Has anyone been private to see consaltants to fnd out if eds were seeing Erin...

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  • That's good to know Tracey,im really considering it as I have hypermobility and arthritis and gastro issues althomhave never been tested for eds I'd like Erin to be justincase as she's showing all my problems earlier x

  • We are seeing professor Grahame on Thursday for our son as GOSH have been useless

  • Let me know how it goes Rachael x

  • I will x

  • If we paid to see Prof Grahame do we get overall advice about HMS or is it just the joint part - I would willingly pay the £300 if I could get proper advice on all aspects and if they could confirm the gastro part was part of it rather than just being told to rub his tummy better like when we went to GOSH

  • Rowena I'm in Australia and my son is under Dr. Murray who worked with Prof. Grahame in London (in fact he's just been over here!) and he most certainly understands the breadth of problems it causes. Why I am responding to your post though is my outrage at the dismissive advice you were given. My son has severe stomach pain and again tonight he cried and it breaks my heart, before being referred to Dr. Murray I got the same kind of brush off from a GP but I KNEW something was wrong, any child who asks to go to bed early and cries in pain is ill!

  • Rowena Prof Grahame does look at the tummy issues and will refer else where so he is worth the £300 x

  • Thanks for the advice Jules and Tracey - reckon we will be ringing up to get an appointment too - Tracey do you then have to continue only in the Private Health sector or can you go back to NHS for some things? Its typical my sister paid for me and hubby to have a Health insurance scheme (not quite private but can get things done quicker sometimes) but didn't do it for the boys because they thought the NHS would always look after kids -eyes opened now and realise that not true. The one thing I might try for is the Genetic testing as maybe I could ask for me and that might confirm things for Tim - I am going to ask for my own medical records as when I was the same age I had a thing like Glandular Fever and I was definitley bendy - so good chance they diagnosed it wrong.

  • No. He refers you to the NHS a Dr Ninis who he is now working with because of Daniel so all treatment can be on the NHS x

  • Thanks for the quick answer Tracey - think I will get this sorted- trouble is when I read the posts I don't think he is as bad as everyone else's children but in all honesty he is not the happy healthy child he was 18 mths ago so I guess he needs to see someone who knows what they are talking about - fed up with feeling sick every time I have to ring up the school to say he is off again