PKU.com Community Discussion Forum New to PKU.com I've never even heard of PKU…

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • #8353
    Avatar of Chad
    slmdcivic02
    Member

    Untill seven days ago I never even knew such a condition existed. That is untill my newborn daughter was diagnosed with CPKU when she was seven days old. My wife is beside herself on this and is super emotional and it is hard for me to explain all this to her being overwhelmed as she is. I have been trying to explain to her how to do the formula mixture and when to giver her this formula. Our dietician is allowing 17oz of breastmilk a day with 4oz of formula mixed in there and anymore feedings is to be with the formula. The only thing I am having a hard time with is 17oz's of breastmilk seems to be alot to be allowed. Her level from what the Dr. told us was 369 24hrs after birth and 1700 on the 7th day. We just finished a two day formula only diet to bring her levels down. Can anyone translate this? I don't know what the levels mean but from what I gather is that she should be lower than 360. How is this measurement system what does it go by? I am very new to this and am trying to learn all I can with the bombardment of questions from family and friends. Any advise or deciphering of what these levels and what you think about the amount of breastmilk she is given would be much appreciated.

    #8355
    Avatar of Eugene
    Eugene
    Participant

    70 is normal for you since you don't have PKU. The units are Micro Moles per Liter in your blood. I had a level of about 1800 micro moles per liter and my short term memory wasn't working well. I'd stumbe in the morning. I had headaches a lot and felt dizzy, but not like the room was spinning so it is best to describe it as disoriented. Some PKUers call it feeling cloudy. I don't understand that myself. It's as if you had 3 or 4 beers minus the happy,euphoric feeling you get with beer.

    I have a group on facebook called PKU Tools. I am a software engineer and since I need something to help me track my diet and calculate my PHE and protein and excanges I decided to write a program for us PKUers and the families. This app is $100. NOT! its free. I will post on PKU.com once it is done or you can join the facebook group to see the progress and capabilities as they are currently.

    http://www.facebook.com/home.php#/group.php

    #8357
    Avatar of Breanna
    BreaMarie91
    Member

    I know at the moment you and your wife are probably scared and confused, and that is normal. Most parents who have children that have PKU do not know what it is until they hear the diagnosis. Eighteen years ago my parents were in your position. Today my mother is a pro when it comes to PKU! Everything I know I learned from her, so I can tell you from personal experience that as time goes on PKU will slowly become more and more apart of your daily life.

    The measurement your doctor is using is micromoles of phenylalanine per liter of blood or ummol/L. When your daughter has a blood test done the doctor is measuring how much phenylalanine is in her blood. People who have PKU need to keep their phe levels between 120 and 360 ummol/L.
    Each persons situation is different. Some people who have PKU have more enzyme activity than others, which means they can tolerate more phenylalanine without having high phe levels. The only way you will be sure if 17 oz of breast milk is too much is by giving it to your daughter and doing a blood test. If her phe level comes back high your doctor or dietitian will adjust the amount breast milk she is allowed to have in order to lower her levels. Unfortunately treating PKU involves a lot of guess and check.

    Your daughter will be just fine. As time goes on you will be amazed when she begins to roll over, sit up, crawl, walk, and so on just like other children her age. When I was born my parents did not have the internet to turn to. They were not sure what my future would hold, but today I am in college studying Nursing and Pre-medicine! Five years from now I plan on attending medical school to become a medical geneticist.

    Please feel free to email me at completeangel@ameritech.net or contact me here!

    Breanna Hardy 18 CPKU

    #8358
    Avatar of Janice
    mommyof3
    Member

    Hey just wanted to let you know things will get better, 6 years ago I was sitting in your spot, I was scared  and didnt know what to do.  Now I have a beautiful talented healthy little girl Cyra she is 6 and 1/2 ( that 1/2 is very important to her) in the picture on here she had  just got home from her first ballet recital.  As you can see I also have two boys my 4 year old Chase is a happy and healthy active boy who does not have pku and my spunky 2 year old Kenny is always into mischief and he does have pku.  Eventually pku will be a part of your life but not the only part. 

    Brea did a good job of explaining the levels, I did want to add that with each child it is different how much phe they can handle my 2 year old gets more then my 6 year old.  So trust your dietians they will help you find out how much your daughter can have.  Please try to make a point to enjoy your daughter while she is a baby this time passes so quickly and she will be fine.  Any other questions feel free to ask.  And when your wife is ready get her on here too.

    we will keep you in our prayers, also I know she  is young but if you can go to any pku outing in your area it helps to meet other families  

     

    #8361
    Avatar of Chad
    slmdcivic02
    Member

    Thank you I have already met another family who one of my friends knows that have 2 children with PKU on is only 3 months older than Marley so they will be in school together which will be good. I don't know af any other families here in Lubbock that have this but we will be going back and forth to Dallas and there are some families we can talk to there and they have camps and outings there that we will be working on getting into. We are enjoying Marley very much and in no way are we treating her any different because really she isn't different. She is a good baby very alert and looks like she is taking the world in looking around all the time. She likes to look around and observe everything that is going on around her. I will be happily passing down all my useless knowledge down to her ( I'm a geek at heart)

    #8410
    Avatar of Emily
    supportblue
    Member

    My daughter is 10 months old and is also named Marley!  She also has CPKU.  Like you and  your wife, I was also terrified with the diagnosis of PKU.  I also breastfed my daughter for the first 6 months of life along with her Phenyl-Free.  I felt like I was almost poisoning her by breastfeeding her after getting the diagnosis, but the dietician assured me that it is absolutely necessary that she gets phe from some source and not to feel that way.  I can't remember exactly how many ounces of breastmilk she was allowed to have in the beginning but I know at one point I was breastfeeding her 4 times a day, thinking this can't be good but her level would be alright.  We have had to make many adjustments to her diet these past 10 months as her levels go up and down like a roller coaster depending on how fast she is growing, etc.  I hope that you and your wife are adjusting alright.  We are still in the easy phase of Marley's diet.  It is when she switches to regular table foods that I think it will become more difficult but we will adjust to that as well.  I always feel like there must be some effect the PKU is having on development but my Marley is developing right on schedule and your Marley will too!!  Good luck to you!

    #8444
    Avatar of Chad
    slmdcivic02
    Member

    Wow talk about a coincidence yea right now we are coasting but I know its going to be alot to learn in the near future. Marley is now on 15oz's of BM a day and her levels are right at where they need to be. We are currently working on eating all our meat up and going to a vegetarian way of life for her. I figure the sooner we start the easier it will be when she starts eating and see's that the diet isn't that different from her plus I think it will be healthy for us anyway.

    #8450
    Avatar of Emily
    supportblue
    Member

    Best of luck to you!!  I hope Marley continues to do well!

Viewing 8 posts - 1 through 8 (of 8 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional