FSGS

Looks can be deceiving

kidney bean sculpture

From the outside, you might be hard-pushed to realise my son is ill. On the days when he is well he can pass for any healthy child. What you won’t see is him come home and collapse with exhaustion on the sofa after school. What you won’t see is him too sick to want to [...]

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Hospital, in two acts

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It’s been a bit of a week here so I am revisiting this post which is quite timely. ******** There is a dichotomy to hospital visits when William is sick. There is the rising fever, the increasing lethargy or the developing complications, the few hours where I have an increasing sense of worry, developing into [...]

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Today I will mostly be saying what is on my mind

potassium-k

We have been in and out of hospital this week as William has had complications with high potassium levels in his blood (potential side effects: death!). He missed his big class trip to the seaside on one of the sunniest days of the year, a trip that many of their lessons for the rest of [...]

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Why I ask you to vaccinate your child

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The side of vaccination you may not have thought about.

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Remission

We got lab results back today and my boy is officially in (medicated) remission! (If it seems like you have read this before, the last one didn’t last.) His blood results are looking fab. His albumin is still a bit low (although higher than it has ever been) and his cholesterol is still too high [...]

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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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