Anybody living with PKU (or know anybody)

Andrea78 · 05-09-2008, 06:36 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, 06:54 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, 07:19 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

Jean Cullen · 12-05-2008, 07:48 PM

Hi,
I have stumbled onto this site by accident and I'm not convinced it the right site for seeking info on PKU.

Your dietitian should be able to help you find good sites, but here are some that I have found.
PKU.com
MySpecialDiet.com and
pkutree.com.au
Pku tree is my favourite site. It has members who are new parents as well as adults with pku, teenagers and even stuff for the kids, yet it is small enough to feel personal. You are certain to find people dealing with the same issues that you are. It's helping me keep on track with my diet, that I really need. I have met some really nice people through it, who are a great support, you would too. I hope this is helpful to you.

Houston Heather · 12-07-2008, 05:39 PM

I had a coworker who was divorced. Her husband had custody of her 2 PKU kids. She just said "It's expensive to feed them".

05-09-2008, 06:36 PM	#1
Andrea78 MAJOR LCF POSTER! Join Date: Jun 2002 Location: in my nice CLUTTERED house Posts: 1,877 Gallery: Andrea78 WOE: Carboyhdrate Addicts Diet	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, 06:54 PM	#2
nonstickpam107 Thyroid Patient Advocate Join Date: Nov 2002 Location: NE Indiana Posts: 12,306 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. "The thyroid is nothing to mess with" ... Sunset Last edited by nonstickpam107 : 05-09-2008 at 06:56 PM.

12-05-2008, 07:48 PM	#4
Jean Cullen Junior LCF Member Join Date: Dec 2008 Posts: 2 Gallery: Jean Cullen	Have PKU Hi, I have stumbled onto this site by accident and I'm not convinced it the right site for seeking info on PKU. Your dietitian should be able to help you find good sites, but here are some that I have found. PKU.com MySpecialDiet.com and pkutree.com.au Pku tree is my favourite site. It has members who are new parents as well as adults with pku, teenagers and even stuff for the kids, yet it is small enough to feel personal. You are certain to find people dealing with the same issues that you are. It's helping me keep on track with my diet, that I really need. I have met some really nice people through it, who are a great support, you would too. I hope this is helpful to you.

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05-09-2008, 07:19 PM	#3
nonstickpam107 Thyroid Patient Advocate Join Date: Nov 2002 Location: NE Indiana Posts: 12,306 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

12-07-2008, 05:39 PM	#5
Houston Heather Blabbermouth!!! Join Date: Jun 2003 Location: Houston Posts: 5,655 Gallery: Houston Heather Stats: 228/171/150 WOE: Atkins 2002 Ongoing Weight Loss Start Date: Feb 26, 2008	I had a coworker who was divorced. Her husband had custody of her 2 PKU kids. She just said "It's expensive to feed them".