totally off-topic medical questions - PKU anyone?

[Susan]

totally random, and off-scrapbooking-topic, but I had to ask...because this is where I turn first for everyone!

My daughter's boyfriend is flying to AZ in a couple of weeks for a visit, and then to drive back to college with us. Her boyfriend has PKU, or is PKU, or lacks PKU - I apologize I don't even know how to say it.

BUT I do know that protein is a no-no, so it's like having an ultra-strict vegetarian, the kind who doesn't do eggs and milk and cheese. And I am SLIGHTLY PANICKED!

How do I feed this boy for a week? I have started doing some web-research, and tracked down some tips - but I thought I'd ask you ladies if you have any experience with this condition, or could offer any tips/tricks/resources.

He will only be here Sunday-Thursday, but then we pull out Thursday - arriving at college Friday night. Granted he is an adult {22 - YIKES!} so he usually takes care of himself...but I need to be hospitable and have things here that he can eat. My biggest worry is breakfast - we are a big breakfast family, especially when we have house guests. My daughter says "He eats PopTarts for breakfast!" WHAT???

Would it be tacky of me to ask him {I've met him on Skype} for his mother's email address? Would that be totally out-of-line???

I'm just freaking out about this...anyone have suggestions or experience?

THANKS!

okay - back to scrapping....

[tristanznina]

Sadly, this isn't too common, I went to school with a girl that tested positive for this. I would ask him or your daughter what his favorite food is and go from there as well as his preferences.

[AnnaMatrix]

Well, Suz, I can help in one area - he HAS PKU (phenylketonuria - that's why everyone calls it PKU!)

In all my 30 years of doctoring, I've never had a patient with this disease. it does look like most of the sources that came up when I Googled are reliable, but even they don't have much specific information... Avoiding all high-protein foods, but also limiting many carbs - seriously?? What's left to eat??

I have a dietician connection, and I'll contact her and see if she has any specific suggestions, recipes, etc.

Meanwhile, maybe start by asking him what he eats at home, and then asking if it's OK to contact his Mom for recipes??? Perhaps your daughter could intervene and do the actual asking??

I've already learned some new stuff. When I was in Med School, the idea was to follow the strict diet until adulthood - the feeling was that once the brain and nervous system had fully matured, then high phenylalanine levels wouldn't do much harm. Now it's clear that the diet is important throughout life. Interesting for me, but not helpful to you - Sorry!!

I'll keep you posted with what I can find!! Gail

[Basketlady]

Eat out every meal?

Yikes. And I thought a diabetic diet was hard. There are some recipes out there that I found Googling. I'll bet your DD would have some suggestions with how he eats.

Just watch Asparatame--I'll bet you use that. It's in a lot of our foods in our house, because of me and trying to avoid sugar. Be he can't process that.

[Susan]

thanks ladies! I have two really good sites that I found for recipes {both are moms of PKU kids - so that's a start}. My daughter says he pretty much eats salads and fruits and veggies with some breads/carbs thrown in every once in a while.

I'm in panic mode because if you knew me you'd know that I feed people! It makes me comfortable if everyone is eating - hahaha!!! I learned from my grandmother and mother! Company = food!!!

So we are going to read recipes over this weekend and make some shopping lists. Then I asked my girlie to ask the boy for some specifics. Other than PopTarts - hahaha!!! So we'll get there, I'm sure of it.

Thanks Gail for your help! And Michelle I don't do too much aspartame, I hate the stuff. But I indulge in a Diet Pepsi every couple of days so it can't be totally avoided! LOL

[Cat]

Susan, I KNOW we have to be kin somewhere down the line. Company, means food and lots of it......learn this at an early age from my Grandmothers, my Aunts and of coarse my Mom. There has to be every body's favorites and every body's cans and cant's.

I've known anyone with PKU so I'm completely in the dark....and no help at all with recipes.

I've dealt with diabetic diets, low blood sugar diets (DD & a young cousin....of no processed sugars and high protein)...., allergic to dairy, allergic to eggs & cheeses. My hardest diet to deal with was for DS....allergic to preservatives....no store bought foods .....we canned home grown fruits and vegetables .....we got to make his baby food even. Upside to dealing with all of the special diets...my kiddos learned to make healthy choices very young and they still love fresh salads and fruits.


Cat

[yankeegirl]

Oh, Susan, I can relate to having a guest with 'different' dietary needs. My older DD is vegan, and when she visits for a week from CA I go frantic trying to find recipes with vegan foods that are similar to what the rest of us like, so she can eat like us--sort of.....and what a waste of time! Most of the recipes turn out yuck. I buy all sorts of vegan foods that never get eaten. And my stress level is off the charts. So now, after several years of this, I have finally learned: wait till she comes home, take her to the food store, let her decide what she will eat for the week. Like your DD's friend, it is mostly veggies, fruitsand salads, with some tofu and other weird looking things tossed in!
Don't stress. You can be sure that in every home he visits, even his family, he always gets asked what he can and cannot eat. Tell him that you have no knowledge or understanding of this rare disorder, let him share with you what he knows, and go from there! Ask him what you can make that will meet his needs. He might want to prepare his own stuff--my DD makes her own foods, because I will forget and use regular margarine or some seasoning or sauce that will actually make her sick!
The most important thing is to enjoy the visit, get to know him more, and let the rest ride.....I am SURE he will not starve!!!

[Susan]

thanks everyone!!!

I went ahead and got "mom's" email address and she has been wonderful! She's going to send a big ziplock bag of "baking mix" that allows him to have pancakes/waffles...and can also be used to make cupcakes/cake/biscuits. So that helps a LOT!

other than that we will just eat lots of veggies and fruits the week he's here. No protein - that is so restrictive, I can't even imagine. But he's a great boy, and seems to be rather fond of my daughter, and is a big strapping NE farm kid.

hahahah - my daughter said "don't worry mom, his favorite snack is Fritos dipped in canned frosting" - and I just shuddered!!!

So I need to stock up on a few bags of Fritos I guess! HAHAHAH

thanks again!!!

[beverley]

Hi, Susan

Wow, that should be interesting having a house guest with a health issue. I am still dealing with breast cancer. Doing radiation right now, and yes I now have hair growing after chemo.

In April my husband was diagnosed with diabetes II. Interesting and totally changed our lives. I already had a somewhat restricted diet due to restrictions due to my immune system and chemo, learning a lot since I do the cooking and husband is still in denial about certain things that he wants to eat. Finally found some sprouted grain noodles which made making spagetti easier, however, the biggest obstickle with men is that they don't know what a serving is.....The plus of it that diabetic diet has helped him lose weight, me too, but have been walking since diagnosed with breast cancer, and have taken off pounds.

Susan, you just have to let others help you with the recipes, and it will all come out ok. Time will tell, relax, and don't stress out. It is bad for your body.

Beverley

[Deleted]

I'm going to hijack this thread long enough to tell Beverley that it's nice to see her back on the MB!

I hope your treatment(s) are going well!

[Susan]

Hi Beverly - I echo what Diane said "nice to see you"....

It sounds like you've had a lot on your plate lately, but that you and your husband are handling it well! A new diet, a new lifestyle, good walking, drop a few lbs. and new hair! Those are good things!!!

I'm Type I Diabetic, so I sort of know what your husband is going through. While very different there are still similarities. Mine involves an insulin pump - and it's a lifesaver. Literally!! Thump your husband on the shoulder when he wants to argue with you about recipes or portion size. You're doing it FOR HIM!!!

Keep up the great work! I'm glad your treatments are progressing! One day at a time!!!

"the boyfriend" arrives this weekend, and his mother and I have been in contact. In fact, she just sent a box of baking/cooking supplies that arrived yesterday! Low-protein pasta, no-protein baking mixes, etc. It's brand new territory but it's interesting to learn about!

I'm sure there will be pictures of what my daughter ends up baking and making. Low-protein birthday cake is on the docket for next week...scrapbook pages in the making!!!

thanks ladies!!!

[beverley]

Hi,
Susan, Diabetes I, wow you must really have your hands full.
We are learning we go for blood work the middle of the month and it will tell how well he is doing plus a complete blood workup, and I get my total tested too. I have only been getting my stuff
done at the Ephrata Cancer Center. Haven't been tested for cholestrol since end of October when I was diagnosed with breast cancer. Actually since then with the walking and the diabetic diet started in April, total weight loss for me is going over 45 pounds now. Thought would help with blood work and cancer not returning. Weight is a factor in our health issues as we all should now better but don't. Almost down to where I was when I lost before but gained back so now the trick is to keep it off by exercise.

Susan, I took my camera to the Center this week and took pictures mainly of the radiation machine. One girl moved it so I could get the angles they treat me. I am thinking scrapping too and then the grandchildren can see the machine. Didn't get the boost yet. Have three more treatments then boost. Should be done around the 20th. The chemo started Jan 3rd and ended the end of May. Radiation started June 27th. Our lives change so much and we are different people because of cancer. It effects so many people as we are finding out. Our attitude effects our health so positive is the way to go.

Hope your daughter has fun cooking and baking. I have to change the way I bake too. Birthday cake should be fun. We have one coming in September. Maybe angel food cake.

Keep scrapping, I need to get back to it. Haven't done much actually not any since last summer or early fall.

Beverley

[Susan]

oh Beverly I've been diabetic so long I don't think about it all that much. It's just "normal" for me, and my kids - they think all moms are diabetic, and have sharps containers attached to the bathroom closet door. It's the only life they've known, and the one I've know for almost 28 years. NORMAL!

Good for you both though - the weight loss is a big help, I'm sure your blood work will show good stuff!!

Great for you for taking pictures of the machines! KUDOS - can't wait to hear how the scrapbook page comes out. You can put some great journaling in there explaining what went on, and how you felt. And the outcome! I love scrapbooking with a big meaning behind it - HOORAY!

thanks for sharing Beverly!!