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Topics: 1 Posts: 14
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 Created 4 months ago
Congradulations on your wonderful baby boy!!!
Well I dont have the time to read all the replies you got but I am sure they are all encouraging since that is the type of people on here. I just wanted to say we have 3 children when our 1st was born we didnt know about PKU she is now an amazing 7 year old thriving in school and can give you an ear full about PKU! She actually asked us the night befoe her 7th birthday if she would still have PKU after she turned 7. We held our breaths and answered her yes you will have it for your whole life. and I was completelly shocked at her reply she said GOOD I would be sad if I wasnt PKU anymore!! But back when she was diagnosed we where also completly in shock and overwhelmed. It does get easier!! Our middle child does not have PKU, but our 3rd and youngest does ...he is three and I believe his hobby is sneaking foods he should not have!! and he is still doing well even with his little "Hobby" I did worry about what he would think about us having him when we knew he would have it. But as for now I think that is nothing to worry about we have to deal with his big brother feeling like he is the different one instead!! HaHa For a long time we actually did bloodwork on all 3 kids because the middle child felt left out!!
Anyway thing will get better! I promise. I highly suggest finding a PKU event and attending it will do words for you. I didnt notice where you are located but we are in wisconsin and there is a great group here plus we know I know contacts in Michigan, Texas, Illinois and Indiana if that helps at all.
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we have been on kuvan for 4 weeks now, thurseday we go to find out if it is working wish us luck!!
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Topics: 0 Posts: 1
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Created 3 months ago
Hello Kayleigh
I have a son, Trevor who is 8 years old now and he is fine as fine can be. I know it's a lot to take in now, as everything is easier said then done. We chose immediately not to have any more children. We took care that situation. We thought the same way you did. Really because of guilt, because we did not know how it was going to affect his life and our life. You have 25% chance your baby will have PKU, 50% they're a carrier and 25% normal. We wish we did not get ahead of ourselves. We would have liked to have another baby. I think it was so much to take in and they really scare you. Your going to be amazed just how fine Riley will turn out. I promise.
The food is getting so much better, I did not like the low phe food either. We just fed him lots of fruits and vegtables. His favorite food is french fries. Once it sinks in, and you get a handle of things you will be fine too.
As far as the hubby, I was there too. He will come around, but right now you have to take charge. Riley needs you. Don't dwell, or get stuck with what if questions in your mind. Educate yourself on PKU. God does not give you more than you can handle.
Take Care and God Bless You, your husband
and Riley.
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Topics: 1 Posts: 15
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Created 3 months ago
CONGRATULATIONS!!
I am 20 years old and I have PKU!! I can't believe what you read about "risking" having more children! I am completely flabber ghasted!! Having PKU really isn't the end of the world! As others have said, there is lots of specially made low protein foods available and there are lots of fruits and veggies that are allowed freely which you would feed a little 1 to keep them healthy anyway!
I have NEVER blamed my parents for my having PKU EVER!! The thought has never even crossed my mind! And you shouldn't think for ONE minute that your lil man will ever blame you!
You shouldn't let Riley having PKU stop you from having more children. And your husband certainly shouldn't feel it is his fault because at the end of the day it is one of those things and your son will grow up more or less the same as everybody else. And most of all NO PKU REALLY IS NOT THAT BAD!!!
As I said I am 20 years old. I am happy and healthy and couldn't wish for a better Mum! I love her very much and as I said, would never blame her for my having PKU!
Don't worry you haven't offended anyone! And I hope I haven't made you feel worse because I just want you to feel better about the whole situation!
When I was growing up I always felt special to be different and as long as Riley is loved as he obviously unconditionally is, he will feel special too, and you will have nothing to worry about!
When he is 20, you will wonder what you were so worried about! I know my Mum and Dad were VERY worried when I was diagnosed. Now they wonder what the worry all was in aid of!
Hope my comments help!! I would never want to make you feel worse. I hope I have reassured you a little more!
Becs
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Topics: 2 Posts: 4
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Created 3 months ago
Hello Kayleigh,
Our son was born May 23rd, and recently diagnosed with PKU. Just thought I would pop by and see how things are going for you. Seems we are simular in stages, as Riley would be just slighly older than Jacob.
Our story...
Jake has two mommies. I am one, and my partner, his biological mother is obviously the second. A friend of ours was a donor for us. Unaware of the fact they were both carriers, our lil angel was diagnosed with PKU. Due to incompetent cervix, my partner went into premature labour at week 26 gestation. She was air lifted to a hospital which was better able to care for her and baby should he be born early. He held out two more weeks, and was born at 28 weeks. He was transferred back to our town at week 30. (Just this week) There were so many complications that could have resulted, but against all odds, he has been wonderful!! PKU has been his only stumbling block. When we first looked into it, I thought it was completely terrible, and how could we adjust as a family to his needs. We also have a 10 and 11 year old. This site has been wonderful in helping ease our minds. Things could truly be worse. They are still testing his levels and from what I understand at this point he is fairly low, and requiring no diet intervention. We are optomistic (or perhaps hopeful) things will stay this way.
I have to say, it helped hearing the struggles your husband is having, where you have moved to more of an acceptance. I am firm in that there is no need to place blame. This is nothing we could have controlled, and nothing to give a second thought to. My partner agreed, it was not donors fault, however, struggled with her own role in our son having this disorder. I think she has accepted it now, but it was difficult for me to completely understand why she was beating herself up. As for donor, we have alerted him of the fact he is a carrier, as he does have other children, who may like the heads up, but the thought of stopping them (the children) or him, from having children was never a thought.
We are in Canada by the way :) Nice to meet you... all of you! :)
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Topics: 2 Posts: 3
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Created 3 months ago
Aww beckyboo that brought tears to my eyes, thank you for reassuring me. Riley is doing really well, he is 6 weeks and 2 days old and now weighs 10lb 5oz. GOSH are really pleased with his progress and his phe level for a while was really stable, he went through a growth spurt which messed it up a little but we are working at getting back on track.
Im actually looking forward to starting to wean him onto solids now. xxx
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Topics: 1 Posts: 15
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Created 3 months ago
I'm so glad I did make you feel better =) he will be happy and healthy and love you to bits coz you are obviously an amazing Mum! Keep in touch! x x x x
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Topics: 0 Posts: 2
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Created 3 months ago
Hello!
Congratulations on your bundle of joy! Let the good times roll!
We have a beautiful almost three year old son with classical PKU. What a blessing he is to us! I can't stress enough to you that our son is so normal and SO IS YOUR CHILD. SO ARE YOU AND YOUR HUSBAND!
The first year is the hardest. I am here for you to answer any questions you may have (if I can), to listen, and to assure you that all is well with your child!
We consider PKU an inconvenience at times, but certainly something that is completely manageable. It is so overwhelming at first. Too much information comes along, so I won't bog you down with specifics.
However, I did put together a list of things you should concern yourself with for future reference (which has nothing to do with PKU):
1) Your child will probably want to be held all the time. Also, the crying gets louder. You will feel like you are so exhaused that you might die. You won't. Nap when your baby naps. Cry when your baby cries if you need to, and the first time you put your child in his bed when he is crying and close the door because you can't stand the noise, know that we have all done it. Then, when he is asleep, spend time gazing at his perfectness and know that God created sleep so that kids are able to stay living.
2) Buy extra supplies, get a HUGE bag, and chuck it full of everything you need in the house. Then keep it by the door. You will never get to leave the house without a ton of stuff. I'm still packing the house. Then, when you get your son in the carseat, get all the junk in the car, and accidentally lock yourself out of the car, know when you are calling the locksmith and waiting for help while pressing your face to the glass and thinking "how could I do this?" that we have all been there.
I hope you got a chuckle. Don't let PKU spoil this time. There are many things all parents have to worry about. Time helps with it all.
Sincerely,
Lori Kiely
Nathan's Mommy
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Topics: 0 Posts: 6
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Created 2 months ago
My son maverick was diagnosed around the 11th day as well, i felt the same way as you, but it gets eaiser i promise, Maverick is 5mths now and is such an angel, i truley belive he was sent to me for a purpose and he is going to be great and so will your son!
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Hi my name is Tiffany amd i have a son named Maverick (hes 4 months old)who has PKU. His level at birth was a 6.7 and a week later it was at 18, after we started him on Periflex infant it dropped to a 0 and added formula back until we were on complete regular formula because we couldnt get is level to budge off of 0, so he got sick about a month ago and his levels shot up to a 40!? we cannot figure it out so we put him completley back on the periflex infant to get his levels back down, it went bake to a 0, after a week of adding 3/4 goodstart and 1/4 phenex it was back to a 27. i am following the docs orders to a T and cannot figure out why his levels keep doing this, his specialist says he has never seen an infants levels all over the place like this, has anyone ever had this problem? We did switch from periflex to phenex but i dont think that would matter? Dose any one use Phenex-1 maybe i am not mixing it right? someone please help me i am so stressed that i am hurting mvaerick and i am trying so hard! oh another things is at 3/4 goodstart and 1/4 periflex before his levels went to a 40 his level was at a 0.2
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Topics: 2 Posts: 2
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Created about 1 month ago
Take a deep breath and don't over stress about it. I have classic PKU and have not once ever blamed my parents for it, I realize that no one has control or knowledge of the genes they carry. So don't blame yourself for it. It's going to be tough at first but with time it will get so easy you will not even really have to think about it. I'm 16 now and have a happy healthy life and many friends and I don't view my PKU as a burden or a curse because it has given me so many life skills like self control, organization, and belief in myself that I can do anything that it is honestly more of a positive for me than anything. I am just going to be blunt and say if you have another child and it has PKU, DO NOT TERMINATE, you never know what kind of amazing child you could have in the future, just don't give up and know that after the first year it will be exponentially easier for you.
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Topics: 0 Posts: 6
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Created about 1 month ago
my 6month old was also diagnosed around 11 days as well, i felt the exact same way that u do but i promise it gets better when u realize its not so bad:) yes there are tons he wont be able to have but it will be ok because u will come to the realization that this is just how it has to be:) my son is perfect, Maverick is his name and he is already trying to crawl:) just listin to your nutritionist, she/he will become one of ur best friends, also there are lots he can have just not tons at one time, there is tons of low protien foods like pastas, cookies, cake mixes, even meat subsitutes that you eill be able to make him. I know it seems easier said than donr right now but i really had to just tell myself that at least i had a healthy son(its just my job to keep him this way) and hes breathing and alive with no other health problems, because even tho right now you couldnt imagine anything worse, there is! Good luck and congrats!!!! i will keep u in my thoughts.
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Hi my name is Tiffany amd i have a son named Maverick (hes 4 months old)who has PKU. His level at birth was a 6.7 and a week later it was at 18, after we started him on Periflex infant it dropped to a 0 and added formula back until we were on complete regular formula because we couldnt get is level to budge off of 0, so he got sick about a month ago and his levels shot up to a 40!? we cannot figure it out so we put him completley back on the periflex infant to get his levels back down, it went bake to a 0, after a week of adding 3/4 goodstart and 1/4 phenex it was back to a 27. i am following the docs orders to a T and cannot figure out why his levels keep doing this, his specialist says he has never seen an infants levels all over the place like this, has anyone ever had this problem? We did switch from periflex to phenex but i dont think that would matter? Dose any one use Phenex-1 maybe i am not mixing it right? someone please help me i am so stressed that i am hurting mvaerick and i am trying so hard! oh another things is at 3/4 goodstart and 1/4 periflex before his levels went to a 40 his level was at a 0.2
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