I have a 7 month old boy that has a mild case of pku with his last level being 3.9. I was wondering if any one know of any sites that I can go and maybe order some different kinds of food for him b/c at the grocery where I go there is not a lot to pick from that doesn’t have meat in it. He is not on the special forulma or anything just have to watch his diet so far.
My son too has a mild case of pku and is 2. He does drink a special formula but has a very lenient diet that requires no medical food and up to 1500 mg of phe a day or about 30 grams of protein. I remember the baby jar food days and only being able to give him the fruits and vegetables but my nutritionist assured me that although I wanted him to have more variety he didn’t need it nor did he notice it. The diet probably seems boring to you because of the lack of variety but it is just fine. In just a few short months when the baby starts eating table food you will have more choices.
Formyson- nWell I’ll say your son has a mild case of PKU, 1500mg of phe is alot! Me and my sister are 15 and 8 and we only get 300phes a day, that’s like 5times less then your son. nAnyway, when I was little variety was never really an issue for me. I didn’t start realizing that I was eatting similar foods again and again until I was about 6 or 7 and then it didn’t bother me much. As long as I had a snack when my non-PKU siblings did I was happy.
You could go to cambrooke.com but I’m not sure if your child is eatting just baby food or solids. Anyway if you two want you can email me at email@example.com and I’ll be happy to answer any questions you may have! nBreanna n15 w/CPKU
My son is one and is on a restricted diet but there a few things he really likes for snacks. He loves raisins, Nabisco’s Nilla wafers, Gramhn cracker sticks, dill pickles. Any of these things are low in Phe’s and kids like.
My grandaughter is also 7 months old with a limited diet of special formula cereal and some baby foods now,but doesnt seem to mind. she enjoys eating from the spoon almost as much as eating the food.
My wife and I go through the same thing. Our son “West” is now 3 years old and the variety really gets more limited with CPKU -
I will also echo to go to cambrookefoods.com and purchase the rice and pasta – you can mash it up real fine (or use a blender) and add regular spaghetti sauce to is (Hunts Traditional with no meat added) you can crush up real bananas, you can purchase from WalMart the Hunts Snack Pack LEMON FLAVOR which is ZERO PHE (Banana is 53 PHE per serving).
My wife used to give West mashed up potatoes corn and peas are a bit high in PHE so make sure you use your weight scale – and if you don’t have one – I strongly urge you to get one)mashed up green beans – mashed up carrots.
We used chicken and beef boullion cubes (cut in half) to flavor some of his rice and pasta (remember to use low pro rice and pasta from Cambrooke depending on your sons PHE allowance).
There is a PKU book that lists the PHE – grams – wieght and calories for many foods – it has been very helpful. Purchase this book and it will give you good ideas.
Also go to PKUnews online (google PKU NEWS) and look at what other people are doing. At 7 months you are somewhat limited anyway – but as your baby gets older it will be more difficult to give variety so be on the learning edge now.
Keep in mind my son has CPKU and at three years of age he currently can only have 285 PHE per day and 90 grams of Phenex 2 unflavored formula – so he is quite restricted.
Take care and enjoy that baby!
TC – Father of “West” w/ CPKU (3 years old)
Daffany- I just wanted to say I agree with TC, the Hunts pudding is a good idea. I think it’s Lemon Maranguie(mostly spelt wrong) that has no phe either. And any mashed up fruits and veggies are good too except of course veggies like corn, peas and potatoes which are alittle higher in phe.
TC- West does have a pretty limited diet. Me and my sister are allowed 300phes, so alittle bit more then him. I drink only 45g of my formula (PKU express coolers and XPhe maxamum juice boxes). My sister drinks Phenex 2 unflavored like West but I think she only drinks 60g. nBre
I would just like to let you know that there are plenty of snack and stuff that he can have. My daughter just turned a year and we have been giving her gerber graduate stars which melts in the mouth for easier eatting and they come in lots of differnt flavors and they are between 21-29 mg of phe for 80 of them, so they are very low. We also give her veggie crackers also gerber graduates and that is 17 mg phe for 10 of them, also not so bad.
Im am actually opposite of you im am more scared getting her off the baby foods, bc i dont know what to giver her, i personally believe that it gets harder as they get older bc i have to take her off the baby foods very soon, and dont want to, its much easier. Now i give her melons like watermelon or catalope, those are her favorite.
I keep a book with me at all times and write down how much phe she has had as the day goes buy and keep track and if her amout if very low and she wants something like an arrowroot cookie, which is 20 mg for 1, she can have one if there is enough for her to have it. nBraelyn has had very low low level not even getting to 1 and we have been told to hike it up to 95 mg a day and our dietition told us to try and have that exactly, bc they are figuring how much she can have bc her being so low. But ever since we started that book, no she is at 3.3 they said is where they want her to be.
I hope i have helped you out somewhat!! n~Sarah~ nBraelyn’s mom
Where did you go to find out the Phe content in things like the gerber stars, veggie crackers, etc.? I remember feeding all of those things to my other daughter and didn’t realize that Ashley would be able to have them also. That’s great news for me. What other types of “first foods” snacks have you found that work? I know I’m getting ahead of myself since we just started cereal this past week, but time flies and we will be there before I know it! Thanks! n–Kristi
Kristi- nYou can order a phe book, it is basically what it sounds like. A big book with the amount of phe in foods written in it. If you don’t have this yet I think you can order it from http://www.myspecialdiet.com it was created by Virginia Schuett.
Also, I don’t think alot of things like Gerber foods are in there because that company changes so much. BUT I heard parents speaking before and they said that they actually called the Gerber company and they were more then willing to give the phe amount for their products.
I hope this helps! nBreanna 16 CPKU