April 2009

My love/hate for Ciclosporin. But at this point mostly love.

I hardly dare say it for fear of jinxing it…. but… the Ciclosporin – the powerful immunosuppressive drug William is on – seems to be working. For the last few days his protein levels have come down to from 3+ to 2+ and now to 1+ on the dipsticks. Next stop negative we hope. Although [...]

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Weight gain

As part of this condition, my little son, my little five year old skinny boy, put on a quarter of his weight in fluid over the space of a few days in January. A quarter. This is how his feet normally look: This was him the day before he was admitted to hospital when I [...]

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February 20th

Everyone has days in their life that they will remember with startling, painful clarity. For us, that day was February 20th. Until that date we were having a pretty wonderful few months. The boys were thriving -  all of them (if you don’t count William’s episode of Nephrotic Syndrome after the New Year). Harry was [...]

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When the future won’t be quite what you hoped it would be

I want to write about something else. I want to write about, think about, something other than my son having FSGS. But I can’t. It’s like a sort of grieving process. The first two weeks after he was diagnosed, Matthew and I were a mess. There was not simply the shock of being given such [...]

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Ten ways to keep your daily salt intake down

As part of William’s illness he is on a low-salt diet. At first I took this to mean a no-added salt diet, but when I added up all the salt he was consuming in a day we realised he – and all the children – were eating well over their daily recommended allowance. Crap mum [...]

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