heard the nurses conferring and talking about, “but if they followed protocol….” They told me they were expecting a reaction and it was up to us if we wanted to go ahead, which we almost didn’t. Putting that first amount in his mouth had me in tears – a food that we had been avoiding and has caused so much stress I am now spooning into my baby’s mouth (he is 15 months). Thoughts of our initial experience going through my mind. Well the upside is he passed, no reaction at all! I am so grateful. His immunologist was of the opinion that he would grow out of his egg allergy sooner rather than later but says growing out of his nut allergy (we think only peanut) is unlikely. But for now I’m going to celebrate this win.

    Hope you are all well and thanks again.

    Kristy

    • intrepidallergymum
      January 21, 2014 at 8:21 am #

      Hi Kristy
      Congratulations, what a huge milestone!! As always these things cause so much stress and it seems you had a so much to deal with that day (15mm & 16mm spt!!!!), you are a shining example of taking a medically calculated risk because if you didn’t you wouldn’t know, egg would still be on the allergy list.

      But having said that, I bet you were close to taking your child and doing a runner! Good on you for keeping strong and going through with it and now you can cross eggs of the allergy list and back onto your shopping list – I am thinking of all the biscuits and cakes of course! I hope you have celebrated, eggs all around! Miraculous I say!

      With asthma you have first hand experience, so you know that if treated right you can grow out of it. My son does a lot of swimming as well as taking his preventer and nose spray and everything is staying under control. I am hoping he will grow out of it. The first four years were traumatic with admissions for asthma and now I think we have a good handle on it; we know how to monitor him and we are extra vigilant when he gets a cold. It took a while to get this sorted.

      Kristy what a wonderful start to 2014 – it can only get better from here!

      Best wishes

      Charmaine

  4. Kris
    January 28, 2014 at 10:31 pm #

    Thank you so much Charmaine. Also appreciate your comments on the asthma medication. I have a few “crunchy” friends that frankly make me feel bad about medicating him, but he has been so much better. We literally haven’t had a cold or wheeze since starting and this is after being sick for five months solid! So I guess I’ve answered my own doubts!

    Just been reading up on skin and RAST tests. My darling hasn’t yet injested peanuts but has shown to be “highly allergic” – but after the egg skin test and the results of our food challenge I’m starting to wonder (have to remind myself that the doctor predicted he old pass). Just need to remind hubby to remain vigilant as I’m sure wins like these encourage the guards to slip. Not seeing th immunologist again until Sept (bub still too small for the nut challenge) – and don’t really want him to grow up too ion (he is so gorgeous I just want to bottle this said gorgeous-ness!). I’m just hoping and hoping for. Good outcome for the both of us (being you and me Charmaine!)

    Thank you again for your comments, they helped me more than you know.

    xxx

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