| Robert Purkis - What do we do now? |
| Picture of the Purkis family | The Nightmare unfolds | Diagnosis | What do we do now? |
Diet |
Biolab Medical Unit
I started looking into vitamins & minerals and magnesium seems to help the nervous system but I didn't know how to go about getting supplements or what doses to use. One evening there was a news report about Henry Spink , a boy who had been helped by having magnesium injections given by a firm called Biolab, so I contacted my doctor and asked to be to be referred. He unfortunately was too busy to contact them so eventually I managed to speak to Dr John McLaren Howard, a wonderful man who explained the tests which needed to be done on Robert's blood. Tests done by Biolab, for a very reasonable price! We went to London for an appointment with Biolab in January 1997. This was the first time anyone had actually listened to our story of diet, yoghurts, holidays etc. and Dr Howard told us he thought Rob was intolerant to milk products. He did some tests and within a week we had the results showing low zinc, magnesium & Delta-6-Desaturase and told us what supplements to use. The doctors at the hospital would not prescribe magnesium supplements to Robert and discounted everything Biolab found. We bought the supplements ourselves and Rob did improve; in fact we think it saved his life! Unfortunately although we took him off all milk products he quickly became intolerant to the Soya substitute although we didn't know this at the time. We buy supplements from BioCare Ltd (Tel 0120 4333727) or from Metabolics Ltd |
Insomnia Rules Rob gradually improved in some ways but also stopped sleeping at anytime. He couldn't close his eyes and was awake all evening and most of the night. He wanted to sleep, it's just that he got jerked awake and he didn't want to be on his own. Every night for 5 months I only cat napped through the night which left me bad tempered and spaced out during the day. I was now escaping to work part time which was my only rest from Rob. My really good friend Pat looked after Rob during the time I was at work, I don't know how I would have managed without her. She was able to give the children a bit of fun and had a smile for everyone! During this period we had taken Rob off wheat and found this reduced some of his pain. Eventually I stopped the Soya and the results were dramatic! Within 2 days he started sleeping and stopped biting himself and he even smiled a bit! To cut a long story short ha ha! Rob is now on an exotic food diet without any additives, colourings or preservatives. It has transformed a very unhappy little boy into a happy chap, able to cope with school. Challenges for the future Rob needs to gain weight and we are currently widening his diet with nuts, oils and other things that don't upset him. It's not easy as he seems to tolerate things for a week or two then he develops an immune response to the peptides which get into his blood stream so it's very difficult to work out where the problem is. Also he can be affected by paint so decorating is a bit difficult. Rob still can't sit up unaided or crawl so we are constantly looking for ways in which to improve his motor control. If anyone has any ideas do please e-mail me @ Val Purkis E-Mail |
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