My son is 3 and last week is a year since his first acute metabolic acidocis episode that had him near comatose and in hospital for a week, and we are finally drawing to a diagnosis and this is where everything is pointing. He has had 6 episodes in the last year the most recent was the weekend which luckily we avoided hospital with early intervention and management when he was still in starvation and before he started vomiting mode using poly-joule.
How do you cope with it day to day and do your kids understand what it wrong and how to cope? Do you treat living with it as you would coeliacs and explain it to people that way? What tests did they go through to achieve complete diagnosis?
I can find lots of info on PKD and other metabolic disorders and not a lot on KUD. Are there any support groups n Australia?
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