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EDS/hypermobility in children, any experience?

(5 Posts)
PurpleMcPants Wed 25-Jan-17 13:23:06

My DD (11) has been diagnosed with hypermobility by the GP, we have referrals to physio and OT. I suspect she may actually have EDS of some sort, she seems to have exceptionally stretchy skin (she can pull out the skin on her stomach around 2 inches for example).
Does it later if the diagnosis is hypermobility rather than EDS? Does anything extra need to be looked at or done if she has EDS? At the moment her only problematic symptoms are joint pains.

dailymaillazyjournos Wed 25-Jan-17 17:34:20

Not an expert or a medic but do have EDS classic type in the family. I think if the hypermobility is due to EDS rather than just being hypermobile joints then there are more possible signs. And there are different types of EDS.

I think it would be useful to know if DD has EDS as some things might need taking into account. For instance, both DD and I find that painkillers and local anaesthetic don't work too well. The dentist knows to give me enough to numb a horse and I know there's little point me having paracetemol if I have a headache . It can make skin more prone to cut and bruise and some people (depending on the type of EDS) heal slower and get keloid scarring. DD does whereas I don't. It can affect the shape of the palate (high and arched) and cause teeth to overcrowd. I had extractions at around 11 as some were growing over others. There are lots more possible manifestations and while there's not much that can be done, there's a lot that can be taken into account in terms of dental and medical care. DD had a lot of back pain in pregnancy and had hydrotherapy and physio to help, so it can also be good to know for future pregnancy. And it can make some internal organs more 'stretchy' as the collagen throughout the body can be more elastic. So my take is that it would be useful to get a proper diagnosis. And also to know what exercise to do and not to do (DD told not to do yoga, aerobics, gymnastics and anything where the joints are prone to go beyond their natural range of movement. She has also been advised not to take her DD to ballet, gym etc until she's old enough for any EDS diagnosis to be made.

beggingbehind Wed 25-Jan-17 19:35:00

Hi there i myself and three of my children have EDS hypemobility of varying degrees, went through all diagnostic roots, treatment (sort of!) all sorts your really welcome to PM me so we can have a proper conversation. I'd be happy to welcome any questions you have. One of my children is 12 so around the same age

candycoatedwaterdrops Wed 25-Jan-17 20:44:34

Does your daughter have Hypermobility or Hypermobility Syndrome? I wasn't quite clear from your post.

PurpleMcPants Wed 25-Jan-17 22:39:56

I'm not entirely sure candy, as I understand it hypermobility is basically just flexible joints but it's hypermobility syndrome if it causes other problems? She's getting pain in her joints but doesn't have any other issues that we know of yet, so presume hypermobility. We've so far seen a gp once, where he did the beighton score and referred us to physio and OT, so we're at very early stages.

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