We went down the food sensitivity road for a while with both boys. difficult child 1's first pediatrician who diagnosed ADHD, wanted us to try diet first before he prescribed medications. From what I know now, the doctor was simply stalling for time while the government authority went through - it takes about a month. But for a month, we restricted certain foods and observed any changes. We did not do it the right way (as we found out years later) but still lucked out with some useful answers - caffeine made difficult child 1 far worse and also aggressive. Orange juice also caused problems, to a lesser degree. Otherwise - little difference.
Once he started on medications, we were told that the food sensitivity issues related to behaviour, would vanish. However, we found that if he drank more than half a glass of cola, the violence would break through and his medications would seem to not be working. One day, for example, his class at school had a birthday party for a classmate and there was a lot of cola there. difficult child 1 drank some and his behaviour was horrible for the next two days.
That was the state of our knowledge when difficult child 3 was born. At first we thought we at last had a normal child. We realised by about 2 years old, however, that this was a very different set of problems. Obviously gifted, but also not talking or responding in some ways. He was diagnosed as ADHD plus possible Asperger's (or somewhere on the spectrum) when he was 3. Started on stimulant medications, which was like magic in overcoming the language delay. Well, it started to turn the corner with it. At this stage we had a different pediatrician who had not suggested that we try diet first.
difficult child 3 was at school in Grade 5, but constantly ill with low-grade fevers and vomiting. He missed about half that school year, spread over the year, because of this difficult-to-diagnose illness. His teacher was insistent that there was a physical problem. With hindsight I venture to suggest that she herself was a large part of the problem. But that is another story. Basically, difficult child 3 was severely stressed, and this was his reaction to the stress. However, before we worked that out, we investigated food sensitivity. But this time we did it thoroughly, and carefully, with experts overseeing it. That's how I know we did not do it thoroughly with difficult child 1 fourteen years earlier.
What we did - first, we connected up with a hospital clinic that specialised in studying food sensitivity issues. We lucked out - there was a research program going on, looking at food sensitivity frequency in autism and Asperger's. Research programs can be useful because they are not allowed to charge you money for being involved.
The study was overseen by a pediatric immunologist and dieticians. I knew one of the dieticians from previous work, knew she was perhaps the best in the country on the subject of food sensitivity. We were given booklets (amateur printing, so they were constantly updated) which listed brands of food to avoid, brands to head for, and what natural chemical groups were in what foods. This was not the Feingold diet, which was generally about eliminating artificial additives (colouring, preservatives). No, tis diet went a lot further - it eliminated all likely suspects in the form of natural chemical groups which are responsible for a lot of behaviour problems. Also responsible for health problems in some people who are chemically sensitive. For example, I know I have a problem with some foods high in salicylate - I already know I can't take NSAIDS because it greatly upsets my GI tract. But certain foods cause the same symptoms.
So - the food groups, the natural chemical groups, are -
1) salicylates
2) amines
3) glutamates.
4) gluten
5) dairy
There were a few others, but these were the main ones. We had already eliminated dairy, and the problem symptoms continued, so thankfully difficult child 3's Elimination Diet was able to include milk, butter and ice cream (one brand only).
What we had to do - difficult child 3 had to go on a very restricted diet. husband called it "the food free diet". Officially it's called an Elimination Diet. He had to stay on this until all past natural chemicals were washed out of his system. Or six weeks, whichever was the longer. He lost weight. He was unhappy because he was so restricted in what he could eat. It is NOT a diet you can subsist on for long, and it is not a healthy diet because it is not balanced.
What he could eat - lamb. Chicken (no skin). boiled potatoes (no skin). Potato (no skin). Pears (one variety only, no skin. Or one brand of tinned pears, in syrup and not juice). sugar was allowed, in the form of one brand of lemonade which actually had not trace of lemon in it (it used citric acid). difficult child 3 was permitted to eat honeycomb, which was made from sugar syrup fluffed up with bicarb soda. We found a supplier for that - home-made. So that was his treat. There was one brand of ice cream he could have. Vanilla only, of course. The only flavouring or herbs permitted on this diet are chamomile and vanilla. Anything with flavour tends to also have the natural chemicals in it.
difficult child 3's hyperlexia came into its own when we went shopping - he was highly motivated to cooperate and checked all labels carefully. It took us ages to shop.
After being on the Elimination Diet for six weeks, the expectation was that problem symptoms would have eased. The trouble for us turned out to be (we discovered months later) that school was the trigger for his symptoms. Not just attending school, but even thinking about it. And I couldn't always know what he was thinking about!
We got to a point where the dietician said, "We can't keep him on this diet any longer, it's time to try challenging the food groups."
The idea was - give him something from the food groups, and see how his symptoms are. Yo don't break the whole diet, you only carefully allow something from one group. The largest group is the salicylates, so to challenge salicylates, I made chicken breast fillet for difficult child 3, but this time I seasoned it with oregano. That would have set off problems, if salicylates were a problem. But there was no change in him. As a result, immediately his diet expanded to include all salicylates, but still not the other groups.
To test amines, we could choose chocolate, or banana. To test gluten - pasta (doesn't contain yeast - that has to be tested separately also). Each time, we were able to add more.
As we were working through the challenges, we began to realise that difficult child 3's symptoms had not abated. The dietician called us in and went over the charts (we had to keep charts of everything he ate, and also his symptoms). She said, "There is something else wrong that is causing this, and we have just proved that in his case, it is not diet. Our preliminary findings are that in about 30% of autism and Asperger's cases, modifying diet can help with behaviour. But not in your son's case."
That is where we left the program. Gratefully.
Of course, the hospital we were going to, is based in Sydney, Australia. They do have information online, but you really shouldn't try this on your own. I'm a scientist by training and I found it challenging to manage, and that was with as very cooperative child. We had to remove all the problem food groups from the house while we did this, and I put all of us on a form of the same diet. It actually was easier. It also helped difficult child 3 see that we were really wanting to help him that much, that we would share his misery.
End result - I'm glad we tried it. Also very glad it did not help.
Marg
