PKU.com Community Discussion Forum New to PKU.com Anybody home?

Viewing 15 posts - 1 through 15 (of 28 total)
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  • #4327
    Avatar of
    Anonymous

    Well, looks like I am the FIRST visitor to PKU.com. What an achievement. I was hoping to talk to 40+ PKU members and share some of my experiences working with the disease. Talk to you soon.

    #4330
    Avatar of Tamara
    tamara
    Member

    Hi,
    Looks like I am the second person to join. My 2 year old daughter has hyperphe and is functioning normally on a regular diet. I do have her blood levels monitored. Does anyone else have this story?

    #4333
    Avatar of Bethany
    sjimnbeth
    Member

    Hi – My son is nine weeks old, and has PKU. I’ve not been able to find a lot of info on babies and PKU. I know what it is and how he got it, and I know it has to be a low phe diet, but I’d love to hear how some parents with babies are doing things. I’m nursing, not yet on the formula, but will probably start him very soon. Just waiting on the latest result – probably tomorrow. How do things go once the babies are started on solid foods? I did it with two kids without PKU, and I’m not sure how things will go with my new little one.
    I appreciate all feedback. Thanks in advance!
    talk to you soon!!

    #4334
    Avatar of Rebecca
    rjharr
    Member

    You ajust with the solid foods. our 3 year old is a very picky eater,so it can be challenging sometimes. what was your childs level when you found out he had PKU. I was breastfeeding until we got the phone call that she had pku, and got her level back. we started her imediatley on the formula because her level was so high. write when you can.
    Rebecca
    http://www.ShoppeAccents.com

    #4335
    Avatar of carrie
    carrie
    Member

    sooo HI i guess!mim turning 18 on august 19th and i was wanting to talk to maybe some people my age or possibly older about having PKU while your growing older..things like how important is it still that you maintain your diet and things like that…if anyone can help me please contact me!

    #4340
    Avatar of Anne
    achristi
    Member

    Carrie, nHi, my name is Anne. I’m 29 years old and have PKU. I’ve been married 3 years. I know I’m a little older than you but if you have any questions I could maybe help you with, feel free to ask. It is super important to stay on the diet especially as a female. Right now I’m trying to get my levels low enough to maybe have a baby and it would have been a lot harder had I been off diet. I would love to hear from you or anyone. nAnne

    #4348
    Avatar of carrie
    carrie
    Member

    HI ANNE! first off i want to say good luck with your baby! i have always worried about the future in having kids b/c my mother has told me so many things that could go wrong. i was wondering, i havnt been to have my blood taken in years should i still be doing that and also do i still have the need to drink my formula?
    look forward to hearing 4rom you n~*CARRIE*~

    #4355
    Avatar of Anne
    achristi
    Member

    Carrie,
    If your formula is anything like mine it doesn’t taste the best but you get used to it. For that reason alone I would never go off it because it would be too hard to start drinking it again when you want to have kids. I’m no doctor but everything I’ve heard is to stay on formula and diet for general good health. I didn’t have my blood levels checked for years and when I finally did again they were fine but not good enough to have a baby yet. I never went off the formula or diet though. So my levels have always been about the same. It’s great to hear from you. nAnne

    #4356
    Avatar of carrie
    carrie
    Member

    ANNE…already you have been so much help to me! i havnt really kept up on my diet and havnt been drinkink my formula lately and this is y i have so many questions about it b/c if it will harm me i need to change b4 it is too late. i want to go get my blood levels taken because i dont think my mom even knows how much protein i should be having at this point its been so long since ive seen the doctor about it. im just nervous to get yelled at for i guess “cheating” on my diet. does anyone know how long it takes to get blood levels back to normal?
    thanks 4 the help n~*CARRIE*~

    #4358
    Avatar of Bethany
    sjimnbeth
    Member

    We’re still waiting for the latest result – hopefully today. I still have a lot to learn about all this stuff. I guess it’s possible he doesn’t have the PKU, but maybe just hyperphe? I think it will be a while before we know for sure, but I’m trying to learn as much as I can. When we went to the specialist for the first time, he was 4.3, then went to 4.8. He had been staying around that number, but I’ve seen that the more Similac formula he has, the higher his number is going. His last reading we have was 5.3, but again, waiting for today’s number. I have a can of the special formula to start him on it as soon as I need to. Just hate the waiting, and the blood draws. I do know that it’s not the classical PKU (I think) or his numbers would have been much higher at first. Just waiting to find out what to do next. Talk to you soon,

    #4360
    Avatar of Tamara
    tamara
    Member

    I am also waiting for results for my 2 year old daughter’s blood work from Tuesday. Julianna has never been higher than 4.3. Hopefully she will remain in this area. For the first 2 years of her life, I had such trama going through with the blood draws. Two hospitals and one clinic all had horrible attempts to find her veins and draw enough blood from her heel. I changed doctors because of it and now we see Dr. Bartley at the University of Irvine in California. He draws the blood himself right in the office. He is incredible at what he does! My daughter did not even flinch or cry this time and last. Dr. Bartley makes it painless. The blood draw weas half the battle for us.
    Have a good day and hope for good results!
    Tamara

    #4361
    Avatar of Lisa
    lkhalushka
    Member

    Hi,
    I’m the mom of a 6 week old PKU infant, and I’d love to talk to other moms who are going through the same thing!

    #4370
    Avatar of Missy
    MissyB2275
    Participant

    Hello everyone. I am new to PKU.com. I was browsing the web and stumbled upon this site. My name is Missy and I am 31 yrs old and have classical PKU. I have never been off of diet. For that I am lucky as I hear from others how hard it is to get back on the diet again to prepare for pregnancy or just to feel better.
    My husband and I are currently working on starting a family. I’ve had my levels in range for some time. My levels did go pretty high after I miscarried in 2003 and then the beginning of 2004 I was diagnosed with endometriosis. So for awhile there my levels were all over the place and because of the endo and the hormonal problems I was having and the meds they had me on I gained a bit of weight. I switched to a lower calorie formula and that is helping. It also helped in lowering my phe levels cuz after a week and a half of just starting the new formula my levels went down to a 5. I kept them there for awhile and then walla the beginning of this year I started having problems with my endo again and had another surgery. Finally my levels are getting back to normal. They raised all the way to 18 with all the problems with the endo I was having. Last month my levels dropped to an 11 so they are getting back to normal.
    My husband and I are seeing a fertility specialist as that is the only way we will be able to get pregnant cuz of my endo and right now they are stablizing my hormone’s while I’m getting my levels back in range. Hopefully next week when I get them taken again they will be back where they need to be as my fertility specialist said that if all the tests next week are good then next month we can start on clomid. I’m getting older so I don’t want to waste anymore time. I would love to have 2 kids but if all I can have is one because of the endo then I will be happy but I’m not giving up without a fight.
    Like I tell everyone I know…. my PKU is a cinch compared to my endometriosis. Maybe cuz I’ve never been off of diet and it’s just a part of my life.
    If any of you need someone to talk to or to ask for my input on how to make the diet easier feel free to ask me anything.
    Look forward to getting to know you all.
    Missy

    #4372
    Avatar of Bethany
    sjimnbeth
    Member

    We found out Friday AJ’s results went down to 4.7. We thought we were at the point of starting the special formula, but it went down instead of up. We’re awfully excited. Not exactly sure what this means, but we’re hopefull. We meet with his specialist Friday for a checkup. Intrested to see what he has to say about his levels.
    Tamara- is your daughter on a regular diet? I know what you mean about the blood draws. The last time I took him in was horrible. It took six times to finally get his blood, I had to bring him back the next day (4 one day, 2 the next). Poor guy, I’d never let it be done that many times if it wasn’t so important. I’m gonna talk to doc about that too and see if any other options?? He’s getting to be a big boy, 13.6 at 10 weeks, he was only 7.2 when born. Will I be able to start him on cereal at four months?
    talk to you soon,
    Beth

    #4384
    Avatar of Bethany
    sjimnbeth
    Member

    well doc gave us the stuff to do blood draws from home – yeah. Not that I really want to do them, but it’s gotta be better than going to the lab. Any suggestions from anybody?

Viewing 15 posts - 1 through 15 (of 28 total)
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