PKU.com Community Discussion Forum New to PKU.com Just found out …

Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
    Posts
  • #9539

    On sunday afternoon my midwife came round to say that Oliver's (my little 2week old) heel prick test had come back and he had suspected PKU. I was devastated, as this was a shock, and had no idea what this condition was! .. We had to take Oliver to Manchester Hospital for further tests to comfirm this.

    He did have classical PKU. I found this really hard, and i'm only just starting to accept this, its so hard, as i never thought anything would be wrong with him! I know its treatable, and its just a case of change of diet, but i just feel for him growing up, not be able to eat things his friends are etc.

    How did everyone else cope as a parent? x

    #9540
    Avatar of Simon
    simoncrum
    Member

    Its not soo bad.. my partner always says she never missed what she never had..

    Also there is so many different foods available now from companies like SHS international that you can make pretty muh anything. 

    Its at this young stage when the mind is developing that the diet is MOST important, when they get older hey will no doubt break their diet, Can only be expected.  Also many Teens now are eating as if they did not have PKU, however sooner or later they decide to come back to the diet.

    Keep him right as long as you can control his eating habbits, then you can say you have done your part.  

    You will get on just fine, it may be scary now with all the measuring, and getting used to working out exchanges by reading lables, however it will soon become second nature.   

    Good Luck, simon

    #9541
    Avatar of Apostolia
    foufouka
    Member

     We all as parents know exactly the feelings that you 're describing here. 

    My daughter is almost two now. I found this site when she was almost 2 or 3 weeks old, the same terrified and overwhelmed as you must be right now. It was a great help to share feelings and experiences here, but most important to meet adults who have done grat with their life despite the special diet. 

    You will breath the moment the first levels come back normal, the moment your son reaches his milestones, growing up healthy. He will be great, beleive me. My daughter is happy, clever playfull and very stubborn… Something to do with her character and not the PKU. However, food until now is ok, she 's starting to learn not to eat from other people's plate, even in kindergarden she's not asking for something else. It will be double work for you as a mom, beleive me. To cook separate, to get him drink all his formula, to prepare a weekend in the country. But he will pay it back. Be prepared for the extra work, but do not take it by heart. …. Enjoy everymoment. Ask for anything I can help. Great mothers answer your questions here, I know how they are helping me. Congratulations on your baby…

    #9543
    Avatar of Ruth
    Ruth01
    Member

    Hello Oliversmummy,

    congratulations on your beautiful baby.  My 4 year old daughter has classical PKU.  I remember exactly the emotions I went through when we first received the diagnosis but would reiterate what foufouka says… it gets an awful lot easier as time goes on.  My daughter is bright, bubbly and gorgeous.  She goes to ballet, is about to start school and loves going to friends' parties.  She has also been in childcare since she was 10 months old, so please don't think you won't be able to leave your son with anyone else, or that you won't ever go back to work, or that your life will be all about PKU.  It won't  Our daughter has exactly the same life any other child has,apart from the dietary restrictions.  We don't think about her having PKU anymore, she is just our little girl.

    There are tough times, especially as parents, and the diet is hard work and a lot of effort.  Where do you live?  There should be support groups in your area that are invaluable.  We are in the UK (Kent) and there is a local support group as well as the national charity – the NSPKU.  It really really helps seeing older children with PKU who look and behave perfectly normally.   Parents of older children are also great sources of advice about recipes and coping strategies, I have used other parents a lot to bounce ideas and anxieties off!

    The other emotion I remember feeling a lot just after the diagnosis was loneliness.   I felt I couldn't connect with other new mums who worried about silly things like their child not sleeping through the night or whether or not they should take them to baby swimming classes – that normal stuff all seemed totally insignificant to me and I couldn't connect with other mums.  I always thought they just don't know how much we have to cope with and what we are going through.  If you feel like this then please know this feeling will also pass, again as your child progresses and has exactly the same issues as other children, you gradually reconnect with normality again. 

    Please don't worry too much about your son and try and enjoy your time with him as a baby.  I really regret all the energy I spent worrying – and for nothing.  It is a big shock but your son will have the same opportunities as any other child and will probably be extremely responsible from a very young age.  I did have the whole feeling of grief, and was upset that I didn't get the perfect child I had dreamt of – but as I have got to know my daughter over the last four years I realise she is more perfect than I could have ever imagined.

    We are now trying for a second baby and we will be equally delighted whether or not it (if it ever materialises) has PKU.  It has taken us a while to get to this place, but that is honestly how we feel.

    Congratulations again and please ask if you have any specific questions or concerns.

    Ruthx

    #9544
    Avatar of Tanya
    jakesmom
    Member

    Congrats on your lil one!! Such an exciting and equally terrifying time. I remember! Jacob is now 15 months old. Like yourself, he was diagnosed quickly after birth. He was born a mirco premie (28 weeks gestation, 2lbs 9 oz).

    It seems like yesterday that I was here where you are, searching this website for the it will be ok, you can do this you're not alone Its easy He wont want a hamburger….

    If I can provide any of these, please let me :)

    It will be ok — so many parents ahead of us have done so much, along with the medical teams, the problems of the past, have truly been left in the past.

    You can do this – In the short time we have dealt with this, I feel like a pro. My family are all well educated, and remarkably we are able to drop him off for a visit, without worrying about what he will eat. He goes to daycare. (granted I still pack his lunch, and snacks)

    You're not alone – the medical teams are available at a call (ours were anyway) and parents from  here, some which will become friends, are a valuable resource and all too happy to share! In no time at all, you will be the parent other parents are recieving comfort from.

    He wont want a hamburger — This one I still struggle with at times. Its easy right now, Jacob eats what I tell him, and make available. What happens when it gets older. I have never eaten a shark, and have no desire to try, I have recieved encouragement from PKU folks on here, thats how they feel about a hamburger. This helps.

    Message me any time you need to talk/ or I can help :)

    Tanya

    #9547

    Thank you everyone for your replies,hearing from other parents has helped, i think i am slowly coming to terms with the fact he has this condition. And at the moment its easy as i have complete control of what he's eating (formula! lol) i suppose the hard times will come when he's weaning and on solid foods! I guess i'll just have to be strong for his sake, and educate him well enough that he can't eat certain foods! And make his meals as tasty as possible! x

    #9548
    Avatar of Breanna
    BreaMarie91
    Member

    First of all congratulations on your new little boy! I'm sure it is exciting having a new little one, but with his recent diagnosis I would imagine it is also a bit overwhelming as well. Just remember though that he will be perfectly fine as long as he continues his diet. As time goes on managing his diet will become another part of life for you and your family. Each stage of life with your son will present new obstacles (ie starting solids, starting school, and so on), but with the help of your medical team I am sure you will be able to do it! It will just take a little bit of learning and taking one day at a time.

    I couldn't agree more with what Simoncrum and Jakesmom said about not being able to miss something that you have never had before. At twenty years old I have never had meat before, and to be honest I have absolutely no desire to eat it. I have always tried to keep a positive attitude towards my PKU and reminded myself that there are so many other disorders that I could have been born with that are worse and some that have no treatment at all. Even with PKU I am a happy, healthy, fully functional college student who is studying nursing and working a part time job.

    Anyway, please let me know if there is anything I can do to help,

    Breanna 20 Classical PKU

    #9551
    Avatar of Natasha
    pkuparent2
    Member

    Congratulations on little Oliver! I have a little boy, now 2.5 years old and like everyone else, I can remember all of the feelings you are feeling. I don't think I could have been any more devastated and it did take time to grasp everything. I always wonder how parents managed without this site years ago. I've received so much support through here and most of the people who gave it, probably aren't even aware that they did!!! 

    Baby steps,… Oliver will be just fine! You will be too. Tasha

    #9553

     i had the exact same reaction. it gets easier once you start going to clinic and each time they tell you more and more. and they give you so much information and tools to work with. as they will tell you, as your child grows, he learns and knows about his condition, he will never know the difference and it will be so natural to him as what we eat is natural to us. my son is 17 months and ive actually tried giving him a tiny bite of a french fry, and he doesnt like it. i assume cause its not his kind of food. 

    #9554

    Thank you all again for the comments! … I really appreciate all the comments! Im coping now, i think im coming to terms with it, i still get days were i get sad, but i know he'll be fine and i have to try be strong for him ! xx

Viewing 10 posts - 1 through 10 (of 10 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