PKU.com Community Discussion Forum New to PKU.com My child with mild Hyperphe

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #5184
    Avatar of Charlene
    McKenna
    Member

    HI everyone – I had my 1st child on 8.10.06. 2 weeks after we had her home, her doctor called with results that her Phe levels were high and it could be PKU. We went down to Children’s Hospital in Detroit for further clarification testing. Her levels are in the Hypherphe range and have been since birth. She continues to get monitored every 2-3 months. Is there anyone out there that has a child with PKU-Hyperphe? Looking forward to hearing from you. Thanks.

    #5185
    Avatar of Breanna
    BreaMarie91
    Member

    No sorry, me and my little sister have Classical PKU (the more serious type of PKU). I’m 15 and she’s 8 (I also have 4 sisters and a brother without PKU), but if you ever want to talk I’m here. nBreanna

    #5202
    Avatar of Sarah
    HappyMom
    Member

    Hi, nMy son has Classic PKU. What is hyper-phe? Did you have to change your baby’s diet?
    Sarah

    #5205
    Avatar of Breanna
    BreaMarie91
    Member

    Correct me if I’m wrong, but I’m pretty sure hyperphe is just a mild case of PKU. It means that when they take your babies blood level to determine if they have PKU their phenylalanine level is higher then normal but not high enough to be considered classical PKU (classical PKU is the most severe case, meaning people with classical PKU usually are allowed less Phes). nBreanna

    #5245
    Avatar of Charlene
    McKenna
    Member

    Yes – Hyperphe is a mild case of PKU. Still considered PKU to my understanding. She has to continue to get her PHE levels checks every 2 months and then @ 6, 9 & 12 mths. After that I forgot how often.
    Didn’t know if anyone knew of anyone with Hypherphe.
    Thanks.

    #5248
    Avatar of Breanna
    BreaMarie91
    Member

    For me and my sister (we have Classical PKU) we do blood levels every month. I don’t know of many people with hyperphe, mostly the people I know have Classical, but I’m guessing not much is different.
    Breanna

    #5257
    Avatar of mary
    mary1234
    Member

    Hi. I was just doing a little research and came across this website and saw your question. My 17 year old daughter was born with elevated PKU but never required treatment. We saw a genetic counselor, and I remember going in for blood tests periodically until she was about 3 years old. I don’t remember the MD calling it Hyperphe, but it was considered PKU. We were told she would only have to return for tests before starting a family of her own.
    I recently heard about a study that showed some late treated or non-treated patients ended up having psychological or behavioral issues later in life so i wanted to check that out. Also, i heard that females with PKU need to adhere to the special diet before becoming pregnant so the baby isn’t harmed.
    Do you happen to know anything about this?

    #5258
    Avatar of Breanna
    BreaMarie91
    Member

    Yes, it’s been said that people with PKU should remain on a diet all their life, though I’m not sure why your daughter wouldn’t be. And the part about girls being on diet before getting pregnant is true because if your phenylalanine levels in your blood aren’t between 2-6mg of phenylalanine per decaliter of blood then the baby could be premature, have heat problems, be mildly-severely retarded, you could have a miscarriage ect.

    #5281
    Avatar of Laura
    teardrop
    Member

    HI, I have a sone with hyperphy. It is a mild case of PKU. He was born March 26, 2006 and we have been goign for blood work every month!! He is doing very well so far and isn’t on a restricted diet! I see you went to a place in Michigan, We live in Windsor, Onatrio. (right across the bridge) If you have any questions feel free to ask!!

    #5282
    Avatar of Yvette
    PKU_PRINCESS
    Member

    Hi I have a 5 yr old little girl, who after a couple of years thought she might be hyperphe, because her levels dropped really low but they eventually went back up again. Her levels have always been really good, except at 1st of course. She can eat regular bread,pasta and even a small amount of ice cream. She is doing really well, except sometimes it is a struggle to get her to drink the formula. I was hoping someone out there had some helpful tips on how to get my child get her to drink the formula without having to be constantly at her to drink it. It can be fustrating & I feel so bad at times for her.

    #5284
    Avatar of Breanna
    BreaMarie91
    Member

    Don’t feel bad, someday I’m sure your daughter will thank you! I used to hate when my mom nagged me about my formula (have classical PKU so it’s a bit more serious) but now 15 years later and I’m glad she didn’t just give into me. You could look into a new formula, they’ve come out with alot of new things. nFor example: they have the PKUexpress coolers (which I take). They come in purple (a berry flavor) and orange (a citrus flavor) and they come already made in these little juice pouches. They taste good except that they leave alittle vitamin after taste. There is also the xphe maxamum which I tried and I’m hoping to start taking soon, I like a variaty, they are like the PKUexpress coolers accept they come in juice boxes. They come in both berry and orange but I think they taste better then the coolers, and they don’t really leave an after taste. There are also things like the phenylade amino acid bars which she could take (they are like chocolate candy bars, minus the phes and they have protein, amino acids ect). Or there are the phlexy 10 bars. Simply put there are alot of things you could experiment and it can’t hurt anything to try, if anything it might help!
    If switching formulas isn’t really an option then you could try adding things to her formula. I used to have alot of problems with liking my formula and my grandma used to always mix my formula with nestle strawberry syrup when I was at her house and it helped alot. You could also add things like Kool aid or anything with flavoring. Just out of curiousity what formula does your daughter drink?
    I hope this helped alittle! nBreanna

    #5305
    Avatar of Charlene
    McKenna
    Member

    Yes I did hear also that girls will have to be closely monitored if they want to become pregnant.
    My Daughter right now has to get her Phe levels checks again at 9 mths. When she was first born it was weekely then went to 2mth, 4 & 6mths. I think after she is a 1 yr old, it has to be done yearly. So far so good though now..
    In my case I think PKU is hereditary and genetic. My cousin has a baby with CPKU.

    #5308
    Avatar of Breanna
    BreaMarie91
    Member

    To answer your question, yes PKU is in genetics. nTo have a PKU child both the parents need to be either a carrier of the gene or actually have PKU. These are the chances of people having a PKU child:
    With 2 non carrier parents they would have 0% chances of having a PKU child (because neither of them are carrying the PKU gene so they can’t possibly pass it onto their baby).
    With 1 non carrier and 1 carrier they would have 0% chance of having a PKU child but 25% chance that their child will be a carrier aswell (this is the only one that might be wrong, they still can’t have a PKU child but they have a small chance of having a PKU child)
    With 2 parents that are carriers they would have 25% chance of having a pku child and 25% chance of having just a child carrying the gene and 50% chance of having a non carrier child
    With 1 carrier and 1 PKU parent they would have a 50% chance of having a PKU child and any children without pku will automatically be a carrier (since the PKU parent can only pass on the PKU gene the carrier parent can pass on 2 things, either a non PKU gene or a PKU gene)
    With 1 non carrier parent and a PKU parent they would have no PKU children but all would be carriers
    And finally 2 PKU parents would have all PKU children
    Since PKU is a genetic disorder then it is a gene that parents pass down to their children, these are just the estimated averages though because I know of parents who are both carriers and have 3 kids and all 3 have PKU.

    #5527
    Avatar of Bethany
    sjimnbeth
    Member

    My son is 10 months old. He has been doing really well with his phe levels, with no restrictions. We had genetic testing done which shows that he does have pku, so no chance he’ll out grow it. Since we know that for sure, his dietician had us start him on the phe free formula to get him used to the taste. We know with his last test that he tolerates 800mg, which is a lot, so we have to stay at that number. That’s a big adjustment for us. His numbers are usually 3-4 with us testing every 4-6 weeks. The doctor mentioned the term hyperphe, but there are so many variations of cpku.

    #5536
    Avatar of angela
    wolskiii
    Member

    Hi! My daughter born 10/05/06 is hyperphe. I am also hyperphe and my son just turned three an March 17th has classic PKU. We take my daughters blood once a month and her levels have always been within the normal range. She is not required to be on a special diet or drink the formula. We continue to take her blood monthly until she is one year old. We see a terrific genetic doctor in South Carolina, where we currently live. Originally from Michigan too, we now live in Hilton Head, South Carolina.

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