Anybody have a child with PKU (phenylketonuria)? - Mothering Forums
Forum Jump: 
 
Thread Tools
#1 of 4 Old 07-09-2013, 10:20 PM - Thread Starter
 
amyowltree's Avatar
 
Join Date: Aug 2009
Location: Redwoods and Ocean, CA
Posts: 12
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I originally posted this question in the nutrition and good eating forum but no one responded.  I would really like to connect with parents who have children with this metabolic disorder. 

 

In layman's terms:  my identical twin toddlers have a genetic mutation that makes it so they can not process protein properly so they have to maintain a lifelong diet of restricted protein intake or they will suffer brain damage.

 

Anyone out there have to live this way?


Amy, SAHM to 6yo Nadia and 2mo Darcy and Penelope

amyowltree is offline  
#2 of 4 Old 07-10-2013, 08:37 AM
 
Join Date: May 2011
Posts: 3,393
Mentioned: 65 Post(s)
Tagged: 0 Thread(s)
Quoted: 25 Post(s)
Quote:
Originally Posted by amyowltree View Post

I originally posted this question in the nutrition and good eating forum but no one responded.  I would really like to connect with parents who have children with this metabolic disorder. 

 

In layman's terms:  my identical twin toddlers have a genetic mutation that makes it so they can not process protein properly so they have to maintain a lifelong diet of restricted protein intake or they will suffer brain damage.

 

Anyone out there have to live this way?

Okay, I'm back...lol

Here is an old thread posted.(2007) The thread starter "hapahoalegirl" has not visited Mothering online in a while but maybe a personal message(pm) from you could turn could into a connection? http://www.mothering.com/community/t/633602/babys-pku-tests-results-slightly-elevated

Also, Maybe you could find a connection here..you'll have to scroll down the page  http://pkuworldlink.org/ca.html

 

Also,Babycenter,http://community.babycenter.com/groups/a201175/pku_low_protein_and_other_metabolic_disorders

 

 

Okay mama, you probably had done and checked out thee sites but I just wanted to help..I hope I did a bit.

Tracy

Good luck!

amyowltree likes this.
tracyamber is offline  
#3 of 4 Old 07-10-2013, 08:43 AM - Thread Starter
 
amyowltree's Avatar
 
Join Date: Aug 2009
Location: Redwoods and Ocean, CA
Posts: 12
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Thank you Tracy!  The Babycenter one is helpful!  I will sign up and join in their conversations.  They even have a thread about identical twins with PKU! 


Amy, SAHM to 6yo Nadia and 2mo Darcy and Penelope

amyowltree is offline  
#4 of 4 Old 07-10-2013, 09:14 AM
 
marsupial-mom's Avatar
 
Join Date: Feb 2010
Posts: 779
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

NO, but I've researched it a bit because my husband has a friend who has it. HIs friend describes the diet as "basically vegan." Since we're a vegan adoptive family we put PKU on our the list of special needs that we would readily accept in an adoptive child. I'm sure you've already done your own googling but in case you haven't come across this one yet, it's a list of family support groups: http://www.pkunews.org/support/groups.htm

marsupial-mom is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off