Category: Food Challenges

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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nuts

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.

Imagine:

  • 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?

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Coco-licious

My 5-year-old son often asks me “when can I eat all the other foods, the ones my friends eat”?

I have to admit, each time I hear this question a part of me feels crushed inside.  It opens up all the guilt, anger, frustration, grief, and I hear the many queries that people ask me about his several, life threatening food allergies:

  • was he full term?
  • did you breast feed?
  • did you have trouble with your pregnancy?
  • how was your diet – when you were pregnant?
  • do you or your husband¬†have allergies?
  • was your home too clean?
  • did you have a pet – they are known to prevent allergies.
  • did you think he will grow out of it?
  • oh my God, can he eat anything?
  • it’s just an intolerance it’s not life threatening?

But of course I don’t show him my vulnerability, I go over my many mantras, “it’s a matter of time, one day you will eat all of those foods, in the¬†meantime you are lucky because all your food is made by Mummy, it has special love in it, to make you big and strong.”

So today, a big day, we did a coconut food challenge and he passed!¬† Whoo-hoo!¬† Another small milestone in the journey of adding new foods, and coconut has so many health benefits too, for example it’s¬†high in Omega-3 fatty acids, it also has a saturated fat called Lauric Acid which is good for nutrient absorption and even better, it’s stored in your body as energy, not as¬†fat.

Last year we had three food challenges, they were for pea, salmon and banana, and he passed all three, a good year!

This year we have been on a ‘go-slow’, with my son starting pre-school, and having caught every bug known to affect kids on the Planet; except for gastro and nits, and for that I am grateful.

With food challenges, you have to be well, you must not have had an anti-histamine for seven days (prior to the challenge), so given that its Winter here, it has been a bit tricky to schedule a food challenge.

Food challenges need to be staged carefully and tightly controlled,  our Specialist has a risk management strategy which dictates where the food challenge is conducted:

  • minimal risk foods are tried at home; but if you need support she is happy¬†to do it in her Surgery¬†(coconut was done at home today!);
  • low risk foods¬†are done in her Surgery; where she can monitor progress ( we did the banana & salmon in her Surgery);
  • medium risk foods are done in the Outpatient Department of the local Children’s Hospital; (this is¬†where we did the pea challenge);
  • high risk foods are done on the Ward of the Children’s Hospital; more intense Nursing supervision (almond challenge¬†coming up in three weeks).
    • Prior to the high risk challenge,¬†a lung function and a skin prick test (testing the food on the skin) is conducted, I find this comforting, because if the results are not good, you can withdraw (ie watch me run¬†out of the hospital¬†with son) from the challenge.

There is also one more important requirement with food challenges, as a parent, you need to feel strong, confident and in the right space.¬† I have done a high risk food challenge that didn’t go well,¬† it ended up with¬†me¬†administering the Epi-Pen (the Nurses coach the parents through the process), he was¬† 3 years of age and¬†has no memory of it; I am now proficient in administering the Epi-Pen.¬† But the memory of this and other allergy reactions, make me feel nervous/anxious every time we try a new food.

Today was the day for the coconut challenge, and after much procrastination, the coconut and chocolate muffins were made; I always try to put the new food into something he would be interested in eating, and chocolate is always a winner!

What a relief that it all went well,  my son now can enjoy the texture of a cheesecake, Thai curries and macaroons and so much more.

So TYG (Thank You God) I am feeling grateful and just savouring this little, yet big milestone.

I am confident that one day we will all look back on this and smile.

If you would like to read more about the health benefits of coconut you can check out this post.

Picture Credit: Eat Fit Food Blog

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