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October 20th, 2009, 10:15 PM
|  | Platinum Member. 2010 RAK Recipient | | Join Date: Oct 2006 Location: on the West side
Posts: 2,094
| |  PKU positive in Guthrie test
Just seeking some info on PKU. My twin nephews guthrie heel ***** test came back positive for PKU. From a bit of googling, I understand this is where the body has trouble breaking down proteins? At the moment, they have to have blood tests every couple of weeks to make sure the levels of a something (can't remember what my brother said) don't go over a certain amount. When they eventually start solids, they will still be monitored and then it will be determined what kind of special diet they need.
Has anyone had any experience with this or know any good info that I can pass on to my brother and SIL?
TIA
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October 20th, 2009, 10:27 PM
|  | It's only time before you wake a sleeping lion.... | | Join Date: Aug 2008 Location: Brisneyland
Posts: 1,581
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One of my schoolfriends had it - she had a special diet, but nothing too wild. Same as any other kid with an allergy, I guess. She's a grown up now, and she's OK. That's the best I can do, info wise.  I hope things are OK for them.
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October 22nd, 2009, 10:55 PM
| | Platinum Member. 2010 RAK Recipient | | Join Date: Oct 2006 Location: on the West side
Posts: 2,094
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Thanks snugglybean. That's good to know.
Just bumping this up to see if anyone else out there has any info as well?
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October 22nd, 2009, 11:14 PM
|  | You're not the one who let me down, but thanks for offering | | Join Date: Jan 2005
Posts: 7,789
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I dont know much about phenylketonuria Im afraid other than what I can google.
There is lots of info out there though and from what I have read it is very manageable.
__________________ DS - 'when you grow up you could be a big cook mummy, because you cook nice things'   |
October 27th, 2009, 10:35 PM
| | BellyBelly Member | | Join Date: Jan 2004 Location: GONE MAD....back in 10!!
Posts: 2,412
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My Gf has a child with PKU, apart from a special diet he is perfectly fine.
They just can not have anything with alot of protein in it, meat fish chicken, dairy, there is so much they can not have, but you can find alot they can have too,from the general supermarket. They also buy some special food for him from a (o not sure what the place is called now) but it is pretty expensive, however the government does supplement her for the costs.
__________________ JO-XX- (37) Mum to 3 teenagers, a pre schooler, a toddler & a walking baby ( oh no does this make him a toddler now? )  |
October 27th, 2009, 10:53 PM
| | Platinum Member. 2010 RAK Recipient | | Join Date: Oct 2006 Location: on the West side
Posts: 2,094
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Thanks rayray and storm
It sounds a lot more manageable than I thought. I will let my brother know along with some other info I have found out.
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November 5th, 2009, 10:37 AM
|  | BellyBelly Professional Support Panel | | Join Date: Jun 2008 Location: Amongst the trees
Posts: 99
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Hey Eluned,
I would definitely refer your brother and SIL to a Naturopath or Dietician for some sound advice regarding dietary changes. A Naturopath can also prescribe natural remedies to support your little nephews.
As the other lovely ladies have said, PKU isn't as scary as it sounds,
All the best,
__________________
Warm Regards, Nicole Tracy
Nicole is a Naturopath who previously worked in the BellyBelly Pregnancy Centre. Check out her website or make an appointment by clicking here. |
November 5th, 2009, 10:48 AM
|  | Being the coffee bean | | Join Date: Oct 2008 Location: Gawler, SA
Posts: 1,120
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PKU is really manageable if it is found very early. It is one of the reasons they do the guthrie test. If left untreated it can cause a lot of damage to the body, however this rarely happens these days. A modified diet and he will be absolutely ok.
I think there are some support groups out there that give great information. GL
__________________
Cat (31)  Hubby extraordinaire (36) with DD1 "Lumpy" 14.9.03 Emergency C-Section, DD2 "Fred" 1.7.09 Empowered C-Section  In difficult situations you have three choices: be a carrot, egg or coffee bean. In hot water; the carrot goes soft, they give up; the egg goes hard, they loose their soft side;
but the coffee bean makes coffee, they change the situation they're in. |
November 5th, 2009, 02:58 PM
| | Platinum Member. 2010 RAK Recipient | | Join Date: Oct 2006 Location: on the West side
Posts: 2,094
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Thanks Nicole and ryatha SIL is still BF'ing the twins (they are only a month old now and go her for BF'ing!) so I am sure so far it's all good. I'll let them know about naturopaths and dieticians as well, they'll certainly need those services in the future if not now.
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