By Holly on 1/27/2009 4:33 PM

Due to my condition (thankfully it decided to go into remission late last week), I am facing some dietary changes. Both my specialist and primary care doctors want me on more of an anti-inflammatory food plan. I am having to limit, or not eat at all, many of the foods that Owen lives on (potatoes). However, I have been encouraged to eat less wheat based foods. Does anyone have a list of Gluten Free or other Wheat Free foods that are also PKU safe? That would help us to have more common ground in the kitchen....

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By Holly on 1/27/2009 4:20 PM

Owen has been "naughty" and has not had his levels checked since October 31st. With him being on Kuvan, this is not recommended. However, he either wised up, or got tired of my nagging, and had it checked. He is still holding steady at 8. This is a little high compared to when he first started the new formula and Kuvan. He had three weeks at 6 and one week at 4. He felt lousy all of those weeks. For someone who was at 11 to 13 on his old formula (which we wasn't taking enough of), 8 is good. For someone on Kuvan,...

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By Holly on 12/31/2008 1:12 PM

I have been off of the blog for a little over a month. This was mainly due because of another injury. I have a form of Joint Hypermobility Syndrome and this latest injury was the worst yet. It left me with several sprained muscle groups in my hip and got the femeral nerve involved. Four weeks on crutches and I am just now coming around. Why is this important for the blog? Because Owen will always need special food and being on crutches, plus the pain, put us in a hard place.

 

Fortunately, I make...

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By Holly on 11/28/2008 9:58 AM

The holidays can be a difficult time for any adult., but especially so for one on a special diet. Thanksgiving dinner was at our house and here are a few things I did to help out:

 

Make the mashed potatoes with rice milk instead of real milk. No one knew the difference and were surprised when I told them at the end.

 

Use margarine instead of butter for potatoes or sweet potato recipes.

 

I make the stuffing with regular bread (no fake bag stuff here). When I made the...

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By Holly on 11/9/2008 8:19 PM

Yesterday we went to the DC Green Festival. Among all the free samples and information we found a vegan smoothie recipe. We modified it, changing the soy milk to rice milk. I made it for breakfast and it was a big success! Owen even wants one for breakfast tomorrow. Here it is: A handful of whole frozen strawberries, one sliced banana and 1/2 to 1 cup of rice milk (depending on how thick and how much you want). Blend until smooth. We both loved it.

 

Getting Owen to eat breakfast has been a constant...

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By Holly on 11/2/2008 5:17 PM

We had a fabulous trip to and from MN. Owen's sister got married on the 25th. We were blessed with a beautiful day.

 

Traveling with a PKU child is difficult. It is the same with a PKU adult. First,make sure there is enough formula for each day and that it is easily accessible. Up until recently Owen was on a formula that came in packets and had to be mixed with water and placed in a blender. To take it on the road meant handmixing, clumps in the drink and generally, Owen avoiding the stuff at all costs. If the finances were available, we would order a case of the Maximum X PHE "juice" boxes instead. That helped, but he would still not take the full amount each day. This trip was MUCH BETTER! Yes, the Vitaflo Coolers take up more space than packets, but the convenience cannot be beat. We put what we needed for the drive to MN in a small carry-on style bag with other drinks and snacks. All Owen had to do was reach behind the seat and grab one. We brought an entire case for the six hotel days and did the same bag method for the trip home.

...

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By Holly on 10/21/2008 8:23 PM

Owen continues to do well on Kuvan. His levels are back down to a 5 after a week at 7. After some discussion during the Summit and a couple of emails to his nutritionist, the decision was made to up his formula intake. We are doing this in hopes of breaking the awful cycle his body has been in for over 10 years. He is so thin and anytime he puts on just a little weight, his body goes into overdrive and attacks his muscles and such. It leaves him tired and achy and weighing less than before. I have seen him go...

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By Holly on 10/16/2008 7:11 PM

Ok, so this is not about the Summit, but it is big for us. Tonight Owen made a giant step with his food aversions. Because he is not on the strictest of phe levels for his diet (a generous 1000) it allows me to modify "normal" foods. Tonight, I wanted to make organic burger helper. I use ground turkey because of my IBS. Owen has an aversion to cheesy taste and creamy textures so I offered to make him something else.  He surprised me by saying he was going to have what I was making! So, instead of organic milk...

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By Holly on 10/14/2008 7:52 PM

So much happened at the Fall PKU Summit that I have no idea where to start. I should start with the food! The chefs at Disney World Resorts went above and beyond. They ordered all kinds of items from Cambrooke and those with PKU ate like kings and queens the entire weekend. Of course the rest of us did as well. We had a fabulous dinner at the Living Seas Salon (behind the scenes at Epcot) and had front row seats for the fireworks on Friday night. Saturdays meetings went well and Owen and I spent the afternoon...

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By Holly on 10/12/2008 6:32 AM

We are currently in Florida attending the Fall PKU Summit. Many good things are happening here and I can barely wait to have more than a few quick moments to sit down and update everyone on what is going on. Owen and I are very excited about all we are learning and all that is being done for PKU patients and their families. I will post a more detailed account on Monday or Tuesday.