Question about referrals

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Question about referrals

Postby RainbowsButterflies » Fri Feb 17, 2012 1:17 pm

DD is 4 and I suspect that she has inherited my HEDS. I know that she needs to be 5 for a referral to GOSH, but I am wondering if she would fit the other criteria.

She is under a paed for suspected Aspergers, and not due to go back until next February. When I mentioned my dx at her appointment earlier this month, the paed checked her over and said that she has very soft skin, but she has seen children who are much more hypermobile (whatever that means).

She has needed heel cups since she was 2 as she badly over pronates, and has recently had to have extra angles added to them. Her podiatrist says she also has femoral anteversion. Despite the heel cups, she still gets knee pain when she walks, and she is quite unstable on uneven ground and steps etc. It took her 6 months to walk unaided from cruising. Her elbows visibly hyperextend, and her thumbs touch her wrists. It's difficult to say whether she gets tired easily as she has a lot of sleep issues.
K x
AS, HEDS, probable POTS, IBS, chronic pain syndrome, chronic migraine with perpetual aura, A&D, atopy
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Re: Question about referrals

Postby Superstottie » Fri Feb 17, 2012 2:15 pm

I suppose if your daughters problems are being dealt with such as the heel cups etc then I doubt if it would be worth pushing for a diagnosis, as the problem with diagnosing before the age of 5 is that all children are Hypermobile at this age. It does sound like your daughter might have inherited your HEDS though but it could also be down to her other problems, so I would say to keep an eye on her and get anything you notice checked. Does she have any Physio at present? It might be worth seeing if you can get into a Peadiatric Physio if not, as in my experience they seem to be quite knowledgeable on Hypermobility.
Finally diagnosed March 2011 after 20 years of hypochondria!!!
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Re: Question about referrals

Postby RainbowsButterflies » Fri Feb 17, 2012 2:55 pm

She's not getting any physio, OT or any other help. Literally all she has are the heel cups, and that's only because I picked up on her over-pronation.

I'm not sure if she has a degree of stress incontinence, or if she leaves it too late to go to the toilet, but she also often has damp knickers and gets nappy rash (plus she still has quite a lot of accidents). She also has quite loose bowel movements, and has done since weaning. I took her to the GP about it when I started weaning DS and realised, but he just said it was a toddler thing (DS also seems to have IBS type issues - his dirty nappies are either very loose or like rabbit droppings).
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AS, HEDS, probable POTS, IBS, chronic pain syndrome, chronic migraine with perpetual aura, A&D, atopy
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