I get the craziest emotions when we get our appointment letters for food challenges through the post. A part of me fills with worry, anxiety and anticipation, building up more and more in the weeks leading up to the appointment, eventually stirring to a frenzy in the days before. But... there is also a small part of me that feels excited! What if this is the day we find out that they have outgrown their allergy?
Either way, food challenges are life changing in one way or another and a big part of our family life.
On top of the initial worry of potential life threatening reactions to your little lovelies, and the anxiety of spending the day up on the ward, if it is your first challenge you may spend the run up to your appointment wondering what the day will look like.
Teddy is three and a half now (if you've ever asked a three and a half year old their age before then you'll understand that the half is VERY important) and has had 7 challenges in hospital. His first was when he was only months old. Ted has many more challenges ahead of him, as does Brodie (one and a half, the half being a little less important) who is yet to have one in the hospital, though it is something that we have discussed with their consultant and the near future holds many more 'in hospital' challenges for our family.
The experiences that I am sharing are those of our family, at our local NHS hospital (in the UK) and may not mirror exactly what goes on where you live. Through sharing our experience I hope that it will offer comfort for what their appointments look like, how to prepare for them, and as always to reassurance you that you are not alone on this strange old journey of ours.
The Lead Up
Once we have made our appointment the hospital arranges a secondary appointment which usually happens one week before the challenge. This appointment is to go through what to expect on the day, but more importantly to make sure that Ted is well, has not had any steroids within the last month and to remind you that no antihistamines can be taken in the five days before the appointment as this can lessen any reaction.
They also let us know if we need to bring anything with us to the appointment. For some challenges we have been asked make or buy the food that we are challenging.
The Morning Of
To get over the anticipation that I feel on the morning of challenge day I pack everything that we could potentially need (and then a little more) to help to clear my mind in getting prepared. Doing this the night before helps me to sleep better, although being honest, I don't sleep much the night before a challenge.
I pack spare clothes, for everyone! Yep, we learnt this the hard way in a previous sesame challenge, projectile vomit all over EVERYONE!! This resulted in Ted wearing spare hospital clothes, and me sat in soaking wet clothes for the remainder of the day.
Also, if little one becomes itchy or come out in a rash or hives, they find it comforting to put on fresh clean clothes.
I do pack food like we are off for a trek in to the unknown - which I guess is exactly where we are going.
On the morning of the food challenge, the hospital advises that Teddy skips breakfast. There are different reasons for this including that an empty tummy is good should the above occur, but also quite a large amount of food may need to be eaten to be able to get a pass.
He has been reluctant to eat allergens in the past, understandably. It's always a strange environment for them with everyone looking on in fear yet willing them to eat the 'poison' we've taught is dangerous to them. I pack lots of nice foods that I know the boys will enjoy eating and this has been helpful for making the allergen more appealing in past challenges. If the challenge is failed very early on and not much has been eaten, then it is good to be able to offer some nice food afterwards.
I have always made Teddy well aware that he is going into hospital to try something that could potentially make him poorly. It's important that he knows we are battling his allergies together, as we do with his asthma and eczema, so we don't trick him or lie to him about this. Being brave and a little bit different is a part of an allergy child's life, like it or not.
Arriving at the Hospital
When we arrive at the hospital we go straight up to the ward for the standard takings of height and weight by the nurses. Ted is given his own bed on the ward which is usually shared with 1 or 2 other children of varying ages ready to do other challenges. The allergy nurse comes to explain that she will be looking after us throughout our time in the hospital. We then fill in some paperwork, confirming that no antihistamines have been taken within the last 5 days and that Ted is fit and well.
We also have to sign the dreaded consent form to show that we understand that Ted will be given a known allergen and that a reaction may occur.
A play therapist comes around and asks Ted what he is interested in and what toys he would like to play with, they also put on a film for us all to watch.
The Challenge
Once we are all settled on the ward then it's 'showtime' as Teddy would say (where the heck has he picked that up from??) and the challenge will begin. You start by having temperature, blood pressure and oxygen saturations taken, which is repeated 15 minutes after each increased dose of the allergen being challenged.
A nurse stays with us throughout our entire stay, watching over to check for any worries that I have but mainly of course to make sure that no reactions are occurring in-between doses. The challenge usually begins with very tiny amounts, that double in size once each dose has been tolerated and that section of the challenge has been passed.
If we pass a challenge (yaaaayy!!) we usually stay up on the ward for an extra hour or so just to make sure that there are no delayed reactions. Ted usually just plays or makes his way through the many other snacks that I have brought for him, still under the watch of a nurse.
We are then discharged smiling, given open access to the ward for the next 24 hours and reminded to keep an eye out for any delayed reactions that occur later in the day. Although we are told that this is very rare. Before we leave, the dietitian will come to see us to explain how to reintroduce the allergen back into Ted's diet and how to manage it going forward.
If the challenged is stopped due to a reaction, it will be classed as a fail. The nurse may call for the advice from the doctor to decide on what line of treatment is necessary at this point. We then will stay in hospital for a little bit longer under observation to make sure that the medication is working and that the reaction is under control. The dietitian will then pay us a visit before we leave to show us what the results of the challenge look like regarding Ted's diet, how we can manage it and what substitute foods are good to eat.
The hospital may advise that we come back in to retrial in a few months time or to come back as an out-patient for some SPT or blood tests.
Doing these challenges cause me a great deal of worry and stress and many sleepless nights but the nurses all reassure me that these feelings are completely normal and that I certainly am not the only parent to feel that way.
They understand when I have arrived in floods of tears and when I say that I forgot my PIN number through sheer worry when buying the milk for the challenge. They understand when I become all panicked and question every breath he takes during the challenge. It is the exact opposite of what you expect when taking your child to the hospital; taking them in well and in good health and then leaving with the risk of making them very poorly.
Having said all of this, we do them for a reason and they are a crucial part of our allergy management. Challenges are the only true way to test an allergen in a controlled and 'safe' environment and as parents, we need to be prepared for what that reaction could potentially look like. On the flip side of that coin, these challenges have also informed us of foods that he was previously allergic to but can now tolerate! This makes a huge impact to our lives and helps to remind us that things are sometimes progressing and moving in the right direction.
From our personal experiences, Teddy has recovered from his challenges much quicker than we have as his parents. He is becoming a resilient and brave little boy and his allergies have made him the little strong character that he is today.
I wouldn't change that for all the dairy free tea in China.
If you are booked in for your first food challenge, we wish you the very best of luck!
Free From Mummies Top Tips for Food Challenges:
1. Pack heavy. Bring spare clothes and enough goodies for the month
2. Tell your child what's happening - tackle the day as a team
3. If you are taking siblings with you to the appointment, make sure you have adult help on the day
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