Timing in with Food Allergy Awareness Week this week, I have decided to cut a LONG story short and share some of the things I have learnt and some of the experiences I have had being a mum of two children with food allergies and intolerances.
Master 3 first got eczema some time after his birth and we started the GP shopping. We had ‘experts’ who recommended parrafin wax (a known carcinogen) which played up even worse with my son’s skin, we had others who diagnosed school sores/dermatitis/psoriasis, you name it, only to find out it was and still is eczema and we have GPs who have sworn there is no link between food and behaviour and food and eczema! We have spent a small fortune at the chemist on creams from natural to steroids and back again. I am sad to say we did take their advice and I have thinned my son’s skin out with steroids, put parrafin wax on him, and more and nothing really worked anyway.
It was when Master 3’s eczema got so bad and he was so beside himself, the mother guilt really set in. GPs threw anti-biotics, prednisone and more steroids at him and nothing worked. I turned to naturopathy in desperation. Master 3 ended up on a gluten and dairy-free diet and 6 weeks later, the behavioural changes in him were INCREDIBLE. I had always said it was like he had ADHD but all of a sudden he ‘turned a corner’ – following directions, thoughtful, agreeable, calm, and no ‘naughty’ behaviour, just playing by himself for ages. We didn’t pair the diet with his behaviour and were questioning whether the diet was doing much for him. So we let him have a piece of cake – the next day he was back to ADHD and the eczema was back, clear as day.
In the meantime, from other parent reports, I heard about allergy prick tests. So we got that done. Master 3 reacted to everything yet we were told none were significant except dust mites. It didn’t sit well as I knew he had issues with gluten at least but the doctor didn’t want to know about it and I could tell he didn’t know much about intolerances.
Unfortunately, the eczema still didn’t clear properly and one day Master 3 was just looking so ‘unhealthy’ (see picture) so I decided it might be best to go to the dietitian to see if they could shed any more light and also to look at his diet since we were definitely staying off gluten. We started an elimination diet to go back to basics and then start adding in foods with salicylates, amines, glutamates and finally dairy. Four months later, and we have still not gotten to dairy as we are STILL trying to work out which foods Master 3 cannot tolerate. The trouble is, sometimes eczema is caused by a build-up of one food or a group of foods (eg. amines), so you don’t see it for a long time. But other times, it does appear straight away, which is so helpful! It all seems so simple yet when you’re actually doing it, it is so so confusing. People ask why I haven’t kept a food diary – mostly because I haven’t had time between appointments, cooking, checking skin, dealing with the ADHD behaviour, let alone day to day life!
In between all of this, I started realising Master 1, then about 6 months old, also had eczema on his cheeks. He also had a prick test and of course that revealed ‘no allergies!’. But as soon as I took the gluten away, the eczema went away. We added it back in, the eczema came straight back.
Master 3 had another flare up and after a couple of weeks of eczema and ADHD behaviour, I finally realised we had finished his bottle of fish oil a while back and hadn’t bought a new one. The next day, calm, gentle Master 3 was back and the day after, his eczema was all gone! So we had another win!
I got confident after that, thinking maybe it was not so much the food chemicals (ie salicylates/amines/glutamates), but the fish oil! Oh the speculating!! I had done a lot of reading by this stage which talks about some children having a ‘leaky gut’, where food chemicals slip into the bloodstream and head straight to the brain, giving them the ADHD behaviour. It is very common with the children with autism whom I work with and I have now seen it for myself!
The next professional was a kinesiologist. I had high hopes and we were trying a different angle, first dealing with Master 3’s ‘psycho-emotional’ issues which can affect how the body works, which lastly affects the skin. We ‘cleared’ some energy and I swear Master 3 was a different boy. We also had chinese herbs and ‘thuja’ to help his thyroid hormones but no improvements with his skin.
In fact it got worse, as we introduced glutamates – corn, sultanas, peas. A big no! Hello eczema and ADHD again. It was pretty upsetting as a gluten-free diet includes a lot of corn. Over a month later, and we have not been able to get rid of the eczema or behaviour. I have contemplated steroid cream again, I’ve contemplated throwing in the diet and I have contemplated the most ridiculous things causing it all!
We had run out of private health benefits for further kinesiology (which I do believe would probably help in the end), but without any idea of a timeline (and the kinesiologist did not ring me back or return my email), I feel like we are out on our own.
It is a very unfinished story! But on the positive, I have since found a facebook page and blog – Feeding two growing boys which links in thousands of parents of children with food allergies and intolerances whilst providing up-to-date research on the real link between eczema and food.
Finally in Food Allergy Awareness Week, I thought I’d list some of the costs, a food intolerance or allergy can have.
- Coming home from the naturopath fathoming how to break the news – ‘doesn’t deal with change well’ Master 3 (just 2 then) was about to start a gluten and dairy-free diet, let alone a pile of concoctions and elixirs was pretty hard. All in the week I was due to start back at work and was busy trying to keep up with baby food supplies for Master 1! It was almost too much to think about.
- Dealing with a two-year-old for over a year who was impulsive, rough, couldn’t listen/follow directions/look you in the eye, could only roll around on the couch and couldn’t get his brain together to do anything more, yet after 5 minutes alone, he would rip up his favourite books and toys, smear poo, put soap all through the bath, rip down the washing etc etc!
- The disappointment seeing Master 3 with his ‘ADHD’ behaviour again after his gluten trial and having to put up with the tearing up of the house and all of the other ADHD issues without knowing how long it would take to clear the gluten from his system.
- Coming home from the dietitian thinking about breaking the news of an ‘elimination diet’ – egg, cashew, pear, green beans, meat, rice, quinoa, legumes and carob. All right before his upcoming birthday and Easter.
- Wrapping my head around creating breakfast, lunch, dinner, snacks and treats out of the above foods, week after week.
- Going from having a ‘party piglet’ who used to love trying all the new ‘party foods’ to dealing with birthday parties and seeing Master 3’s eyes immediately check out the food table. Not to mention any other meeting around mealtimes with other kids and knowing he was wishing he could have some. And currently seeing Master 1 eating some foods or the ‘just a little bit?’, tearing at your heartstrings!
- The confusion for Master 3 as we chopped and changed what he could and couldn’t eat only JUST managing to always have some treat that he could have.
- The highs and lows – professionals telling us they can help Master 3, finding gluten-free and fish oil worked to the frustration of yet more money spent, the sinking feeling of seeing eczema or Master 3 ‘acting up’.
- Master 3 getting upset with himself ripping his favourite books up, getting into trouble for his crazy behaviour at home and at daycare when he does not want to be like that.
- Constantly thinking about food and Master 3’s psychological well-being and health.
The financial cost
- The appointments
- The food – $7.50 a loaf of bread, expensive rice milk, quinoa etc makes you think twice about serving up extra food when it might end up on the floor
- Spending hours in the kitchen as it is the easiest way to deal with the elimination diet is to cook it ALL yourself – cashew butter (no usual spreads allowed), pear chutney (no nuts allowed at daycare), hummous, pesto, mayonnaise, cake.
- The mental energy in thinking about who is the next best professional to see about this, where can I get better information from if the medical world doesn’t know, dealing with the ‘he’ll probably just grow out of it’ comments, writing a menu for the week (including the rest of the family’s dietary issues and Master 1’s sensory pickiness) and basically serving 3 different meals at every mealtime.
- Constantly thinking about making sure we have enough food in the fridge for 2 hungry boys as I can’t just go to the pantry and find something else.
- The cleaning up from Master 3’s ADHD behaviours, having to have lightning quick reflexes, getting so nervous taking him out in public, constantly managing his behaviour but trying to have ‘understanding’.
- Taking Master 3 (and a new baby) to sit in waiting rooms for hours for all of the appointments, whilst trying to keep him behaving appropriately.
I’m sure there is more!
Thankyou to everyone who has taken the time to read this. Please pass this onto anyone that may be interested or also looking for answers.