Anybody have Phenylketonruia (PKU)?

I was just wondering if anybody on here has PKU? I'm 16 and I have classical PKU. My 8-year-old sister also has PKU.

I drink Vitaflo PKU express coolers (orange and purple) and XPhe Maxamum (orange and berry). My sister drinks Phenex 2 unflavored and we're both allowed 300mg of phe a day (or 20 exchanges).

Lenore,
Thanks for your kind words! That's great that your a dietitian. I want to be a metabolic dietitian or a medical geneticist someday. I've been talking with my doctor, dietitian and genetic counselor alot about this (trying to figure out what to go to college for etc).

Thumbs up to your granddaughter! She sounds like an awesome girl!
Breanna

No, I do not have PKU, but I know about it, because I am a dietitian.

Congratulations for continuing to do the best you can for your body. I am very, very impressed!! As a young lady, you have accepted the situation with great courage.

My grandaughter is 8 years old, and she has Celiac disease so bad, that she does not dare eat anything with gluten in it. She has been very careful and kept to her diet and restrictions. She is also very brave, and I admire her.

Keep up the good work.

Lenore S Hodges, PhD, RD
Orlando, FL

Tags

　　PMS 　　Pleurisy 　　Plasmacytoma 　　Plaque Dental 　　Plantar Fasciitis 　　Plague 　　PKU 　　Pituitary Disorders 　　Pinworms 　　Pink Eye 　　Pimples 　　Pilonidal Cyst 　　Piles

Related information

People With PKU?

Jess, Here is a website on PKU. It has personal stories, tips for having to write papers, and even a scholarship for those with PKU who want to go to college. I hope this helps and God Bless! ...

Wat kind of foods can i eat if i have pku?

Babies are tested for PKU when they are born. You should already be on a special diet for this problem.

...

I am looking for a Gluten Free and a PKU (protein free) cake. Is there one out there?

A PKU recipe I don't know, but I have a really nice Victorian Sponge recipe. You can find it on www.hub-uk.com/interesting02/gluten-free... It's dairy-, gluten-, wheat-, corn-, egg- and y...

I want to know if there is a connection between PKU and Diabetes Type 1.?

no, not really, type 1 diabetes is an autoimmune disorder, while pku is a metabolic problem

...

What is a PKU done on the babay and what happens if it comes back bad?

PKU, or phenylketonuria, is a genetic disorder where the person lacks an enzyme to break down a certain amino acid called phenylalanine. In children with PKU, phenylalanine builds up in their bodi...

Can people with PKU get on ssi?

Phenylketonuria is not deabilitating. Get a job and eat right.

...

Can somone with PKU go undetected past their childhood?

Without treatment, most infants with PKU develop mental retardation. Those with untreated PKU may also develop additional neurologic symptoms. Babies born with PKU in the US and many other parts o...

What effects does pku have on a child's behaviour?

Devastating. The affects are cumulative, which is why the effects get worse as the child gets older. See this link: ...