Hi not been on for ages and could do with some advice.
Dom is 13 in July and was dx with HMS/HEDS about 3 years ago now. We have struggled withc docs and pain constantly, he is in agony most of the time now with legs and hands and back etc. His immunity is impaired and the school is giving me a hard time. It seems he could have the start of osteo-arthritis at the top of the neck and spine ...... even though the GP insisted his posture was causing the pain, instead of realising the pain is causing the posture.
He goes to Birmingham Childrens on Monday for an appt with rheumatology, considering he has been ignored for goodness knows how long I am expecting them to be unco-operative. The GP is requesting that they apply for a referral to GOSH, which I have asked for and keep being hung out on.
Is there anything I need to know about getting this appt? Such as are there any reasons they won't allow him an appt or would refuse to help us?
If they do say "no" then can i get a private appt? Does anyone know the cost of this? I am just at the point where I need him to see a doc who knows what he is going through and that will actually do something to help him. I am tired of battling everyone in the system just to get help for my son.
41 with HEDS, autonomic dysfunction, IBS, migraines, fibromyalgia, osteoarthritis, high blood pressure, underacive thyroid
Son 13 : HEDS, autonomic dysfunction, IBS - appt UCLH 27.4.2011
Daughter 19 : HEDS -awaiting appt UCLH
Dad : HEDS