PKU positive in Guthrie test - Pregnancy, Birth & Baby Forums ~ BellyBelly

Eluned · #1 (**permalink**) October 20th, 2009, 10:15 PM

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

snugglybean · #2 (**permalink**) October 20th, 2009, 10:27 PM

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.

Eluned · #3 (**permalink**) October 22nd, 2009, 10:55 PM

Thanks snugglybean. That's good to know.

Just bumping this up to see if anyone else out there has any info as well?

rayray · #4 (**permalink**) October 22nd, 2009, 11:14 PM

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.

storm · #5 (**permalink**) October 27th, 2009, 10:35 PM

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.

Eluned · #6 (**permalink**) October 27th, 2009, 10:53 PM

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.

**Nicole Tracy** · #7 (**permalink**) November 5th, 2009, 10:37 AM

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,

ryatha · #8 (**permalink**) November 5th, 2009, 10:48 AM

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

Eluned · #9 (**permalink**) November 5th, 2009, 02:58 PM

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.