Hi, has anyone tried to make icecream or sorbet using your formula or Rice milk? I was just wondering if I would be able to do it. If anyone has tried could you let me know what the results were. nThanks, nRos.
I’ve tried making ice cream using a recipe I got that the Phenylade company sent me. It was for my chocolate Phenylade. It tasted okay I guess, but I probably didn’t like it because I’m more used to more sweet things like real sherbert.
hello my name is hannah i no i’m not an adult but i have pku and i’m doing my school speach on it. it would realy help me out a lot if u could tel me what’s it’s been like haveinga child with pku. it would meen the world
thanks so much
Hellow Hannah, I will try to put into words what my experiences have been. My son (Pat) is now 29years old. He was born in Ipswich (Qld). Apparently they did a heel prick test on him after he was a few days old but I never new the results of this test so I didn’t know he had PKU and after being discharged from hospital I received a booklet to take to the Clinic each week to get him weighed and to make sure he was growing and developing normally. On this card were some letters I just assumed that it was some sort of code they used a this particular Clinic so didn’t pay it too much attention and no one ever mentioned it so it got forgotten. nHe was a good baby always drank his bottle (cows milk) with not a worry. As he grew he started to have behavioural problems. He was never violent or abusive. He just wouldn’t do what was asked of him either by me, his father or the teachers at his school. He couldn’t concentrat on his work and became a distraction in the class, we took him to an Optomatrist and found he was short sighted and he was prescribed glasses. He was pretty good with him wearing them. nWhen he was in Grade 1 he ran home from school because he didn’t want to be there and then he started to soil his pants. I was asked to take him to a Child Phsycologist to see what the problem was. nHe was assessed and we were told that he was Hyperactive and seeked attention. They prescribed Fanurgon (not sure of the spelling). This only made him doey (you know what I mean not himself) so we took him off that but continued with the sessions. nOver the coming years it was very difficult and to make matter worse we had 3 other boys to look after and they couldn’t understand why he was always in trouble. nHe would have spurts of good behaviour that would last approx. 3months and then he would abnoctious, rude and down right uncontrolable. He eventually got permission from the Education Board in Qld. to leave school at the age of 14. nSince then he has been in and out of jobs, he can’t seem to last at any one place for long. He has been on the Dole more times than he has been employed.
In 2000 he got married. He then had a son who was diagnoised with PKU. He told me that as both parents have to have this gene then that meant he would have had PKU and asked if I knew if either his father or I were ever diagnoised.
I told him I had never heard of PKU let alone know if I had it. nTo make matters worse I was brought up with the knowlege that you had a decent meal at night of meat and vegies, had milk with breakfast and also during the day as well as all other dairy products (he loved yoghurt). nHis son is now 7years old and is having behavioural problems himself and has be diagnoised with ADD and ODD. So the problems go on.
It wasn’t till I was going through all the certificates and sports medals and photos (I was getting together all the boys things to give to them that they had received over their school years)that I came across the Clinic book, I didn’t take any notice of the letter on the cover I just put it in the box with the other things and gave it to him. nAbout 2hours later he rang me and asked about the letters on the cover of this book. I told him I didn’t know what they meant. That’s when he told me that it said PKU.
I was so angry at myself for not taking notice of it all those years ago. nHe has become a person you can count on for a hand, nothing is too much trouble for him. He adores his 4 boys and I might add is a wonderful father. As he says he knows all the tricks because he has used them all over the years so his boys won’t get away with much at all because he is wise to their games. nHe still has a lot of issues and won’t go on the PKU diet. It will cost him approx. $200 to have the test so he said that is out of the question.
I love my boy (as I do all of them) and wouldn’t change anything, because if I did then he wouldn’t be the son I know and love today.
I hope this helps you, if you have any further queries please contact me and I will try to answer them. nGood Luck, nRos.
Hi again Brea Marie,
I was wondering if you might be able to give me the recipe for the ice cream you made as some of the items might be different here in Australia. Also, is it ok to eat sorbet? Is there any flavours you can’t have or is it just the fruit flavoured ones that you can eat? nThanks again, nRos.
I’ll get the recipes to you, but right now I’m at my aunts house babysitting, so I’ll get the recipe once I get home. Yes for the most part it is just the fruit sherberts. I don’t remember the phe on them but I’m pretty sure something like 1/2c of it is fine.
Also, I have a question. Your son has PKU too? He isn’t just a carrier? We know that both of my parents are carriers and that is how me and my sisters actually have PKU. People who are carriers aren’t effected by PKU in anyway, they just carry one PKU gene (you need two to have PKU). In fact my parents didn’t even know they were carriers until I was born and there are many people out in the world who are carriers for PKU and other genetic disorders, but the only way they will ever know is if they have a child with another carrier and have a baby with that disorder. Anyway, I was just wondering because if your son does actually have PKU then he is one lucky guy, most people with PKU who are never diagnosed suffer from severe mental retardation by the time they start kindergarten.
I know for me when I was little even with a level of 8 or 9mg/dl (or 480-540 for the big numbers) I would get very tired, aggressive and cranky…basically you could tell that my level was high. Somebody who is off diet and eating a completely normal diet who has PKU would probably have a level of 25mg/dl+ (again 1500 in the big numbers). So I would assume they would have much worse issues then what I had with levels of 8 or 9. Just curious! nBre
I have used rasphberry sorbet with phenex 11.
I would also use a fruit juice base. nAlso i have tried mangos, ice, and 7-up with the same formula.
Just experiment,but don’t be afraid to try it yourself before giving it to your child. nThere is always an after taste, but some fruits like mangos are a strong flavor and will lessen the after taste.
I hope i helped you out a bit.
I am always on site so feel free to contact me.
Take care, nTracie
Hello, everybody! nMy name is Laura and I have a daughter with PKU. She will be four in December.
It’s the first time i join a forum and it is also the first time i make contact with other people who know the meaning of living with PKU, the little details.
the thing that makes me suffer the most is seeing my daughter looking at someone who is eating a piece of cake or a slice of ham…. It hurts me so much…. I imagine what she is feeling… nWe are from Oporto, Portugal. We
Hi Laura, nMy name is Tracie,and i too am getting ready to start Kuvan. nBreaMarie is very knowledgable on different yummy recipes that ur daughter may be able to tollerate.IE: Cake recipes low in PHE. nDoes ur daughter have a mild case? nMine is very mild,and apparently Kuvan will allow us to tollerate more PHE intake. nWhich is great.That means maybe a little regular foods.As for myself i am allowed 60 grams of protien a day.Which to me is nalot.
Do u have access to sherbert?Its yummy,and kids love it!Also theres a desert called Mocha Mix its just like ice cream,and comes in different flavors. nHang in there.It will get easier as she grows older.I don’t eat meat of any kind,and to be perfectly honest i don’t miss it.
I find myself alot healthier than say my Husband ,and daughter.IE:FLU or COLDS.
I tend not to get the typical virous’.
I hope i have helped some what. nTake care, nTracie-PKU
I am seventeen and I have been on Kuvan for over a year. I have two sisters who are ten and four-months that also have PKU, but they are not on Kuvan. If you would like to private message me or something I would be more then happy to talk to you!