The last month or so has seen another ripple in Aran's health.

We now have a diagnosis of Henoch-Schönlein purpura to add to the Glomerulonephritis. A relapse just over 3 weeks ago saw us back in A&E with all the symptoms of another strep infection (namely fever, and high levels of protein and blood in the urine) except there seemed to be no real sign of strep. It certainly seemed milder than the previous relapse in February. Just as it all seemed to be back to normal a few days later the rash appeared, the protein levels went up (prior to this relapse the protein had reduced right down to trace levels), and back we were again with the docs.

The rash cleared up within a week but unfortunately the protein levels are as high as they were 2 or 3 months ago, and we're still on kidney watch - testing daily and generally keeping an eye out for signs of kidney failure. (as much as we know we need to look out for it, and having experienced it once already with Aran, it still breaks the heart to hear the warning yet again from the doctors)

Long term, we don't really know what this means for Aran and has kidneys. Our next appointment with the consultant has been put back now until September, which really doesn't help answer any of our questions, and we've still not yet seen a renal specialist. We know each of these diseases are on the rare side, and that normally 80%-90% of diagnosed kids make a full recovery without any lasting damage to the kidneys. Yet it seems to be getting more complicated; each time we see another, different doctor they tell us something new about these diseases and their possible relationship. And each time it feels as if we're coming away knowing less. 

In himself, he's mostly fine. The HSP rash cleared up quickly and he's been able to go back to school. He knows we're monitoring and testing every day. We've had some great help in terms of diet and kidney health, and he's accepting all of it (even right down to not being allowed his favourite wurstel sausages for the foreseeable future). He's such a star for just getting on with it. And we're trying to do the same; some days are easier than others.

 

 

We had a photoshoot at the weekend, and I am so very, very proud of some of the photos I took. There's a few releases on the horizon - several patterns that have been published in magazines and the rights have reverted back; a few older patterns have received a full makeover (including Staggered, shown below) and a couple of new ones, too.

 

 

 

Lots of folk comment on how close we are and, well, you can't live as we and not be! Aran's fully aware of his health... this is something he *may* have to live with for the rest of his life and it's only fair that he's kept in the loop. It's so very not fair that this is happening to him, but the more normal it is, the easier it will be to deal with in the long term. And if everything works out and he makes a full recovery, as we hope he will, he'll know how lucky he is.

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AuthorWoolly Wormhead