I have PKU

BrettWithPKU

I have PKU, the hospital put me on the PKU diet when I was born, but my family took me off the diet around age 6. Doctors used to say that most of the essential brain development is complete by age 6, but I still see minor symptoms. Most of the symptoms don't stand out, and most people I know have never noticed anything wrong with me.

But - and this is what my concern is - my short-term memory is horrible. I have an abnormally hard time putting names to faces, and processing a string of thoughts (as would be required for public speaking) is very difficult. What worse is my family's history of alzheimer's: if my memory is bad now, and then I get alzheimer's, I'm screwed!
As of 2 weeks ago I have returned to the PKU diet in hopes that I can start thinking clearly. My diet used to consist of 500 mg PHE, and these days I don't track PHE, instead relying on protein itself (12g /day). As always, I am supplementing my protein with metabolic formula.
Obviously a lot of the damage is in the brain and is irreversible, but I'm doing what I can to improve my thinking and - above all - to make sure things don't get any worse. I don't think I need any kind of support to stay on diet, but I did want to join this group in case there's some sort of knowledge I can impart.

Feel free to friend me or message me regarding PKU.

geminigirl1979

Wow, congratulations getting back on diet! My son is 6 with PKU. He is currently only on 240mg PHE a day. We're getting ready to start a trial of KUVAN to see if we can increase his tolerance. Even on diet I've noticed his memory is not as good as his younger brother's and he seems to have way more anxiety. Don't know if it's PKU related, or just character differences. His levels have always been in range.

Good to meet you!

BrettWithPKU

About the only thing I didn't mention above is that medical coverage was a fight and a half. Missouri only requires insurance to cover formula up to age 6.
It's been a 2-year struggle, but I finally got approved for insurance, thanks to help from a rep at Applied Nutrition (maker of PhenylAde formula products).

It'll be just a bit longer before I am also starting the KUVAN trial. It worked for my 21-year-old sister, but she's only on KUVAN and not otherwise on a PKU diet at all.
I think she's doing it wrong but her blood levels seem to hover around 10 (the top extreme of what doctors consider "acceptable"), and that's apparently good enough for her.

The tools on MyFitnessPal make it extremely easy to log PKU diet records. The foods may not show PHE counts, but I approximate based on protein.

jessreedpr

Hey all - I have PKU too and I remember when I was growing up they always said "Ok you can go off diet when you're 6" then they'd push it back and push it back and finally it was just that I'm on it forever! I was on the diet all the way through college, and then due to an insurance issue I stopped drinking my formula, but maintained a basically vegetarian diet. While I did eat some vegetarian foods with protein (veggie burgers etc), I avoided meats, dairy, cheese etc. I've been lucky in that my symptoms have been minimal, despite my levels being a little high over the last years. I've now figured out insurance and am returning to formula and slowly returning to a PKU diet (which basically means eliminating the higher protein vegetarian foods). My husband and I are hoping to start trying to have a family next year sometime so I'm working hard to get my levels under control and get back to having the formula and food counting be second nature.

From what my dietician has said, a lot of people returning to diet feel so much better, have less of those memory problems, and sometimes just feel like a cloud or haze has lifted. I hope this happens for you as you return to diet! Congratulations!

BrettWithPKU

Yes. I admit I'm kind of off-and-on with the PKU diet, but when I am on it I feel fantastic.

Oddly enough: a pleasant side-effect I guess - I have the most success with weight loss when I'm on the PKU diet too. I drink Phenylade 60 - one of the lowest calorie formulas out there -, eat a ton of fruit and vegetables, workout almost every day.
Now, obviously working out isn't a part of the PKU regimen, but I just do it because I get the urge to.

MyFitnessPal doesn't track PHE - nor should it be expected to - but for someone like me who tries to eat a number of grams of protein a day (that way I can estimate a rough amount of PHE I'm consuming without always obsessing over it) there's really no better resource.
And if I'm going in for a PKU appointment, I can just print everything I've eaten right off the website.

715hopers

Hi all,
I'm excited to find this group on here! I have PKU also but have been on diet (sometimes loosely) almost my whole life. I'm trying to get strict about it, (want to have kids soon) and MyFitnessPal has been very helpful to keep track of my phe intake (plus I can turn my diaries into PDFs and my dietician loves that!). My diary is open to my friends so if anyone wants some accountability with their diet please add me!

AleshaAnders

congrats on getting back on diet, its a challenge i struggle with daily but i notice a huge difference in how i feel on diet versus off diet. i have been off diet since age 5 ( I'm almost 27) except for one year during my pregnancy since then i struggle to stay on diet. but i do notice my mind is clearer and i don't have AS MUCH OF memory loss, but still some of my symptoms are irreversible. Im trying to get back on preconception diet because i would like another child in the next year.

arkham_ma

Looks like there isn't a lot of activity here, but as I'm new to MFP, thought I'd post.

I was also diagnosed at birth, and in my case, taken off diet at age 3, but monitored to age 6. At the time, they thought I had hyperphe, hence the earlier age off diet. It turns out I actually have variant PKU, but I'm not sure they even knew that existed at the time.

Since learning about the life-long diet treatment protocol, in my late 20s, I've been back on diet, but my tracking hasn't always been ideal. I've been on Kuvan for a few years now, and my levels are usually under 6, though my latest was 6.5.

I've always had weight issues, and now I'm getting more serious about tracking both protein and calories, and have dropped about 8 lbs since early January.