interview with a local mum by Dr Kate Little
My daughter was three years old when she was diagnosed with a peanut allergy.
It all started when we were on a family holiday in Ireland. I had eaten a bag of nuts when we stopped for a break on a family walk. I stroked her back and within minutes she was screaming in pain and had severe hives all over her skin. Skin prick tests and blood tests at the hospital confirmed peanut allergy and we were advised to avoid all nuts until she was older.
Every year since then, her allergy levels to peanut have been rising. She is now eight years old and they are now grade 6 (the highest level) so there is a real risk of a serious anaphylactic reaction if the allergen comes into contact with her mucus membranes (eyes, nose and mouth). Thankfully, when I ate nuts and touched her she only got a really nasty localised skin rash, which made her feel unwell and uncomfortable. Anaphylactic reactions are much more dangerous.
How has this affected her life?
Having such a severe allergy affects the whole family and we have to take numerous precautions in our day to day lives.
As well as avoiding all nuts, she now has to avoid any product that says, “may contain nuts”. This warning represents a real risk that there is a trace of nuts in the factory. For example, a factory that makes fruit and nut chocolate may clean its system and then make chocolate buttons. A trace of nuts may be present in the first few batches, but the consumer cannot know which batch they will get.
My daughter knows that she needs to wash her hands properly with soap before she eats anything and not to put things in her mouth (or up her nose!) if she doesn’t know what they are.
We carry the anaphylaxis kit everywhere we go and constantly check and double-check everything that we as a family consume.
When we fly, we have early boarding so that we can wipe surfaces down beforehand. You can never be sure that you will eradicate every potentially harmful thing, but you can only do your best.
She can’t eat anything in cafes and restaurants. A small thing like using the same tongs to pick up almond croissants and plain croissants, would be enough of a cross contamination to potentially cause a serious reaction.
At home it is easy to avoid nuts as we cook from scratch. On the plus side, it means that she eats less junk! It is trickier though, when she goes to other people’s houses. She just has to be really vigilant and we rely on people to decontaminate their home environments.
We always ask people whose homes she is visiting, to wipe all surfaces with antibacterial spray and make sure that everyone washes their hands properly with soap. This is enough to denature the protein.
It is also important to make sure that any dishes she is eating off, come straight out of the dishwasher, as otherwise dust from products containing nuts like muesli, may come into contact with something that she might put in her mouth. For example, my parents eat muesli that has hazelnuts & almonds in it. When the packet is closed, a dust is released, which can land on a glass or mug that she might later put in her mouth.
How has the nut allergy affected you?
I live my life on a knife-edge trying to manage the fear of something serious happening, whilst being aware that we can only do our best. I also find it hard to manage the social element and how easily parents or schools or my family might perceive me as being neurotic.
I try to make sure that when I talk to people about the precautions we need to take, I get my point across without spreading fear or panic that might make people stop listening, or stop trying, or exclude her. One of my biggest worries is that she doesn’t get invited to social events or on play dates, because it is too much responsibility.
Is your daughter aware of your concerns?
No I don’t think so. I think that we are lucky with her personality. At the moment it doesn’t seem to bother her that she is a bit different.
The allergy itself does frighten her though and this is getting more apparent the older she gets. The hospital have said that they will put more support in place for her as she gets older and have recommended some great on-line resources too.
We have learnt from some near misses that we all have to check what we are eating the whole time. For example, I once bought what I thought was some Kinnerton chocolate (which is always nut free) as a treat. My son (who was two years old at the time) had a meltdown when I didn’t check the ingredients because this is so ingrained in our routine. To pacify him I checked the packet and to my horror, it clearly said “Not suitable for nut allergy sufferers”. It turned out that it wasn’t Kinnerton chocolate at all, but another company that used similar packaging.
So this has wide reaching consequences for you all. That carries it’s own weightiness…
Yes, and I am the sort of person that cares far too much what other people think. I have to wrestle with knowing that this is the right thing to do for my daughter and the feeling that I don’t want to always ask the routine questions that are necessary for her safety, for fear of upsetting anyone. It is bizarre really that such trivial concerns go through my head when I am dealing with something as serious as this, although of course, when it comes to it, I will always put her health first.
It sounds uncomfortable
Yes, and I don’t want it to be uncomfortable for other people or to make them feel embarrassed. The more we do it though, the less that is apparent.
How has it been at school?
School has been more of a challenge than I thought, but I guess that the staff are learning at the same pace as everybody else.
Take for example the junk modelling they do in the classroom, which involves old packaging that people bring in from home. When she first started school, people were sending in packets from Bakewell tarts and Crunchy Nut Cornflakes, where there is a very high chance that dust from the nuts may be present and then transfer onto the kids’ hands.
School trips are also a challenge, so I usually go on the trips which the teachers seem to prefer. I can then make sure that surfaces are wiped down especially around where she is eating her lunch and that someone is sitting with her to remind her to wash her hands before she eats things.
My biggest fear about school is bullying. I know that’s a bit of a strong word, but that element really worries me, particularly when she goes to secondary school where everyone brings in his or her own lunches. For example, a boy at school recently said to her “I want to give you a nut to see what happens.” It took all my strength to stop myself from going to speak to that child and their parent. I had to reflect and remind myself that it is just kids. So the worry is real and that is scary.
I reassure myself that because she is so feisty that might keep any bullying at bay but then again, it might also attract it. We are lucky though that the year group that my daughter is in is generally a really caring bunch and they all look out for her.
If you are constantly on this knife-edge, managing 2 children and working full-time, how do you look after yourself?!
I don’t know. Sometimes I feel that this is what a nervous breakdown feels like. I’m holding it all together all the time. I can only describe it as being like a teddy bear holding in its stuffing while one little seam is going. If I let that seam go, then the whole lot is going to fall out. So I am constantly patching up, and patching up, and making sure that we are all fine.
If she was having anaphylactic reactions all the time, then my anxiety levels would be through the roof, but thankfully she isn’t, so we seem to have managed it well this far. The allergy specialist said to us the last time we were at hospital that we are the only family that she knows whose child has a Grade 6 allergy and hasn’t been in casualty or ICU with anaphylaxis regularly. So it makes us feel that whatever we are doing, we are doing it right and that is really empowering.
It sounds so hard and most people just won’t be aware of just how difficult this is for you. Thank you for sharing your story.
For more information on severe allergies, see the following resources:
- Anaphyslaxis uk
- Allergy uk – this is a telephone line for advice and safe airline travel
- Facebook –it can be useful to join relevant groups, to post queries and seek recommendations.
- Jexco.uk provides really helpful information on epipens and how to use them. There is a kids area with games that normalises it for the children.