From the category archives:

FSGS and Nephrotic Syndrome

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

August 20, 2009

It’s six months since William was diagnosed with FSGS. (For anyone who wants to catch up on his story there are posts here about FSGS, the disease he has, and Nephrotic Syndrome, the syndrome that occurs when he leaks alot of protein in his urine and becomes really poorly.) I think it is fair to [...]

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Eight words

June 25, 2009

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

June 14, 2009

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

May 18, 2009

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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Remission

May 14, 2009

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 [...]

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

April 27, 2009

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

April 23, 2009

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

April 21, 2009

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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