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Post by JP on Sept 22, 2015 12:14:28 GMT 1
Hi there, my nephews both have Bartter Syndrome and the older one is having his 3rd birthday this week. My sister is really struggling with potty training him which is to be expected due to the extra volume of urine. I wanted to reach out on here to see if anyone has any experiences they can share, or would even be willing to send me a phone number / email address to pass on to her to have a chat through how you did things and give her some encouragement! Or at least help her to feel she is not the only parent in this situation! Thanks so much, JP my email address is jp-forward@hotmail.com
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Post by natalie on Sept 22, 2015 14:47:19 GMT 1
Hi I'm not sure if your from the UK or have the NHS evailable to you or not but Dr Delef Brockenhaur from GOSH ( great Ormond St hospital London ) is an expert on paediatrics with Barrters sundrome and gitelmans sundrome as well as renal. He might be able to provide you with some advice or at least know someone who can. Dr Delef Brockenhaur. d.bockenhauer@ucl.ac.uk Is his email address x hope this helps x
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