Recently our little boy has been struggling with his eczema itching more than usual. It especially happens on his feet and ankles, as soon as he is put down on a flat surface eg the carpet, he vigorously rubs his feet until they are raw and weeping. He is clearly uncomfortable and cries a lot in his sleep. Even in bed he rubs and scratches while crying loudly, with his eyes still closed because he so wants to be asleep.
I decided to take him back to the first allergy clinic we went to, because it had been six months since they saw him and they suggested we come back now he’s 12 months. I figured most of his eczema was from friction from crawling, as it is mainly on his feet, knees and elbows. But I wondered if maybe it was a new allergen such as dustmite or another environmental one. So off we went for more skin pricks.
The good news: still no environmental allergens, and the wheat one has stayed the same size instead of growing.
The bad news: he’s still very sensitive to eggs and nuts, and his dairy one in particular has grown heaps more sensitive- now it’s the largest wheal on his back when it was only “marginally positive” last time. This makes sense as he recently had an allergic reaction to sitting in some coffee, which had been spilled on the carpet by accident and mopped up with water. His legs and feet came up in hives, and I’m still not sure whether it qualifies as a contact allergy or if it got in through his eczema and caused a reaction that way. Either way it’s important to know his dairy allergy is getting more sensitive. In addition to this, they tested many more tree nuts. Last time he was tested he was positive for cashews and negative for hazelnuts and almonds. But now he got positives for almost all of them- almonds and hazelnuts, as well as pine nuts, pistachios, pecans and of course peanuts.
This time we were given a new eczema management plan which included bleach baths to kill any staph infections in the eczema, stronger steroids, and a new water soluble barrier cream. We were also given an epipen. I am surprised that I felt nothing when given the epipen. If I’d ever known before having him that he’d have one it would have freaked me out. Now it’s just one of those things I have to pack in my nappy bag like wipes and a change of clothes. I guess I knew it was coming and it’s better to have it than not. I have surprised myself with how much I have taken all this allergy stuff in my stride, just reading labels and memorising lists of alternate names for allergens like just another parenting thing you have to do. I’ve learned so much about food, and have persisted with trying to find ways to create alternatives he can have so he has a range of nutrients and not miss out on everything. I’ve even managed to adapt almost all our dinners so that we can all eat the same thing and nobody misses out- it’s just become normal to do so.
But last night was the first time i really broke down and it really got to me. A couple of things have happened recently that have really affected me, and I’ve really had to face the reality of how much my life has changed and how hard this is.
The first one happened on the weekend. We were at a friend’s 30th- just me and the kids because my husband was working, so I was keeping an eye on them both. There was a lovely spread of food, but it was so allergenic. Breads with dips like pesto, or cashews- gluten free crackers were provided but they contained cheese and eggs- and platters of cheese. Literally the only thing he could eat were the original potato chips. So here I was feeding my baby chips while all these other babies were toddling around with bits of bread and cheese dropping all around. I honestly didn’t mind. My friend hosted a lovely party, she warned me about the nuts, had set up a play area away from the food, and I kept him over there and he had plenty to do and didn’t need to go near the food. And it’s totally my responsibility to bring food for him, so I wasn’t at all upset that my friend didn’t have any options for him, it was just a bit of a realisation of how much he’s allergic to, again.
What did upset me though was that I turned around for one second, leaving him safely on the playmat to attend to something briefly. When I came back to him, there was a small tub of grated cheese just inches away from his hand. And a bit further over, grated cheese was scattered all over the floor. Turns out someone had just arrived and got this cup of cheese out for their toddler to eat, and he was just wandering around spilling it all around my little boy.
Even my three year old was happily eating all the bread and cheese, but knew to keep far from her brother while she was doing so. It’s so painful to know that she has to carry this burden of her little brother’s allergies, while other people ignorantly scatter them all over the place – adults, who haven’t got a clue and don’t even think twice. I didn’t say anything, because I didn’t want to upset the person at the time, it feels rude to clean up someone else’s mess and be like “my son is allergic to this!” I know before I had him I might not have thought about it either and would have been really upset if someone did that. Yet my little daughter asks me about every food: “what’s in this?” She’s even learned to read boxes and to make “gluten free” food in her pretend play. So sad that I can trust her better than adults.
The other thing that happened was at a music playgroup we attend. Last term I found myself getting quite stressed out because I noticed people were bringing snacks from home like pikelets, to feed their toddlers during the session. Then when we had free play after, there were crumbs around the toys. One time in particular I couldn’t put my son down because he was obsessed with putting crumbs in his mouth and there were pikelet crumbs all around the baby toys.
I hate to be a bother to people, and don’t want to be that person that inconveniences everyone else. But in that instance I did tell the leaders and they responded swiftly and effectively by enforcing a policy that food can’t be eaten in the play area. They were really great about it and sent out reminder emails, put signs up, and reminded everyone at the start of the session. It has definitely made it easier the last few times.
But last Wednesday I just happened to be nearby when a mother spilled her coffee in the play area. I’m not sure if she knew I was watching her. Instead of clean it up, she put one of the dress ups over the top of it and walked away, went on her phone, and never came back. So I cleaned it up myself, seconds before my baby was going to touch one of the toys the coffee had landed on. I took the dress up away and told one of the leaders that it needed to be washed. What makes this worse is that it was a parent who I am aware has a child with some kind of food sensitivity too, so I would have expected her to be more aware. And it was spilled coffee that he has had his only ever contact reaction to, so I was very alert when I saw it happen.
Only afterwards it all sunk in that I have to be so vigilant. I don’t mind at all watching my children- it is my responsibility to monitor whatever my baby puts in his mouth. But now I feel like I have to watch all the adults too and that seems wrong. What upsets me more than anything is a conversation I got involved in on one of the thermomix Facebook groups I follow, a few months ago now. It was someone asking for recipe ideas because they weren’t allowed to pack several allergens in their child’s lunch because a child in the class had allergies. The conversation that ensued was things like “if we can’t bring anything anyone is allergic to there will be nothing left, it’s going too far.” And “peanut butter is the only thing my child will eat, why should he suffer when he’s not even the one with the allergy?” And my personal favourite: “children should be taught to take responsibility for their own allergies, like they will have to in the real world.”
Um, just NO. That comment made me rage. Every child I have met with allergies is brilliantly mature and responsible from the youngest age. Like I said, even my three year old is responsible for her brother’s allergies. A school isn’t going to restrict lunches unnecessarily. If a child can be safe with others packing their allergens then they won’t be managing it by putting a ban on it. If you’re being told to leave certain items at home then you’d better believe there’s a genuine risk to a child’s life. Luckily so far mine doesn’t seem this severe, but I’ve known children who can’t use any shared equipment such as balls and monkey bars if anyone has eaten dairy that day then touched it. If someone is that allergic they can’t just “manage” it at school. They won’t even have access to an education if they can’t use the computers and sports equipment, the toilets, the taps, etc all because your precious snowflake can’t go a few hours without a peanut butter sandwich.
Not everyone knows this, but this little boy has been a worry to me since the very start. Conceived immediately after a miscarriage, his pregnancy was then a threatened miscarriage too, due to subchorionic hematoma. He was born perfectly healthy but kept on having all these threatened issues. First he failed his hearing test twice. Also he wouldn’t latch at all so was syringe fed for the first 10 days. Then the paediatrician couldn’t find his femoral pulses and he had a wheeze so he was sent for an urgent ECG. No issue there so he had to have a chest X-ray. At four months he had surgery to release a severe lip and tongue tie. He developed extremely severe eczema at this age and allergies were first mentioned then, along with asthma. Whenever he got a cold he got terrible breathing. He was put on an asthma preventer that he has to use daily. It works, so he’s likely asthmatic. We were told to take him to physio for plagiocephaly or else he’d need a helmet. Physio went well but then she picked up low muscle tone. All these were individually very minor issues. But the allergies weren’t. I was first told some would be false positives. They weren’t. And yes he may outgrow some, but right now they’re all real dangers. So I have been dealing with constant threats and perceived threats to this little boy since the very beginning and I have risen to every challenge and done the best I could. All the while, he has been a happy, beautiful, loving, funny little boy while facing these challenges himself. So if anyone dares to say to me that he should learn to handle his own allergies and they shouldn’t have to change their behaviour I seriously fear for them. Because this boy is incredibly precious and dear to me, and mama bear will want to tear shreds off that person.
So as someone who hates to be the one causing anyone else inconvenience I am learning to get over that. Too bad for them. Next time I see someone spill an allergen and do nothing about it I am going to call them out on it. I am going to have to be my son’s advocate. I will be always watching and I will protect him. Yes this is my new life. I can’t fully relax and I will be hypervigilant. And I may insist on reading labels, or educating you on why “gluten free”doesn’t mean it has no eggs or dairy or nuts. Or why a dairy allergy is not the same as lactose intolerance. Because if I have to feel on edge when I see the word “nuts” in a supermarket aisle simply because my brain has learned to be alert to that threat, then every other adult can at least learn one new thing and clean up after themselves to make the world safer for my son.
And most people are really thoughtful and great, and our friends and family have been wonderfully thoughtful, but I’m no longer going to just keep the peace for the sake of some people feeling comfortable.