Anybody living with PKU (or know anybody)

Andrea78 · 05-09-2008, 05:36 PM

Hello,

I am interested in knowing if there is anybody here who has the metabolic disorder known as PKU or phenylketonurea. Or if anybody here knows anyone with this disorder. My 7 month old daughter has PKU, and now that she is eating solid foods I am finding it to be a bit more challenging to feed her, and a little worried about managing her diet in the future. I am already working with a dietitian but it would be nice to be able to speak with someone who has life experience with this.

PKU is sort of a rare disorder, so I won't be surprised if I don't get any responses. But you never know unless you ask, right?

Thanks.

nonstickpam107 · 05-09-2008, 05:54 PM

I know a family with two children who need protein restrictions and used some sort of proteinless formula when they were little. But, then again, I (and many members of my family) have a rare disorder too (seems that those with rare disorders or disease tend to find others, lol). I'm from Western New York State and the family whose kids have PKU are also. Hmmm.

That must be quite difficult managing your DD's diet.

ETA: Do you know about this website:
National PKU News You probably do, but I found it helpful when I discovered a website and organization for HIE when I needed answers.

Pam

nonstickpam107 · 05-09-2008, 06:19 PM

And here are some forums that will put you in touch with other parents of kids with PKU:

PKU.com, Join our Growing PKU (Phenylketonuria) Community

PKU Forum

Phenylketonuria (PKU) / Family Village Library

HTH

Pam

05-09-2008, 05:36 PM	#1
Andrea78 MAJOR LCF POSTER! Join Date: Jun 2002 Location: Central NY, USA Posts: 1,566 Gallery: Andrea78 Stats: 290/272/140 WOE: Carbohydrate Addicts Diet/WATP Start Date: every day	Anybody living with PKU (or know anybody) Hello, I am interested in knowing if there is anybody here who has the metabolic disorder known as PKU or phenylketonurea. Or if anybody here knows anyone with this disorder. My 7 month old daughter has PKU, and now that she is eating solid foods I am finding it to be a bit more challenging to feed her, and a little worried about managing her diet in the future. I am already working with a dietitian but it would be nice to be able to speak with someone who has life experience with this. PKU is sort of a rare disorder, so I won't be surprised if I don't get any responses. But you never know unless you ask, right? Thanks.

05-09-2008, 05:54 PM	#2
nonstickpam107 Thyroid Patient Advocate Join Date: Nov 2002 Location: NE Indiana Posts: 11,354 Gallery: nonstickpam107 Stats: 230/116/120 (BF<26%) WOE: Started w/Atkins/Now BFFM Start Date: Nov. 23 2000	I know a family with two children who need protein restrictions and used some sort of proteinless formula when they were little. But, then again, I (and many members of my family) have a rare disorder too (seems that those with rare disorders or disease tend to find others, lol). I'm from Western New York State and the family whose kids have PKU are also. Hmmm. That must be quite difficult managing your DD's diet. ETA: Do you know about this website: National PKU News You probably do, but I found it helpful when I discovered a website and organization for HIE when I needed answers. Pam __________________ So many fireworks. So little time. Last edited by nonstickpam107 : 05-09-2008 at 05:56 PM.

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05-09-2008, 06:19 PM	#3
nonstickpam107 Thyroid Patient Advocate Join Date: Nov 2002 Location: NE Indiana Posts: 11,354 Gallery: nonstickpam107 Stats: 230/116/120 (BF<26%) WOE: Started w/Atkins/Now BFFM Start Date: Nov. 23 2000	And here are some forums that will put you in touch with other parents of kids with PKU: PKU.com, Join our Growing PKU (Phenylketonuria) Community PKU Forum Phenylketonuria (PKU) / Family Village Library HTH Pam