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Dr Stanhope

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Hi Everyone

Yesterday we had our first appt. with Dr. Stanhope at Gt Ormond Street

Hospital, He is such a lovely man and the first doctor we have seen

that can actually help and knows a lot about RSS. He wants to admit

Bobbi for 2-3 days to do blood sugar tests and for us to see a

dietitian & surgeon as he felt that Bobbi would benefit from a G tube,

as in his words 'her feeding has been diabolical from birth' and she

needed far more calories than she currently has, which is about 500cal

a day at the moment. So we are now having to think hard about having a

tube placed or do I struggle on trying to get her to eat/drink more?

everything about a G tube scares me to death (the surgery, and also

how she will react to it) I would really appreciate any input on this

subject, from all those who have been through the same experience or

who are against it.

Brigitte (mum to Bobbi 16.5months, 13lb 6oz, 68.5cm, Reflux,

constipation & DGE)

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