The summer of 2011 was an interesting one. As I alluded to in my last blog, M took to his new diet like a proverbial duck to water and 9 weeks in, we finally began to see some tangible and very noticeable improvements. The number of toileting accidents reduced significantly and whilst we were still not “accident-free”, I no longer felt as if I was packing for a trek to the Himalayas every time I stepped out the door.
M’s weight did dip a little, but not significantly enough to give us concern and we all enjoyed a fantastic summer holiday. We even managed a holiday abroad – a week’s trip to Portugal with my Mum. We decided to relax the diet a little during that week after discussions with the GOSH dietetics team and M was able to once again enjoy chips with his meals! We even braved half of a small 1-egg omelette without too much of an impact on his health. Both M and G enjoyed a week of sun, swimming and Mediterranean food and I enjoyed being able to get away from home whilst still managing a challenging diet. We went prepared as Mum and I both carried food supplies in our cases and I suddenly became proficient in scanning food labels in another language!
The start of September saw not only M moving up into Year 1, but also our return visit to GOSH. I felt confident that we had established that M did not have an allergy problem with potatoes and thankfully our consultant agreed. We were encouraged to re-introduce potatoes back into his diet as well as trialling the re-introduction of some of the other forbidden foods. As it now turns out, we were definitely attempting to run before we could walk and the trials ended without success. This was a disappointment for M as he was desperate to return to egg mayonnaise sandwiches, but he faced it like a trooper and just got on with it.
It was at this point that we learned that there are in fact many reactions to food allergies. The most dangerous and well-known is an anaphylactic shock such as frequently suffered by those with severe nut allergies. M had never suffered from anaphylaxsis, which has led to people believing that he does not have food allergies, but rather food intolerances. However, as we now know, allergic reactions wear many different hats and we were to encounter some of these as we attempted to re-introduce some foods into M’s diet.
M’s most obvious reaction was the chronic diarrhoea that he had been suffering since he was a baby. This can be an almost instantaneous reaction, but frequently takes several hours to develop. The length of the attack can vary from person to person, but the experience is unpleasant for all.
However, there can also be emotional, social or psychological reactions that can occur up to 72 hours after a food has been eaten. Back in September 2011, M showed this kind of reaction when eating and drinking soya. After a couple of days of including soya back into his diet, M become uncontrollable and somewhat hyperactive. I can vividly remember sitting at a meal with my Mum, my Godmother and her husband at the end of 5 days with M being back on soya. He was unable to sit still, was constantly up and down from the table, was rude, unmanageable and nothing could convince him to behave. A week later in almost identical circumstances, but having been back off soya for 5 days, he sat peacefully, showing the most beautiful table manners and behaving as a completely different child. I have never seen such a dramatic display of how a simple food can have such an immense impact. Even now, we can tell if a trace of soya has crept into his diet unawares.
During our September appointment, we discussed our next steps with the registrar. Although M was a lot better than he had been 3 months earlier, we were still struggling with multiple toileting accidents a week and it was suggested that it might now be worth considering a set of scopes to see what was going on inside.
I would love to say that the next step was to have these performed, but in fact it took a lot of to-ing and fro-ing, several telephone conversations and another visit to London before we got confirmation that the scopes would take place. As we waited for the date of the scopes to be sent, M continued on the strict MEWS diet and we approached our first ever allergy-friendly Christmas!