I'm BB from Canada. I have 14 month old boy~girl twins. My daughter has hyper phe and will be starting on a diet next week due to some spiking in her levels. They were staying around 3, but have been spiking more and more with the most recent level at 10.6.
I don't know anyone who has ever had PKU and am just feeling a bit lost and alone in this. I don't know what to expect and I feel so completely unprepared. My daughters dietitian sent me a handout which I read, but it doesn't answer any of my questions. It's filled with stuff that I've already read 1000 times.
I just really want to know what her diet is going to be like. I'm so confused right now.
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!!
I just feel grossely unprepared. I've had 14 months to prepare myself for this and by gum I did try…but it still seems so sudden.
Thanks for being so open and sharing about your story and your system…that sounds like something I could do. Hello TUPPERWARE shopping! YAY!–cuz I'm a geek like that =) –
I don't think we could ever be fully prepared. He turned 7 months at Christmas, and went on diet a few weeks before. We also had 6 months.
Look at it this way, we (cause you sound much like me) found out all we could. I never came across information on specific diet needs and breakdowns, as they vary with each case/child. Trust me when I say, it won't take long, and it will all be second nature.
We had previously explained to family Jake's inability to break down proteins, and how we were sure he would be allowed meats, eggs, and peanut butter..those types of food. Even then, everything was still questionable about his allowances, however, we would learn as we go. We thought we were prepared and informed.
December the changes happened for us. The day they said he is going on diet, we felt like we were back at square one. Everything seemed so unclear. So many questions. I am not a dietian, how would I ever know how to feed my son?
Couple weeks later, we saw extended family for the holidays, and knowing he was on diet, we were asked many more questions. We answered them all like pros!! We had information we couldn't have imagined knowing just a month before. I now know that 7 grams of rice cereal contains .5 protein, and will count as 1 point for him. I know that the the reason some cereal says add water instead of add formula or breastmilk, is because the add water, has a milk base in it. I knew that if I watched the labels, I could decide what was low in protein, and can begin guessing on what will be better choices for him. I also learned that on food labels, if its less than .4 grams of protein, they can round down to 0, however if the food contains more than .5 they need to round to the next whole number. Who knew that stuff??
I will admit, I am not self-reliant yet, and am not embarrassed to admit, this is a long learning game, and I still have far to go! I was confident enough to allow him a Rice Rusk over the holidays while his dietian was away, and he was wanting to feed himself, and we were wanting him to try, so we can enjoy our meals. However, I was uncertain enough to fire off an email asking for the reassurance that it was a good choice!
You will be fine. We are very lucky in Canada, we have a ton of resources, not including each other.
Now that my travel arrangements are set I'm actually starting to get excited about all this. I'm just relieved to finally know if she's going on a diet or not. She is. I can't change that, but I can make sure that she gets tons of yummy healthy for her foods!
So later today I will be going through my cupboards, getting label information to bring with me. My mom is really interested in learning all about Madison's diet so she can cook things for her too. I'll admit that cooking isn't my favorite past time, but I'm trying to look at this like an adventure and that makes me actually excited to try some of the recipies I've been finding. =)
There you go Wish we were closer, we could have cooking days together haha. I am excited too, to try new recepies, and food ideas… we are still at jarred fruits…I have a bit to go haha
Let me know how things go for Madison regarding foods, I would love to hear what we have to look forward to
It is most definitely overwhelming for a parent in the beginning. I can speak for my mom when she was given the news that I was born with PKU 26 years ago. THere have been so many medical advances in research, treatment, and tastes of formula and foods. The PKU world is continuing to improve each day.
Let me introduce myself. I am Katie, 26, with PKU and on diet since 9 days old. Following diet (with following both food and formula treatment under supervision of a dietitian) your baby can live a healthy and sucessful life. I recently finished a Masters degree and have been teaching for several years.
Any questions at all, feel free to message me on here – or email me at email@example.com
Hang in there!
Hi! I'm also from canada (alberta) and have a 10 month old girl with CPKU. It is a wild ride this pku journey and certainly has its ups and downs but it is 100% doable- especially with all of the pku foods options that are available now!!
Since my daughter has CPKU everything- even applesauce gets to be measured and weighed. Right now she is able to get 40 mg Phe so in the morning she gets some applesauce (6 mg) and then for lunch she gets some low pro crackers (7 mg) and some veggies (10) and then veggies and a little bit of fruit for supper (17) .
She doesn't get much but at this point it isn't an issue- she doesn't eat more than 7 peas and 15 kernals of corn anyways!! Once she gets older things like 1mg pku pancakes and pku pasta 35mg will help to provide the filling parts to her meals and then the fruits and veggies will add the flavor and nutrients.
It will be ok- honestly! And we're all here to help support you – you can do it!!
AND my advice – get the dietwell app for ipod/iphone – it is amazing!
Thanks so much clenk! =)
I'd definately look into that app if I had an iphone….or a cell phone for that matter…is the same app availaibe just online?
I just wanted to add, for anyone reading the thread from top to bottom.
Our son is Hyper Phe/Mild Pku. I believe that makes a difference.
I was reading some posts last night, old stuff, just to help educate myself. My calculations are certainly easier and less to take into consideration, then those who are CPKU. I don't have to measure any Phe levels. I simply count proteins that he consumes, and ensure they stay in the low range set out for him. I have some measuring, but it seems to be more about volume control then phe levels. Much easier for us.
(I just didn't want someone who was CPKU, to use my way of counting, as it certainly would not be accurate for someone who measures Phe, maybe it would give an estimate, but that wouldn't be good enough)
Turns out her diet is not so bad.
She can have unlimited fruits, veggies and low protien starches.
ONE high protein serving a day like 1/2 cup cream soup or some cheese or milk, stuff like that.
No meat, fish, poultry or eggs.
Completely do able I think. Except I'm running out of ideas on what to make for her now. And I worry about getting enough calories into her every day. And I worry that her formula fills her up too good to eat enough.
This is still new to us as well,however, maybe someone can clarify for both of us…
I thought that was part of the idea of the formula/shake. Was to fill them a little, so they are eating less, and there for consuming less proteins. It was a suppliment, kind of like an diet Ensure for breakfast, to replace the meal.
Maybe I just assumed that??
Can anyone clarify this please?
about my child that he is 16 month old and he consume 55 gram of comidaB , he never feel full with the milk . the milk just give him protein and some vitamins and cant remove the hunger . when he drink milk , he cries and want some more milk from me . certainly my son has agood appetite for every food and never is satisfied with these little options .
Do you not have pku low pro food available? Here we can order pasta and pancake mixes and all sorts of food to fill those little bellies that are specifically low phe.
I don't think the formula is a meal substitute- more like a milk substitute. There are lots of low pro foods on the market . you will be amazed. The other day I made low pro apple sauce mini muffins there is less than 1mg of PHE per muffin!!! The problem is that you need to do as much fruit/veggies and you can and then suppliment with low pro foods.
If she can have unlimited fruits and veggie she will be fine for SURE (many of us on here have children with CPKU who have to measure and regulate everything- my daughter will ever be able to just eat a banana for example or most green veggies. She will live off of apples, strawberries,carrots, cucumber and a small selection of other fruits/veggies)