I purposely titled this the Dance of Hope, not healing. I have noticed how often the word 'healing' is in recipes and food websites of those seeking health. There are many attractive phrases that slice to my deepest emotive being and draw me into a journey of belief in food that is beyond it's capabilities. Not that I think our systems can't improve, or that troubling behaviours cannot be successfully managed, or that some foods are not damaging to our bodies while others have profound benefit - but I am learning the hard way how individual our complex systems are, and how unhelpful it is to be myopic about diet.
Parents of food intolerant children earn their nutritional 'degree' from the University of Google, become proficient in trendy food lingo, 'wholefood' phrases and even neurochemical terms in our pursuit of a better life for our loved ones. At least that's my wry summary of the thousands of hours spent trawling through books, web pages, articles and blogs. Not to mention the hours in the kitchen!
Other's gains dangle both hope and fear. Give insight, and also red herrings. We learn tips and tricks from one another, a seeming 'breakthrough' only to discover first hand it does not apply to everyone...in particular our child. Absolutes do not exist in this world! Never, ever is the phrase more cutting 'your child doesn't come with a book' than when tearing your hair out to discover the individual matrix of your food sensitive child.
The journey starts with reaching a point of desperation. When the physical and behavioural symptoms of your child dictate action must be taken. No matter how hard the action, staying the same is finally harder. There are many parents out there who like me, look back on early years and months and wonder how we survived the extreme symptoms and behaviours. For us, there were some physical symptoms for our son, but they were not the desperation triggers, it was the behaviour. The uncontrollable anger and violence. Having three elder siblings that we were able to 'figure out how they ticked', we were quietly confident that it wasn't from a lack of consistency and boundaries. In the static haze of coping through the years of his screaming and the injuries we were aware that we needed to go beyond coping and find the right help.
Help was found after GP, allergist and friends seemed to be pointing in the 'RPAH Elimination diet' direction. The history of it's development is linked here. So helpful has this diet been, that a transformed family have campaigned heavily for awareness under the banner of the Food Intolerance Network, dubbing the diet 'FAILSAFE" (Free of Additives, Low in Salicylates, Amines and Flavour Enhancers). After 10 excruciating days of withdrawals, our son became calm and able to sit through a meal for the first time in his life. I cried all day in sympathy for how much distress he must have been in for all these years. What had he been coping with? The poor little man. And HURRAH for a new child....done deal?
But alas no. Because it's not that simple. Whether it is the fluctuations from testing foods, or other challenges to the system, you quickly re enter the roller coaster of fluctuations and realise that there is going to need to be more of a solution than just eliminating lots and lots of foods. Plus, there is not enormous love for the foods on the 'tolerated list'. The old adage 'a spoon full of sugar helps the medicine go down' certainly applies to helping the brussel sprouts and swedes go down...and that is just the problem, processed foods and sugar are better tolerated but not very satisfactory.
This is where the journey is tricky. Where the solutions of others are not necessarily helpful for you or your child and where expensive, alternative therapies abound and a serious lack of solid answers exist. Whether it's combining the 'Failsafe' diet with another (FODMAPs, GAPs etc) or other treatments, all offer a lot of hope and some therapies can be very expensive. It's hard to know what is worthwhile to pursue, because many undeniably benefit.
Within this tangled web I have been very grateful for some essential ingredients that have provided sanity and improvement.
The first ingredient is love. Love from family (despite their misgivings at our dietary approach), love from friends who have been through the hard battle before, love from my husband who holds my head above water, and love from God through the prayers of others. In the early days I was just sobbing on the phone to my loving friend who comforted me and prayed for me over the phone. She reminded me of the light at the end of the tunnel. If you are struggling through this journey alone please reach out to the support groups and find others who understand!
The second ingredient is a dietitian with her head screwed on. It's also helpful that she has had her own personal journey with extreme food sensitivities and has borne the brunt of being a guinea pig to make it easier for all her patients.
Our dietitian was careful from the beginning to help us not to create 'hypersensitivity' in a child who was very sensitive. She also helped us to see the bigger picture of what can flare behaviours in a sensitive child so that we could modify other factors rather than having a more and more restricted diet.
My 'rough' guide to seeing the bigger picture our dietitian has described is below. Over time, and riding the fluctuations of behaviours and triggers, we have been able to see what are the most powerful triggers in our son's pie. We can even get a bit predictive and realise that if we have a big threat coming up, we need to increase the more effective 'treat-ers'. This is our Dance of Hope.
We can also start to see where the unexplored areas are. One of the areas least utilised for us has been medications, because so far most things tried have had the reverse effect and made him a lunatic. I am starting to really appreciate how long it takes his system to process these challenges. But there are more options available, and our dietitian and allergist are helping us to explore these. With guidance, high doses of B vitamins and Zinc has been very helpful, plus there are particular properties of certain foods that have been effective for improving his sensitivities, (chamomile and sage have been good for our little man - but not a guarantee for everyone!).
Another area is the 'restedness' and finding all the ingredients that build this up. Our stress levels, the type of physical activity we do with our son and finding the exercise that produces a relaxation state are all crucial for helping him to cope with the demands on his system. In recent times I have discovered that one of his settling strategies to process school days is something that I previously saw as an attack on his system. His climbing through grasses and gnawing on roots drove me wild with the 'potential salicylate count', but I have come to realise that it is one of his key ways of processing the stimulus of social environments and by responding in a relaxed way we both win.
This pie has enabled us to help our son have a stronger system so that he can cope with the challenge of more foods, and chew on his oxalis in peace. More importantly, it has kept us from getting even more restrictive with his diet and creating a hypersensitive system. There have been times of great temptation to cut out almost everything, but Marie gently encouraged us to see the weather season and it's influence, and we were able to ride out the weeks of aggravation without needing to get super strict. (But I must laugh here, because to our nearest and dearest our son's diet looks crazily strict, they don't realise that many end up even stricter!)
Our dietitian has also helped us to gradually focus on the tolerated foods that are more nutritionally dense. They are lower GI, they have properties that are helpful for settling tummies or nerve endings. Incorporating these ingredients into most dishes has been beneficial for my son, but also for my sanity.
However, this doesn't mean we aren't still in the 'fluctuations' stage. At the moment, starting school and winter (colds = upper respiratory problems = not good restedness until summer for our boy) are enough of a challenge to his system that he cannot cope with more foods. We have taken two steps back. It's the hard dance steps...the ones where some one has stepped on your toes. And that used to frustrate me.
But I am getting used to the ups and downs and learning that each time we are climbing a little higher. There is room over time, to try many approaches of others to help my son's system, but the key things are very basic. And MY restedness is also a crucial key. I am learning how much I need to make smart choices, and to be kinder to myself.
There is one more thing I would like to comment upon and that is the dance floor beneath us in this crazy tune. It is one of thanksgiving. For surely we learn the hard way that it is sacrifice for another that drives true love. How much we love these little ones who have drawn us beyond ourselves and are thankful for their lives entrusted to us.
Happy dancing my friends...hope you are wearing steel caps if you are dancing near me!!!
Postscript - The Seven Deadly Accusations
(Actually, other people address this issue much better - here is a great infographic for allergy myths)
1. You just need to discipline your child better
Actually, that was the clue for us that something truly weird was going on, that it wasn't just boisterous boy-ness. You know that over-tired, hungry irrationalism that toddlers get if you feed them too late? How ineffective it is to discipline at that time? That's what our son was like all the time. A beautiful woman told me of her family banning her from visiting because her poorly disciplined child would set a bad example. How crushing.
2. There's no such thing as food intolerances, it's just decades of poor diet
Wow. That one is actually being taught in seminars. Hilarious. My mother made everything from scratch and as a health professional interested in diet I had a very healthy diet for our family. Of course, there were hidden additives present in oils and crackers that I was unaware of which has improved - but my son comes from generations of home made food. My mother's home is synonymous with something made from the garden. The answers are still partially hidden, but food intolerances are very real, and sometimes, you were feeding your family very good foods that were aggravating their system.
3. You are harming your child by having them on such a restrictive diet. It's unhealthy
In the one sense, I agree. There is a lot of research to support a highly varied diet rich in vegetables nuts and seeds. However, you must treat problems. I do not tell my patients to run on their freshly rolled ankle despite running being proven by research to have many short and long term health benefits. You can't apply general rules to a compromised system. Same for food!
4. You could have prevented this
Actually, the medical fraternity is stumped (but still working on the best answers). They have tried mothers avoiding all allergens during pregnancy and numerous variations...allergies are still rising. Their helpful brochure with current recommendations is here
5. You are making your family have an unhealthy diet.
Hmm, it's hard for that one not to sting. Sugar is easy to use because it is well tolerated, you can quickly slide into a fried potato induced depression - but there are actually many healthy choices (as I mentioned above). This is the Food Intolerance Network's fact sheet on healthier choices.
6. You are turning your child into a social freak that is paranoid about food.
Fact is, there are large social consequences for restrictive diets, and that's why you need support and a good dietitian to make sure you make the best choices. On the flip side, you are also preventing them from becoming a delinquent/medical basket case with far worse social consequences. Don't be discouraged by how slow things are. Improving your body takes time and persistence.
7. You can't do it.
Yep, that's right. I can't. It's taken grace and help and support. And help is there - even if just online for starters, like this list of email support groups.