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November 3, 2009 in Uncategorized
Registered: Nov 3, 2009
Hunter said on November 5, 2009
Hi Chris! I’m Hunter, I am 23 years old and just recently back on diet full time : ) I was an “off/on-er” for a long time and cannot believe how great I feel now! I enjoy PKU.com, too! Happy I found it… how are you handling your diet right now?
Chris said on November 5, 2009
Hi Hunter… I was off diet for 25 yrs… and back on now for 10 yrs… it took me about 5 yrs to actually get the diet down.. but i do have it down now.. im in western mass.. where are you? i have had my levels down to 0.9 on my own… and now im on Kuvan and got it down to 0.9 again .. before Kuvan i was at 12 gms a day .. now i can eat about 30 gms a day… how much can you eat? and what do you take for formula? i take phenylaide 60.. its nasty but less calories…
Hi! Wow good for you, thats really encouraging to hear that you have done it! I’m not sure what the 0.9 is- I think mine are measured differently, I shoot for a goal of 2-6 mg/dL but haven’t been that low in literally more than 10 years. That is great that Kuvan is working for you! I am hoping to start a Kuvan trial soon once I get some steady levels back… the good thing is they keep going down so at least that is posiitive. I am on the diet I was on when I was little which is 10-12 exchanges a day (15 mg Phe/exchange… 4 exchanges in a gram…) so that is ~3 grams a day! It is tough and I HAVE to depend on all of the low pro products if I want my levels down, but I am waiting on a level now since staying around 10 and if I did ok I might be able to go up again. And, of course, if I respond to Kuvan I may be able to go up too! I take CaminoPro for formula… I personally think it tastes awesome- I hate hate hated my formula growing up, at one point they had to use a syringe thing to squirt it down my throat as they held me down! But this doesn’t have a bitter after taste and I honestly haven’t gotten sick of it yet! (a few months down the line!) How many calories in phenylaide? I also had to get a lower calorie formula… CaminoPro is 140 cal’s per pakage and I have 4 a day… so it isn’t that bad. Is Phenylaide pre made or do you mix it with water? What I love about Camino Pro is that it is pre made and I just bring my 3 packages with me and drink them throughout the day.
I am in Boston- I see you are watching the Celts! Ya! Haha… I’m not the most educated sports fan but am around my boyfriend and his friends enough to know a bit of whats going on : ) What clinic do you go to? Is it in Boston? I am still at Children’s… I love my Dietitian there and have no problem staying with her forever hahaha….
Great hearing from you!
Yes they want my levels between 2-6 my last level was 7.2 or something like that… that means i had it UNDER 1 and that was really low.. 0.9 too low… OH WOW 3 gms? i dont mean to ask this Question.. and be intrusive.. but how much do you weigh? becasue they base it on weight too… Thats is INSANELY HARD!If you need any ideas.. let me know cuase i have tons.. and Yes i goto Bostons Childrens.. Im in western mass out towards Springfield… I see Fran Rohr and Dr Levy… dont knwo id you know them… I used to take camino pro.. it is very good.. just 140X4 which i took also.. over 600 calories a day… so now the phynalaide isabout 285 calories a day.. big diff… and i know the owner of cambrooke very well too.. and i told her i didnt want to switch becasue my new one tastes like vomit.. lol but i did… to save caories… she understood… they are working on a Camino pro Lite.. low cal… yep.. i talked to Lynn on the phone.. cant wait… Yes i am a Die Hard Celtics Fan.. and they won by 2 tonight.. personally i like it when they win by 35 like last game… alot less pressure for me hahaha… so you live in Boston? or school there? I dont like the city.. im a country guy i guess.. Not like suspenders and 3 teeth or anything lol just less congested .. and less noise.. give me the birds chirpping with a coffee outside any time hahaha.. it is an easy drive to the childrens hopspital tho… so its not too bad.. i like the drive i can get away for a day hahaha.. do you have AIM or YAHOO IM? my screen name is WesternMassDJ on both.. i would like to get several people together in the chat on here… this site has made huge improvments… very Face Book like… im on there also i just cant imagine what you eat with 3 gms… have you tried to eat like 10 a day and see what your levels are like? if not i would try and see what happens… whos your Dr there?
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