Diet
Rob was put onto Polycal by the hospital dieticians but his intake of milk decreased as the supplement was increased. I didn't realise that overloading the stomach with a hard sugar can lead to bacterial overgrowth in the stomach; indeed Rob began to have more problems eating and swallowing. As the problems increased it fuelled the theory that he was deteriorating and fitted the 'best guess' diagnosis of Leigh's Syndrome. I was advised to tube feed Rob and this was the only time he was sick. It was terrible as Rob hated being fed like that and subsequent attempts to insert a nasal gastric tube failed because he coughed the tube back up. Eventually I took him off Polycal and he improved slightly. I feel that the dieticians were negligent in not trying Rob on hypo-allergenic milks especially as I kept telling them about his craving for yoghurts. A craving for a food can often indicate an intolerance. They, like other health professionals, didn't treat Rob with an open mind; they based all his problems on the guessed diagnosis from the neurologist.
For four years I kept a daily record of the food Rob ate and how he was; whether he slept when I put him to bed, whether he woke at night and couldn't sleep or whether he was stiff and crying all day. Sometimes he would scratch at his eyes or bite his mouth or lips until they bled. There emerged a pattern of responses to certain foods and improvements were found after removing things from his diet. Corn is one such food which gives Rob asthma and he coughs, wheezes and cannot swallow properly after he has even a small amount in whatever form it is given. Everytime I inadvertently give him something with corn in it he gets these reactions. For 3 years Rob sweated on his head, hands and feet, his body was twisted around so his left leg was up and he formed a curve. He was only happy for about 30 minutes a day until we changed his diet. I started a rotation diet with the help of several doctors whom we saw privately. After lots of mistakes we fed him exotic meats like Vension & Ostrich (we get this from Barrow Boar in Yeovil Somerset Tel. 01963 440315) and Sweet Potatoes and peaches. On a very restricted diet Rob became happy for most of the day. However, he also needed to evacuate his bowels 3 to 4 times a day just to enable him to feel comfortable. Gradually he has stopped going to the toilet so much but is still not putting weight on. We are constantly looking for foods to widen his diet and fatten him up.
Rob was being poisoned by the toxins that built up because he was constipated. Also some of the foods gave him wind and his stomach would blow up like a balloon and he would have diarrhoea for a day or two but the constipation was still there. Apparently what happens is that a blockage occurs and some watery poo gets around the sides of the main blockage. Also the lining of Rob's stomach became permable which allowed peptides to escape into the blood stream where the immune system's T cells were activated to attack these invading peptides. My first evidence that this had occurred to someone else other than Rob was when I read an article in the New Scientist about the research, a biochemist called Paul Shattock had done, with autistic children and how milk and wheat produced a toxic effect on their brains. Although I had pieced together this information through my constant recording of Rob's reactions, it was great to finally see confirmation published in a scientific journal.