KidneyKid

My little boy has FSGS, a rare and devastating kidney disease, and it has had a massive impact on our lives:

Trying to be the best parent I can be

Life is not going well at the moment. Instead of blogging, I have been attempting to take care of the problems in my family. Sometimes I go on the internet to google things like ‘how to discipline a child who doesn’t care about being disciplined’, ‘counselling for a child’ and other such things. I want [...]

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The best news since this whole sorry time started

Thumbnail image for The best news since this whole sorry time started

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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How to cope when your child is diagnosed with a serious, chronic disease

It’s six months since William was diagnosed with FSGS. I think it is fair to say that I cried every day for about five months and it is really only in the last month that I have moved on to the next stage of coping. I don’t know what the stages are exactly, only that [...]

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Eight words

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 [...]

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FSGS genetic test results

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 [...]

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Relapse

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 [...]

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