My story is below and I found out about Urea Cycle Disorders and I wanted to tell you about my twenty five year old fiancé. From what I understand, Baylor University, the Mayo Clinic in Minnesota and a university in California have all been involved in studying cultures provided by Good Samaritan Hospital in Phoenix for Joseph Patrick Phillips. Would you please help me to crusade against it happening to others. Your reply would be deeply appreciated. Read the rest of this entry
Archive for the ‘General Nutrition’ Category
Urea Cycle Disorders – The hidden danger
Tuesday, June 23rd, 2009Tags: Inherited Metabolic Disorders, metabolic, metabolic disorder, urea cycle disorders
A teenagers view on living with PKU
Tuesday, June 2nd, 2009I am 15 years old. I have PKU so cannot eat food high in protein such as most dairy products, eggs, meat or fish. Also, I cannot have any drinks or food that has aspartame in, this is a sweetener but is also high in phe which is what my body can’t deal with. Read the rest of this entry
Tags: PKU and Children, Thoughts on PKU
Annual Low Protein Living Weekend – Ireland
Friday, May 8th, 2009April 3rd – 5th 2009, saw the second Annual Low Protein Living Weekend take place in Mount Wolsley in Tullow, Co. Carlow. We had 143 attendees participate over the weekend. This was almost double the numbers that attended last year. The weekend began on Friday evening and finished Sunday afternoon. Read the rest of this entry
Eosinophilic Disorders
Friday, April 3rd, 2009We are parents to three children with eosinophilic disorders. This is our story so far.
We are Michelle and Steve we have three children, All of them have Eosinophilic Entocolitis (EC,EG,ED)and our middle son also has eosinophilic oesophagutis (EE)accompanied by
Multiple food allergies and multiple drug allergies. Read the rest of this entry
Newborn Screening Survey Invite
Monday, March 16th, 2009We would like to invite you to take part in a survey being run by Coventry University and Sheffield Children’s NHS Trust.
The survey is concerned with newborn screening that is undertaken in the first 5-8 days of a baby’s life (the ‘heel prick’ test). From the blood sample taken it is possible to recognise some disorders early in a baby’s life which if left untreated would cause serious health problems. As part of a research project it is proposed to extend screening to test for additional inherited metabolic diseases.
Experiences going off diet – PKU
Wednesday, February 25th, 2009I thought I’d share my experiences with going off diet and my experiences with the diet in general.
As a kid, I was eating mainly carbs and fats and lots of fruit, but very small amounts. I was a tearaway with ADHD so I was burning through energy like no tomorrow. As a result, I was a pretty lean kid and my dieticians expressed concern that while I was a tall child, I was pretty light.
Tags: back on diet, PKU, Thoughts on PKU
PKU – What it means for my son
Friday, January 30th, 2009Birthday cake, a hot dog, even a McDonald’s Happy Meal are all off limits to our six-year-old son James.
James doesn’t have food allergies, though. He suffers from PKU, which drastically limits his diet for the rest of his life. PKU means James’ body can’t metabolize phenylalanine, one of the building blocks of protein.
Tags: Inherited Metabolic Disorders, metabolic disorder, PKU and Children, Thoughts on PKU
London Low Protein Cookery Demo
Monday, January 19th, 2009Nutricia held another of our low protein cookery days on the 14th January 2009 at The Cookery School, London. The aim of the day was to provide Health Care Professionals (HCPs), with practical tips and advice to pass on to the patients they have who follow a restricted, low protein diet. The group was made up of mainly dietitians but there was also a dietetic chef who didn’t have much experience in this area.
Tags: cooking metabolic, Diet Tips, metabolic, metabolic awareness, metabolic disorder
My Special Diet
Wednesday, January 14th, 2009My name is Julie and I have PKU. I wanted to take a few moments to share my experiences with you. I am 22 and I have 3 brothers, but I am the only one with this condition.As a child I can remember feeling a little different particularly at meal times. My parents were great though: there were always making stories up about my special diet. My brothers, who are all older than me were also involved my education.
Tags: Add new tag, My Special Diet, PKU
Learning about PKU – One boyfriends odyssey!
Monday, December 1st, 2008My partner has PKU and is showed my a few of the blogs on this site and, knowing I’m a bit of serial blogger, ask me to do something for this site so I’ve written a blog about living with someone with PKU as I’ve read a few by people with PKU and want to put across the other side of it.As you may have guessed, I am non PKU, in fact had no idea of what PKU was until I met Jill.
Tags: metabolic awareness, metabolic disorder, PKU, Thoughts on PKU