I have seen Dr Hakim, Prof Grahame and Dr Hassan with various of my kids/teenagers. It`s my understanding that Dr Hakim (and I think Prof G but I may bewrong there) no longer see children but refer them instead to GOSH and Dr Hassan. My son saw Dr Hassan and Sue Maillard at the same appointment and is now going to GOSH on the 17th Sep for the 2 week rehab stay. I usually book a hotel and stay overnight when i have to come up from Wales for an appointment(a cheap one!) because we can't manage the return journey in one day, you could consider that.Once you have been seen by whoever you choose, he can write to your g.p. asking for Eva to be referred to paediatric physio and also o.t. and podiatrics if necessary. It`s a complicated issue isn't it?
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.