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Shock findings: Snaggy's Syndrome can be "upherited" from children!
In the following case study, Dave Schneider explains why his sons are diagnosed with clinical Snaggy's and how he lives with the shadow of it.
Ben and Sam have been on Oxygen at home as well as being enterally fed, first via NG tubes, and subsequently via G-tube, so they have always had Snaggy's Syndrome*.
However it wasn't until Sam's oxygen dependency abated just after his 3rd birthday, (Ben came off a year before) that I realised that I too had Snaggy's Syndrome.
I quite often get snagged; it's very frustrating but not particularly dangerous: the sleeve of my short sleeve shirt snags on a door handle; the bow of my shoe laces hook on a nail jutting out from the skirting board; the tie-string of my shorts gets caught on the handle of the cutlery draw. I suffer with the behavioural variant of the syndrome. The effect of Snaggy's on the boys is greater because of their extra appendage: the G-tube. They have clinical Snaggy's syndrome.
This has been evident in the 3 times that they have caught and "amputated" their extra limbs (in the last 3 month's); Sam's G-tube coming out in (a shocked) Grandad's hand whilst tickling; again Sam's coming out because he stepped on it when playing a jumping game with Ben; Ben standing on his G-tube as he stood up to take a shot whilst playing pool (he was standing on a chair) on holiday in Spain. The above occurrences were painful and a shock to them. There have been other occasions where the tubes (‘G' and NG) have come out in bed, and the boys have slept through the changing of the bedclothes and re-siting of the tubes (almost?).
Although we do not know when the G-tubes will be extubated, we can only presume and hope it will be in the next few years. However, what, if anything will happen to their Snaggy's?
*Snaggy' syndrome is clinically defined as "to snag, catch or hook a non-permanent bodily appendage upon a minor protrusion". This syndrome can be a result of concurrent symptoms of a disease or medical condition, or behavioural due to a characteristic combination of opinions and behaviour. (Is it only known as Schneider's Syndrome as well?)
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