The first thing to tackle was the introduction of the MEWS diet into our everyday life. M was a child who loved his food and was always keen to try new things. Having to take out some familiar favourites as well as the trusty fallback of chips was not going to be easy, especially as M would no longer be able to eat his all-time favourite meal: egg mayonnaise sandwiches!
Consider having to give up eating chocolate, fish and chips, roast dinners, cooked breakfasts and milkshakes to name but a few. That would be hard enough for your average adult to do and yet we were asking it of a 5 year old boy. No longer would M hold the family status of being able to eat “everything”; he was now reduced to having the most difficult and restrictive diet of us all. It is truly a credit to him at how brilliantly he took to this proposal. I think that this is when we first realised just how difficult the previous 5 years had been on him and how unwell he must have been feeling. It was pretty much without complaint that M stoically accepted the dietary challenge and 18 months on, we are still impressed with his positive attitude about it.
No longer could I resort to my freezer fail-safes on nights when time was running short or I didn’t want to cook. More or less every meal had to be cooked from scratch as it was the only way I could ensure that none of the forbidden five made it’s way into his meals and I became an overnight expert in reading and interpreting food labels.
From an outsider’s viewpoint, it’s extremely difficult to even begin to comprehend just how tough our new dietary challenge was. Perhaps the easiest way to de-mystify the impact and adjustments we had to make, is to show a “before” and “after” set of scenarios:
|Milk||Coconut or rice milk|
|Butter||Dairy and soya free spread|
|Fruit snacks eg. Yoghurt covered fruit flakes||Fruit snacks eg. Fruit yoyos or stars|
|Fresh fruit||Fresh fruit|
|Sandwiches||Rice cakes or corn thins|
|Mashed potato||Mashed sweet potato|
|Tuna Mayonnaise||Tuna with coconut cream|
|Pasta||Wheat and egg-free pasta|
The biggest problem I had with a lot of the “free from” alternatives offered in supermarkets is that potato flour is commonly used as a wheat-free substitute for flour. The initial ban on potatoes made this first dietary challenge a real test of my inventiveness and made Google one of my best friends!
I also had to tackle the issue of M’s weight. He had only been gaining a small amount whilst on his previous “normal” diet and now we were introducing a diet so healthy that he would naturally lose weight on it if I did nothing to counterbalance the lack of fats. I had to learn to put “added fat” into my cooking wherever possible and M went from having 1 or 2 packets of crisps a week to having 1 a day. His lunch box at school was now filled to over-flowing with fresh fruit and veg – thank goodness it was the summer and he could have strawberries galore as a treat – and I’m sure could have won prizes for just how healthy it was. He also was allowed to take an additional snack into school for mid-morning as there was nothing substantial to see him through the long morning session between breakfast and lunch.
Whilst we had dabbled previously with removing wheat and dairy from M’s diet, this was the first full-on approach to tacking his health problems. Dr Hill was confident that food allergies were a part of M’s illness, though we needed to establish which foods he was reacting to and whether it was as simple as “just” a food allergy. Unlike the earlier attempts, we were also warned that it could take at least 8 weeks before we saw any signs of improvement. This small, yet critical piece of information had never been given to us before, but proved vital as it did indeed take nearly 9 weeks until we started to see some changes in M’s toileting habits.
I am still amazed that we managed to go through so many medical institutes without someone thinking to tell us that the process could take so long. Looking back now, it seems obvious that the food needs to be completely expelled from the body and no trace left behind before the body can start to repair and yet, it had been assumed that we would know that – or perhaps it’s just that the gastro doctors we had seen before had not known this themselves.
By the time we reached September 2011, although we still did not have all the answers, M’s health had improved and we were well on our way to our final destination.