I'm curious about what sort of testing was done; generally food intolerances don't show up. There is a difference between allergy and intolerance, and usually the behavioural problems are not allergy, they're sensitivity. It's a different biochemical pathway. But you will always find some doctor somewhere who will be happy to take your money.
We were lucky, we had access to a mob who just happened to be doing a research project into autism and food sensitivity. So we had the benefit of a multidisciplinary clinic specialising in just this area, but within a major teaching hospital. Also because it was research, there was no cost to us. So we had the experts. We had pediatric immunologists and dieticians, mostly.
Here is a link to them to give you access to their website and their FREE information.
http://www.sswahs.nsw.gov.au/rpa/allergy/
Look up their notes on food intolerance and read up on the difference between intolerance and allergy.
The way this mob worked it - we had to write down absolutely everything that passed difficult child 3's lips in the week between appointments. We also had to list any behavioural problems. It was all logged onto a time sheet so food/drink ingested was time-stamped and so was behaviour. That way any possible connections could be seen. difficult child 3 was also given a thorough work-up and detailed history taken.
When they started us on the Elimination Diet, they took into account that we had already had difficult child 3 off all dairy and all gluten for a month with no apparent change in symptoms. So thankfully, they left those out of the picture; they said if dairy or gluten were a problem, eliminating them would have shown improvement, and it hadn't.
The Elimination Diet is drastic and not sustainable long-term. It is not meant to be, it is only meant to take everything back to basics so you can remove all possible causes and then once the child's behaviour has improved (hopefully) you then begin introducing the least likely problem foods first. For everything you re-introduce, you take your time and only reintroduce one food group at a time. After three to five days of no change, you can then introduce another group. If there is a sudden deterioration in behaviour, that food you just reintroduced becomes suspect and has to be eliminated again. So it's back on the diet (but allowing what has been put back in the diet with no problems) until the child is stable again. This can take another fortnight, but usually a week is enough after a long period of being 'clean'.
The idea is to eventually get a really good idea of which groups are the problem. You can then work out how sensitive the child is - can they tolerate a little of that group? Or none at all?
The full-on Elimination Diet was basically no artificial additives at all (no artificial colours, no preservatives, no artificial flavours) but that was just getting started. It also eliminated naturally occurring chemical groups such as salicylates, amines and glutamates. We were given a book which the dieticians had laboriously put together, telling us which foods were safe to eat and which foods fell into which category. We took that book with us whenever we did our shopping.
About all difficult child 3 could eat was chicken (without the skin), lamb, potato (without the skin), pears (without the skin), white rice, white sugar and variations on this. Because we'd already checked out gluten and dairy and found that removing them brought no change, difficult child 3 was allowed to have one kind of bread (it was my home-baked one, using one particular brand of flour) and also allowed to drink milk. There was one brand of ice cream he was allowed (vanilla was permitted; no other natural flavouring permitted, they contain salicylates) and one brand of lemonade (because it was only sugar and water, there was no real lemon in it). For a special treat he was allowed to have home-made 'honeycomb' - the stuff that is made by pouring a hot sugar syrup over sodium bicarbonate so it froths up and sets like a golden crumble. Finding the home-made stuff was tricky. Needless to say, difficult child 3, already skinny, lost even more weight on this diet.
You would think that the best diet for your child would be one with a wide range of fresh organic, home-grown food. But when you're concerned that your child may have food sensitivities, it's actually a bad diet. But that's only because the Elimination Diet's only purpose is to test the child.
I was told by this team that there is no true way you can really know which food groups or which foods your child has a problem with, if it's a sensitivity/behaviour issue. Blood tests won't tell you. Skin pricks will only tell you if it's likely to cause anaphylaxis.
Now, after difficult child 3 had been on the Elimination Diet for 4-6 weeks, the expectation was that his behaviour would improve. If he 'fell off the wagon' (which can happen even accidentally with a diet like this) then we had to give it a full week with no breaks in the diet, before trying a challenge.
The problem we had was that difficult child 3's behavioural/health problems did not improve, even on the Elimination Diet. After two months they told us to try the challenges. We began to reintroduce each group - to test salicylates, we gave him a spoonful of honey. For amines - we fed him dark chocolate and bananas. A solid challenge! And so it went - but again, no change.
So where difficult child 3 was concerned, the clinic declared that we had given it w thorough try, but in difficult child 3's case, diet was not a factor.
They told us that in their studies, they had found that with autistic/Asperger's kids, modifying the diet brought improvement in about 30% of cases. And of course it was rarely a great deal needing to be eliminated, usually it turned out to be one group only, and if it was handled well the child could generally tolerate a low level from that group, it didn't always have to be totally removed.
We did a similar thing back when difficult child 1 was 6 years old. We did find a couple of things with him - he reacted to oranges, and caffeine. Nothing else.
You ask why D's doctor didn't want to sign the paperwork for the special diet - it is for the reasons I stated earlier, the science just does not support the 'testing' that 'verifies' 'allergy'.
However, if your own careful (and recorded) observation of D shows that his behaviour definitely improves when you take him off certain foods and deteriorates when he goes back on those foods, and you have tested this carefully a number of times, then I suspect the doctor will happily sign the papers.
I remember back when difficult child 1 was being tested for sensitivities, one of my sisters lent me a book which she had used in testing her own son. The book described the pulse test, where you put the child on an elimination diet of sorts and record the child's pulse before and after eating every day. When the pulse has been the same before and after eating, for some days, you can begin to challenge. When you reintroduce a food and the pulse doesn't change, according to the pulse test, the child doesn't have a problem with tat food. But if the pulse goes up a significant amount (can't remember how much, it might have been 10%) then that food is declared to be a problem. However, I believe the pulse test has also been discredited as being unreliable. It didn't stop books being written about it, though.
The area of food sensitivity and allergy is full of rubbish ideas as well as good information. Sometimes it is almost impossible for the lay person to find the right path in the mess. But if you go down the wrong path it can lead you astray and cost you a great deal, without you getting the help you really need.
The other thing to remember - we were told that 30% of kids on the spectrum improved their behaviour when problem foods were eliminated. But this was not a cure, we were advised. The child still had autism or Asperger's. It just meant that another obstacle had been removed or reduced.
In difficult child 1's case, we put him on medications and it helped a great deal. We also found that while on medications, he could tolerate some orange juice and his orange-juice symptoms wouldn't show up. But the caffeine was always a problem, even on the medications.
In difficult child 3's case, he's fine with oranges. We also keep him off caffeine but actually I don't think he has a problem with it, not like difficult child 1. But he also has to take stimulant medications, actually a much higher dose than his big brother (who's now on quarter the dose his baby brother is). Plus we constantly work on behaviour modification, social stories, the Explosive Child methods - we do absolutely everything we can. There is no one perfect answer, you just do whatever you can get to work, even a little bit.
so with your son and his diet - keep good notes. Record everything. Those notes become your 'bible' to let you know what is working and what isn't. Never forget that your son is a complex individual, affected by many things in his environment as well as in his diet. He may have a more difficult day because:
1) He has eaten something he shouldn't have, maybe an additive not on the label, or a piece of home-made cake brought in to school by a classmate;
2) Someone at school said something to upset him even though they may not have realised that what they said was upsetting;
3) He could be coming down with a cold but not yet showing symptoms;
4)He could be hungry or more tired, perhaps had a nightmare the night before;
5) Any other reason. Or some or all of those reasons.
You've removed a lot of foods from his diet and he is feeling better. But you don't know which of the things you have removed could be the culprit. The way we were taught to test this - keep a detailed diary of what he eats and when, plus his behaviours and when. Then while he is stable you deliberately introduce a food and record any change. Keep that food up and note any changes. If there are no changes after a number of days then you can conclude that food is not a problem. Good - you just expanded his repertoire. And from our experience, likely foods to be safe include lamb and skinless chicken, both cooked without any herbs or spices. Make sure it is preservative-free.
You can try, it's all you can do. But you can never know all of the answers all of the time. Plus your child will be different. It's not necessarily the more obvious or more likely allergens that could be the problem (if any). I have lots of allergies, mostly to antibiotics. I also used to have problems to egg white and to cows milk. I was raised on goats milk because of my cows milk problems. But an even more common allergy is to shellfish and to house dust, and I'm fine with both. husband has no antibiotic allergies, no shellfish allergies but is a mess with house dust. He also can't eat eggplant, or corn chips, they cause vomiting. He can eat white corn chips, but not the yellow ones. SIL2 is allergic to pine nuts and to mango. He's fine with eggs, no troubles with cows milk, has no issues with gluten. Just pine nuts and mango. They make his mouth and throat swell - classic allergy, potential anaphylaxis.
Allergies can be bizarre. Food sensitivities can be even more bizarre but because they are not generally life-threatening, you get a lot more 'quacks' exploiting you. A lot of them believe in what they are doing, but that doesn't make them correct, unfortunately.
Your own notes and your own observations are going to be worth far more to you and also cost you far less financially.
Read through the website I gave you and see if you can use that information to help you find your own way through the expensive minefield, without having to cost you more than you're already having to pay for a difficult shopping list!
Good luck with it - this trial phase is the hardest of all. Once you have a good idea of what he can eat and what he can't, it's a lot easier to maintain. also as he gets older, sensitivity issues can ease (thank goodness). difficult child 2 now can have oranges and caffeine without problems.
Marg
(he's a little human Garfield).. I've tried new recipes for chocolate cake without eggs, butter and milk, and I search supermarkets for treats he can eat, and we're doing quite fine..
