Archive for the ‘Thoughts on PKU’ Category
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 Nutricia was delighted to support this event.
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Tags: Inherited Metabolic Disorders, Low Protein, metabolic, metabolic awareness
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 of this disease. Apparently if you are a carrier, there is a 25 percent chance that your child will end up with PKU.
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Tags: Parenting, PKU, PKU and Children
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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Tags: back on diet, maternal pku, metabolic awareness, 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) however over the years things started to slip away till i was not on the diet.
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Tags: metabolic awareness, PKU, Thoughts on PKU
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 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.
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Tags: 3 r's, Add new tag, back on diet, diet, metabolic awareness, PKU, Thoughts on PKU
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 I’m the first to admit that.
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Tags: exchanges, maternal pku, Phenylketonuria, PKU, pregnancy
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 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!
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Tags: back on diet, marriage, PKU, Thoughts on PKU
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 have children, I never really found out.
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Tags: metabolic disorder, PKU, Single Mother