PHE Levels

PHE Levels

Avatar of Stacy

PHE Levels

October 26, 2009 in Uncategorized

I just got my husband's latest PHE test today. He was recently thrown back into the PKU world. Until two months ago I had no idea what it was. I knew that he was born with the "inability to eat protein" but that was all I knew. When he was younger the Dr. told his mother that when his brain stopped growing he could start a normal diet. He made the transition around age 8 and has been eating regularly ever since. In the past few years he's developed frequent migraines, twitches, depression, and moodiness. That's just not like him so he decided to ask his DR if this new behavior could be related to his PKU. To make a long story short, we were then told that he should have stayed on the PKU diet and we've been working really hard this past month to do what we can. We have an appointment with a specialist on February 23rd but our family Dr. is doing a wonderful job trying to get us through it until then. Without any medicine and just altering vegetarian meals, his levels went from 1197 to 650. So for us not having any help other than the wonderful people on www.pku.com and random internet stuff, I think he's done remarkably well. He has times where he still "cheats" and then he feels miserable the next day. It's amazing the difference a little protein will do. He also cheats on occasion because we still don't have his formula. I've read that it is very dangerous to cut out protein without the formula because he still needs protein, just PHE free. So for now I throw him a bone and give him some cheese and sour cream. Now the hard part is trying to cut the 650 in half. I'm sure once he gets his formula he won't be as "hungry" as he is now. He's continually eating to try and fill up because the things he eats now have a whole lot less calories. We're also waiting to get KUVAN so hopefully that will come soon as well. We do have the PKU cookbook but I don't have a lot of the special ingredients and they are too expensive for us to be able to get them. I'm hoping to be able to get some of the basic ones like egg replacement soon. I also need to get the PKU Food List book. Hopefully I'll be able to get some more stuff stocked up and be able to try some more basic PKU recipes.

10 Reviews of PHE Levels

  1. Registered: Oct 26, 2009

    Posts: 0

    , Arkansas

    Hey there. I am Stacy..28 years old..i am in the same boat as your hubby. I am pku..was put on diet when i was born and told i could go off at 7 years old..so i did..I can totally relate to how hard it is and how its just amazing what it does to you when you are not on diet..the mood swings, depression and so much more..I was also just recently told to go back on my diet. I am PKU and HAVE 2 KIDS!!! Crazy huh..two beautiful healthy baby boys..well not so much babies now..they are 4 and 2. Well, i just wanted to tell you that you story really inspires me to go back on diet. I knwo i need to but its sooo hard…especially afterh having all the good stuff for over 20 years. PKU is not something that is easily explained..right now…i guess you could say my ex split withme b/c he thinks i am full of it..lol..but..well, i get a bit moody on him and hten say sorry but he is like yeah yeah you are always sorry. I never told him of my pku..im scared it will scare him off. And if you need any good pku recipes i have plenty if you want some. Plus i tend to fabricate the truth..not big stuff just small stuff like i told him i wrote a poem i didnt and im sooo emotional with him…i think its cause i am scared to lose him and i have been so screwed over its not even funny…but i thnk he needs to know about my pku.What do you think

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hey… First, I must say your husband is SO lucky to have you and fully support him and his diet. It can be tough to get into the routine of going back on diet, but with your support – it will be much easier for him! You are right about the formula.. If you don’t take that and elimiated high-pro foods, your body does not get any protein at all which can be devestating.. HINT HINT – it happened to me! I am back on track now with everything and I also too take Kuvan. I have been on it for 2 years. If you ever have any questions, please do not hesitate to message me! Best of luck. And your clinic will be helpful to both you and your husband.

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Wow, first of all congrats! Your husband is obviously doing a great job. Not many people would be able to cut their phe level in half like he has. You also sound amazingly supportive. He is lucky to have you. Have you guys considered getting low protein foods? Since your husband has gone off diet a huge variety of low protein foods has come out, and it might be worth it to give the foods a try. The worst that can happen is that you will find out he does not like the low protein foods. Give me a message if you need help locating companies that sell the foods. Good luck with Kuvan. You will have to let us know if Kuvan works for your husband.

  4. Registered: Sep 10, 2009

    Posts: 0

    , Georgia

    Hey guys! Thanks for all the comments! It really makes me feel good to know that we’re making progress with this and there are people out there that can help push us in the right direction.
    I know you say that I’m super supportive but I have had medical issues throughout most of our relationship so my husband has definitely earned some help from me. I wish he didn’t have to go through this but at the same time I’m glad I can give back to him like he has given to me. I really hope we get the formula and medicine soon and I’ll make sure to keep a regular blog on how he is coping with it all.
    I do want to try some of the low proteins food but I don’t think he is very interested in it. I think since he has had regular pasta, etc., he’s pretty sure he won’t like the low protein versions. However I did find a recipe for zucchini past and it turned out really well. you just take a veggie peeler and make thin slices of zucchini, cook it for a few minutes and eat it like pasta with sauce. I would love recipe ideas if you’ve got them. I think that zucchini is out of season now because I’ve had the hardest time finding decent zucchini lately. Anyway, any recipes would be great! Thanks again everyone :)

  5. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi again.. that sounds awesome! I will have to try it. Sometimes I also throw the zucchini (or any veggie) into my low-pro sauce. I actually don’t taste much a difference from the two. There are so many different things out there that you can find other delicious recipes… Cook for Love and Cambrooke Foods are websites that both have great recipes! In the meantime, keep experimenting!

    And… there is a reason you and your husband met and ended up together. You both were able to provide the support each one of you need. Can’t wait to hear about the great progress he will make once he gets things on track with his diet :)

  6. Registered: Jun 27, 2009

    Posts: 0

    , New York

    While you are waiting for the formula, consider adding some fiber supplements to some of the food (Benefiber). It is fiber and protein that fills you up. Also, check out my website http://www.cookforlove.org for some great low protein recipes.
    Good luck!
    Brenda

  7. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Great that you’re so supportive & involved. I can tell you that’s a huge help. I’ve been halfway on diet for years. Recently my boyfriend attended a PKU educational meeting with me. I had never fully explained the diet to him, and going to that with me was a real eye opener. He’s been very supportive of me eating well, and since I’ve cut out everything I shouldn’t have, he’s noticed major differences in my moods. We work together now to eat more creatively at home rather than going out so much. For me, the support is such a huge step in going back on the diet. Stay encouraged! With the low protein foods & formula your husband will probably feel so much better too.

  8. Registered: Sep 10, 2009

    Posts: 0

    , Georgia

    Thanks everyone for all of the advice :) I’m going to post another blog with updates tonight.

  9. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Hey – I know this is delayed, but congrats! It must be a huge undertaking to go through… I was kind of off diet but only for about a year and coming back was very tough for me… so I respect what you both are going through. Having important people in my life support me was the most important thing so it is GREAT that you are so involved and willing to help! Where are you from? Are there any options for insurance coverage for low protein foods? They will help tremendously! There are so many options out there, hopefully you can find some financial support because without it, it does get expensive! Please keep updating, and feel free to ask any questions! Good luck, I know he will do great!

  10. Registered: Oct 9, 2010

    Posts: 0

    BELLEVILLE, Ontario

    ME AND MY WIFE HAVE TWO ADULT MALE BORN WITH PKU AND ONE WAS TREATED TILL AGE 12 ON THE DIET. THE OLDEST WAS DETECTED TWO LATE AND SUFFERED BRAIN DAMAGE. MY WIFE WROTE PKU MOM AND A DIET BOOK ON PKU EFFECTS ON OF PKU ON HER LIFE AND IS VERY INVOLVED IN INFORMING THOSE WITH THIS DISORDER. OUR SON ( THE OLDEST ) IS IN A GROUP HOME AND THE MONITOR OF HIS BLOOD, DIET AND NEEDS ARE VERY EXPENSIVE. THIS TREATMENT THAT IS PAID BY THE GOVERMENT IS ALWAYS FIRST APPROVED BY US. WE KNOW THE FOOD PRODUCERS AND THE LATEST INFO AVAILABLE AND ARE KEPT UP TO DATE. OUR YOUNGER SON THAT WAS TREATED AND TAKEN OFF THE DIET, AS ADVISED BY THE MEDICAL PROFESSION, EATS ANTHING HE DESIRES AND TO AGE 45 IS HEALTHY. BOTH OF OUR SONS ARE STUDIES IN LONG TERM EFFECTS AND HAVE BEEN HELPFUL IN OFFERING INSIGHT TO THE MEDICAL FIELD.

    I AND MY WIFE ARE CONCERNED AS TO YOU LOVE ONE NOT BEING ON THE FORMULA AND TREATING THIS DISORDER WITH LIMITED KNOWLEDGE. YOU CAM/MAY TELL YOUR BROTHERS LEVEL ARE HIGH BY OBSERVING HIS HAIR COLOR….BLONDE TO MUCK PHE – BLACK – LOW LEVEL. HOWEVER, THIS IS ONLY BASIC AND HE NEED A DIET DONE BY SOME ONE IN A MEDICAL CENTRE THAT KNOWS ABOUT PKU AND FOOD ALLOWANCES TO CONTROL LEVELS. REMEMBER, PKU TO MOST DOCTORS IS VERY LIMITED IN UNDERSTANDING.

    AS BEFORE, ME AND MY WIFE AND KIDS HAD BEEN DEALING WITH PKU FOR ALMOST 48 YEARS. IF YOU HAVE A QUESTION JUST DROP US AN EMAIL. WE OFFER THIS SERVICE AT NO COSTS TO ANY PERSON DEALING WITH PKU……….

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