As all parents of kids with allergies will know, when introducing foods and starting food trials, you have to be prepared for the worst. The worst being (other than life threatening anaphylactic response): rancid acid smelling poo that manages to seep down your kids legs and squelches up and out of their nappies; thick globules of mucous (and in some cases blood), large chunks of undigested foods and other unidentifiable (wtf is that?!) things to wipe; formidable episodes of chundering; eczema that can range from rough cheeks to full body oozing wounds; wind that is a fucker to get out and a whole load more that I can’t continue writing about as it just makes me so bloody angry! To top it all off, it lasts for days, DAYS!! DAAAYYYYYYSSSS, AARRGGHH!! *Deep breath!*
As frustratingly difficult as our situation is, I have to be thankful that Kk does not have an anaphylactic response to any foods. However, the reaction that he does have is a monumental pain in the arse to manage! I love my kid to bits and have spent a million hours researching how I can help him, as seeing your kid in so much discomfort at the same time as being bloody hungry is a gut wrenching feeling that’s hard to endure at the best of times, but after 16months of it with not a whole load of improvement, I feel like screaming my heart out in a fit of blazing fury. Maybe then I could let off a little bit of pent up anger and continue this long and arduous journey of sleepless
A few months ago I was eating a diet of next to nothing that left me feeling exhausted, depressed, anxious, weak and basically just a mess. Yet, the world continued to spin, today’s and tomorrow’s came and I still had 2 kids and a home to look after! It was all completely ridiculous, this was absolutely nothing like how I had dreamed motherhood would be! Our home became rife with passive aggression, egg shells and stacks of washing up. My husband and I were in survival mode and instead of continuing with our happy and loving relationship, we became “old friends” who happened to live together getting our jobs done the best we could and taking it in turns to respond to the million cries in the evenings and night.
We needed help; we needed advice; we needed answers; no, actually, we didn’t need any of that, we just needed this to end! We were desperate for it to end! It took a long time for the paediatric and dietitian appointment to arrive once we moved to Melbourne. Kk was just shy of 1 years old and I remember the doctor saying, “oh how exciting, are you looking forward to his birthday?” I tried so hard in that moment to be like a normal excited mum but I couldn’t. Quite frankly, excited was the last feeling that ever crossed my mind when I thought about his birthday. The feelings I felt were more like anxiety, grief, realisation that we had lived in this hellish situation for a whole year and actually …anger! How unfair! How unfair it was that my child wouldn’t be able to enjoy having a normal birthday with party food and cake and how unfair it was that we as parents wouldn’t be able to experience watching our child having these fun and happy experiences. How could we even invite people over to help celebrate his birthday and offer them food and cake yet deny our birthday boy, instead offering only pear and raisins as “party food”?! It made me so sad, and mad, just thinking about it.
We went into that appointment ready to hold a peaceful protest if we weren’t presented with answers, unsure of whether there even were any, as our lives could not continue this way. I had read and heard on many occasion that health care providers often fob “allergy mums” off; give mind boggling and sometimes dangerous advice and sometimes seem like they’re just talking out of their arse! I wasn’t quite sure what to expect but I wasn’t too surprised when the advice we were given ranged from outright madness to game changing greatness!
I will never fully understand how on earth a 20minute consultation could encompass such absurd chat, such as to offer Kk Turkish flatbread, which has “a bit of everything in it”, as, “a lot of kids with allergies are mysteriously able to eat it with no reaction!” (?!?!?!) And “have you given him couscous? As, despite it being wheat, he may be able to tolerate it!” *cue horrified stare* Yet, at the same time, also give the advice that has changed our situation considerably?! Advice that is so simple and logical yet, at the same time, completely contradicts our protective intuition as parents. It was a bit of a head fuck to say the least!
We were told to give him food! Yes, the foods that he is allergic to. The foods that cause a shit storm of diarrhoea, vomit, ear ripping screams of pain, sore yucky skin and days of moaning, clinginess and insomnia. I definitely wasn’t expecting that and, for a minute, I wasn’t sure if she was being serious until she explained that the idea is to give very small amounts in order to build his tolerance. In that moment, every negative feeling I had congregated together in the pit of my stomach and transformed into hopeful and exciting anticipation. For the first time in, what seemed to be, a very long time, I had butterflies in my tummy! Doors, rooms and corridors of ‘what if’s?’ had been unlocked and my mind was working in hyperdrive trying to figure out my next plan of action whilst simultaneously shitting bricks about the realities of what would actually happen.
We started a few days later with 2mls of Almond milk, hopeful to experience a mild reaction that we as a family could just about cope with. It didn’t take long before the reaction started and not much longer before we had poo smeared all over kk’s clothes and dripping out of his trousers on the floor. It was on the cupboard, my trousers and in my hair! He was crying, wriggling everywhere and trying to climb on me for cuddles and comfort. We were covered in poo but he needed me to hold him, so that’s what I did! The next few days were utterly horrendous and Bay, my 2yr old son, had started to lose the plot. How scary and confusing it must be for him listening to his brother screaming in pain for days. The guilt I felt was incredible. Guilt for causing all this for Kk and guilt for not being able to protect and comfort Bay adequately. What an almighty fail!
It took a couple of weeks to get over this horrific episode but we weren’t quite ready to give up. I doubted very much, after that reaction, that just by giving a smaller amount we would have any reasonable outcome. So, I decided that instead of giving him the foods, I would start eating them instead. This way, he would gain some tolerance via my breast milk and I would be able to eat healthily again! Oh my god, the thought of having some milk in a cup of tea, or a piece of toast, even just a cracker, was overwhelming!
I started slowly and, to my utter surprise, Kk’s reactions were so slight in comparison that, although still tough to manage, we were all just about coping! At times I needed to slow down more, cut back or even start again but we were, incredibly, making progress! Each time his reaction started to fade, I increased the amount I ate. It was so simple and we were seeing positive results for the first time! I was feeling so good, a feeling that I hadn’t felt for a long while, that at times I failed to remember that the world didn’t just revolve around me and my crazy family and on more than one occasion ended up acting like a complete dick!
Quite early on when I started reintroducing foods back into my diet (and was incredibly thin), I went to a mums and bubs group for the first time in a local hotel. I happened to be the only one there (typical!) for the first hr before other mums started to arrive close to lunch time. I was about to go home to cook lunch for us but thought I’d stay a short while and try to make some friends. I was starving by this point and as one lady looked through the menu I started to dream about ordering food once more! She obviously didn’t like what was on offer much as she was complaining about the small snack like meals that she was reading when all of a sudden I blurted out with, “oh, you just want a big fry up don’t you?!” Because that was exactly what I was craving! She stared at me and the other mums went deadly silent and stared at me also. It was only then that I realised what I had done. I had only gone and said that to the mum in the room who happened to be very obese. Oh fuck! Needless to say, I apologised and left shortly after. No new friends today!
It took 3 months for me to be able to eat a relatively normal diet without Kk reacting. I just reread that sentence with a little tear. A tear of happiness, joy, relief, hope and sorrow. It’s been a very rough journey, one that I wouldn’t wish on anyone, one that I never want to have to do again, one that broke me and my relationships with family and friends in so many ways, yet one that’s not quite over. I am eating an almost normal diet, but Kk is not! He isn’t getting the nutrients in his diet that he requires and is still very reliant on breast milk. We have started to reintroduce foods in his diet but the progress isn’t quite as positive. We will continue to persevere and pray that he doesn’t come running out of the school gates at age 5 shouting for bitty!