Starting Over

Starting Over

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Starting Over

November 7, 2009 in Uncategorized

Im doing something i havnt done in almost 2 yrs... since i started Kuvan.. I am ordering Lo Pro Foods... Afrer I struggled the past 4 days.. i see how come i am so tired... This is my past four days of protien... I am allowed about 30ms a day... 29....38...19...42 I am very inconsistant... and i need to get back on track... The one thing i am going to have a problem with... This will not going to be good for my weight.. I am the heaviest i have ever been in my life.. 214 .. that still amazes me.. I have called a weight managment place.. and i am going to loose at least 30 lbs... but the Lo Pro food dosent help... I have started walking 3 miles a day.. we will see if that works... im sure i will spend today over $1500.00 on food.. thank goodness the other then the weather the only other good thing about Massachusetts is they allow PKU people $5000.00 a year on Lo Pro foods.... Massachusetts is know as the welfare state.. not a proud name i know... this is the hand we were delt... it could be worse...

8 Reviews of Starting Over

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Wow…that’s really nice that they give you that much $$ for lo protein foods. I have to pay for everything out of pocket. You will feel MUCH better eating with the low protein foods. It’s hard to get enough calories & feel full without it. There’s a lot you can do with the breads & pastas too which is mostly what I buy. Let me know if you want any recipe ideas.

  2. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Hey Sarah how are you doing? do you have a IM? Yahoo or AIM?

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I know you can get your levels back on track…. In addition to eating your lo-pro foods, add some veggies to it… Or eat a salad along with your meal…. I also enjoy making fruit smoothies – OJ, crushed ice, a banana, and whatever else fruit you like…. If you need some ideas or recipes, let me know – I know you can do it!

  4. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Also, make sure you let your nutritionist know about your dietary changes… I take Kuvan too and have been able to liberalize my diet… Since I have been able to eat more protein, I have been able to decrease the amount of formula… If you are eating low-pro foods, you are not getting the essential daily amounts of protein — and in that case need to drink more formula each day…. This is really important! When I was younger, I did not drink my formula and followed my low-pro diet… Not drinking my formula made me VERY, VERY sick. It is important when on Kuvan to stay in close contact with your doctors about any changes made…

    You may already know this….. but I wanted to mention it incase you did not know or anyone else reading this did not know :) Keep us posted!

  5. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Thanks Katie… yep i did know that about the not taking formula.. thats not an issue.. I ALWAYS take my formula.. no matter how nasty it is.. i never miss it.. My levels are always between 1-10 they never or rarely go higher then that.. when i went back on the diet they were 33… for the first 5 yrs of the diet they were for the most part between 15-25 then i got serious and for more then 6 yrs now they have been between 1-7 for the most part.. with a few exceptions of 10 or 12.. My levels are good.. but when they are going up i can feel it.. when they are dropping fast i can feel it .. shaky… if they are above 8 or so i can notice it.. and after 9 or 10 i get the headaches… dizzy.. and FOGGY as dana said…

  6. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Well, sounds like you are doing well now…. I definitely have felt the symptoms of headachse, dizzy, foggy, etc. It is no fun! I am confident you will be able to keep them down. Have they gone down so much lately because of the Kuvan? How long have you been on it? I have been taking it for 2 years now.

  7. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Iv been on the Kuvan for 18 Months… i was eating 12 gms a day now i can eat 30 gms a day…
    Today and yesterday.. my head is in the Fog.. i slept 9+ hrs last night and woke and felt like going back to sleep… my head is just not there today again… mustv been taht 45 gms day… ugg…well i added it up and i am averaging 29 gms a day for the last 6 days… last 3 days were 45…28…24… so im struggling to get this under control.. it was so much easier wheni was on 12 a day hahhaha…

  8. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    i agreeee! isn’t it easier when it is more restircted? i was on 30 grams (after being 3 grams my whole life) for about a year with the LNAA supplements… and it was so difficult. i didn’t have lo pro foods at that time either. let me tell you though the foods make it so much easier!!! and i’m from MA too… be THANKFUL for that coverage, a lot of people dont get a cent!!!! and dont worry about the foods, you will be able to find great things to eat with them, and you will feel much better- i am sure : ) so what did you order?

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