I have just had an enquiry from a mother of a 16 year old who has hemihpertrophy. She has a difference of some 4 centimetres in her leg length. Does anyone know of which NHS trusts in the UK are good at dealing with this? Details of the trust and the name of a consultant would be much appreciated as the mother has been receiving conflicting advice.
Best wishes
Bob Baker
BWS Support Group UK
Where are the family based Bob?
At GOSH the surgeon is Deborah Eastwood. A number of families have seen her regarding hemihypertrophy.
In Oxford it would be Andrew Wainwright. He performed epiphysiodesis surgery on our son 18months ago.
Many thanks for this. The family are based in Stratford on Avon.
Best wishes
Bob
Hi. My son has hemihypertrophy. We live in sittingbourne kent and are currently seen at medway and the orchards centre for orthotics etc....what is the conflicting advice please? My son has custom made shoes and a lift insole for the shorter leg and regular appointments....??
Sorry, my son is very young so surgery is not an option at present, so im probably not much help....sorry
Many thanks for the posting. The situation is that surgery will probably be required and the conflicting advice is whether it should be performed on the leg or on the back.
Best wishes
Bob
Ok. So we had our confirmation today my son DOES have beckwith wiedemann, the genetecist we are under from guys london (met for first time today) said that the hemihypertrophy needs to be kept as close an eye on as the scans and bloods because of the spine later on altho im sure she said they usually dont need surgery but also the biggest concern is the spine not necessarily the leg???....that still doesnt help much really does it....so much to think about and take in! Sorry im not more help
I'm very interested in this post. Live in Alaska and have been trying to correlate my 16 year old son's spine issues with his BWS to Docs. They don't think his scoliosis or kyphosis (hunchback) are related to the syndrome, and none of the doctors have mentioned uneven leg growth as a problem. 9 months later, we have finally been referred to a Shriners Hospital in Chicago and are going next month for our initial consultation for his back surgery. Normal people have a 30 - 50 degree curve but he measures in at 84 degrees. It causes him a great deal of pain. They want to do major back surgery and put a rod in and fuse several of his vertebrae.
Is it BWS?
Will tongues of babies with BWS get bigger as they grow?
macroglossia