I can only tell you what I know, and I am by no means an expert!
However, I do know as a mom, it was so scary in the beginning, that any bit of information was helpful, so I will my best
We are Canadian too, from Ontario. I understand that each province varies in what assistance they provide, as well, it seems each clinic even in the same province varies in theories on what is best.
Let me start by saying, that I am certain we use a different form of counting Jacob was first diagnosed as HyperPhe as well. It wasn't until about a month or so ago that his numbers rose too, and they decided he was Mild PKU and they were going to proceed with a diet. For us, his numbers were staying about 300, however exceeded 600, and they intervened. (this is where the 3 and 10.6 have me a little confused, but I will assume it is just a different way of measuring.. maybe ours is X100 haha..)
Jacob is still younger than your twins, and therefore not on as much food as you will be facing, so that may make it slightly easier for us to make this transition, but its just a guess.
Our dietian is determining his allowed amount of protein and takes all of this into account. I have asked what amt of phe he is allowed, however, I understand it is still in the works, as she tweeks it. We don't have this number. They continue to do weekly blood spots to help her in narrowing the range.
Formula – Jake was born 3 months early, and transition to formula while still in hospital. (ie not a breastfed baby). He now receives Phenex-1 from the specialty food shop in toronto (where all the low pro food will come from for us) To give you an idea of how it affects his formula, currently, we mix 85 grams of his original formula (parents choice from walmart) to 48grams of Phenex-1 formula. Then we mix with the amount of water they tell us, and voila, milk for the day They want us to ensure he drinks this amount of formula a day, which is sometimes tricky as his appetite seems to come and go, which is normal for a 6 month old.
There is also a product called Phenex 2. We have it in the cupboard, but we aren't using it yet. The dietian also ordered stuff called Polycose, and it would be added to a base like pedialyte, but only if he was ever sick, and required full fluid diet. Its there JUST INCASE type thing. We have close contact via email and phone with our dietian. Should we feel that he is consuming too much, or not enough, or he ever goes to full fluids, we call her, and she makes all necessary adjustments.
Food — Obviously at this stage, he is getting cereal in the form of rice and oatmeal. As well, he is starting regular foods. If you don't have a food scale, you will need one!
This is the number we do know. He is allowed 4-4.5 grams of protein / day from all sources other than his formula.
Cereal – Rice 21 grams – 1.5 proteins. Oatmeal – 21 grams = 3 proteins.
Fruit – For us we can consider it free it provides calories which he needs and this offsets the amount of protein (phe) I am not certain if all PKU'ers can have fruit as free, but Jacob's levels allow for it.
He is limited to not more than a jar a day, but that is still very acceptable based on what he is consuming. I think once he is eating more, it may just get measured and assigned a value, so he doesn't over do it, but maybe it will always be free, as he will be bigger too
Veggies – are higher in Phe from our understanding. The dietian has asked us to start on fruit, and they will adjust his formula shortly, to allow for the introduction of veggies. (The will use more low pro vs his regular formula)
(I will admit, this had me worried, cause my other children started on veggies. With the dietian approval, he tried potatoes for Christmas dinner with us, and hated them… I am hoping veggies aren't going to be a problem)
You can do this! Anything is possible. It is for our children so we make ways to make it all make sense. Ask as many questions as you need to. I swear in the firsts couple weeks, our nurse and dietian must have thought we were nuts, and assumed that they were on speed dial. Now I try and email, so I am less bothersome, but heck, I need to know what to do to provide the best plan for our son. Thats my job
It seems scary now, but you can do this. I will tell you our methods, in the hopes that it may help you, either by using the same, or helping you figure out a better plan, that works for you and your family.
My partner, gets very frustrated with all the measurements and numbers. I have figured out that each half protein is worth 1 point. Therefore Jacob is allowed up to 8-9 points a day. I have played with math (cause I am a bit of a geek like that) and tried to simplify things, in an effort to make this all easier for us.(we also have two pre-teen daughters who like to be involved) Using the little baggies you can get, I premeasure an entire package of his rice cereal at a time. Eg Some rice at 14 grams, others 21 grams. Then much like the weight watchers program, I label it by item(eg Rice), as well as points. (14 grams = 2 points as it is one protein, 21 grams =3 as it is 1.5 protein) Then we simply keep track of how many points he has eaten, and what he has left, as we grab the next meal for him. I can only hope this will continue to work as the lists of foods get broader.
Ex diet for Jacob
Breakfast – Rice 2 points (14 grams) + fruit
Lunch – Oatmeal 3 points (10.5 grams) + fruit
Dinner – Rice 2 points (14 grams) + Rice Rusk (so he can happily feed himself, while we eat!)
Bedtime Snack – Rice 2 points (14 grams) + fruit
Total 9 points.
Now, if he got up late, or was eating at a later schedule, and would only eat 3 meals a day, instead of 4, then we may have two 3 point meals, and one 2 point. (He is at 8 points, but a range of 4-4.5 is acceptable, so we are still ok.) Hopefully, as his selection of food increases, we can still use points, and just change the diet up a little. It is also the understanding, as he increases food choices, they will increase the amount of protein (phe) he can get from solids and change his formula to have less regular formula, and more phenex 1 in the recepie.
My hopes is this program will be easy enough as Jacob gets a little older, that he can actively take part in his food choices. Obviously the math will be me, however, he will be able to see the point values and know what he can have to eat.
We have taken more care in checking the labels on EVERYTHING to see how much protein is in things, by serving, to kind of make guesses at what will be good choices as he grows up and wants more foods. Some of the items will blow your mind!! Unbelievable the things that are high in protein and we never realized…its not just eggs, peanut butter and meat like momma told you to eat to increase protein haha. The MumMum Rice Rusks have VERY little protein, and our dietian has agreed to allowing Jacob having them for free. Unless he eats more than 4 in a day, in which case it is only a half point anyway. (Currently he eats one, and I think the dog still gets her fair share of it — They are convienently packaged in twos)
I hope I helped more than confused. If you think the point program would work for you, but arent sure how to break down the math, by all means, send me a message, and I will do my best to help out.
It's not nearly as bad as I thought it would be, and if I confused you further, please accept my apologies, and don't panic. It is completely managable!!