Hello Froot
Lol @ 'real, live, person'...well, I am 'virtual mum' .
My son had his first 'seizure' at a few days old (and in the early days/months/years I lost count of how many as they were so frequent). A week in hospital followed by over a year of out-patient appointments for various 'tests' did not get to the bottom of the matter. 'Breatholding' was not diagnosed but strongly hinted at. From the start, I felt (mothers intuition or whatever) that this 'hint' was very much wrong.
Gave up with the hospital paediatrician as felt he thought it would 'go away' and that was that (husband and me both felt he thought we were over reacting despite this not being our only child). Working at that time within Health Service management, I had the ability to do some further searching myself. I came across the condition I now know to be RAS and then found STARS and thought, like you, that it described our son exactly. However, as is the nature of RAS, he was having fewer seizures at this stage and, hopeful that it was going to pass, I didn't pursue the contact with STARS. I did believe though, that in all probablility, RAS was what our son was suffering from.
Seizures continued on and off at varying intervals/severity. Most often either hubby, myself/family or neighbour were nearby. Late 2002, he had quite a bad seizure whilst being looked after by friends (we were doing Christmas shopping). They got such a fright that it made me realise that whilst I, my hubby and family now seemed to take these in our stride (albeit still being afraid in our own way as sometimes the episodes would be very frightening to watch, iykwim), if the seizures occured in our abscence, others had to deal with it without the benefit of past experience.
Anyway, contacted STARS again and this time followed through by approaching our GP armed with various pieces of literature and asking for a new referral. After a slight mix up with appointments (and almost being sent back to the original hospital/consultant we had dealt with before) we finally obtained a confirmed diagnosis (based on full history of seizures) in January 2003.
Fast forward to now. He continues to have seizures although more often only 'near misses' and at a very much reduced frequency/severity (indeed, he has had none since May/June).
I always make sure anyone who is looking after/resposible for him (eg playgroup or now, school, squirrels, etc) know about RAS. As he started school in September, I gave a talk to the Headmistress/all Teachers/ Assistants/ Caretaker and supplied them with all appropriate literature from STARS. In the past, where possible, I have attended Playgroup/Squirrel outings as a 'helper'.
With regard to 'anaesthetic consent', if you have any doubts, err on the side of caution. STARS have a very good information sheet available regarding RAS and anaesthetics and this could be copied and attached to any consent form.
Good luck with the referral but do be prepared with as much info as you can gather (again STARS can help you in this regard) and remember that RAS is only now being given more notice by the medical profession as they themselves have only in recent years been made more aware of it.
Ooops, sorry to have rambled on. Do please feel free to contact me via mumsnet if you want to talk further.
For anyone interested, info about RAS and other similar conditions can be found on the STARS website
butterfly