August 19, 2008

PKU and the 3 R’s

By Paul T.

I remember when I first started seeing my dietitian on my return to the diet, sounds a bit like a movie title! PKU and the return of the Diet!!  She explained to me that to help maintain consistently low blood Phe levels, management will involve a three-pronged approach known as the 3 R’s: Record, Restrict, and Replace. I must Record the amount of Phe I consume, Restrict my diet to the right amount of low-Phe foods, and replace those higher-Phe foods with low-Phe alternatives, such as Phe-free protein supplements like Lophlex and Add-ins. I know this type of management is not a cure, but it has been effective in helping to prevent many of the symptoms of PKU in myself such as the drowsiness and bad temper. So remember the 3 R’s: Record, Restrict, and Replace. Read the rest of this entry »

Topics: Diet Tips, General Nutrition, Meatbolic awareness, Thoughts on PKU | No Comments »

August 11, 2008

Crohn’s and Jewish Ancestry

By Kyle

I’ve often wondered (as I’m sure many people with any sickness have) why me? I found this article the other day while doing some online research. I am of Ashkenazi Jewish descent (my grandparents fled Austria in 1940). I found it really interesting, and strange, how some people from a certain area or of a certain background can be affected by conditions that people are largely unaware of. Read the rest of this entry »

Topics: Crohn's Disease, General Nutrition | 1 Comment »

August 4, 2008

The trials and tribulations of PKU… or is it just me?

By KateW

It never ceases to amaze me how up and down living with the PKU diet can be. I’m the first to admit that for me every day is a struggle. It hasn’t really been an automatic lifestyle in… well… I can’t remember how long. Not to say that that’s acceptable, of course. It’s not, and I’m the first to admit that. Read the rest of this entry »

Topics: General Nutrition, Meatbolic awareness, Thoughts on PKU | 1 Comment »

July 25, 2008

Life & Living with PKU

By KateW

Well, I’m not sure how to start off, so forgive me if this beginning is a little bit rough! As I’m hoping to start trying for a baby soon, my intention is that this blog will follow my journey through the preconception diet and maternal PKU, but as it’s my first blog post, I suppose I should introduce myself and tell you a bit about my PKU journey thus far J I might also use this blog as a food diary, which I’m normally rubbish at keeping! Read the rest of this entry »

Topics: General Nutrition, Meatbolic awareness, Thoughts on PKU | 5 Comments »

July 22, 2008

A single mother’s perspective on PKU: Part V: Telling the father

By marya

I think this was nearly as hard as discovering that Jack had PKU. Do I tell the father that his son has PKU? Do I tell the father that he is a carrier? Maybe he already knows, maybe he has PKU himself? Do I tell the father that he is a father? He could already have children, I never really found out. Read the rest of this entry »

Topics: General Nutrition, Meatbolic awareness, Thoughts on PKU | No Comments »

July 21, 2008

Crohns - Getting the diagnosis right

By Kyle

I was diagnosed with Crohn’s Disease three years ago when I was 15, but I had been very sick for many years before I received that diagnosis. I always felt extremely weak and tired, was in a lot of pain, and had low blood counts. I also got dizzy a lot and would often have to throw up.

Over the years I saw a number of doctors and specialists (although never a GI specialist) and had numerous tests done. But no one was able to figure out what was wrong with me. I felt horrible all the time and there wasn’t anything anyone could do to help me. I had to be home schooled due to the fact that I was not well enough to attend school regularly. Read the rest of this entry »

Topics: Crohn's Disease, General Nutrition | 3 Comments »

July 4, 2008

What is the ketogenic diet?

By Kirk

It’s Friday and I want to have some fun- so I’m going to post about the ketogenic diet. I’ll introduce the concept of dietary treatment of epilepsy now. I’ll discuss how these diets might be working in a later post. Of course, I’m no doctor and most of this info has come from research I’ve done on the web so please feel free to correct me if you don’t agree with anything.  Read the rest of this entry »

Topics: General Nutrition, Uncategorized | No Comments »

July 3, 2008

Tyrosinaemia

By Sarah H

This is part four in the series for Metabolic Disease Awareness Week. It focuses on Tyrosinaemia which is another inborn error of metabolism (metabolic disease) caused by a deficiency in fumaryl-acetoacetate hydrolase.

There are 3 types of this disorder:

 • Tyrosinaemia Type I
 • Tyrosinaemia Type II  (Richner-Hanhart syndrome)
 • Tyrosinaemia Type III.

Read the rest of this entry »

Topics: Thoughts on Tyrosinaemia | No Comments »

July 2, 2008

A single mothers perspective on PKU. Part IV: What happens next?

By marya

Time seemed to have stopped after I was told that my baby had PKU. The midwife had gone and it had only just sunk in. I now had so many questions but where do I get the answers: there was no internet in those days.

I rang Debbie and cried my eyes out. She had never heard of this Phenylketonuria or PKU. She was very good though and suggested we sit down a write a list of the questions we needed to ask: she agreed to come with. I can’t remember what these were now but I do remember the process calming me down and giving me a sense of purpose. Read the rest of this entry »

Topics: General Nutrition, Meatbolic awareness | No Comments »

July 1, 2008

Phenylketonuria

By Dr B

HOW IS THIS DISEASE PASSED ON?

The metabolic disease phenylketonuria (PKU) is transferred to people through the genes they inherit from their parents. There have been cases of metabolic diseases being caused from the over consumption of a certain food and also via exposure to drugs that have caused a dormant gene to become active. This is exceptionally rare though and diseases such as PKU are detected at birth. Read the rest of this entry »

Topics: General Nutrition | No Comments »