My 14 yr old daughter has an extreme case and is only allowed 120 mg phe per day. It is hard on her to watch other kids eat food she can not eat and when she goes to PKU camp the other kids get to eat more than she does. She struggles with her diet and her self-esteem. She not only has PKU but also Asperger Syndrome and the specialist are testing for another rare genetic condition. Does anyone have any advice or is there someone out there who is only allowed 120 mg per day that would be willing to talk with her and share their experiences.
breamarie91
User Posts:
116
Re:Looking for others- 120 mg of Phe per day Posted on:
April 30, 2007 22:28 GMT -1:00
Pebbles,
I'm sorry to hear that your daughter is having so much trouble! I'm allowed 300phes a day and it is hard at times for me to eat only what I should so I can't even imagine how hard it might be for her! I guess the main thing that has helped me is having atleast one younger sister who has PKU out of the seven of us (Erica is 8). Can I ask was Asperger Syndrome is? And I'll cross my fingers for you guys for the results for the testing you guys are doing! I would be more then happy to talk to your daughter if you want, if she has email then my email address is [email protected] or she can drop some posts here, it doesn't matter to me.
I really hope things get easier for both you and your daughter!
Breanna
15 w/CPKU
pebbles32165
User Posts:
2
Re:Looking for others- 120 mg of Phe per day Posted on:
May 2, 2007 23:48 GMT -1:00
Bre - Tiffani would love to talk to you allow her first response was "No Fair!" when I told her how much phe you get. One of her problems is the Asperger Syndrome which is a form of autism. She has a hard time socializing with kids her age. Her second problem is she is behind in development and has a hard time writing or typing because she'll lose her thought. She was wondering if you could call her or she could call you? Would you let me know.
sally
User Posts:
2
Re:Looking for others- 120 mg of Phe per day Posted on:
June 25, 2009 12:18 GMT -1:00
Pebbles-
I feel absolutely horrible, and I apologize for never getting back to you. I know you started this thread over two years ago, but if your daughter would be interested in speaking with me she can email me at [email protected].
Sally-
I would be more than willing to talk to you. The same goes for you, you can email me anytime, or we can talk here. Whatever you would prefer. It has been a long time since I have actually sat down and read posts on this website. A lot has happened since I last replied to this thread, and I actually have two PKU sisters now. Erica is ten years old, and Genavieve will be one on July 25th.
