PKU.com Community Discussion Forum Parent support lots of questions

Viewing 15 posts - 1 through 15 (of 17 total)
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  • #5711
    Avatar of Ruth
    rlb5141980
    Member

    I have a 2 month old baby with PKU and im still kinda dumb on everything thats going on. I had never herd of PKU before i was told she had it. I have two ladies that live within 30 miles from me to get some info off of but if anyone wants to talk im more than willing to learn all i can. I worry that she wont be normal and i have 4 other kids that are all about sharing. How do i tell them to share with one another but not with there little sister? Her big sister is only 15 months older than her and always wants to help. Also im having problems when she stays with her father cause hes not giving her all of her PHE formula needed in a day. Im still very confused and unsure of how im going to handle everything going on.

    #5716
    Avatar of Breanna
    BreaMarie91
    Member

    Hi,
    I’m more then willing to help you out the best I can! I come from a family of seven (I’m the third) and me and my 8-year-old sister, Erica, both have PKU. We are just as normal as all of our other siblings, we just eat alittle bit differently, have to drink our formula and do blood tests. If anything I personally think that PKU has made me stronger and more determined then some of my siblings because I have to watch more carefully at what I eat and I defintally learned math younger then them (which had to do with learning to count my phes at a young age).
    I’m a good student in school, I dance tap jazz ballet and pointe, I help teach two dance classes at my dance studio, I will be tutoring at my sisters elementary school soon, I go out with friends and my cousins all the time and I’m planning to go to college after highschool. Erica is also in dance and is doing great in school, although she is alittle more talkative then her classmates. What I’m trying to get at is despite my slightly different diet I’m not different then my friends and family and I’ve also met many adults with PKU who have grown up and are now very successful!
    I guess with your daughters older sister who is only 15 months apart just start teaching her and letting her know what her sister can and can’t have. With the older children just try to share all of the information that you get with them, maybe even take them along when you go to doctor appointments so that they have a chance to ask questions that they might have about their sister. Truth is that PKU is more of a family thing, it will take cooperation from everybody so it’s only fair that everybody gets their questions answered.
    I hope this helped and let me know if you have other questions! nBreanna n15 w/CPKU

    #5769
    Avatar of heather
    babybrianne
    Member

    Hi my name is heather i just found out that my 2 week daughter has the pku disease but she only has a minor case of it I believe it is called low hypa something sorry im new at this but i am totally freaking out because i dont know weather or not it is going to get worse and if it does what am i suppose to do. As of right now the doctors are telling me she dont have to be on any special diet because are phe levels are low does any one know if that is right or do u think she should be on a special diet. I know it probably sounds crazy not listening to the doctors but its hard to really listen to anybody right now im really scared of what is going to happen so i think maybe i could understand a little better if i talk to someone living with pku. So if any one can help please let me know. Thank you

    #5771

    Hi! nMy name is Olivia and my little brother has PKU.
    When Max was born, my family had NOOO idea what the heck PKU was. My parents were confused and scared. I was only 9 1/2 and i also had no idea what was going on.
    Well, it’s 7 years later, and we have learned to watch what Max eats. He’s basically a Vegetarian. He can’t have any meat and only a few things with Phe in it.
    My suggestion is watch what she eats as she grows up. If you don’t already, you should get a book with a list of food items with it saying the amounts of Phe in the items. It would help ALOT!!!
    I don’t know if any of this helps you in any way…but just know that you are NOT alone.

    #5773
    Avatar of Breanna
    BreaMarie91
    Member

    Hey Olivia,
    I just wanted to drop by and say that you sound like an awesome big sister! And I hope everything is doing good with Max.
    I’ve got 6 siblings (one who has PKU aswell) and my oldest sister was only 3 1/2 when I was born so she has always been growing up with a PKU sister. That is one thing I have never really thought of, how a sibling might feel if they are older and all of a sudden have a PKU sibling.
    Breanna (16 in 19 days!) w/CPKU

    #5775
    Avatar of heather
    babybrianne
    Member

    Oliva thank you so much for letting me the information you know. And also for letting me know that im not by myself because even though all my family and friends are here to help which they are the best help of all I still feel like i am by myself. Because this is my child and i have to be the one to keep her on this strick diet. Can you let me know if it was hard for you being the older sibling and watching what your brother ate because i have a 3 year old son and he eats what ever he wants and im scared that he will give her his food or she will just try to eat it. That is another scary thing that is on my mind which i know i dont have to worry about it now but that day i do have too will soon come. Once again thank u all so much for being here for me to answering all of my unanswered questions and concerns.
    Heather

    #5776
    Avatar of Daria
    formyson
    Member

    HI Heather, I have a 2 1/2 year old son who has PKU. He has a mild case like your child. They call it hyperphenalalanemia or hyperphe for short. He was never on medical formula or special food as a baby and now as a toddler I just need to make sure he eats around 1500 mg of phe a day or about 30 grams of protein. I was nervous too when he was first born about what would happen to him developmentally or how the management would be but you just take it one day a time and it all works out. My son is a typical two year old and him having PKU no longer concerns me. If anything it has made me more aware of the special gift a child truly is!

    #5782
    Avatar of heather
    babybrianne
    Member

    Formyson, nThank you soo much for your input with my questions, because I was under the impression from reading some forums that she should be on a diet right away. So being able to talk to somebody with the same case as my baby girl really helps me out a lot. I was just wondering if with a mild case as they both have do they believe that it will worsen in any way or is their no way to tell? And also do you have to still check your sons levels every week or does it become not so often as they get older? Once again thank you so much for your help with my questions and also for letting me know it gets easier.

    #5785
    Avatar of Daria
    formyson
    Member

    Heather,
    Your question is a tough one to answer because no two hyperphe children are the same but with that said a hyperphe child will never need the extreme diet management that classic pku children need. My guess is the reason your child is not on a special formula now is because her levels are between 2-5. Do you remember what they told you the level was? When my son was born and first tested his level was a 2.7 Since then his levels have always been under 5 which is why he isn’t in need of special food. We test his blood once a month now. We still have to watch what he eats as his level will go above a 5 if he eats more than 30 grams of protein a day. But that allows him small amounts of meat and milk which is truly a blessing with this condition. You won’t really know your babies tolerance until time passes but if she is truly a hyperphe you will find it very manageable. I hope this helps. I promise you that as time passes it won’t weigh on your mind as it does now.

    #5790
    Avatar of heather
    babybrianne
    Member

    for my son,
    thank you for your input on my situation but i think my daughter may not be a hyperphe as you describe it. I was just wondering if your son has ever had a fever and his levels have gone up because of it. Because my daughter was just in the hospital from the 24 till the 26 and on the 23 her levels were at a 5.6 and then on the 25 they were a 8.8 the nurse that i talked to told me that it may be from the fever and the antibotic which i hope that is the case otherwise her levels are going up very quickly which is very scary to me. i think that i am freaking out now more then i was before because i cant tell what is gone to happen day by day. And if her levels go up too high my concerns are what is gone to happen to her and how stick of a diet will she have to be on. I know this is something that you may not be able to answer but just talking to someone else sometimes just helps a little more. Because in 4 weeks of her life i have found out she has pku then she was in the hospital with a high fever had every test done possible and now her levels are gone soo high im really scared. So once again thank you soo much for being able to talk to someone about this. And if anyone else can give me any information please do so i will appresiate so much.
    thank you heather

    #5792
    Avatar of Breanna
    BreaMarie91
    Member

    Hi,
    I just thought I’d drop by and leave a post. They put your daughter in the hospital for a 5.6? That seems odd since levels are usually supposed to be between 2-6. Well I guess it maybe because she is a baby.
    I can’t even imagine how hard it must be coming into the world of PKU like this, seeing as I’m coming from the point of view of a Phenylketonuric, not a parent. How strict of a diet she will have to be on will all depend on how much Phe she will be allowed.
    In reality, she will just have to eat differently, measure her food, drink her formula and of course the blood tests. I guess the only thing that has ever bugged me is the blood tests, but that is only because I don’t like needles.
    Believe me I’ve had some blood levels there were around 12 before! Nothing really happened, I was alittle tired, maybe cranky and sometimes got a mild headache but that was about it. In order for Phe levels to really start to have an effect they would have to be high for a longer period of time. Besides some levels hear and there my levels mainly stay around 4-8mg/dl and since January I’ve managed to keep them between 2-4mg/dl!
    Even though I have had good levels and some not so good levels. And even though I went through some periods where I didn’t drink all my formula, I’m still growing up just like any other teen in my highschool. I get good grades, I compete in dance, I teach dance classes at my dance studio, I tutor at my siblings elementary school and I’m planning to go to college after highschool and someday I want to work in genetics as a medical geneticist. My point is that even though I’ve had ups and downs, overall I’m fine! The same applies for my little sister. In the long run if you have a few not so good levels hear and there it’s not going to do deathly damage. It’s just that when there is a bad level you want to nip it in the bud before it gets worse.
    I know this is all probably confusing, but I promise as time goes on you will get used to things and everything will mello down. To this day my mom never stresses about me and my sister’s diet. I control my diet on my own and my sister is almost independent with her food aswell and PKU is just apart of our lives. Just hang in there! You sound like a wonderful mother and it’s okay to be worried. It shows that you truly care. And I really think you parent’s of PKU kids are very strong, I’ve had PKU all my life so I’m used to it, but all the parents have to alter their lives and adjust for us. Just keep doing what your doing!
    Breanna 16 (on the 9th) w/CPKU

    #5793
    Avatar of Breanna
    BreaMarie91
    Member

    PS sorry for the very long post.

    #5794
    Avatar of Daria
    formyson
    Member

    Heather,
    First I am sorry to hear your baby was sick. I hope she is better. As for levels raising when a child is sick…yes they do. When my son has a cold or fever I take him off his milk and no meat so his levels don’t raise too much. I completely here your concern about freaking out. I cannot tell you how worried I was in the beginning. I did not know that my son would have the tolerance he has today. Every week I would worry that his levels would go too high and I would have to switch to metabolic formula. I never use to buy more than a weeks worth of Similac for fear I wouldn’t be able to use the formula. I had my shares of tears in the beginning but as the weeks went by and he hit milestones I eased up. Your daughter is so young that you truly won’t know her tolerance until she stops this rapid development as a baby. When my son turned one we tried to switch him to regular milk and it didn’t work. Meaning that his levels went about a 5 when he went over 12 oz of milk but 6 months later his levels actually went low (under 2) and now he can tolerate more than 12 oz of milk. Believe me the not knowing how much phe your baby will tolerate drove me crazy. I do promise you in a few months from now as your baby hits those milestones and you get use to the routine your mind will be at ease. One thing to think about is having your baby’s blood drawn to find out what PKU mutations she has. I don’t know if you know what this means or not. Each person with PKU has two mutations, one from the mother and one from the father. Knowing the mutations can give the doctor an idea of how severe the PKU is and potential tolerance. My son has one mild mutation and one moderate one…hence his tolerance. This test costs about $1000 but we were lucky enough that the hospital we go to had money left over last year in their budget and did the test for free. I hope this helps and I do want you to know that this gets easier.

    #5795
    Avatar of Daria
    formyson
    Member

    Heather,
    I forgot one other thing. If you ever want to email me you can at dariazola@msn.com. Also I just saw your profile and I think you live about 40 minutes from me….so know that you have support close by! Daria

    #5796

    I have two younger sisters who also are older than Max. one was only 5, and the other was 2 1/2 when he was born. nour parents told us pretty much right away that he was not able to eat the same things as we were n that we were not allowed to give him any food without their permission.
    you need to let your son know that his new PKU sibling has a special diet and you need to let him know that he needs to help the family out and help her stick to her diet.

Viewing 15 posts - 1 through 15 (of 17 total)
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