Tuesday, January 26, 2010

Dr Arch

Today was our apt with the Geneticist and Dietitian down here because of Beckhams high Phe numbers.

It was good. I feel like I understand a lot of what we are dealing with better. I am still trying to absorb what this means for our life. Its changes it.

I can deal with change.

This is what it means if both of their numbers stay under 300.

No meat, very limited cheese, very limited beans and eggs. She said its just best to not give them a taste for meat while they are young because the reality is that the lower their levels throughout their lives, the better they will be. So mostly they will be vegetarians. That's going to be a big change for us since I have to learn a whole new way to cook. Beans and eggs go in this category too. We just need to limit it to almost none. This will also help keep them off of the diet.

Cheese is not a great food for them because even though the protein level doesn't look that bad the majority of the protein in it is Phenylalanine. Basically limit cheese to a bare minimum. We do pizza every Friday night and they told me that what I can do is give them juice or water instead of milk with that meal to basically counteract the protein in the cheese.

Its going to be give and take. If they eat something with meat, cheese, beans, nuts, or egg they need to have less milk. High Protein foods just need to be avoided.

I was worried about what that meant for growth because I feel like their bodies do need Protein. They said that in the rest of the food the kiddos eat there is Protein and it wont affect their growth. That is why high protein foods need to be avoided, they get enough in the rest of their diet.

We also have to be much more careful about products with aspartame in them. These are DANGEROUS for them.

I w
as very impressed with the Dietitian. She has full PKU. She was a great resource to talk to. She did tell me that in the last year she has found that EVERY gum now has aspartame added to it. So Beckham and Davis will never get to chew gum.

The only other thing that was hard to hear is regarding their missions. When they turn their papers in they will probably (depending on where their levels end up when they are done growing) be limited to serving in the United States, Canada, or Western Europe. I know its not the end of the world but I had always hoped one of our boys would go to the Philippines like John or to Romania. Its just a change. It just takes time to adjust your thinking. I loved living in a poor and desolate country. It really changes your attitude. I deep down had always wanted that for my boys. Developing countries just wouldn't have the resources and testing they need. Plus I guess there is concern with PKU and bad water. But really Italy would be amazing :)

BUT, right now Beckham is over 300. He is at 329. We are redoing the test in a week. Right now he has a cold and its not a good idea to do it while he has a cold since the body burns muscle when its sick which is like eating steak. His levels right now will be elevated no matter what.

In a week we will have a full Amino Acids test done again. If that number is above 300- Beckham gets put on the diet. Thankfully they don't have people count protein grams. More or less he will go on a PKU formula for about half of the milk he drinks. The formula has protein in it but not the
Phenylalanine protein. It will give him enough room with the Phenylalanine levels to stay on mostly normal food, minus the high protein foods.

Davis does not have to go on the formula as of now, his levels seem great. He will be checked again in 3 months.

They said in theory it should work that their levels should be about the same because they are siblings and both inherited the same genes but it doesn't ever work out like that. She has treated 2 siblings with HyperPhe; one on diet, one not.

There are 2 other kids in Southern Utah with HyperPhe and both of them are on the diet.

For now we just maintain and I am going to start weaning us onto 4 or 5 vegetarian meals a week. In reality though vegetarians seem to rely a lot on cheese and beans so its almost like we are going to be going vegan.

We will see where it goes from here. We are SO SO SO blessed they don't have full PKU. I don't want to seem ungrateful. It just changes our life. The way we think. In a while it will be lifestyle and it wont seem like a big deal but at the same time it takes some time to adjust the way we think. Flank steak wont probably be the main course for Holidays since that wont be something they can eat. Sure we could still make it for us and I'm not saying we wont have meat as a family. I just don't see it being fair to Davis and Beckham to make them feel like they get the secondary food. Protein will become a side dish, not a main course for us.

We will all be a lot healthier that's for sure :)


5 comments:

Grandma Caroline said...

Oh Honey,
You will do it I know because you are such a fantastic cook anyway. Your very creative and it looks like it will take a lot of creativity. Dad and I will pay close attention to what we feed them when they are with us.

Raelyn said...

Sounds like you got some good solid information though! KNOWLEDGE IS POWER. Just a few days ago....you didn't have that same knowledge! It will be a hard adjustment...but it won't be long, and it will be the norm! You are in my thoughts, always. By the way, not that it is good...but I thought normal...real sugar gum, did not have aspartame? I could be wrong...

Pam (Haslem) Dana said...

Dang those boys are lucky to have you as there mama! Love ya lady!

Lisa said...

Raelyn-
She said that every gum now puts it in. I haven't checked for myself but she said she went through every gum at the counter and every one had the warning.

Bummer!

Seems dumb if they already have sugar in them!

Mae said...

My nephew Gehrig is allergic to milk. Now that he's older (8) he can drink some but he doesn't like it because he never had it as a kid. So, as the doctor said, hopefully your boys won't acquire a taste for those things (since you're being vigilant) and they won't feel like they're missing anything!

I know milk allergy is way less of a struggle than PKU but I just wanted to give you some hope!