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Spina Bifida and kidney infections: anyone know a good specialist?

(5 Posts)
Elibean Thu 14-Aug-08 10:24:12

My DN (adult) has mildish SB, and has had to self-catherize the past year or two. She's now having chronic, recurring, UTIs and kidney infections...really painful, and necessitating non-stop ABs.

She's not getting much help from her GP, and although she is due to see the SB clinic at Chelsea & West soon for her annual review, I just wondered if anyone had experience of this or knew of a good specialist she could ask to see either on NHS or privately??

I hate seeing her like this, its really affecting her life, morale, and relationships sad

Elibean Thu 14-Aug-08 21:06:44

bump?

babypowder Thu 14-Aug-08 22:12:49

Nothing of any value to add - just wanted to keep this active.

black31cat Tue 19-Aug-08 16:13:36

Hi,
Know this is an old thread but had to add my two cents worth. I have a similar problem to your daughter and i self catheterize most of the time but have a spc in at the moment. I see a great urologist at Pinderfields at Wakefield who specialises in neuro - urological problms. (i don't have SB, but i have a sacral nerve root injury so similar effects.)
I have constant uti's and am in an out of hospital for iv antibiotics.
Hope this helps,

PheasantPlucker Tue 19-Aug-08 16:22:12

Hi, I have no experience or advice to give, but wondered if it is worth contacting the Health Adviser at ASBAH (Association for Spina Bifida and Hydrocephalus - we have had many dealings with the charity as my dd1 has hydrocephalus). They have a helpline and might be able to offer some help and advice?

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