PKU.com Community Discussion Forum New to PKU.com New To the Site and need help!

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #9135
    Avatar of Beth
    cutiepie1589
    Member

    Hi there! My name is Beth. I am 21 years old and I need some advice on how to deal with my PKU. I also have a question. I have noticed that I can't remember things as well as I used to. My boyfriend and I started dating over 2 years ago and I can remember barely anything about that time and it scares me to death. I don't know if it's because I'm not following my diet exact or if it's something else. Any help or advice to help me would be much appreciated. I am new to the site so friends would be great. I don't know anyone else with PKU.

    #9138
    Avatar of Nicole
    Nicole1982
    Member

    Hi Beth x

    Am 28 years old and i have PKU and am trying to deal with coping with my PKU with 2 younger children.

    Your memory loss is defo a symptom with you not following your PKU Diet, i really advise you to get back on ur diet as its only going to get worse chick x

    Memory loss was one my symptoms but it was mostly like forgetful like appointments etc or sitting something down somewhere and forgetting where i put it.  Get on the diet and you;ll see a change x

    Hope this helps x

    Nicole x

    #9139
    Avatar of Beth
    cutiepie1589
    Member

    Thanks Nicole,

    It's just so hard I have a pretty severe case I think. I can only have10 g of protein a day so it's hard to stick to my diet. And The formula I have is disgusting. I've tried others but nothing seems to be much better. Any other suggestions of how to deal would be great.

    #9140
    Avatar of Sarah
    sarahl
    Participant

    Hi Beth,

      Call Cambrooke and ask for a sample of Bettermilk. It's really good & doesn't taste at ALL like a formula. If you add a tablespoon or two of OJ it tastes just like a smoothie.

    I know it's tough to stay on diet, I can only have 5 gms of protein a day. Make sure you get some lo pro foods too. It will make life much easier.

    #9141
    Avatar of Beth
    cutiepie1589
    Member

    Thanks a lot Sarah I'll try that. I used to order the low pro pastas and stuff from cambrooke foods but I can't afford it and I don't think my insurance will cover it. But I'll look into that bettermilk, thanks!!

    #9142
    Avatar of Nicole
    Nicole1982
    Member

    Hi Beth.

    Am from Scotland in UK, and the formula i drink is called PKU Cooler, there really good, they are supplied in a sports pouch which is handy to take to work or days out etc, You get them in a few flavours like Orange or tropical etc but my fav is Blackcurrant and i throw them in the fridge to keep them cool and there really easy to drink and i take 3 a day mostly after each meal x  i dont know if you have heard about PKU Coolers but there really good!!

    I am only allowed 6g of protein so i totally know how you feel about coping, specially with having to younger children.

    Hope you find something you can adjust to chick x takes awhile but it worth the wait, you'll feel a totally different person x

    Nicole x

    #9143
    Avatar of Sarah
    sarahl
    Participant

    Hi Beth,

      You should look into getting your insurance to cover foods. I didn't think they would either, but it turns out that they do. I  had to get a prescription for the Bettermilk & then a letter of medical necessity from the doctor at my clinic. It helps a lot! Check into it.

    #9144
    Avatar of Beth
    cutiepie1589
    Member

    Nicole,

    So you have 2 children? Did you have them yourself? And how did your PKU affect the pregnancy?

    #9145
    Avatar of Beth
    cutiepie1589
    Member

    Sarah,

    I am looking into getting my insurance to cover it, it would be so much easier to get on diet if I had those available to me! Thanks for all the advice!

    #9148
    Avatar of Keith
    Uncleteef
    Member

    Hi Beth.

    I am 27 about to turn 28 this month and i have been on and off the diet for some time now. I was off the diet since i was 12 maybe even younger then that. I do not know the protien intake that i am allowed but with the formula that i take i hardly eat as it is. I have no idea why but i can go awhile without eating and have no problem.

    When i was a kid i would go days without really not eating much now i cant really go without eating at least once a day without the formula that i drink. The formula that i drink is Phenylade40 which i think is pretty good because it tastes like the stuff i used to drink as a kid.

    As for the coolers that Nicole talked about i have tried those and honestly i can say i wasnt a fan of those. I gagged on the orange flavor while the grape flavor that i also tried wasnt any better but i didnt gag.

    As for low protien food i have tried it and the only thing that really sounds good to me is really the pasta. Of course i went to school for cooking so i know how to create many dishes out of pasta but i havent ate that food in a long time. As fpr the insurance covering it the place that i live at the state covers it all so long as you go to the doctor. Like i have to see the doctor at least once a year to get the formula or else i will not recieve it and the fact that i dont have insurance makes it even tougher.

    #9154
    Avatar of Nicole
    Nicole1982
    Member

    Hi Beth…

    Yes ave to got two girls, Brooke whos coming 7 And Kerris whos coming 2,  I had a rough time with both my pregnancies as i suffered with severe morning Sickness and Deyhdration which was making my levels extremely high and extremely dangerous for babies and was hospitalized twice with both pregnancies because of my PKU, but everyone is different some people sail through there pregnancies with PKU i was just unlucky! and there both very Healthy very Smart and dont Have PKU so it was worth it in the end, and we're even thinking about trying for a third lol Mad i know x

    Orange PKU Cooler 20 make me sick too cant stand the smell or taste, but the Blackcurrant is good, better than PKU express formula i used to take x

    I hope your all well x

    #9158
    Avatar of Beth
    cutiepie1589
    Member

    I was just currious about the pregnancies because my dietician told me that women with PKU have almost no chance of having a normal healthy baby. How severe is your PKU? Do your kids have any handicaps or are they what the doctor described as normal?

    #9159
    Avatar of Breanna
    BreaMarie91
    Member

    Beth I'm a little surprised your dietitian told you that you wouldn't be able to have healthy children. Women with PKU can have 100% perfect babies as long as they monitor their diet closely throughout their pregnancy. I definitely suggest you go to this link: patientpower.info/series/living-well-with-pku-2010-series and listen to the program titled PKU & Pregnancy: Lower the Risks & Having a Healthy Baby. This program features a woman who has PKU and also has six healthy children. It's definitely an inspiring story and proof that having children is very possible for PKU women with a little bit of effort.

    Hope this helps,

    Breanna 19 CPKU

    #9160
    Avatar of Nicole
    Nicole1982
    Member

    Hi Beth,

    I am totally shocked your dietician said that too :-(

    Both my girls are very healthy, Brooke who's 7 is very bright and very clever and very well behaved with good manners, she does Dancing Lessons twice a week and is a star pupil in her class, she enjoys her Guitar Lessons and Karate.  Although my levels were extremely High in the first 5 months of my pregnancy it is a blessing to have such a great little girl full of life as i was expecting the worse.

    Kerris is just 2 but shes so smart for her age, she picked up walking and talking very fast for her age, and shes a funny little character.

    My consultant keeps an eye on my girlz cause he's expecting behavioural problems or something, Brooke had her Final Examination when she was 5 years old and they said she is a very bright 5 year old who is growing and learning and behaving like a normal 5 year old, so i was delighted. Kerris she still getting examined every year till shes 5 but i have no worries or problems.

    Both my girls are very healthy, but there both a blessing !!!

    Babies born from mothers with PKU can be born as healthy as normal babies x

    #9168
    Avatar of Becky
    beckyboo
    Participant

    OMG Nicole, you have made me feel SOOO much better!! I know that everyone is different & my story may not be the same as yours, but I am very early in my pregancy and my levels are higher than they should be. My dietician thinks its because I am not getting enough calories. But when you are on 2 exchanges it is really hard to get in too many calories!! 

    As for Cutiepie, I would agree that it could be the diet making you forgetful!

    I was off diet before starting my preconception diet! And I tell you it was like a blanket of fog in my brain that since being back on diet has just lifted!

    I feel better in myself, I don't find everything so complicated and I just have a better attitude to life generally! 

    I would advise to ANYONE to go back on diet. It IS so difficult, but personally for me its worth it.. eating what you like is NOT worth all the headache that comes with it!!

    Hope everyone is well!  x x x x

Viewing 15 posts - 1 through 15 (of 19 total)
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