Hi I am new to this site, me and my hubby have a 4 year old with CPKU she was diagnosed late at 5 months old. She is doing well now. We also have a 2 year old without PKU and I am due in 3 weeks. I am looking forward to chating with everyone.
I just wanted to say I’m glad to hear that your daugther is doing good! I also thought I would mention I found this PKU game online for little kids, my sister who is 8 (and also has PKU) played it and loved it! My sister got my two other sisters (both non PKU) play this game aswell and they really liked it. So I posted it incase any parents want to check it out, I think alot of little kids will really like this game. I think I posted the website in the parents section if you wanted to check it out. Also, congrats on your new baby (even though the baby isn’t born yet). nBreanna
hi,i think that what you say is very in depth,and i think you should be very proud of yourself for knowing so much about pku and helping others on here xx
Me? If your refering to me then thank you !
I figure it’s much better to use my time helping people with PKU instead of complaining about PKU. After all there are alot worse things and complaining won’t take my PKU away either. nBreanna
Hi! I am a PKU
Hi Monalisa, nHave you had success finding recipes? There are some on this website. There is also a company that produces low-protein foods and also sends out recipes per email, Cambrooke Foods.
Hi Janice nits great to hear that your pku child is doing well. my oldest child also has pku and then i have 2 others that dont have pku, not that it ever really worried me to much if the others had pku as well. i think it would have been easier if one of the others had pku as well. are you concerned about having another child with pku at all?
Ive never realy had any support with my chldrens pku. ni find it realy difficult sometimes my eldest is always hungery and i cant get my youngest to eat its a nightmare. does anyone have any ideas as my dietician sugested allowing kaitlind eat things she realy should have wich causes problem as alvin is always asking why she can have them and not him. nany sugestions will be arecated
Hi Chinababe nMy name is Keisha and i have a six year old son who has pku, when he was about 1 to 2 years old he went through a stage where he really didnt want to eat and his levels went too low, his dietician also suggested that i give him something he really shouldnt eat to help bring his levels up, so i gave him a slice of normal bread and it has taken me 4 years for him to forget what it taste like and has only just started eating low protein bread. im not sure what kind of low protein foods you have, but our low protein spiral pasta looks and tastes the same as normal pasta, so when Zach’s levels go too low i genrally use that to help bring them back up to where they are ment to be, he dosnt know the difference. ni hope i have been of some help.
You could try to do what my mom did when I was little and litertally wouldn’t eat anything. She would add alittle bit of regular milk into my formula to get all of my phes in. I believe she said that it was 50phes for 1 ounce of regular milk but I would feel alot better if you check with your doctor or dietitians if you decide to try this because I’m not positive and would feel awful if it was more phes and I made your childrens levels go up.
But that way, I didn’t taste the milk in my formula so my mother never had to worry about me getting attached to the flavor and taste. nBreanna n15 w/CPKU
what formula were you on when you were little? i think milk in maximaide would be gross! but analog may have been alright
Well I was on alot of different formulas. I was on products from Phenex, Phlexy-10, Periflex and now I’m on XPhe maxamum and PKUexpress coolers by Vitaflo. I think at the time when my mother mixed milk into my formula I was on Phenylade. I’ve drank orange, vanilla, chocolate and strawberry at one point or another so I’m not positive which flavor it was, but Phenylade had a strong taste so I didn’t taste it. nBreanna n15 w/CPKU