I wonder if this woman and her relatives have had the enzyme test for

Gaucher’s disease.  It should be ruled out.  If they have it there is an
expensive medication to replace the enzyme, but I don’t know if the
National Health Service pays for it.  The medicine keeps the disease
from progressing to joint degeneration.  If not taken soon enough, those
affected do have to have joint replacements.

Judy Ritchie

 

http://www.gaucher.org.uk/

 

 

 

 

 

 

 

Date:    Mon, 11 Nov 2002 22:42:07 -0000

From:    "c.claughton" <[log in to unmask]>

Subject: Fw: Transient osteoporosis/osteonecrosis

 

Posted for a colleague....

Any help would be gratefully received.

Many thanks,

Clare Claughton.

 

Would you do me a big favour of posting this on Lactnet.

 

I'm supporting a mother who is awaiting a diagnosis, but it looks

like its one or the other of these two. Two close female family members

have had hip-replacements in middle-age, so it's likely she has a 

predisposition to low calcium levels in her bones.

 

She's now feeding her third baby, who is approaching one month; but 

following an MRI scan confirming problems in her hip, she's coming

to terms with winding down breastfeeding. She has a lot of faith in her 

obstetric consultant who has been in contact with a bone professor

in Liverpool - their strong advice is to stop feeding now because it

seems she really is vulnerable to fractures while she's feeding.

 

Anyone have any knowledge or experience of the condition or supporting a

mother like this? I was wondering about partial feeding?

 

The mother has given me permission to ask for as much info as possible.


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