Thoughts on PKU

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Learning about PKU - One boyfriends odyssey!

Monday, December 1st, 2008

Hi All
My 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 [...]

Scottish IMD day- Crieff Hydro Hotel 22/11/08

Tuesday, November 25th, 2008

The beautiful Crieff Hydro Hotel was the location for what was hopefully the first of many meetings specifically aimed at people with inherited metabolic disorders (IMD) as well as their parents and carers. This meeting was to give people who live in Scotland, a chance to meet others who are similarly affected by IMD’s and [...]

PKU, PKU, PKU

Monday, October 13th, 2008

When Jeff and I got married we knew nothing about PKU. Even during the first two years of us building a home together we were oblivious about this Metabolic Disorder. We found out all about it with a shock when we had our first child. Little did we know that we were in fact carriers [...]

Starting the PKU pre-conception diet

Wednesday, October 8th, 2008

It’s been a while since I’ve posted anything, and a lot has happened in the last month and a half. The biggest thing is that I got married! My husband and I had a lovely wedding in Australia and spent three weeks in South East Queensland having our honeymoon.

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Birmingham Children’s Hospital IMD Games 2008

Monday, September 29th, 2008

On the 28th September 2008, over 100 children converged at the Alexander Stadium, Birmingham, to participate in a special day. What made the day so special was that the children participating had all been affected in one way or another, by an Inborn Metabolic Disease.

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Getting back ‘on diet’ - PKU

Wednesday, August 20th, 2008

Hi my name is Andrew i am 36 years old, when i was younger i was on a strict diet which was controlled by my mum. When i got to my teens, the doctors wanted me off the diet. When the doctors told me this i said no. I was to used to the diet (low pro) [...]

PKU and the 3 R’s

Tuesday, August 19th, 2008

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 [...]

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

Monday, August 4th, 2008

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 [...]

Life & Living with PKU

Friday, July 25th, 2008

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 [...]

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

Tuesday, July 22nd, 2008

 
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 [...]

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