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any on any experience in pku?

4 replies

connyflower · 08/02/2005 08:24

my cousin has just had a lovley little girl and test have shown she has pku? aparently quite dangerous condition any one got any experience of this she's the only case in north east and at the minute shes feeling a bit low about it all, if any one has any info or experience i could pass this thead over to her to show shes got some support and advice available =, thanks in advance!

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connyflower · 08/02/2005 08:41

Phenylketonuria this is what it stands for, would really appreichate any advice shes pretty alone right now in this, ive told her mumsnet would help, can anyone its so rare not really any info on the net

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JakB · 08/02/2005 08:47

Hi there connyflower, yes, I have met a little girl with PKU through groups at my local child development centre (my daughter has autism). As far as I know, if detected in newborns it is controllable with diet. Check out the following link... www.cafamily.org.uk/Direct/p21.html. Why don't you post this on the special needs board as somebody may know more there...

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JakB · 08/02/2005 08:48

ps The reason the little girl was at the child development centre was because it WASN'T detected early and did affect her development. As far as I know children with pku develop COMPLETELY NORMALLY on the special diet. Reassure your cousin and tell her she will get lots of support here.

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connyflower · 08/02/2005 09:04

thanks jakb, shes only 2weeks ols and the found out last week so think it was detected as early as they possibly could i will have to tell her to come on and post and assure her she'll get loads of support! i'll post on special needs too , thanks again