2

What are the best treatments for Phenylketonuria?

See the best treatments for Phenylketonuria here

Phenylketonuria treatments
4 answers
People who follow the prescribed dietary treatment from birth may have no symptoms. Their PKU would be detectable only by a blood test. People must adhere to a special diet low in Phe for optimal brain development. Since Phe is necessary for the synthesis of many proteins, it is required for appropriate growth, but levels must be strictly controlled.

Posted Feb 24, 2017 by Levi Christopher Lucero, Jr. 2185
To begin with, the first thing proposed is to balance the amounts of phenylalanine a person receives throughout his daily meals. Food is separated in food a person can eat freely, food that the person is forbidden to eat and food that is in a gray area and maybe sometimes can be consumed carefully. For example, meat is off the table but most vegetables and fruits are edible (with some exceptions that belong to the gray area). Apart from that, in order for the person to be able to take all the nutrients needed, there is a formula that is measured and received (few times a day). Lately, there has been a medicine called Kuvan, that is in the proposed treatment for Phenylketonuria. It aims in lowering the phe levels in one's blood, in order to have a more "relaxed" diet.

All of the above are valid for a person's lifespan. Phenylketonuria does not "go away" with the treatments that exist so far.

Posted Sep 18, 2017 by Georgina 1300
I believe it depends on how sensitive you are to protien. I have a case that I am highly sensitive and can only have 1.5 grams of protien per day. Formula is a must to keep levels low but it really benefits one to have an excellent idea of sensitivity for treatment

Posted Sep 22, 2017 by Nickelle 2000
Formula and a low protein diet is ideal
There is also treatment with Palynziq and Kuvan
Gene Therapy is also a new treatment for PKU in clinical trials

Posted Jan 28, 2020 by Ryan 600

Phenylketonuria treatments

Phenylketonuria life expectancy

What is the life expectancy of someone with Phenylketonuria?

5 answers
Celebrities with Phenylketonuria

Celebrities with Phenylketonuria

1 answer
Is Phenylketonuria hereditary?

Is Phenylketonuria hereditary?

4 answers
Is Phenylketonuria contagious?

Is Phenylketonuria contagious?

4 answers
ICD9 and ICD10 codes of Phenylketonuria

ICD10 code of Phenylketonuria and ICD9 code

3 answers
Natural treatment of Phenylketonuria

Is there any natural treatment for Phenylketonuria?

3 answers
Living with Phenylketonuria

Living with Phenylketonuria. How to live with Phenylketonuria?

2 answers
Phenylketonuria diet

Phenylketonuria diet. Is there a diet which improves the quality of life of...

4 answers

World map of Phenylketonuria

Find people with Phenylketonuria through the map. Connect with them and share experiences. Join the Phenylketonuria community.

Stories of Phenylketonuria

PHENYLKETONURIA STORIES
Phenylketonuria stories
Hello to everyone that reads! im currently 19 with a PKU toddler! he was born march 7th 2014. got a call on the 12th and then took a nice long ride a ccouple hundred miles away on the 14th to my son's pku clinic. they explained everything to me and h...
Phenylketonuria stories
Found out my baby daughter has got PKU, still getting my head around it all
Phenylketonuria stories
I was a month old went the doctors  told my parents that I have pku. I'm 42 years old. I got married in 2005. To a really nice guy but in 2009 my husband passed away on February 13, 2009. At that time I went off diet for 5 years.  And it really mes...
Phenylketonuria stories
It's actually my children that have PKU. Both diagnosed within ten days of birth and doing very well. My daughter is now nearly ten and currently on 7.5 exc. per day. My son is 5 and on 7 exc. per day.  Both are treated at Bristol Childrens Hospit...
Phenylketonuria stories
Hi! I'm Andreia. I'm 28 years old. I'm from Portugal living in irland Since 2014. I was diagnosed when I was 12 days old. Still following my diet. My family did everything they could to give me all I needed. I'm a nurse now, have a job, starting my o...

Tell your story and help others

Tell my story

Phenylketonuria forum

PHENYLKETONURIA FORUM

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map