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PubliKforUm » New to PKU.com

Hello All

Topics: 0   Posts: 3
Good morning! Firstly I would like to say that I am learning English. Sorry. My name is Ciro. I am 41 years old. I am from Spain (Europe) and I have three beautiful children, one of them has PKU. She is 7 years old and she is very clever and belle. I think it would be very interesting to know how is PKU in another Countries. My daughter is a severe PKU but untill now she is very happy. Sometimes she ask for different foods but her brother and sister help her. Sorry for my English, I think is very poor. See you soon.

Topics: 21   Posts: 1087
Hi Ciro, I think that's great that your other children help your child with PKU. My names Breanna and I'm 15 and have Classical PKU (the most sevre case). I have 5 sisters and a brother (my 7 yr old sister has PKU too) so I know how important it is to have siblings who help. And your english seems fine to me , Speaking of different lanuages, at my school we have german exchange students and I was really suprised to hear how well they spoke english! Breanna

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Hi Ciro, I am a mom of an eight week old PKU daughter. I live in Florida, USA and here we visit the nutritionist weekly for a weight check and blood test to see how her levels are doing. After the first year it won't be as often. She has special formula that I mix with breastmilk to make her bottles for the day. Once she starts eating food I will have to count PHE levels for different foods and track how much she eats to keep her PHE levels in balance. Do they do all this in Spain?

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Hi Kami, Thanks for your reply. I hope your daughter in doing well. I remember when my daugther Sara was eight weeks old . It was a difficult time for us, because we didn't know very much about the illness. In Spain PKU is detected in the first few days, after birth, I think it is de same in all countries. When Sara was born she had weekly level checks untill she was one, and then, every two weeks untill the age of 2. After that untill now she has had monthly level checks. At the moment my daughter is starting to have a difficult time because she wants to eat everything and she asks why she can not eat what she wants. I think from now she needs more help and I hope everything going well. Kind regards from Spain.

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Hi Breanna, You are very kind about my English. I still have to learn more because I need to much time to understand for example everything you have written.

Topics: 21   Posts: 1087
Yeah well I know how it is to have to try to figure out different languages. Since 7th grade I've been taking French in school but I'm not to good at it We had french pen pals last year and I had the hardest time understanding them and I'm sure they had a hard time understanding my french Also, my mom said she found out about my PKU when I was like 8 days or 9 days old and I think until I was like 2 it was weekly blood test and then it was monthly (but we forget sometimes to do them when were supposed too). Breanna

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hello everyone iam a 35 yr old mom of an 11yr old daughter who does not have pku but i do. i just recently found out i was pregnant, and i am so confused. i am already 6wks far and worried about starting diet so late for fear of damage already done. what do you all think

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Nikki, I'm not really sure about how fast not being on diet effects your baby, but I would say contact your dietian and doctor as soon as you can so you can get yourself back on diet.

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Hi my name is Heather and I am new to this site. I have a 5 month old son and I am very scared and sad. I just wish that they would come out with something that would make this all better. I also take my son to riley hospital in indy. Do you see dolly ? If you have any iformation for me i would love to here it. Please email me ! avonheather1@verizon.net thanks so much ~ heather ~

Topics: 7   Posts: 89
Hi, I saw a lot on new mom's posting so I thought I would chime in too. I just joined the site and I have 9 month old son with PKU. We found out when he was 8 days old and I was scared! I cried for two days. But things are so much better now. Having a baby with PKU made things a bit more complicated but he is healthy, beautiful, and learning something new everyday! We travel to the University of Minnesota for Easton's appointments and we have seen many ill children at the children's hospital. I have no doubt there are many parents that would give anything if sticking to a strict diet is all it took to make their child feel better. When I start feeling down I remind myself how really fortunate we are. I'm so happy to have found this site and look forward to "talking" to all of you. Sarah

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