Hi, my grandson has PKU and I have never heard of a Clinic for this. He goes to his doctor at the Childrens Hospital in Brisbane (Australia) and also sends his blood test by post to the same doctor. nCan anyone tell me if there is a Clinic somewhere in Brisbane? nThanks, nRos
Is your grandson’s doctor certified to work with kids who have PKU? In another words is he a medical geneticist? I know for us we techniqually don’t go to one specific clinic for our PKU appointments. My siste and I go to a Childrens Hospital here in Wisconsin. We see our medical geneticist (just a fancy name for a dr who works in genetics ), our dietitian and genetic counselor. More specifically we go to the genetic center at the hospital. nBre 16 CPKU
My goodness me, you are a hive of information aren’t you . I think I will just keep sending all my questions to you from now on. I think he is a thing-a-me-pip doctor. He has only ever seen this doctor but has also seen counsellors and social workers. I just thought that there might be one place (clinic) that they might be able to go to get all their answers instead of driving all the way to the Childrens Hospital in Brisbane. You see they have three other children also. The two middle ones have had open heart surgery and the youngest has a disease that makes one side of his body larger than the other. It also has side affect which include tumors in the liver. He is only 2 years old. So it is a big task to get the eldest one to the hospital which is about 1 hour away in good traffic conditions. nThanks again, nRos
Something I have been thinking about I thought I might ask anyone of you. How do you cope as you get older? Does it get easier, I mean the feeling that you are missing out on the goodies and being able to just go into a cafe or takeaway place and order anything on the menu? Because Kalyb is only 6yo I suppose this is the hardest time, starting scholl and going to friends birthday parties. I don’t know, I just remember the panic when they came to stay when he was about 18mths, they forgot his bag of baby food. I had to go up to the supermarket and buy a tin of food. I had a terrible time trying to find something that didn’t have meat of some sort in it. I hope for your sake it does get better and I am in awe of you all. It takes a lot of courage to grow up in this day and age even if you don’t have any medical problems. nRegards, nRos.
For me there are a few trying times, but when I say few I really do mean few. My thinking is you can’t miss something you’ve never had. Think of something like sushi, caviare, snails or something else you have never tried…do you miss those things you’ve never tried? I guess it probably depends on what type of a family life you grow up it, my family never made a big deal out of my PKU and neither do me and my 9-year-old sister. We were born with PKU and that’s just how it is and we both know we could have been born with other disorders that could prevent us from living completely normally. I know for some people it might be hard to deal with. I will admit middle school was probably the hardest time for me when it came to PKU. Probably because that is when my friends really started getting curious about what PKU really was and the truth is at the time I had no idea how to answer their questions. Now since I know alot more about my PKU it’s a million and one times easier to explain to my friends quick and in terms they understand. Everybody has something they have to deal with whether it is diabetes, arthitis, heart problems, food allergies etc and PKU is just that one thing for me….but that’s just my thinking and everybody is different. nBre