PKU.com Community Discussion Forum New to PKU.com Hello, Returning to diet

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #6792
    Avatar of Rowe
    mrmonkey1980
    Member

    Hi everybody, I came across this site when the thought came to me, during one of my anxious periods, to look up PKU and anxiety disorders. (sorry if this posts lots I keep pressing enter to start a new paragraph and it keeps loading something) Anyway, I’m a moderate PKUer and I stopped follwing the diet when I was 16 (not that I was that strict anyway) and at 21 I developed a serious anxiety problem. I’ve dealt with that as I am largely in control now (after a hell period) but I only recently discovered that it might have happened because I went off the diet. Though my Dad had anxiety issues too and now my sis does so i guess thats in the family. Anyway, I’m now 27 and kinda paranoid that if I don’t go back on the diet I might develop more problems. Problem with that is I am very overwhelmed by all the things required and would appreciate some support and advice. ie Should I cut things out all at once or change my diet step by step? Anyway, I look forward to meeting you all and having some interesting discussions.

    #6793
    Avatar of Breanna
    BreaMarie91
    Member

    Hey, first have you gone to see a medical geneticist, dietitian or whatever other kind of doctor you saw for PKU as a child? I would think that pulling out one food at a time would be easier. Ex: stop eating meat and once your okay with that then stop eating dairy or whatever. But who knows you may have a doctor who suggests otherwise. nBre 16 CPKU

    #6795
    Avatar of Debbie
    Debbie
    Member

    Hi
    Brea is right try and cut out meat, animal products including dairy and the higher phe foods gradually. Look up the PKU clinic who can help advise you what is best, plus give you information about doing blood tests, PKU support groups etc. nAnxiety seems to be in our family as well with my father and sisters mainly. I am fine when I keep to my diet but if I eat higher phe foods it is amazing the change in my anxiety levels. nGood Luck and keep us updated on your progress.

    #6798
    Avatar of Meaghan
    mayrogers13
    Member

    I completely and totally agree with what has already been posted. Trying to cut everything out at once will make you feel overwhelmed and make you want to give up. If you could, try and cut out the highest foods first such as steak, it might be easier. Also, give yourself a realistic time line as to when you want to accomplish different aspects of getting back on your diet.

    #6811
    Avatar of Rowe
    mrmonkey1980
    Member

    Thanks for the replies. I think it is best to cut things out gradually too. I never ate a lot of meat anyway as PKU gave me an aversion to the stuff that I had barely overcome. But it is starting to occur to me how often I might have little bits. And dairy will be a shame as I really developed a liking for cheese! Anyway, I’m trying to get in touch with the doctor I saw about my PKU. Hopefully I will be able to arrange a meeting to discuss this. As for my anxiety. It’s better now – last night was my first night in a week where I didn’t start worrying about every little thing – but as always it’s a long battle. I’ll post again when I have news.

    #6816
    Avatar of
    Anonymous

    hey i saw ur post and had to answer, i to have anxiety and only within in the last 2 yrs and i am 21 now, ironicly its only beeen the last 2.5 years that i have been fully inconrtol of my diet and had resnable levels. i never had anxiety before when my levels were adbnormally high so i know it wasent from then.. just curoious but what has helped ur anxiety? other than levels ? also my advice for getting back on track is dont overwelm urslef and set to many goals. for me getting back on track was cooking, backing and experimenting with foods, keeping a jorunal for myslef that was vey honest so i could physically see what i was doing, also regular blood tests and keeping in touch with my medical staff! nif ud like to caht sometime or have any questions feel free to msg me for my email or wesite addy!

    #6826
    Avatar of Rowe
    mrmonkey1980
    Member

    Hi, thanks for replying. it’s good to see someone with a similar situation here. To be honest, I don’t know if my PKU has any connection to my anxiety at all. I have only read that PK adults can be more susceptable to anxiety disorders, which of course makes me anxious. I have developed many ways of coping with anxiety but have still to reach an ideal level. As long as I have suffered with anxiety I haven’t been monitoring my Phe levels so it would be nice to see if there is a link. I think once I have contacted a PKU consultant I can make a plan about what I want to do, and yes, I would be interested in chatting. At the very least I would like to learn some new recipes from all of this! I get bored of eating the same things now, when I’m off the diet.

    #6831
    Avatar of MICHELLE
    scentofattr_
    Member

    Well there is no need for me to intervine with such outstanding advise not only for monkey but for me as well. I’m 27 and I just recently had a suprise pregnacy on birth control that ended up in a termination being that I’ve been off my diet for a sum around 15 yrs or take. It was the hardest and sadest thing that I have ever done being that it was my very first pegnacy. Now I’m back on my diet and was trying to force myself going cold turkey from all consumptions of my favorite foods. Now I ate meat but chicken was my main source of choice and I love my chicken. I havent had it since the day I found out that I was prego. Now that I’m not I want to so bad to eat it but just that episode that I had to go through was a wake up call. My partner and I would like to have a child, and face it I not getting any younger. I sought out this site for some support with others who have went through the same thing or already have children and what got them through each day. Of course all advise are welcomed.

    #6833
    Avatar of
    Anonymous

    Mr monkey, i would love to share some recpies with u , i have so many and i even have my own pku website were i post new pku news, repiecs my pku journal . u can check it out at http://pku.bravehost.com ni would also love to know what ur results are when u do a level and if u find any conncetion with ur anxiety .i actualyl had 3 panic attakes yesterday alone just cause i had to go out on a bus to my doctors , i left my house at 9:30 and didnt get home till 2 . i hate busses and getting stranded and i hate being alone too. i rarley ever go anywere besided work and my gym alone cause if i panice i want to leave rigth away and if im watign for a bus i cant, but if my boyfriedn cole is with me he has a truck and we can just go!

    #6834
    Avatar of
    Anonymous

    sent of attraction , i just wantd to say that u are a stong person and i can imajin how u feel for that is my reoccurign nightmare, i nearly had that scare myself and its a wake up call one of the resons why i have never officaly gone of my diet or why i pulled myself back from extreame highlevels and an unhealthy lifestye 2 yrs ago so that would not happen and cause i desperatly want children one day. ni wish u all the best and good health for ur journey ahead , feel free to contact me if u want to chat.

    #6955
    Avatar of Rowe
    mrmonkey1980
    Member

    Hi again, well I finally managed to get my hands on some formula, so I’m getting used to that again. The next step is to get in touch with a PKU consultant. I was going to ask my Doctor when I went to sort out the prescription (which I had to hassle my new and old surgery for! And then wait over a week for the pharmacy to get it!) but he didn’t really seem to know anything at all – I always seem to get the juniors. So now I don’t know whether to try again with the doctors or contact the hospital where I used to go to see the PKU guy. I’m not usre who to contact though. I think I have a name but Im not entirely sure it wasn’t just the name of one of my university lecturers! I guess, I’ll just have to find out.

    #6957
    Avatar of Breanna
    BreaMarie91
    Member

    I’d suggest contacting the hospital that you used to go for PKU appointments. More then 90% of the time everyday doctors don’t know much about PKU no matter how new or old they are to the practice. If they don’t have a degree in genetics, they probably know very limited about PKU. nBre

    #7143
    Avatar of
    Anonymous

    loulou84
    I tried to add you as a friend – but neither of us have profiles yet so I can’t. Please get in touch with me – I think I can help you. Im planning to get pregnant soon too. I would love to share the whole thing with someone else who understands. I have a little boy already ,and thank god, he is ok. But I found out very early on.
    Ive had very good support from my hospital. If you don’t mind me asking – what kind of problems do you children have? and what hospital did you have your pregnacy care from?
    I hope to hear from you soon. lou

    #7149
    Avatar of Sarah
    oldkpugirl
    Member

    Hi, I am new at this. But I am 40 with PKU. I have just recently started the diet. (11/07) and I have been off for 34 years. I am struggling too. I also had a short bout with anxiety. I was teaching my kindergarten class and I had a very bad anxiety attack during an observation. Yikes!!! But I found it in me to finish and was fine. I was put on sertraline and came out of it. But when I went back on diet I found that I could get off of sertraline completely! I am more calm and don’t have the anxiety anymore. When I went back on diet I went cold turkey. I knew what I had to do and just did it! I also was in contact with my nearest PKU Clinic to guide me. I take my levels every week to kind of lead the way as to how much phe I can have. I know how hard it is to get back on diet. So if you need to discuss this let me know.

    #7152
    Avatar of Desiree
    babiedolldee
    Member

    Hello to everyone who might actually read this, but i’m a mother of 3 wonderful children and i was born with PKU and I’m 29 years old. I maintained my own diet since i was 6 years old, and when i hit 18 i went off the diet, but went back on in the times i was pregnant, i currently live in TN and things for us PKU people are not state funded like they are in NJ which is where i’m originally from, and maintained my diet most of my life, so it wasn’t that hard for me to do, but Now that i’m 29 and been off my diet for 11 years and knock on wood, i don’t have any severe problems to speak of, just some mild ones so far, hopefully fixable ones, and that is why i want to go back on the diet cause they are noticable changes to myself may not be to other people, but they are to me. I’m having a really hard time with getting back to start. My entire childhood i was one on specific formula, and all this low phe foods they have now, they didn’t have when i was growing up. I’m kinda old hat at this stuff, They didn’t have flavored anything when i was growing up, and bread was a once a year thing that we got, and things like that, so this is a lot of changes for me, not to mention the new formula. That right there is a trip for me, cause i used to have to make my formula in the morning before i went to school and i would have to take a thermos of formula with me to school and by time i had lunch everyday that would smell like someone died at the lunch table, but i would drink it because i knew that i had too. When i got home from school every week i would have to do a bloodtest, and i would stick myself with the lancets and get the blood to go into a tube that i could probably fill twice in one sitting. These testing dot papers make me laugh because that is so not what i used to have to use. It’s amazing at all the changes. Right now I’m on a new formula that you shake in a cup, instead of making in a blender with 5 cups of water. It really doesn’t seem like enough, how i’m supposed to drink four sacks of formula that i shake in this cup, and have to drink that in one day, from what i used to drink, and had 24 hours to drink it in. Things are so much simplier now but still the same they aren’t for someone like me. I’m used to the old school stuff. I don’t even want to get into the things i went thru at school cause it would probably make some of you cry. well that is the start for me….comment back if you want, and have a nice day

Viewing 15 posts - 1 through 15 (of 18 total)
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