General Medicine

» ericmaze - Phenynlketonuria (PKU)

I am a 34 year old with PKU. I am the youngest of five children. My brother who was second born also has PKU. Unfortunately, he was not caught in time and has mental retardation. PKU is a neurological disease that results in mental retardation within the first few weeks of birth if not treated immediately. PKU is when the enzyme that breaks down the two amino acids, phenylalanine and tyrosine, is not present in the body. The build up of phenylalanine creates these sever problems that PKU has. It is because of these sever problems that a person who has PKU must undergo a very strict diet. Every day for the rest of the person's life they must maintain a certain level of protein in the body. The person must watch all of the protein that they intake in one day. You would never realize the amount of protein that is inside each food, until you start counting grams of protein inside each of the pieces of food that is on your plate. For example, milk,steak, and diet soda are just some items that I can not eat or drink. Even ice cream, and fish are foods that I can not eat. This is just a few things that I can not eat because I have PKU.

-- posted by ericmaze

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» Jennifer Gerics - Phenynlketonuria (PKU)

In response to Phenynlketonuria (PKU) posted by ericmaze:

Thank you for writing. I hadn't heard of this disorder, but I would like to investigate it and write an article about it in the near future. It's amazing what some diseases do to the body, and what procedures (strict diets) become the cure. Thank you again for sharing your story, and feel free to post again about this neurological disease.

Sincerely,

Jennifer Gerics

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» redback - Phenynlketonuria (PKU)

In response to Phenynlketonuria (PKU) posted by ericmaze:

Eric...there are many people who may think they're on a strict diet...but they can cheat along the way or they exercise more to work it off. I'm a diabetic so a carbohydrate counter...and I grumble every so often about my diet regime.

In Australia, PKU is recognised as causing a 'severe disability' so that a carer allowance is automatically paid up to a child's 10th birthday, reviweable after. This was because of the very onerous attention to diet over and above what's expected of normal parenting. The aim has to make the child independent so in some sense, they grow up faster than other kids who nag for ice creams etc.

Every so often, I need such reminders so I grumble less. So, thanks for that.

Please let us know what makes a great meal for you.

Best wishes.

-- posted by redback

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» ericmaze - Phenynlketonuria (PKU)

In response to Phenynlketonuria (PKU) posted by redback:

Dear Redback,
There is not that much food that I can eat. One particular meal that I love, is Vegetable Lasagne. The problem is not that many restaurants or stores make Vegetable Lasgne. It's very hard to find. Also, I'm a big water drinker. I drink a gallon of water every day. Growing up I have realized that once I have had the unfortunate episode of reations from having too much protein, Water has helped my body get back to balanced again. Many of the foods that children grow up loving, I have had the misfortune of never being able to eat. Now as an adult, I find myself not even having a taste to find out what those foods taste like. I never had a birthday party until I was six years old. This was because at the time I was not allowed to have ice cream cake. I never had ice cream. I once was given a chance to just take a little taste of it. I didn't like it. In fact, I hated it. Other foods that I don't even try to eat are a lot of meats such as, steak, all beef, and fish. The only meats I really eat are chicken, turkey, and some times pork. I remember once I picked up a turkey roast from the store and thought it might be safe for me. About six hours after I had eaten it, I had an episode. When I say episode, I mean my body starts to break down. I get very confused, I loose my balance, and the room starts to twirl. I can no longer concentrate on anything. If something like this happens, I stop moving and just completely start drinking water. I will not eat at all for the entire day. The only thing that I will do is drink water. By the end of the day, my body is back to being balance. Growing up managing my diet on my own, I have learned the best way I could really determine how my protein level is, is by focusing on a small object for about two minutes. If I can not control my eye movement, then I know that my protein level is getting high. I judge it by my eye movement and by calculating the protein grams that are on my plate for each meal in my head. I do it selfconsciously now that just by looking at the food I can tell if I could eat it. About two years ago, I found a website that people can go to update people on PKU. One of things that struck me as odd was the fact that same adults as my age have had problems with managing thier diets. Those that have came off of the diets have severly hurt themselves. Almost all of these adults have twitches. My life was a little different. I'm a military brat (child of a soldier). When I was discovered to have PKU, a team of doctors maintained my diet with my mother in complete control. When I turned 14,I asked my doctors if I could come off of the diet. I couldn't stand the pink formula. They told me that I could, but only if I promised to watch everything I ate. I have been watching everything I ate ever since then. I have never had a twitch, nor have I ever had any problems. I know how to handle PKU, without it handling me. I have grown up to be a man that I am very proud of. I have gone to College. I own my own house. I have full time job with the Government helping others who are mentally disable. I have certificates in Accounting and Computer Repair at the local Community College. I have also, self- published a poetry book. I am also, currently working on a Romance/Adventure Novel. I have also taken courses on Children Literature with a professional writer. Not bad for a 34 year old man with PKU.

-- posted by ericmaze

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» redback - Phenynlketonuria (PKU)

In response to Phenynlketonuria (PKU) posted by ericmaze:

I'm told there is something about water that is good for you. I find it hard to drink 600ml a day. But that will increase with approaching summer. Tis 35 degrees Celsius today.

"I know how to handle PKU, without it handling me."

That's the lesson, isn't it? It's not about your disability but your ability. Your post examples what one can do despite their problems. And YES you should feel proud of yourself. I don't know where there is any active website for PKU sufferers. My thinking is people should simply join in any discussion board like here where there is a range of topics...Education through to Travel etc.
Suite101 is pretty quiet, though.

There's now an article about PKU which maybe Jennifer can link to this discussion. Check here:
http://neurologicalillness.suite101.com/...

Maybe you should check it out and give her feedback based on your wealth of experience.

Cheers

-- posted by redback

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» martina25 - Phenynlketonuria (PKU)

In response to Phenynlketonuria (PKU) posted by ericmaze:

hello.i am Mirela from Italy.Martina is my baby girl having pku.i would like to "hear"more about this topic.she has now 14 months.tkank you.

-- posted by martina25

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» redback - best wishes Mirella & Martina

In response to Phenynlketonuria (PKU) posted by martina25:

There is a lot of information online. Here's some from a quality website:

http://www.nlm.nih.gov/medlineplus/pheny...

An extract:

"Babies who get on this special diet soon after they are born develop normally. Many have no symptoms of PKU. It is important that they stay on the diet for the rest of their lives."

Here is an online PKU Handbook from the Australian PKU Organisation:

http://www.hgsa.com.au/images/UserFiles/...

The handbook is 2.12MB so it may take a while to download.

-- posted by redback

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» Jennifer Gerics - Phenynlketonuria (PKU)

In response to Phenynlketonuria (PKU) posted by martina25:

Hi Mirela---

What more would you like to know about PKU?

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