B🙂 For me, and possibly because challenging symptoms started much later than childhood, it seems as though every couple of weeks I have a bout of deep fatigue and downturn in symptoms.
But, I have to stress, there are so many variations in symptoms anyway, that it’s unwise to be guided too strongly by other people’s experiences. And, in the case of children, a specialist Neurologist’s advice can be invaluable.
Speaking for myself, I still walk Although to be on the safe side I use a walking stick to help balance and avoid falling off kerbs, and I have a rollator for especially wobbly days.
Although there is no link in my immediate family, it’s possible that there’s a Recessive link somewhere. That means, either parent could have been a carrier, unknowingly passing down a mutant gene, while staying unaffected themselves.
As adults with ataxia, generally speaking we’re advised to stay as active as possible, exercising within our capabilities but staying safe I would imagine the advice would be pretty much the same for children, although usually they’re active enough anyway Advice from a Neurophysiotherapist can make a lot of difference, the average Physiotherapist often doesn’t understand the complex difficulties that can be associated with ataxia.
Be guided by the Neurologist, your son will likely have yearly reviews and his progress will be monitored. Ataxia is so variable and unpredictable that trying to forecast what’s actually ahead is virtually impossible at this stage.
Definitely familiarise yourself with general information on www.ataxia.org so that you can have essential questions ready for the appointment. Most people would agree that once you get face to face with a Neurologist, logic flies out of the window Stress kicks in, and with the best will in the world, memory fails you. Write questions down, if there’s something you don’t understand or even if it’s the medical terminology used, ask for it to be repeated. And remember, nothing is too trivial to ask xB