Well more of a horseshoe shape actually. And kidneys, not a ball.
G had never had a scan of her kidneys until last week. It wasn’t something that had crossed our minds, but at the annual Turner Syndrome Conference last September it was suggested that all girls should have a routine kidney scan.
I relayed this information back to her paediatrician in October, and so G finally had her ultrasound appointment.
I didn’t attend the ultrasound as it was one of my teaching days, and to be honest I wasn’t particularly worried about the findings. So when a message popped up in my smartwatch saying that the sonographer had found G’s kidneys fused together in a horseshoe shape, I was slightly taken aback.
Horseshoe kidneys, which are fused at the bottom, are more common in Turner Syndrome (as are the 2 heart conditions that G has) but I guess selfishly I had already assumed G had her fill of complications!
Thankfully, from what we can gather so far the implications are not serious: we need to keep an eye if she struggles with UTIs; her kidneys are slightly lower in her abdomen so in the extreme she receives an abdominal blow then they’ll need to be checked, kidney stone complications and a few other very unlikely issues. Accessing drinks and the toilet whenever required will be important too.
Apparently horseshoe shape kidneys are more common than I had thought-around 1 in 500, and women are more likely to be affected. It is also more common in a chromosomal abnormality (ie Turner Syndrome, Down syndrome).
So for now, that’s another piece of medical info that I’ll file away in my brain. Thank goodness for the TS society and their unrivalled knowledge of Turners.
Other news:
G has struggled with sleep for as long as we can remember. After her confessing how much it stressed her out that she can’t simply drift off to sleep like most, and how tired she is in the morning (her body doesn’t allow her to lie in!), we contacted the paediatrician about melatonin.
Today we collected 3 months supply of liquid melatonin, so hopefully G might take minutes to fall asleep as opposed to hours (and hours!).
G’s cardiac appointment in Nov confirmed that her bicuspid aortic valve is still functioning well (she has a bicuspid instead of tricuspid!). Also her slightly widening aorta is only ‘mildly’ dilated. All good for another year!
Next week we’ll be visiting the community paediatrician to discuss whether G will be diagnosed with autism. Both myself and G are eagerly awaiting this appointment. It will allow for some extra support, especially knowing secondary school is on the horizon this year. I’m not all about labels, but working in education myself I know that sadly support is not afforded unless there is a diagnosis on paper.
This Christmas we were lucky enough to be gifted a trip to Warwick castle light trail by The Sandcastle Trust. It was AMAZING! For any of our TS family who have not accessed Sandcastle Santa before, it really is a gem of a charity.
Lastly G has some exciting things coming up including her school residential and 11th birthday. Stop growing up!
