leaflets and the Frequently Asked Questions (and answers) information was particularly useful because they enabled us to start understanding RAS better, including some of the background to the condition and the experiences of others. On becoming a member of STARS, it was also very useful to be able to have information about RAS sent automatically to Wesley’s doctor – a great system, and to have information to give to the organisers of the parent-toddler groups and toy library that we attend. We also contacted the help line and spoke to Trudie, which was very reassuring, but also practically very useful. Trudie gave us the name of a consultant paediatrician in London who is a specialist in RAS and who we have now seen. We have also recently begun to use the e-bulletins and the links to other sites and articles as well as to post a message asking for contact with other parents and families .
the time of Wes’s fits. Finding someone to provide child-care has not been easy. Not all child carers are equipped or willing to deal with RAS and its consequences, even when reasonably well informed. It has taken 6 months to find suitable childcare to fit in with our work arrangements and commitments, and it is starting to provide some relief. We are also just starting to support ourselves a bit more by getting better at asking other people (friends and family) to look after Wesley occasionally. Not being able to do this over the past year has felt incredibly pressured and we have experienced a very high sense of ‘over demand’ on our personal, practical and emotional resources. But we are just starting to emerge from what has sometimes felt like an unbearable and unsustainable experience, which at times has us on the edge of desperation. Receiving the various STARS information
Tim Kent & Eleanore Hargreaves London
Surgery Tactics
THE AUTONOMIC NERVOUS SYSTEM
Not happy with your doctor’s opinion? An idea for what to do.
Your Autonomic Nervous System (ANS) controls everything you don’t think about. Examples of this are your heart rate, your blood pressure, your body temperature and your breathing, among other things.
Doctors are only human - they cannot know everything and can have “off” days like all of us and this means they can sometimes get it wrong. One solution, if you feel that this has happened to you, is to consult another doctor in the practice, though a better idea is to see the same doctor, remembering that a gentle, friendly approach is much more likely to end up with a satisfactory outcome. Try saying, “I know you’re very busy, however could you explain more about why you think I have...” Remember doctors have feelings too and do you really want them to dread seeing your name on their list next time you’re in the surgery? 9
A normal person can adjust to changes around them very quickly. A person whose ANS isn’t working correctly does not respond normally. It may take them longer to adjust or they may do just the opposite of what is expected. This can also start a cycle of trying to re-adjust to a given situation - for example, heart rate rises then drops, then rises again. A simple explanation is that your heart and your brain are divorced and are refusing to speak to each other!!!
