My son has been leaking protein into his urine, scarring his kidneys, for the last nine months and probably longer than that too. He has managed a couple of days at zero or trace now and again in the last two or three months but it never lasted and he had a miserable summer holiday [...]

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He’s in a terrible mood: insomnia, bone pain in his feet, kidney pain and prednisolone rages are all combining this morning to make it, well, tricky is the least awful word I can think of to describe it. But if it’s tricky for me today, it’s an ongoing battle for him.
As we drop off Ben [...]

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The genetic results are disappointing. William has a genetic ‘abnormality’ on the gene that is responsible for the genetic form of FSGS and while they can’t say that caused his fsgs they think it made him ‘more susceptible’ to developing idiopathic (ie non-genetic) FSGS.
More worryingly, because he has a genetic abnormality it means all our [...]

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William is relapsing. He had one day of remission. One day. What’s the point of one day of remission? Now instead of feeling hopeful that we are working towards remission we are just left with the thought that the ciclosporin is not going to work for him.
Ten days ago his nephrologist called me. ‘His kidney [...]

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Where have I been the last couple of weeks?
Living life.
My son is doing so much better – better in himself, more energy, about to go back to school. It’s been so long since he has felt like doing anything resembling normal everyday activities. We are making the most of it.
And today we had our first [...]

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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 negative or trace [...]

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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 knew he [...]

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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 an [...]

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