Here some suggested organisations that offer expert advice on SN.
dd's hip x-ray results - roll up CP experts(11 Posts)
dd is 2. Her hip xray shows slight shallowness of the left acetabulum and some early signs of a mild subluxation........................
So.....the neurodisability Paed wants to refer dd to the Orthopaedic surgeon at our local hospital. Our local hospital is not well thought of generally. How do I find out about the reputation of specific departments/doctors? I will need to have this information before asking for a national referral.
I will see dd's GP for advice but just wondered if anyone has any suggestions or experience of the type of changes dd's x-ray has revealed. TIA
Don't know anything re the hospitals, but the xray being not quite normal needs to be acted upon and you need to be on the radar in case she needs further treatment in the future.
The general rule is CP kids need to put weight on their legs through the hip joint to ensure proper seating of the ball joint into the acetabulum, its only through weight bearing that this happens. As your DD is already showing mild abnormalities you need to get advice from the orthos and the physio about what is safe. I think continuing with weight bearing and stretching of the hamstrings is needed, but because of the findings these need proper professional advice. They may right themselves with therapy, or ultimately need surgery. I've no personal experience of diplegia so hope someone has some experience to offer you.
We're in South West London. Chelsea Westminster are brilliant. Consultants Stewart Evans and Alison Hulme are specialists in this area and the physio support is first rate. Linda Eve is the physio practitioner interface with the consultants who is incredibly knowledgable. Whole physio team led by Deryn Watt is worth knowing about.
Guys used to have a well thought of team for diplegia - I suspect that they still do but I don't know anyone by name - it may be closer to you. We used botox initially to amielorate the potential problems involved. Ultimately it was resolved successfully by surgery. Some people don't need either - just physio - but monitoring it properly from an early age will give you a good idea what is required.
Thanks thereitis - worthwhile asking dd's GP about. The ND Paed said she will only refer on to Guys for advice - not intervention. Does your dc have the same issue? I scared myself googling last night It seems the condition is treated very effectively without surgery in babies under 6 months (with a brace) but that surgery is almost always necessary in older children. I had hoped that if we went for SDR, that we might avert the need for orthopaedic surgery <sigh>
Sneezecake - dd is weight bearing much more now. She walks well with a kaye walker and tolerates the standing frame for up to half an hour a day (very active, so gets hacked off being stationary).
Thereitis - Guys is nearer to us but there's not a great deal in it. Bit easier by public transport I expect. What surgery did your dc have?
Multi-level surgery - muscle and tissue and luckily no bone. We had the same issue when my ds was very small - everyone is different and the xrays will tell your story - for us weight bearing helped enormously. (we also had a brace for awhile). Botox relased the aductors making it easier for him to walk when he was quite young. In our experience the skill of the person administering the botox has everything to do with its efficacy. His surgery wasn't until he was almost 12 when the fear was that the growth spurt at adolescence was seen as a potential danger to hip dislocation (and sinking that would ultimately prevent him from walking). Surgery was difficult but a complete success. I understand that a girl in our neighbourhood also had a good experience at Guy's with their team.
Definitely get advice from the experts and if they will refer you to Guy's do it. Our initial referal was to Guy's and their gait clinic. After seeing us they made their recommendation to the team at Chelsea Westminster (it was much closer for us). Move quickly to get in the system on this because leaving it late raises more challenges to overcome! Our experience is a testiment to the quality of the NHS and the skill of the doctors we worked with.
I'd recommend the Evelina - they have a fantastic team dealing with children with movement disorders esp CP. They are top level along with GOSH, Alder Hey etc. We have seen Charlie Fairhurst who is excellent in this field but also have referrals on hold for when we need them to two other consultants there. Evelina is part of Thomas's hospital and I always thought they were connected with Guys but not sure about that now.
Martin Gough is the orthopaedic surgeon you want to see there - he has a movement disorder of his own and apart from anything else it's great to see that in a consultant!
computer playing up....
Thereitis/Hairy - thanks for your suggestions. I will speak to dd's gp next week. I think she'd benefit from being seen at a gait lab.
We've been quite anti-botox but might have to reconsider it now - if the improved weight bearing would help her hip.
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