any on any experience in pku?

[connyflower]

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!


posted on heath but after advice thought this topic would get more responce.... thank you x

[connyflower]

anyone? could do with letting her know there is a little support out there ...please

[pinotgrigio]

Hi there. My DPs cousin has PKU. He's about 18 now and manages very well. It was a bit difficult for him during the teenage years, but he coped and now he's a great sturdy thing who relishes the fact that beer (or lager, or maybe both, can't remember) doesn't have protein and so he's allowed those! I'm not sure that his mum is online though but if there's anything I can find out for you, let me know.

[connyflower]

thankyou, for your reply just scarey that there isnt a lot of support out there for this as its so rare! shesjust worried that when she goes to school, other kids eating sweets , ect. how she'll be able to deal with the fact shes under such a strict diet

[connyflower]

bump????

[heartinthecountry]

Hi connyflower - no experience I'm afraid. Could you explain a bit more what PKU is? Sounds like it is a food related intolerance??? May be more people who could give more general advice as a lot of us on here have kids on special diets. So have experience of how to deal with kids parties etc etc even if not specifically PKU. Hope that makes sense.

[BadHair]

Will ask dp tonight - he used to work with someone who had PKU. Much more is understood about it now, and how to combat it, but the lady he used to work with had been undiagnosed as a child and had developed learning disabilities as result. Have to stress that the woman was about 50 and had not been diagnosed as a child.

this might help if she's not seen it already.

[tamum]

I can't give you any specific advice or experience about diet, but certainly we teach it as being just about the most curable genetic disease there is. If the diet is followed then your niece should be absolutely fine. This would be a good place for her to start looking for support, maybe.

[Sparks]

I used to know someone whose son had PKU. She never said much about the special diet, just got on with it IIRC, but always moaned about the long trip to the clinic. As tamum, PKU is very treatable condition.

Your cousin might like to get in touch with the National Society for Phenylketonuria .

[lolliepops]

bumping this for you

[connyflower]

thankyou for your replies i'll show her your reponces. Any one on here with kids with the condition? x